tag:blogger.com,1999:blog-69282019557217015912024-03-08T08:50:30.384-06:00Dave's Great AdventureI'm Dave. In 2002, I got sick. I didn't get better after a couple of weeks so I went to see a doctor, which I almost never do, because I'm a physician, too. When I found out that I had an incurable leukemia, I began recording my thoughts and emotions about the disease, and sending them to my family and friends in a series of messages we called "Dave's Great Adventure." I'm having more therapy so I'm resurrecting my old DGA messages, adding new messages and putting them in blog form this time.Dave Eckberghttp://www.blogger.com/profile/08992997044938074424noreply@blogger.comBlogger137125tag:blogger.com,1999:blog-6928201955721701591.post-88465953926598877032018-02-04T13:00:00.000-06:002018-02-02T13:52:50.416-06:00Intro To My StoryThis is the story of my finding out I had an incurable and lethal form of leukemia. It starts in early 2002. I've been lucky, as I've lived more than twelve years with the disease, which is longer than the average longevity for a lot of folks. I never thought I'd live this long! This story starts out with a series of messages I sent to my family regarding my illness, before I even knew what I had. Then it goes through a lot of anguished and fearful messages as I realize what I'm dealing with. You see, my dad died of the same disease after having it for five years. These short messages start in February and go up to about July 2002, when I started my first round of chemotherapy.<br />
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When I finally started my first round of chemotherapy in July 2002, I began a journal, at the suggestion of a colleague, which I sent out to concerned friends and family. I included a lot of medical information about the disease and its treatments, my fears about my future and what was going to happen to my wife when I died, plus a lot of personal information that concerns things not generally discussed in public; my depression, references to sexual dysfunctions, side effects, diet and weight problems and, uh, excretory problems (all in good humor of course, without many clinical details). I'm a physician so I'm pretty open with these things. They're what I dealt with in caring for patients for decades, after all. There are many deep, thoughtful passages about death and dying, but there are also a lot of very humorous references about my treatments and my many misadventures (such as the time I accidentally pulled a central line out of my chest while in the shower--"Dumb ass!" I called myself) that I experienced during my therapy. There's rare bawdy humor, too, but I tried to restrain myself, not being sure exactly who was reading my stuff. You may find some of these things interesting, funny, sad, boring, too clinical, or whatever. It kinda reads like a book, and each "verse" (as I for some reason listed each passage) tends to build on the previous ones. Our daughter convinced me that e-mails were "so last-century" and she encouraged me to start this blog. So here ya go!<br />
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It presently consists roughly of seven sections starting with the compiled messages to my family from early 2002. The divisions between are roughly as follows:<br />
Prologue-- early 2002 up to about July 2002.<br />
Book One-- The First Chemotherapy Experience, July 22, 2002 until October 2003<br />
Book Two-- Relapse, and The Second Chemotherapy Experience, With Stem Cell Collection, October 2003 to about October 2004 with a few updates thereafter<br />
Book Three-- Starting in February 2008, More Chemotherapy and Some Experimental Stuff, with introductory information in the letters leading up "Book Three."<br />
Book Four--It's Baaack! Starting March 2010.<br />
Book Five--PCI 32765; the Bruton's tyrosine kinase inhibitor. Starting March 2012<br />
Book Six--Venetoclax. Starting about August 2016<br />
Book Seven--The Transplant, starting in January 2017<br />
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I welcome e-mail questions about my journey and frequently have addressed them openly in my letters which have been sent out across the US, Germany and Scotland to many concerned friends and family. I can be reached at <a href="mailto:dreck@prodigy.net">dreck@prodigy.net</a><br />
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I hope to use this blog to keep all you folks who are reading this updated from time to time as I progress into my adventure and experience more and different treatments.<br />
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<b>A DISCLAIMER</b>: This is rather like the old TV ad that went, "I'm not a doctor but I play one on TV." When this series of stories started many years ago, it was sent exclusively to close friends and family. Gradually it was resent to more and more folks who had an interest in how I was doing, until I had a couple hundred folks or so on my mailing list. But, then my kids convinced me that it would be easier to put it all on-line so that all my correspondents could access it more easily. And, in fact that has happened. But what has also happened that, through the miracle of Google searches, many, many people around the world, who have an interest in CLL, have found my stories and have inquired about how I'm doing and asking questions or for advice on what they should do, as many of them also have CLL. I welcome these questions and inquiries but I must state that, though I have been dealing with CLL for almost 15 years now, and am a veteran of multiple kinds of treatments, and read a lot about CLL, and am a physician as well, I can't really be considered an "expert" on CLL. I am very happy to help folks go through their options and offer what I think is accurate advice and information about current treatments, but there are so many variations in this disease, and so many factors to consider, that I must make clear to anyone reading my stories that my advice is just that, and cannot be considered a clinical recommendation. Any options for treatment must be discussed with your doctor, and hopefully, with a leukemia expert. When I read through the papers presented at the clinical oncologist meetings, I am overwhelmed with the amount of information about my disease that I don't understand. There is so much information out there that no one person can know it all, especially a retired OB-GYN doc like me. But, I sincerely will try to help anyone who asks to understand what their options are and help them to know what questions they ought to ask before beginning treatments. Thanks for taking the time to read through all this!Dave Eckberghttp://www.blogger.com/profile/08992997044938074424noreply@blogger.com0tag:blogger.com,1999:blog-6928201955721701591.post-63365791199300075542018-02-02T13:47:00.005-06:002018-02-02T13:47:54.015-06:00A Brief Update<div data-setdir="false" dir="ltr" id="yui_3_16_0_1_1517597599360_26070">
A Very Brief DGA Update</div>
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February 2, 2018</div>
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(Just
a quick, partial update from my last couple of months [for our
non-Facebook friends; they already got this]. I hope to have more
complete update out very soon now that my higher mental faculties seem
to be functioning better).</div>
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<br /></div>
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It's very hard to believe that it has been 330 days since my
transplant. Some days it seems as if it wasn't very long ago. Other
times it feels like it was sometime in the last decade.</div>
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The
last time I sent an update, in October, I was whining about how lousy I had been
feeling for the previous months. Well, there's nothing like a trip to
M. D. Anderson to give you a better perspective on how you're doing.
And we go there every four weeks at our current schedule. I've noted
this for years, but no matter your situation, you'll see folks whose
problems are much more dire and urgent than yours. There are folks
missing limbs, noses, parts of their faces, folks with tubes coming
and going in and out of random places in their bodies. Hairless,
emaciated patients huddled under blankets, people carrying barf buckets
with them in their wheelchairs. </div>
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I really have no problems. </div>
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Since
my last message I have improved greatly. I'm not yet well, but much
better. I no longer feel sick every day. My appetite has returned
(when we left home last year for Houston, I weighed about 186; when we
returned last September I weighed 164.) I'm still weak, but stronger.
I'm able to walk more now. I set a "PR" yesterday when I walked 1.2
miles, in 25 minutes. I know... not very far and pretty slow, but for
a guy who was in a wheelchair just last August, it's a big
improvement. </div>
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I
still have some problems and will have for a while. I'm still anemic,
and my blood counts are likely to stay low as long as I'm on some of
the medications I have to take in order to hold off the graft vs. host
disease rash which had been driving me crazy. But the rash hasn't
returned since August now. But I'm still taking about 30 pills daily to
prevent my body from rejecting the grafted stem cells, and to prevent
the grafted stem cells from rejecting me (with the GVHD). </div>
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But
if the the 30 or so pills I take daily, about 2/3rds of them are taken
to prevent side effects of the other 1/3. Crazy, huh? For example,
I take 2-3 Imodium daily to control my gut from the nine tablets of
magnesium oxide ( a laxative kinda drug) which I have to take to
replenish my serum magnesium levels, which are washed out by the
tacrolimus I take to prevent GVHD. Or, I take stuff called Ursodiol
twice daily to protect my liver from the effects of another med,
voriconazole (an antifungal drug) which I take twice a day to prevent
fungal infections I might get because of the immunosuppression caused by
the steroids and the tacrolimus. And it goes on. I recently had to
start blood pressure meds when the steroids I'm taking kept causing me
to have scary high blood pressure readings (200/120 and such).</div>
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But
my kidneys are struggling under the loads of trying to process all
these drugs and the antibody infusions I've been getting monthly during
the cold and flu season. The kidney functions have been deteriorating
almost weekly since October and now are down to just about a third of
what they should be for a guy my age. I really don't want to go through
a stem cell transplant only to end up needing a kidney transplant.
Though, as I've noted, my stem cell donor would be a perfect match.
Do think she'd give me a kidney too? š</div>
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The
really good news is that over the last couple of months we've been able
to stop our thrice daily full-body steroid cream applications, which
were a total pain in the butt, and we've been able to taper the
photophoresis treatments, which started at three times a week, to just
two times every eight weeks. I'm hoping we can stop them entirely
soon, and perhaps remove the Central Venous Catheter from my chest,
going into my right heart, where it's been for almost a year. I'm
lucky it hasn't gotten infected in all that time. We've also managed to
slowly taper my steroids down to just 5mgs every other day. That's
almost nothing. Hopefully they'll go away entirely soon so we can start
trying to taper some of the other meds, like the Jakafi, which makes
me anemic and has been the cause of all my transfusions. </div>
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One
of the bigger issues we've been dealing with recently is just being
isolated. Being so severely immunocompromised, we stay away from
people and crowds. The flu is rampant in the DFW area and there are
reports of people dying almost daily. The reporters almost always add
the comment, "This person was elderly with underlying health
conditions. " Well, I've been government certified as "elderly " and I
certainly have the worst of the underlying health issues, taking all
the drugs, as I do, to suppress my immune system. That, of course,
makes me incredibly susceptible to just about any virus I may come in
contact with. And if I come in contact with the real flu, the H2N2, I
think it is, I'll join those "died of the flu" numbers you see on the
local news. </div>
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One
last item to report. Having leukemia makes one susceptible to getting
other cancers. Being immunosuppressed exacerbates the situation. As a
result, in recent months I've developed a squamous cell skin cancer on
my right cheek. On my face, that is.... A biopsy shows it to be a
shallow lesion which hasn't spread deeply so we're trying to treat it
with a caustic cream called 5-fluorouracil, or 5FU. Kathy calls it "the
FU stuff." If it works, we're good for now. If not, we'll have to
hack it off my face. </div>
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It's always some damn thing. </div>
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And
that's a more than complete update on how I'm managing these days.
We'll be going back to Houston again in two weeks. Hopefully we'll see
some improvement in my kidney functions and we'll be able to taper me
off some more of the drugs. </div>
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Bye now, Dave </div>
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Dave Eckberghttp://www.blogger.com/profile/08992997044938074424noreply@blogger.com0tag:blogger.com,1999:blog-6928201955721701591.post-12732048567650985732017-07-02T13:48:00.000-05:002017-07-02T13:48:31.672-05:00The Transplant Went Great. Why Do I Feel So Sick?<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4459" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4460" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">Daveās Great Adventure</span></div>
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<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4462" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">Transmogrifying From Leukemia to Stem Cell Adventures</span></div>
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<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4464" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">July 2, 2017</span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4467" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4468" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;"> </span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4469" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4470" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">The last time you got a synopsisā¦this time you get a DGA āWar and Peace.ā (Has <i id="yui_3_16_0_ym19_1_1499020175213_2152">anyone</i> ever really read that whole tome?)</span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4471" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4472" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;"> </span></div>
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<div dir="ltr" id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4473" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4474" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">I have to admit, again, that I completely underestimated what this stem cell transplant would take out of me and what Iād feel like afterwards.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4475" style="margin: 0px;"> </span>For the longest time I feared the transplant, was almost panicked at the thought of going through it, but as I approached the actual procedure, I thought that things ought to go pretty well.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4476" style="margin: 0px;"> </span>I had few other illnesses to complicate the procedure, I had a great, ten out of ten, donor, had achieved Minimal Residual Disease (MRD) state (very little disease left in my marrow for the transplanted cells to have to deal with) with the use of the wonder drug, venetoclax, I was in one of the very best transplant centers in the country and had, as my doc, Dr. Issa Khouri, one of the pioneers in this business.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4477" style="margin: 0px;"> </span>He was doing this stuff back in 2002 when I first got sick.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4478" style="margin: 0px;"> </span>He knows his stuff.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4479" style="margin: 0px;"> </span>I actually thought (or fantasized, actually) that after a possibly rough month in the hospital, Iād be up and around seeing the sights of Houston for the rest of our putative, predicted 100 day stay!</span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4482" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4483" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">And then the transplant went so amazingly well.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4484" style="margin: 0px;"> </span>The infusion of the cells didnāt cause any problems at all and in the first thirty days, they completely took over my marrow, eliminating the residual leukemia cells, changing my blood type to hers, and building up my weakened immunity (actually, she replaced<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4485" style="margin: 0px;"> </span>it with hers.).<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4486" style="margin: 0px;"> </span>And, other than feeling weak, I was doing very well indeed.</span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4489" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4490" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">Yeah, I hit a few bumps along the way.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4491" style="margin: 0px;"> </span>I wrote up a quick synopsis a couple months ago highlighting the most exciting features of these bumps, but Iāve got to say now, and Iāll say it again later, my problems, GVHD rash notwithstanding, are trivial for a transplant patient.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4492" style="margin: 0px;"> </span>Iāll touch on this again shortly. Back then, everything was exciting to me because I'd never had a stem cell transplant before!</span></div>
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<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4494" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;"> </span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4495" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4496" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">Iāve been keeping mental notes about what has been going on here, with all the good intentions that pave the road to Hell, intending to write them down.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4497" style="margin: 0px;"> </span>But the story keeps getting ahead of me and I havenāt caught up.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4498" style="margin: 0px;"> </span>So, Iāll put another bit of a synopsis together (can a synopsis be way, way too long?), stitching together various communications Iāve sent out to various folks in the interim.</span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4501" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4502" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">My communications in recent weeks have been in the form of scattered emails, Facebook updates, texts and more, none of which went to my DGA community, which in any case, has probably gotten bored with the whole thing waiting for updates that never come.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4503" style="margin: 0px;"> </span>But, Iāll try to catch you up with snippets of stories Iāve managed to send out in recent weeks.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4504" style="margin: 0px;"> </span>These are collected below in journal form, in easy-to-read (or completely ignore) āchapter-lettes.ā </span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4507" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4508" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">After my outbreak of the GVHD rash, which was absolutely the most miserable, itchy rash Iāve had in my life, things began to be getting better rapidly on the huge doses of steroids I was taking.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4509" style="margin: 0px;"> </span>Remember, I was taking 160 mgs/day of prednisone, which is probably eight to ten times as many steroids as Iāve ever had in my life to treat an acute bronchitis, backache or anything else.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4510" style="margin: 0px;"> </span>Heck, with that many steroids, anything would feel betterā¦for a while. My appetite came back enormously and I began easting furiously.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4511" style="margin: 0px;"> </span>I went to a local ice cream shop named āHankāsā and had daily 16oz malts.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4512" style="margin: 0px;"> </span>Life was good.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4513" style="margin: 0px;"> </span>I even sent out a joke Facebook update saying Iād applied for and gotten a job there. (If youāre ever in Houston, and love homemade ice cream, try Hanksās, a little family run shop down on South Main.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4514" style="margin: 0px;"> </span>Sixteen varying flavors, all great, and wonderful folks.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4515" style="margin: 0px;"> </span>Try their ācustomā Dr. Eckberg chocolate malt!).<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4516" style="margin: 0px;"> </span>Anyway, this real Facebook update followed;</span></div>
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<b id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4520"><span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4521" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">DAY 59</span></b><span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4522" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;"> <b id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4523">UPDATE (</b>May 5<sup id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4524">th</sup>)<b id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4525"> (All updates are counted from transplant day, Day Zero, which was March 7th)</b>. So, no, I'm not really working at Hank's, but I support them a lot. I wouldn't be allowed to work there or any public place anyway because of all the folks who wander in and out, exposing me to whatever infections they might have. Plus, I'm much too weak to stand behind the counter. If you see me in pictures, I look great, hearty and... healthy. When folks come to see us they invariably tell me I look wonderful. And I can fool you, too, if I'm standing still or sitting on a chair with my hands hidden. </span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4528" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4529" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">But I'm not well. I'm very weak, I can't walk so much as hobble, and my hands shake most of the day. I cannot write anymore. I owe a lot of Thank You cards for folks who donated to my TNT (Team In Training) fund that Megan set up for me (DGA story to follow at some point) and when I can again write, I'll get them out. The problem is the GVHD rash and the steroids we have to use to keep it under control. Steroids are great meds but with lots of side effects. When I first got my GVHD rash, I started on huge doses of prednisone and then we tapered the dose rapidly. But after having reduced the dose from 160 mgs/day to 60 mgs/day, the rash returned.</span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4530" style="margin: 0px;">
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4532" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4533" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">When I started on the steroids, knowing they were going to weaken me, I started an exercise program of walking around the neighborhood, climbing stairs and such. But instead of maintaining my strength, I was getting slower and slower. And weaker. Finally, about ten days ago, as I was climbing the stairs in the apartment complex, my legs gave out. I collapsed on the stairs and I could not, absolutely could not- could not- get my legs to lift me up. Fortunately our friend Lou was with me to help get me upright so I could get back to the apartment. So, now I'm enrolled in a PT program which is just kicking my butt, so weak are my muscles. And despite the prolonged use of the steroids orally and the three times daily smearing on of full body steroid creams, the rash persists. </span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4536" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4537" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">So, we're changing plans. My doc is getting me into a treatment called photophoresis. This is a procedure friend Stacey Campbell mentioned to me weeks ago, wherein they remove portions of my blood through a large bore catheter in my chest (inserted today!) and treat it with a chemical. Then it is zapped with UV lights to weaken the T cells which are mostly responsible for the GVHD reactions. We start this on next Monday. If this works, I should hopefully be able to get off the steroids somewhat sooner. The treatments can last six months or more. Meanwhile we continue our daily infusions of anti-fungal meds, which will also go on for six months or so, and continue to take about 35 pills a day of various sorts. And I think that's all that's of importance for now. More later. </span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4540" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4541" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">--So, at a point in my recovery at which I had fantasized about visiting museums and taking in the sights of Houston, I was weakened, hobbled, shaking, slow and very immunocompromised.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4542" style="margin: 0px;"> </span>Not what I had expected.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4543" style="margin: 0px;"> I have yet to visit a single museum, even though they're less than a mile from where we live. </span>I donāt feel at all well.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4544" style="margin: 0px;"> </span>But then, I did okay for a while.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4545" style="margin: 0px;"> </span>I was going to PT three times weekly trying to regain my muscular strength, even as I was taking steroids which were tearing down my muscles at the same time.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4546" style="margin: 0px;"> </span>Then this update; </span></div>
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<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4550" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4551" style="margin: 0px;"> </span><b id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4552">Day 76 </b>(May 22<sup id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4553">nd</sup>) <span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4554" style="margin: 0px;"> </span>I am so tired. So very, very tired. And weak. I think I feel the weakest today that I've felt since shortly after we started the steroids weeks ago. I even collapsed in PT today...just couldn't make my legs support me again, like they failed me on the stairs a few weeks ago. And I suppose that's going to have to generate lots of official paperwork for my therapist since I fell to the floor. No blood, no foul, in my opinion, but I guess they have to report it up the chain of command. I'd been feeling poorly since last weekend when it felt like I was coming down with a sinus infection. My muscles had been quivering and shaking since I got out of bed this morning, and when we went to the hospital, I couldn't make it to our elevator without resting on a bench before we got there. That's a first. It was really hard for me to navigate the hospital, so weak did my legs feel. Man, this whole thing has been a lot harder than I expected. I should have known. I was given fair warning by a lot of folks. "It'll take 18-24 months before you feel normal again." I just didn't believe it could be so long.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4555" style="margin: 0px;"> </span>I didnāt want to believe it. Iām an impatient man.</span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4556" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4557" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;"> </span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4558" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4559" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">We got the photophoresis procedures going a couple of weeks ago, to try to ease the symptoms of GVHD, but to do so they pulled my "small" central venous catheter (which looked plenty big to me) and immediately jammed a bigger one into the track in my chest which led to my right subclavian vein, which runs just under the collar bone. The photophoresis procedure, which I mentioned in the last update, collects some of my T-cells, which are donor white cells and are primarily responsible for the Graft Versus Host Disease (GVHD), and these are treated with a drug called Uvelox to sensitize them to UV light. Then they are given a little suntan and put back in my veins. We're doing this three times a week so far but eventually will taper down to twice, then once weekly when things start to improve. Hope that's soon. The machine randomly collects about a third of my T-cells with each treatment so it will never "catch" all of them but gets most over time.</span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4560" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4561" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;"> </span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4562" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4563" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">But even as we were doing all this, other problems were simmering in the background. Despite using the whole body steroid cream daily (neck to ankles!), and taking oral steroids continuously, the rash persisted. No itching, fortunately, but its very presence showed that GVHD was still around. Then, slowly but on a daily basis, my liver tests were becoming abnormal, going up a bit with every twice-weekly blood count, This suggested GVHD might be invading the liver. It was looking like Grace's T-cells were upset with my liver cells too. The liver is another organ, after the skin, that GVHD likes to go after. But it's more ominous to have your liver damaged by the disease. My doc has done tests to look for other causes of this hepatitis, like viruses and such, but nothing has shown up so far. We'll keep watching these for a while longer but if they don't start trending downward, I'll probably need a liver biopsy. Not looking forward to something like that.</span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4564" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4565" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;"> </span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4566" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4567" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">And now I'm just getting weaker and weaker; probably a combination of the whole stem cell process, the steroids, the hepatitis/liver inflammation (?), and, oh yeah, the fluids I'm carrying around because of the steroids. I'm on occasional Lasix ("water pills"), as well, to unload extra water which has been showing up in my ankles and my chest. And my hands still shake, thanks to the steroids and the anti-rejection drug, the tacrolimus, which makes eating an adventure and writing still next to impossible. But, you know, I'm still around to write these little updates, so I still have much to be grateful for.</span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4568" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4569" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;"> </span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4570" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4571" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">I want to sincerely thank so many of you out there who have been praying for my health and survival during this process and, in many cases, praying for me long before we even began this procedure. Despite my many trivial complaints, I am doing, overall, very well. Hopefully this trend will continue and I'll get over these little roadblocks.</span></div>
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<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4573" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;"> </span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4574" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4575" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">I also want to give an enormous "Thanks" and "GO TEAM" to so many members of TEAM ECKS FACTOR [please Google this if youāve not heard of our team] who volunteered many, many hours at the Byron Nelson Golf Tournament last week. They raised money for the team, to be able to name a $100,000 grant to be donated specifically for research into finding a cure and/or better treatments for CLL (Chronic Lymphocytic Leukemia) which is what I had until Grace (my donor) wiped it out! That's all for now. Thanks everyone.</span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4576" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4577" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;"> </span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4578" style="background: white; margin: 0px 0px 11px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4579" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">--But after feeling poorly for a while a few days, I began to gain strength back again and I thought Iād weathered the storm, and sending out this optimistic update;</span></div>
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<b id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4581"><span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4582" style="color: black; font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">A Day 86</span></b><span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4583" style="color: black; font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;"> (June 1st) Last week, just a few days after I sent out my "Woe is me" message, about how tired I was, I was getting ready to send a follow-up message that told you that things were much better already. But then things went south again....</span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4584" style="background: white; line-height: normal; margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4585" style="color: black; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0px;">But, before I get to that, let me first tell you how much better things really are for me in so many ways. First, in a major turn-around, my liver functions, which had been a major worry for me as they had been going up week after week and becoming more and more abnormal, since mid-April, have started to normalize. They have dropped with every blood test in the last 2-3 weeks. My liver is healing from whatever was hurting it. My doc thinks it was the green tea which I drank daily in the afternoon just to keep my fluid intake up to par. I wasnāt taking anything exotic, not an extract or anything weird, just Lipton's Green tea (decaf, to boot). He told me to stop drinking it and, ta da, the liver functions have started to return to normal that week. In any case, my liver seems not to be a problem now.</span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4588" style="background: white; line-height: normal; margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4589" style="color: black; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0px;">And my doc, in the face of normalizing liver functions has been able to further reduce my dose of steroids. I had been kinda stuck at 20mgs a day for several weeks, but now I'm at 10mgs a day and likely will drop to 5mgs tomorrow. And with that reduction, I have been regaining strength and am doing better in PT with most of my exercises and routines. I walk much better now and don't need to stop for breaks any more. </span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4592" style="background: white; line-height: normal; margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4593" style="color: black; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0px;">And, also in conjunction with the reduced steroid doses, I have lost about ten pounds and am getting close to being able to get back into my regular jeans. And I don't eat so much. My family can attest to the fact that when I was on high dose steroids, I ate everything in sight, even when I wasn't hungry, even when I felt stuffed...I would eat more. I'm happily past that now.</span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4596" style="background: white; line-height: normal; margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4597" style="color: black; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0px;">I'm still doing the photophoresis treatments, but they are down to twice a week now. They aren't at all painful or anything, but they consume time, about two or more hours at a time; more if they combine them with the infusion of my antifungal meds. But it is a cool procedure, watching them take out three units of blood and pull off the white cells, put them through what is essentially a "white cell tanning bed," and then put them back. The process weakens them somewhat so they're less likely to cause "graft vs. host disease." Seems to be working well.</span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4600" style="background: white; line-height: normal; margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4601" style="color: black; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0px;">But, last week, about the time I was going to send an update, I got a headache. Now, I get headaches all the time, all kinds of headaches. But over the course of the evening and into the night it got worse and worse such that I ended up in the ER at 3AM. It was the worst headache of my life. <span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4602" style="margin: 0px;"> </span>When I was an intern, working in the emergency room, if someone told you they were having the worst headache of their life, I was told that they might have a brain bleedā¦so after waiting five hours to think about this possibility, I went in to the MDA Emergency Room!)<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4603" style="margin: 0px;"> </span>They found that my blood pressure was 187/114, a blood pressure I've never had in my life. In any case, they gave me meds to lower my BP and the headache went away. But that event sent me to cardiology, who now wants to do a cardiac catheterization because of a minor abnormality found on a previous stress test done weeks before! I've put that off for now but we'll talk about it again in the near future when I'm past a few other of my pending procedures, like another bone marrow biopsy, PET scan, post-transplant eye eval, derm checkup and such.</span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4606" style="background: white; line-height: normal; margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4607" style="color: black; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0px;">The bottom line is that the transplant is, overall, doing real well. All these complaints I have are, really, trivial compared to the issues so many other folks out there who have had this procedure are having. I am indeed fortunate.</span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4610" style="background: white; line-height: normal; margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4611" style="color: black; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0px;">We are at Day 86 of our 100 Day post-transplant stay. But, now it looks like it's going to be a bit longer. We may be here into July dealing with residual GVHD issues, photophoresis and such. We'll just take it as it comes. But, I have to say, having spent 86 straight days in the hospital is getting to be a grind, spending every single day here, weekends, holidays, Mothers' Day and such is getting old. However, I'm fortunate to be where I am and to be doing as well as I'm doing.</span></div>
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<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4615" style="color: black; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0px;">Then, more problems. Update from our daughter.</span></div>
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<b id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4617"><span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4618" style="color: black; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0px;">Day 90</span></b><span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4619" style="color: black; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0px;"> (June 5<sup id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4620">th</sup>) After a fairly optimistic Day 86 update, the past few days have not been great for Pops/Mascot Dave. He's made three trips to the ER since then and is currently in the process of being admitted/incarcerated once again. Over the weekend he had to visit the ER twice for his blood pressure skyrocketing once again (measured as high as 202/128 or so). I don't think we have a root cause yet for that. One doc speculated that it could be the meds that he takes for his frequent migraines. We're expecting another visit to the cardiologist in the near future.</span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4621" style="background: white; line-height: normal; margin: 0px 0px 11px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4622" style="color: black; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0px;">Yesterday Pops started developing a "chest cold." The folks he normally sees for his daily infusions told him that if his cough progresses he needs to go to the ER, so that's what he did this morning. He's since been diagnosed with the flu (technically, parainfluenza virus) and a CT scan shows some pneumonia on the right side. Alas, it's time for another incarceration. He's been isolated in the ER while they find a room to get set up for him. Let's hope that all of the medications and photophoresis haven't zapped so many of Grace's t-cells that he's not able to fight off this virus!<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4623" style="margin: 0px;"> </span>This is yet another reminder that the stem cell transplant process is not an easy road. Thanks to everyone who has continued to keep him in your thoughts and prayers. It looks like it's time for another round of support.</span></div>
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<b id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4625"><span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4626" style="color: black; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0px;">Day 91 </span></b><span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4627" style="color: black; font-family: "Times New Roman", serif; font-size: 12pt; margin: 0px;">(June 6<sup id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4628">th</sup>) Pops is hanging in there. His GVHD rash has returned with a vengeance and made it very difficult for him to sleep last night. It's still bothering him today, but not quite as badly as last night. Interestingly, the flu and pneumonia symptoms aren't making him terribly miserable. Hopefully that's a good sign. Earlier today the cardiologist changed his heart meds to something that will hopefully control his arrhythmia without the blood pressure issues. Tonight he'll be getting IVIG all night to help boost his antibodies. Later heāll be getting a blood transfusion.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4629" style="margin: 0px;"> </span>And he'll get his vitals checked hourly, so it's likely to be another night without a lot of sleep. But we know he's in great hands, and that's what's most important!</span></div>
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<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4633" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">--Hospitals are lousy places to try to get some rest.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4634" style="margin: 0px;"> </span>There is always something going on; vital signs, meds being administered on the computerās schedule, not yours, beepers going off, labs to be drawn.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4635" style="margin: 0px;"> </span>Plus, during my week in the hospital, testing went on as usual.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4636" style="margin: 0px;"> </span>I had another PET scan (which was read as stable and no malignancies seen) and a bedside bone marrow biopsy ( a first for me) which eventually came back, again, as showing negative residual diseaseā¦no leukemia!<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4637" style="margin: 0px;"> </span>And all the cells found are donor cells now.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4638" style="margin: 0px;"> </span>Mine have disappeared.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4639" style="margin: 0px;"> </span>Plus there were drug levels drawn throughout the night, weights being done in the early AMā¦I hate being an inpatient.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4640" style="margin: 0px;"> </span>I am always so very tired when Iām released that all I can do is sleep, yet I have to go right back to my clinic, lab and PT schedules.</span></div>
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<b id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4644"><span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4645" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">Day 97</span></b><span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4646" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;"> (June 12<sup id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4647">th</sup>) He's been sprung! After another fun-filled day at MD Anderson, which included a ride in a pink wheelchair down to get photophoresis, Pops/ Dave managed to get released from his incarceration. He's very happy to be out and looks forward to a night of sleep without nurses knocking on the door all night.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4648" style="margin: 0px;"> </span>Another important note is that his heart meds have been changed, and the new one doesn't have the drug interactions with the oral anti-fungal, so he's able to take that now instead of the daily infusions. So... one of these days, hopefully very soon... they should have a day without a trip to MDA (the first day āoffā since late February). We thought it was going to be tomorrow, but his doc wants to see him tomorrow. And Wednesday he has photophoresis again. So maybe Thursday. I don't think my parents will know what to do with themselves whenever it finally happens.</span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4649" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4650" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;"> </span></div>
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<b id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4652"><span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4653" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">Day 110 </span></b><span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4654" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">(June 25<sup id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4655">th</sup>) update--ROLLER COASTER GOING DOWN!</span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4656" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4657" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">Yep, that what it says; Day One Hundred and Ten Update. When I signed up for this transplant it was strongly suggested that I'd be finished and on my way out of town by about Day 100. But stuff happens. That 100 days is a very flexible number. I've recently talked to another transplant patient who was at about Day 134 or something. We're all different and getting different stem cells under different circumstances and undergoing different transplant protocols. And encountering different complications along the way. Lots of us have some form of GVHD. It's not predictable so you can't really plan for it so much as watch out for its signs and deal with it.</span></div>
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<span style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;"><br /></span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4658" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4659" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">Actually, we were on a great glide path to exiting Houston in about 100 days when I ran into the little parainfluenza ("paraflu") episode. That disrupted so many things. I was doing quite well, gaining back my strength, walking better, eating less, the GVHD rash was virtually gone and I was generally feeling much better. We had been able to taper my steroid doses down from the max of 160 mgs/day to just 10 mgs/day, and were primed to drop to just 5mgs in a day or two. But now I'm back to feeling just about as weak, tired and miserable as I have been since I got here. This is what happened.</span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4662" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4663" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">A few weeks ago I woke up with a bit of a cough, no fever or anything, but my transplant team has trained me well into knowing infections can run rampant in folks like me within hours. Doc Khouri was out of town but I called in and the team advised me to go to the ER for testing. There they found I was infected with the parainfluenza virus, and a chest CT showed what appeared to be an early pneumonia. I was immediately started on a couple of powerful antibiotics (to help prevent a secondary bacterial infection) and admitted for what would be a week's stay. </span></div>
<div id="yiv7627452989yui_3_16_0_ym19_1_1499009922265_21960" style="margin: 0px;">
<span style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;"><br /></span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4664" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4665" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">Now, there's no treatment for the paraflu, you just ride out the symptoms as best you can. It causes croup in babies and can do serious harm to older, immunocompromised folks like me, but I was getting excellent supportive care to prevent problems. The real "problem" was what your immune system does in response to an invasion by the flu virus. It ramps up to fight off the invaders.</span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4666" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4667" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;"> </span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4668" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4669" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">So, in my case, when the paraflu hit me, my donor, "Grace's" white blood cells also ramped up to fight off the infection. Just what we really didn't want just at the moment since we were still fighting off the residual rash from my GVHD attack of weeks previously by trying to suppress her cells' ability to mount an immune response, which were causing the rash. But she's got really strong cells, and despite the steroids and the tacrolimus doses she's subjected to daily, her cells came to life.</span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4670" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4671" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;"> </span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4672" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4673" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">Within a day of admission the rash reappeared on my chest and belly. Then a day later it started crawling down my arms and legs. Then the itching started up all over again! Everywhere. So how do you treat GVHD? More steroids. My steroids went from 10mgs a day to 20 a day and then to 30 a day. And, with the steroids come swelling, weight gain, blood pressure problems, abdominal swelling and more. And, more importantly to me, a delay in getting off the drugs entirely and going home.</span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4674" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4675" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;"> </span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4676" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4677" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">Meanwhile, in a separate but parallel story, cardiology came by my ward and changed my heart meds a bit to some that would allow me to take oral antifungals instead of having to get the daily infusions which we've been doing daily for three months. Great news, but the oral antifungal I was put on apparently interacts strongly with tacrolimus in high concentrations and before I knew anything about it, my tacrolimus levels were supra-therapeutic and four times what my doc wanted them to be (I should mention that he was out of town for this entire adventure). That can result in kidney problems and damage, reduced urine flow, headaches, blood pressure elevations and a lot more. Indeed, my kidney functions are now reduced but slowly seemingly heading back toward normal. My blood pressure is still out of whack, however and runs all over the map. I take a couple of meds now to try to keep my pressures below 160/100! I am loathe to say anything bad about my care at MDA, because I LOVE the place, but someone didn't do their homework when they made this change. Didn't read the package insert, apparently. My doc is a bit upset about the changes made in his absence, so I've heard.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4678" style="margin: 0px;"> </span>But there is probably a lot more to this story than Iāll ever hear.</span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4679" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4680" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;"> </span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4681" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4682" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">But the paraflu, with all the immediate care I received, turned out not to be a big deal at all. It was pretty much completely resolved within a week. Now we're dealing with all the residual problems resulting from my medication changes. </span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4683" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4684" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;"> </span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4685" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4686" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">So, I'm about back to where I was a month ago. I'm now back to hobbling through the hospital on weakened legs, taking rest stops at benches along the way, feeling constantly and deeply fatigued and exhausted, so exhausted at the end of a day of appointments that I've had to pass on opportunities to go to Hank's, if you can believe that. And my hands still shake, my legs quiver, we're back to full-body coatings of steroid creams again, three times daily. And, of course, I'm again on elevated doses of the double-edged drugs, the steroids. We won't be able to taper off these for another three weeks or more, I'm guessing. Hope we can see some fireworks from the apartment.</span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4687" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4688" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;"> </span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4689" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4690" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">However, having said all that, my problems, for a transplant patient are really trivial. I can still soldier on through the day, though slowly, do the things I really need to do, and I don't have any of the so-very-common symptoms of more serious GVHD, involving the liver, gut, lungs, pancreas, eyes and so much more. I've never had intractable nausea, vomiting or diarrhea. I am absolutely exhausted at the end of a day of appointments, but I'm here and moving. I still have a great deal to be grateful for, despite some setbacks. <span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4691" style="margin: 0px;"> </span>I sometimes compare myself to the poor souls I see in the Transplant Clinics; bald, emaciated transplant patients huddled under blankets in their wheelchairs. I feel badly for them since they're having so many apparent problems yet Iām doing so well. It's sobering to walk through the transplant ward and see the chart of the progress of the nursing staff with their Bereavement Committee program. It's a grim reminder that not everyone does as well as I'm doing.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4692" style="margin: 0px;"> </span></span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4693" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4694" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;"> </span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4695" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4696" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">Thanks again for all your support and well wishes. And thanks yet again for all you who have been supporting the Team ECKS Factor fundraising. You guys are just amazing! I hope to be able to see you at some event or another when they reduce my restrictions on being around crowds, but that may well be far into the future.</span></div>
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<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4698" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;"> </span></div>
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<div id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4699" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4700" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">--So, hereās where I stand at the moment, on <b id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4701">Day 116</b>.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4702" style="margin: 0px;"> </span>The transplant has gone extremely well.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4703" style="margin: 0px;"> </span>Iām totally engrafted, my blood is now Graceās blood, her immune system is now managing my body, I have assumed her blood type (having morphed from A negative to A positive) and most importantly, the transplant has apparently (per two bone marrow biopsies) eliminated the leukemia from my marrow.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4704" style="margin: 0px;"> </span>I am now like so many transplant patients, dealing with the side effects and complications of the transplant rather than the graft itself.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4705" style="margin: 0px;"> </span></span></div>
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<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4707" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;"> </span></div>
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<div dir="ltr" id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4708" style="margin: 0px;">
<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4709" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">And these complications can and have included high blood pressure, headaches, GVHD full-body rashes, collecting fluid in our lungs and bellies, swelling of the feet and ankles, ongoing fatigue and weakness, muscle wasting from the steroids, significant tremors of the hands and extremities, memory issues, sleeplessness, oral thrush, recurrent jock itch and so much more.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4710" style="margin: 0px;"> </span>But, this is very important to note; most/many of these side effects are relatively temporary and can be dealt with. And in my case, we're actively dealing with them and will overcome them with a bit more time.</span></div>
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<span style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">But now my hair is falling out. That's another story.</span></div>
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<span style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;"><br /></span></div>
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<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_7079" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">I was going to intersperse some humorous anecdotes and stuff into this DGA but my editor tells me that it's already way too long. So, maybe next time. Or maybe a special issue just with funny stuff. In any case, more later.</span></div>
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Dave</div>
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"When a person doesn't have gratitude something is missing in his or her humanity."--Elie Wiesel</div>
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<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4722" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;"> </span></div>
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<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4724" style="font-family: "Times New Roman", serif; font-size: 12pt; line-height: 107%; margin: 0px;">āSome people call me a hero and tell me that Iām very brave to keep battling against all the problems that have come my way over the fifteen years Iāve been dealing with chronic lymphocytic leukemia (CLL) and now the transplant problems.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4725" style="margin: 0px;"> </span>And I truly appreciate these comments. But Iāve told my family and others that Iām just a stubborn old curmudgeon who doesnāt like to see problems get in the way of my progress. So I try to get around, over or through the obstacles.<span id="yiv7627452989yui_3_16_0_ym19_1_1498945888615_4726" style="margin: 0px;"> </span>Problem is, recently the obstacles have been coming at me much faster and are bigger and more at a time than Iāve had to deal with in the past."--Dave</span><b></b><i></i><u></u><sub></sub><sup></sup><strike></strike></div>
Dave Eckberghttp://www.blogger.com/profile/08992997044938074424noreply@blogger.com0tag:blogger.com,1999:blog-6928201955721701591.post-49400442074438202392017-04-19T17:11:00.000-05:002017-04-19T17:15:44.853-05:00Transplant update and synopsis<div id="yui_3_16_0_ym19_1_1492638008481_4227" style="margin: 0px 0px 11px;">
<span id="yui_3_16_0_ym19_1_1492638008481_4228" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;">DGAāSynopsis; very late, but a quick review of events surrounding my transplant.</span></div>
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<span id="yui_3_16_0_ym19_1_1492638008481_4230" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;">April 19, 2017</span></div>
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<span id="yui_3_16_0_ym19_1_1492638008481_4232" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;">I am alive and, really, very well.</span></div>
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<span id="yui_3_16_0_ym19_1_1492638008481_4234" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;">This is very late.<span id="yui_3_16_0_ym19_1_1492638008481_4235" style="margin: 0px;"> </span>I had good intentions.<span id="yui_3_16_0_ym19_1_1492638008481_4236" style="margin: 0px;"> </span>I bought a new laptop and took it to M. D. Anderson with me to try to keep up with events.<span id="yui_3_16_0_ym19_1_1492638008481_4237" style="margin: 0px;"> </span>I never took it out of its case.<span id="yui_3_16_0_ym19_1_1492638008481_4238" style="margin: 0px;"> </span>Iāve been chemobrained, immunosuppressed, febrile, vomiting, weakened, rashy, fluid overloaded and short of breath, and more.<span id="yui_3_16_0_ym19_1_1492638008481_4239" style="margin: 0px;"> </span>But, nothing serious.<span id="yui_3_16_0_ym19_1_1492638008481_4240" style="margin: 0px;"> </span>Really.<span id="yui_3_16_0_ym19_1_1492638008481_4241" style="margin: 0px;"> </span>Here is a short synopsis of events.<span id="yui_3_16_0_ym19_1_1492638008481_4242" style="margin: 0px;"> </span>More anecdotes will probably follow as I slowly improve. </span></div>
<div id="yui_3_16_0_ym19_1_1492638008481_4243" style="margin: 0px 0px 0px 48px;">
<span id="yui_3_16_0_ym19_1_1492638008481_4244" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span id="yui_3_16_0_ym19_1_1492638008481_4245" style="margin: 0px;">1)<span id="yui_3_16_0_ym19_1_1492638008481_4246" style="font-size-adjust: none; font-stretch: normal; font: 7pt "Times New Roman"; margin: 0px;"> </span></span></span><span id="yui_3_16_0_ym19_1_1492638008481_4247" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;">Left home in early February for MDA, to be admitted for a stem cell transplant.<span id="yui_3_16_0_ym19_1_1492638008481_4248" style="margin: 0px;"> </span>Delayed yet again (sore throat) but ultimately admitted on March 1<sup id="yui_3_16_0_ym19_1_1492638008481_4249">st</sup> for the procedure.</span></div>
<div id="yui_3_16_0_ym19_1_1492638008481_4250" style="margin: 0px 0px 0px 48px;">
<span id="yui_3_16_0_ym19_1_1492638008481_4251" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span id="yui_3_16_0_ym19_1_1492638008481_4252" style="margin: 0px;">2)<span id="yui_3_16_0_ym19_1_1492638008481_4253" style="font-size-adjust: none; font-stretch: normal; font: 7pt "Times New Roman"; margin: 0px;"> </span></span></span><span id="yui_3_16_0_ym19_1_1492638008481_4254" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;">Had six days of pretransplant āconditioningā chemotherapy; rituximab x1 day, bendamustine/fludarabine x 3 days, anti-thymocyte globulin (nasty stuff) x 2 days. The last caused high temps (102.9) with almost convulsive type rigors, nausea, vomiting, and weakness.</span></div>
<div id="yui_3_16_0_ym19_1_1492638008481_4255" style="margin: 0px 0px 0px 48px;">
<span id="yui_3_16_0_ym19_1_1492638008481_4256" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span id="yui_3_16_0_ym19_1_1492638008481_4257" style="margin: 0px;">3)<span id="yui_3_16_0_ym19_1_1492638008481_4258" style="font-size-adjust: none; font-stretch: normal; font: 7pt "Times New Roman"; margin: 0px;"> </span></span></span><span id="yui_3_16_0_ym19_1_1492638008481_4259" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;">March 7<sup id="yui_3_16_0_ym19_1_1492638008481_4260">th</sup>, Graceās (my donor) stem cells went in without drama. No fever, chills, shakes, rashā¦nothing.<span id="yui_3_16_0_ym19_1_1492638008481_4261" style="margin: 0px;"> </span>Nothing but Grace.</span></div>
<div id="yui_3_16_0_ym19_1_1492638008481_4262" style="margin: 0px 0px 0px 48px;">
<span id="yui_3_16_0_ym19_1_1492638008481_4263" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span id="yui_3_16_0_ym19_1_1492638008481_4264" style="margin: 0px;">4)<span id="yui_3_16_0_ym19_1_1492638008481_4265" style="font-size-adjust: none; font-stretch: normal; font: 7pt "Times New Roman"; margin: 0px;"> </span></span></span><span id="yui_3_16_0_ym19_1_1492638008481_4266" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;">Next nine days, post-transplant chemotherapy.<span id="yui_3_16_0_ym19_1_1492638008481_4267" style="margin: 0px;"> </span>Methotrexate, Rituxan, anti-rejection meds (tacrolimus), and a few other things.<span id="yui_3_16_0_ym19_1_1492638008481_4268" style="margin: 0px;"> </span>I feel weak, but continue to walk around the ward daily <span id="yui_3_16_0_ym19_1_1492638008481_4270" style="color: black;">as</span></span><span id="yui_3_16_0_ym19_1_1492638008481_4276" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;"> instructed by physical therapy and the nurses.<span id="yui_3_16_0_ym19_1_1492638008481_4277" style="margin: 0px;"> </span>In fact, I get the idea to try to do a slow half-marathon while on the ward.<span id="yui_3_16_0_ym19_1_1492638008481_4278" style="margin: 0px;"> </span>I succeed in completing 13.1 miles of laps around the ward on my day of discharge.<span id="yui_3_16_0_ym19_1_1492638008481_4279" style="margin: 0px;"> </span>Do I get a medal?</span></div>
<div id="yui_3_16_0_ym19_1_1492638008481_4280" style="margin: 0px 0px 0px 48px;">
<span id="yui_3_16_0_ym19_1_1492638008481_4281" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span id="yui_3_16_0_ym19_1_1492638008481_4282" style="margin: 0px;">5)<span id="yui_3_16_0_ym19_1_1492638008481_4283" style="font-size-adjust: none; font-stretch: normal; font: 7pt "Times New Roman"; margin: 0px;"> </span></span></span><span id="yui_3_16_0_ym19_1_1492638008481_4284" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;">Day nine post-transplant.<span id="yui_3_16_0_ym19_1_1492638008481_4285" style="margin: 0px;"> </span>Discharged to āhome-ish,ā our apartment near MDA.<span id="yui_3_16_0_ym19_1_1492638008481_4286" style="margin: 0px;"> </span>Kinda early.<span id="yui_3_16_0_ym19_1_1492638008481_4287" style="margin: 0px;"> </span>The schedule called for up to 21 days post-transplant hospitalization. Feeling tired but otherwise not too badly.</span></div>
<div id="yui_3_16_0_ym19_1_1492638008481_4288" style="margin: 0px 0px 0px 48px;">
<span id="yui_3_16_0_ym19_1_1492638008481_4289" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span id="yui_3_16_0_ym19_1_1492638008481_4290" style="margin: 0px;">6)<span id="yui_3_16_0_ym19_1_1492638008481_4291" style="font-size-adjust: none; font-stretch: normal; font: 7pt "Times New Roman"; margin: 0px;"> </span></span></span><span id="yui_3_16_0_ym19_1_1492638008481_4292" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;">Spend the next 40+ days returning to MDA daily for infusions of magnesium solutions (seems the anti-rejection drug, the tacrolimus, eats up magnesium and so frequent replenishment is required), anti-fungal drugs and fluids, to keep my kidneys functioning in the face of all the drugs Iām getting.<span id="yui_3_16_0_ym19_1_1492638008481_4293" style="margin: 0px;"> </span>Taking about 35 pills a day.</span></div>
<div id="yui_3_16_0_ym19_1_1492638008481_4294" style="margin: 0px 0px 0px 48px;">
<span id="yui_3_16_0_ym19_1_1492638008481_4295" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span id="yui_3_16_0_ym19_1_1492638008481_4296" style="margin: 0px;">7)<span id="yui_3_16_0_ym19_1_1492638008481_4297" style="font-size-adjust: none; font-stretch: normal; font: 7pt "Times New Roman"; margin: 0px;"> </span></span></span><span id="yui_3_16_0_ym19_1_1492638008481_4298" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;">Day 28, post-transplant.<span id="yui_3_16_0_ym19_1_1492638008481_4299" style="margin: 0px;"> </span>Had a bone marrow biopsy.<span id="yui_3_16_0_ym19_1_1492638008481_4300" style="margin: 0px;"> </span>Results show ānegative minimal residual disease.ā<span id="yui_3_16_0_ym19_1_1492638008481_4301" style="margin: 0px;"> </span>Thatās basically āremission.ā<span id="yui_3_16_0_ym19_1_1492638008481_4302" style="margin: 0px;"> </span>No leukemia cells seen.<span id="yui_3_16_0_ym19_1_1492638008481_4303" style="margin: 0px;"> </span>Thatās amazing after just 4 weeks post-transplant.<span id="yui_3_16_0_ym19_1_1492638008481_4304" style="margin: 0px;"> </span>Let me just stop here, just for a moment.<span id="yui_3_16_0_ym19_1_1492638008481_4305" style="margin: 0px;"> </span>I have to be just a wee bit cautious in interpreting these results, because I have been in ācomplete remissionā so many times, only to see the disease come back.<span id="yui_3_16_0_ym19_1_1492638008481_4306" style="margin: 0px;"> </span>But, this could, and should, be the real thing.</span></div>
<div id="yui_3_16_0_ym19_1_1492638008481_4307" style="margin: 0px 0px 0px 48px;">
<span id="yui_3_16_0_ym19_1_1492638008481_4308" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span id="yui_3_16_0_ym19_1_1492638008481_4309" style="margin: 0px;">8)<span id="yui_3_16_0_ym19_1_1492638008481_4310" style="font-size-adjust: none; font-stretch: normal; font: 7pt "Times New Roman"; margin: 0px;"> </span></span></span><span id="yui_3_16_0_ym19_1_1492638008481_4311" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;">DNA testing on the marrow shows 92% of the blood forming cells in my marrow are already donor derived.<span id="yui_3_16_0_ym19_1_1492638008481_4312" style="margin: 0px;"> </span>100% of my T-cells (part of the immune system) are already donor cells.<span id="yui_3_16_0_ym19_1_1492638008481_4313" style="margin: 0px;"> </span>Thatās great news.</span></div>
<div id="yui_3_16_0_ym19_1_1492638008481_4314" style="margin: 0px 0px 0px 48px;">
<span id="yui_3_16_0_ym19_1_1492638008481_4315" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span id="yui_3_16_0_ym19_1_1492638008481_4316" style="margin: 0px;">9)<span id="yui_3_16_0_ym19_1_1492638008481_4317" style="font-size-adjust: none; font-stretch: normal; font: 7pt "Times New Roman"; margin: 0px;"> </span></span></span><span id="yui_3_16_0_ym19_1_1492638008481_4318" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;">Fifth week, post-transplant.<span id="yui_3_16_0_ym19_1_1492638008481_4319" style="margin: 0px;"> </span>GVHD! <span id="yui_3_16_0_ym19_1_1492638008481_4320" style="margin: 0px;"> </span>(graft versus host disease, where the new stem cells attack me because I look āforeign" to them). I develop a rash on the nape of my neck and behind my ears.<span id="yui_3_16_0_ym19_1_1492638008481_4321" style="margin: 0px;"> </span>It rapidly spreads all over my body, neck to ankles.<span id="yui_3_16_0_ym19_1_1492638008481_4322" style="margin: 0px;"> </span>Weāre treating it with full body steroid creams (triamcinolone cream) three times daily and big doses of oral steroids (160mgs/day) of prednisone.<span id="yui_3_16_0_ym19_1_1492638008481_4323" style="margin: 0px;"> </span>Worst itching of my life.<span id="yui_3_16_0_ym19_1_1492638008481_4324" style="margin: 0px;"> </span>Feels like 1000 chigger bites; canāt stand to have anything touching my skin.</span></div>
<div id="yui_3_16_0_ym19_1_1492638008481_4325" style="margin: 0px 0px 0px 48px;">
<span id="yui_3_16_0_ym19_1_1492638008481_4326" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span id="yui_3_16_0_ym19_1_1492638008481_4327" style="margin: 0px;">10)<span id="yui_3_16_0_ym19_1_1492638008481_4328" style="font-size-adjust: none; font-stretch: normal; font: 7pt "Times New Roman"; margin: 0px;"> </span></span></span><span id="yui_3_16_0_ym19_1_1492638008481_4329" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;">Rash subsides slowly over a week or so; continuing the steroids for now.<span id="yui_3_16_0_ym19_1_1492638008481_4330" style="margin: 0px;"> </span>Gained 10-12 pounds in less than a week on all the steroids, blood pressure getting high.<span id="yui_3_16_0_ym19_1_1492638008481_4331" style="margin: 0px;"> </span>Had to go out and buy bigger, "relaxed fit" pants that I could fit into.<span id="yui_3_16_0_ym19_1_1492638008481_4332" style="margin: 0px;"> </span>Ravenously hungry on all the steroids.<span id="yui_3_16_0_ym19_1_1492638008481_4333" style="margin: 0px;"> </span>But, muscles getting weak from the prednisone.</span></div>
<div id="yui_3_16_0_ym19_1_1492638008481_4334" style="margin: 0px 0px 0px 48px;">
<span id="yui_3_16_0_ym19_1_1492638008481_4335" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span id="yui_3_16_0_ym19_1_1492638008481_4336" style="margin: 0px;">11)<span id="yui_3_16_0_ym19_1_1492638008481_4337" style="font-size-adjust: none; font-stretch: normal; font: 7pt "Times New Roman"; margin: 0px;"> </span></span></span><span id="yui_3_16_0_ym19_1_1492638008481_4338" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;">Two weeks out from GVHD rash. <span id="yui_3_16_0_ym19_1_1492638008481_4340" style="color: black;">Starting</span></span><span id="yui_3_16_0_ym19_1_1492638008481_4341" style="margin: 0px;"><span id="yui_3_16_0_ym19_1_1492638008481_4342" style="font-size: 8pt; line-height: 107%; margin: 0px;"><span id="yui_3_16_0_ym19_1_1492638008481_4345" style="margin: 0px;"> </span></span></span><span id="yui_3_16_0_ym19_1_1492638008481_4346" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;">to taper steroids now.<span id="yui_3_16_0_ym19_1_1492638008481_4347" style="margin: 0px;"> </span>Hopefully Iāll lose some weight and my blood pressure will subside.</span></div>
<div id="yui_3_16_0_ym19_1_1492638008481_4348" style="margin: 0px 0px 11px 48px;">
<span id="yui_3_16_0_ym19_1_1492638008481_4349" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;"><span id="yui_3_16_0_ym19_1_1492638008481_4350" style="margin: 0px;">12)<span id="yui_3_16_0_ym19_1_1492638008481_4351" style="font-size-adjust: none; font-stretch: normal; font: 7pt "Times New Roman"; margin: 0px;"> </span></span></span><span id="yui_3_16_0_ym19_1_1492638008481_4352" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;">And thatās where I am right now.<span id="yui_3_16_0_ym19_1_1492638008481_4353" style="margin: 0px;"> </span>Iām weak, but otherwise doing very well.<span id="yui_3_16_0_ym19_1_1492638008481_4354" style="margin: 0px;"> </span>Weāre just watching out for further signs of GVHD.<span id="yui_3_16_0_ym19_1_1492638008481_4355" style="margin: 0px;"> </span>Weāll likely be here at MDA for another six to eight weeks and then transition back to our home base, if everything is still doing this well.</span></div>
<div id="yui_3_16_0_ym19_1_1492638008481_4356" style="margin: 0px 0px 11px;">
<span id="yui_3_16_0_ym19_1_1492638008481_4357" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;">Sorry for the very long delay.</span></div>
<div id="yui_3_16_0_ym19_1_1492638008481_4358" style="margin: 0px 0px 11px;">
<span id="yui_3_16_0_ym19_1_1492638008481_4359" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;">Dave</span></div>
<div id="yui_3_16_0_ym19_1_1492638008481_4360" style="margin: 0px 0px 11px;">
<span id="yui_3_16_0_ym19_1_1492638008481_4361" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 107%; margin: 0px;">www.adventureswithleukemia.blogspot.com</span><b></b><i></i><u></u><sub></sub><sup></sup><strike></strike></div>
Dave Eckberghttp://www.blogger.com/profile/08992997044938074424noreply@blogger.com0tag:blogger.com,1999:blog-6928201955721701591.post-84316654677311023542017-01-28T20:05:00.000-06:002017-01-28T20:32:04.726-06:00The Transplant; On, off and on again.<div id="yui_3_16_0_ym19_1_1485653165716_10842" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; margin-bottom: 0.0001pt; padding: 0px;">
<span id="yui_3_16_0_ym19_1_1485653165716_10843" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">Daveās Great Adventure<o:p id="yui_3_16_0_ym19_1_1485653165716_10844" style="-webkit-padding-start: 0px;"></o:p></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10845" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; margin-bottom: 0.0001pt; padding: 0px;">
<span id="yui_3_16_0_ym19_1_1485653165716_10846" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">Book 7, Chapter 1, Verse 1<o:p id="yui_3_16_0_ym19_1_1485653165716_10847" style="-webkit-padding-start: 0px;"></o:p></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10848" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; margin-bottom: 0.0001pt; padding: 0px;">
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<div id="yui_3_16_0_ym19_1_1485653165716_10857" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span id="yui_3_16_0_ym19_1_1485653165716_10858" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">āDesperate times call for desperate measuresā--Hippocrates<o:p id="yui_3_16_0_ym19_1_1485653165716_10859" style="-webkit-padding-start: 0px;"></o:p></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10857" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;"><br style="-webkit-padding-start: 0px;" /></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10860" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span id="yui_3_16_0_ym19_1_1485653165716_10861" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">Hey, my donor has a name! But more about that just a bit later okay?<o:p id="yui_3_16_0_ym19_1_1485653165716_10862" style="-webkit-padding-start: 0px;"></o:p></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10860" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;"><br style="-webkit-padding-start: 0px;" /></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10863" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span id="yui_3_16_0_ym19_1_1485653165716_10864" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">First, my deep and sincere apologies to friends and family, as well as anyone else who may have been following my story. I have been seriously remiss in updating things. I last wrote that I was headed for a transplant and then, seemingly, disappeared. It would be easy to think that I had succumbed to transplant complications. The truth is more mundane. Plans have been made, postponed, made again and revised yet again. Butā¦now weāre on!<o:p id="yui_3_16_0_ym19_1_1485653165716_10865" style="-webkit-padding-start: 0px;"></o:p></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10863" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;"><br style="-webkit-padding-start: 0px;" /></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10866" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span id="yui_3_16_0_ym19_1_1485653165716_10867" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">When we decided on the transplant, last fall, we decided to put it off until after the holidays, not wanting the procedure to override the family activities of Thanksgiving and Christmas and not wanting my donor in far-away Sweden to have her holidays interrupted on my behalf. We planned to start the process immediately thereafter. But, shortly after setting things up in October, I fell ill, with a curious condition Iād never before heard of, called SIBO; small intestinal bacterial overgrowth.<o:p id="yui_3_16_0_ym19_1_1485653165716_10868" style="-webkit-padding-start: 0px;"></o:p></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10866" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;"><br style="-webkit-padding-start: 0px;" /></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10869" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span id="yui_3_16_0_ym19_1_1485653165716_10870" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">Now, the small intestine is generally pretty much bacteria-free, unlike the large bowel which is full of lots of various bacteria, many of which are beneficial to your health. In fact, bacteria in your large bowel help with the manufacture of your vitamin B12, which you need to prevent certain kinds of anemia. In SIBO, the balance of beneficial bacteria is disturbed and causes the large bowel bacteria, normal though they may be, to start invading the small bowel. Here, they cause cramps, diarrhea, gas and malnutrition.<o:p id="yui_3_16_0_ym19_1_1485653165716_10871" style="-webkit-padding-start: 0px;"></o:p></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10869" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;"><br style="-webkit-padding-start: 0px;" /></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10872" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span id="yui_3_16_0_ym19_1_1485653165716_10873" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">I had developed SIBO after a series of minor issues that required antibiotic treatments, and so I ended up with five courses of four different antibiotics over about a two month period. This led to persistent cramps and diarrhea. Of significant concern was that I may have a bacterial infection with Clostridium difficile, often called just āC. diff.ā This can be a very serious problem, and even deadly, in folks like me who have compromised immunity. So I was treated with a medication called metronidazole (Flagyl) for a week. The problem went away, only to relapse about ten days later. So, I was treated again with a longer course of Flagyl, this time taking it three times daily for ten days. Again, it resolved, only to recur within a couple weeks. By now Iād had a couple of stool samples tested and neither had shown the presence of C diff, so my gastroenterologist decided that I likely had this SIBO thing. The thing is, the treatment for SIBO isā¦more antibiotics! And relapses are common. And itās a diagnosis made mostly by educated guessing, as thereās no reliable test for the condition. Great! And, get this, if nothing else works, sometimes they can restore your bowelās bacteria balance with a āpoop transplant!ā Yeah, they take someone elseās āhealthyā poop and put into your colon. Is that not a bizarre concept? I wonder if they have Poop Banks like they have Blood Banks and Sperm Banks.<o:p id="yui_3_16_0_ym19_1_1485653165716_10874" style="-webkit-padding-start: 0px;"></o:p></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10872" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;"><br style="-webkit-padding-start: 0px;" /></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10875" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span id="yui_3_16_0_ym19_1_1485653165716_10876" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">But I digressā¦.<o:p id="yui_3_16_0_ym19_1_1485653165716_10877" style="-webkit-padding-start: 0px;"></o:p></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10875" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;"><br style="-webkit-padding-start: 0px;" /></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10878" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span id="yui_3_16_0_ym19_1_1485653165716_10879" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">By now, we were into mid-December and the start of the transplant protocol and testing was about three weeks away. When getting a transplant, you MUST be optimally healthy to help you survive the procedure. So, Doc Khouri, my transplant doc, postponed the procedure until we could get the SIBO under control. He prescribed two more weeks of antibiotics, this time a combination of things. But it worked.<o:p id="yui_3_16_0_ym19_1_1485653165716_10880" style="-webkit-padding-start: 0px;"></o:p></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10878" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;"><br style="-webkit-padding-start: 0px;" /></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10881" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span id="yui_3_16_0_ym19_1_1485653165716_10882" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">But then, over Christmas, I developed a cough which lingered for weeks. I commonly tell Kathy, āItās always some damn thing!ā as there always seems to be some issue to deal with when you have leukemia. Compromised immunity leads to many, many different issues. So, back on antibiotics. <o:p id="yui_3_16_0_ym19_1_1485653165716_10883" style="-webkit-padding-start: 0px;"></o:p></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10881" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;"><br style="-webkit-padding-start: 0px;" /></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10884" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span id="yui_3_16_0_ym19_1_1485653165716_10885" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">We went back to Houston in early January to try to get the transplant back on track. I had an appointment to see Doctor Khouri at that visit to start things up again and set dates once again. However, after weād gotten there, scheduling issues ended up cancelling that appointment after weād seen only the leukemia docs and so we left without restarting the transplant. I was angry and disappointed at that delay.<o:p id="yui_3_16_0_ym19_1_1485653165716_10886" style="-webkit-padding-start: 0px;"></o:p></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10884" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;"><br style="-webkit-padding-start: 0px;" /></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10887" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span id="yui_3_16_0_ym19_1_1485653165716_10888" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">We went back, yet again, two weeks later to try to get the transplant back on track. This visit went better and now the schedule has been set, the donor is agreeable and itās time to get going. Itās a long process, which Iāll tell you about, but at present, my new cells are scheduled to flow into my veins on March 2<sup id="yui_3_16_0_ym19_1_1485653165716_10889" style="-webkit-padding-start: 0px;">nd</sup>.<o:p id="yui_3_16_0_ym19_1_1485653165716_10890" style="-webkit-padding-start: 0px;"></o:p></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10887" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;"><br style="-webkit-padding-start: 0px;" /></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10891" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span id="yui_3_16_0_ym19_1_1485653165716_10892" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">I really wish I could tell you that Iām thrilled to have this set up and on the way. I wish I was happy, overjoyed and filled with anticipation. Iām not. If I had an acute leukemia, like AML or ALL, and had been told I had just months to live, I <i id="yui_3_16_0_ym19_1_1485653165716_10893" style="-webkit-padding-start: 0px;">would</i> be thrilled to have this opportunity, especially with such a great matching donor. <o:p id="yui_3_16_0_ym19_1_1485653165716_10894" style="-webkit-padding-start: 0px;"></o:p></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10891" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;"><br style="-webkit-padding-start: 0px;" /></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10895" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span id="yui_3_16_0_ym19_1_1485653165716_10896" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">But Iām not thrilled. In fact, I am filled with anxiety about this process, almost terrified, because of all the potential complications, not the least of which is a miserable death. Iāve previously written about my other options. All of them, including doing nothing, include the risk of death. There is no right or wrong answer as to which option would be best. Itās a crap shoot no matter what I do. Iām simply playing the odds, no matter which way I go. My docs, Dr. Phil Thompson and Doc Keating, recommend the transplant now. So Iām going for the transplant while Iām still healthy enough and before I get so old that I will not be eligible for a transplant. Heck, I just turned 70 and that would put me beyond eligibility by many transplant protocols.<o:p id="yui_3_16_0_ym19_1_1485653165716_10897" style="-webkit-padding-start: 0px;"></o:p></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10895" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;"><br style="-webkit-padding-start: 0px;" /></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10898" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span id="yui_3_16_0_ym19_1_1485653165716_10899" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">Right now, I am doing extremely well on the venetoclax. My FISH test (looking for abnormal chromosomes) is negative! The leukemia cell count in my last bone marrow biopsy in November had dropped from about 50% or so down to just over 0.1% of all the cells present. My blood tests are getting back to normal. I feel well. I donāt feel sick and donāt feel like I need a transplant! But, as Iāve mentioned before, itās exactly when youāre doing great that you have the best chance of surviving and doing well with a transplant, maybe even being cured. So, unlike a patient with ALL who is looking an imminent death in the face, I donāt have that motivator. The result is that I see too much of the downside rather than the upside to all this.<o:p id="yui_3_16_0_ym19_1_1485653165716_10900" style="-webkit-padding-start: 0px;"></o:p></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10898" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;"><br style="-webkit-padding-start: 0px;" /></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10901" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span id="yui_3_16_0_ym19_1_1485653165716_10902" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">The factors which make this risky for me are, first, my age. The older you are, the harder the procedure is. Plus, I have the 17p deletion chromosome type, which is a risk factor, and I have failed several other courses of treatments, another risk factor. But, in my favor, I have no significant co-morbidities (other diseases, like diabetes, heart disease, lung problems, strokes, etc.), I have very little remaining CLL for the transplant to have to clean up and I have a very good donor, close matches also enhancing the outcome of the procedure.<o:p id="yui_3_16_0_ym19_1_1485653165716_10903" style="-webkit-padding-start: 0px;"></o:p></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10901" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;"><br style="-webkit-padding-start: 0px;" /></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10904" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span id="yui_3_16_0_ym19_1_1485653165716_10905" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">So, weāre moving to Houston. Iām required to be within 30 minutes of the hospital for about 100 days after the transplant. We have signed a contract on an apartment and will be moving in soon. Itās a ācorporateā apartment, meaning it is furnished and stocked with linens, towels, kitchen ware, utensils, glassware and more. All we need bring along, basically, are our clothes and supplies.<o:p id="yui_3_16_0_ym19_1_1485653165716_10906" style="-webkit-padding-start: 0px;"></o:p></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10904" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;"><br style="-webkit-padding-start: 0px;" /></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10907" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span id="yui_3_16_0_ym19_1_1485653165716_10908" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">The process will start on February 10<sup id="yui_3_16_0_ym19_1_1485653165716_10909" style="-webkit-padding-start: 0px;">th</sup> or so. Iāll be getting, in no particular order, a PET scan, bone marrow biopsy, an echocardiogram, EKG, lots of blood tests, pulmonary function tests, a chest X-ray, and more. Then, in between a lot of permits, financial counselling and such, Iāll get a large tube inserted into my chest, which will remain there for the duration of the transplant. Itās gonna drive me nuts, I know. Through this triple lumen catheter (having three channels within it), as itās called, I will get medications, fluids, the stem cells, have blood drawn for studies and more.<o:p id="yui_3_16_0_ym19_1_1485653165716_10910" style="-webkit-padding-start: 0px;"></o:p></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10907" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;"><br style="-webkit-padding-start: 0px;" /></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10911" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span id="yui_3_16_0_ym19_1_1485653165716_10912" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">This will all take about a week. Then, Iāll be getting my first dose of immunosuppressive medications, stuff called CD22, I believe, intended to keep my body from rejecting the new cells when they meet up with my more established and usually friendly cells. Iād hate for my new cells, having come all the way from Sweden, to feel rejected!<o:p id="yui_3_16_0_ym19_1_1485653165716_10913" style="-webkit-padding-start: 0px;"></o:p></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10911" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;"><br style="-webkit-padding-start: 0px;" /></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10914" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span id="yui_3_16_0_ym19_1_1485653165716_10915" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">A week later I will be admitted to the transplant ward, where I will stay for about four weeks. The first week Iāll be getting more chemotherapy, so-called āconditioning.ā Thatās a very benign term. Sounds like putting something in your hair, or maybe itās working out to get into shape, or some other pleasurable activity. But, in this case, āconditioningā is chemotherapy, designed basically to suppress oneās immune system even more to allow the new cells to enter your body without provoking an intense rejection. The conditioning lasts about a week.<o:p id="yui_3_16_0_ym19_1_1485653165716_10916" style="-webkit-padding-start: 0px;"></o:p></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10914" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;"><br style="-webkit-padding-start: 0px;" /></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10917" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span id="yui_3_16_0_ym19_1_1485653165716_10918" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">And then the cells go in. <o:p id="yui_3_16_0_ym19_1_1485653165716_10919" style="-webkit-padding-start: 0px;"></o:p></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10917" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;"><br style="-webkit-padding-start: 0px;" /></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10920" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span id="yui_3_16_0_ym19_1_1485653165716_10921" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">The transplant itself is anticlimactic. The cells simply flow into me from a small plastic bag, and it looks much like a pale blood transfusion. Thatās the easy part. Then things get exciting. But, more about the aftermath later when I have something to report.<o:p id="yui_3_16_0_ym19_1_1485653165716_10922" style="-webkit-padding-start: 0px;"></o:p></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10923" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<br /></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10926" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span id="yui_3_16_0_ym19_1_1485653165716_10927" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">But what of the donor; what is she up to during all my pre-transplant activities? Well, sheās been busy too. Before she donates her precious stem cells, she has to be made to make a lot of them. This is done by stimulating her marrow with a drug commonly called Neupogen. Itās an injectable medication which is usually used in folks like me to drive up their white blood cell numbers after or during chemotherapy. But Neupogen also drives up stem cell numbers and pushes them into the peripheral circulation, into the blood stream, where they can be collected. The Neupogen can be uncomfortable and can cause mild bone aches. Iāve had it many times and can tell you, it makes you feels mildly ill, but usually nothing too bad. My donor will be getting the Neupogen for about a week or a little more and then her stem cells will be collected.<o:p id="yui_3_16_0_ym19_1_1485653165716_10928" style="-webkit-padding-start: 0px;"></o:p></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10926" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;"><br style="-webkit-padding-start: 0px;" /></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10929" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span id="yui_3_16_0_ym19_1_1485653165716_10930" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">The collection process is not what many folks think or fear. Many have an image of a ābone marrow donationā as being a literal donation of bone marrow, it being extracted from the bones of the hips. This is pretty much ancient history now. It is still done rarely, but in the majority of cases, the stem cells are collected from the blood, where they have been sent by the Neupogen.<o:p id="yui_3_16_0_ym19_1_1485653165716_10931" style="-webkit-padding-start: 0px;"></o:p></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10929" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
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<span id="yui_3_16_0_ym19_1_1485653165716_10933" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">In the best case scenario, the donor is set up much as if donating blood, with a large IV in each arm. Blood is taken out of one arm, the stem cells are collected from the blood by an āapheresisā machine, and the rest of the blood is put back in the other arm. The process can take several hours. If the donor does not have great veins, they will sometimes have a large IV line inserted into the veins of the neck or chest for a short while, much like I will have, and the collection will be done by this route.<o:p id="yui_3_16_0_ym19_1_1485653165716_10934" style="-webkit-padding-start: 0px;"></o:p></span></div>
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<span id="yui_3_16_0_ym19_1_1485653165716_10936" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">And my donorās name? Well, of course she has one; I just donāt know her real name yet. For many, many months there will be a thick wall of anonymity between us. However, with my Swedish heritage, I'd like to imagine she has a classic Swedish name like Kjerstena Bengtsdottir or something, as they did in my Swedish grandparentsā days. But, more likely, in these days she has a name like Anna Larsen.<o:p id="yui_3_16_0_ym19_1_1485653165716_10937" style="-webkit-padding-start: 0px;"></o:p></span></div>
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<div id="yui_3_16_0_ym19_1_1485653165716_10938" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span id="yui_3_16_0_ym19_1_1485653165716_10939" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">But rather than calling her āmy donorā all the time, I wanted to give her a better name I could use for her. For a while I thought I should call her āBo,ā after the central character in the movie ā10.ā Bo Derek starred in that movie as the lovely woman who drove Dudley Moore to distraction with her āperfect tenā beauty. Remember, that my donor is a perfect 10 out of 10 match for me, too!<o:p id="yui_3_16_0_ym19_1_1485653165716_10940" style="-webkit-padding-start: 0px;"></o:p></span></div>
<div id="yui_3_16_0_ym19_1_1485653165716_10938" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
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<div id="yui_3_16_0_ym19_1_1485653165716_10941" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span id="yui_3_16_0_ym19_1_1485653165716_10942" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">But the slightly raunchy overtones of that movie arenāt really appropriate for someone who is doing so much for me and doing so out of the goodness of her heart and character. She will derive nothing from this other than the satisfaction of helping out an anonymous stranger. So a different, better name would be appropriate. Donna, one of our neighbors and good friends, after reading my last message a couple of months ago, and noting my closing passage from the old hymn, āAmazing Grace,ā suggested that her name, for now, should be Grace, or even, āAmazing Grace.ā So, henceforth, I will call her Grace. Look at my last messageās closing and it will make a lot of sense.<o:p id="yui_3_16_0_ym19_1_1485653165716_10943" style="-webkit-padding-start: 0px;"></o:p></span></div>
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<span id="yui_3_16_0_ym19_1_1485653165716_10945" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">I want to close this already (again) lengthy message with some āfun factsā about stem cell transplants. This is amazing stuffā¦really!<o:p id="yui_3_16_0_ym19_1_1485653165716_10946" style="-webkit-padding-start: 0px;"></o:p></span></div>
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<span id="yui_3_16_0_ym19_1_1485653165716_10948" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">First, I will assume Graceās blood type. My blood type now is A negative. Graceās is A positive. After the transplant, my blood type will become A positive. Cool, huh?<o:p id="yui_3_16_0_ym19_1_1485653165716_10949" style="-webkit-padding-start: 0px;"></o:p></span></div>
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<span id="yui_3_16_0_ym19_1_1485653165716_10951" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">Next, I will in fact, have her blood, not mine, in my veins. If I were to leave blood at a crime scene (!) and its DNA was examined, they will find Graceās DNA, not mine. Even cooler, huh?<o:p id="yui_3_16_0_ym19_1_1485653165716_10952" style="-webkit-padding-start: 0px;"></o:p></span></div>
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<div id="yui_3_16_0_ym19_1_1485653165716_10953" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span id="yui_3_16_0_ym19_1_1485653165716_10954" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">Next, after the transplant takes and her immune system has taken over mine, it will be a ābrand new, never been usedā immune system, which will not be prepared for any of the usual, childhood diseases and such. I will have to get all my immunizations yet again. Diphtheria, tetanus, mumps, measles, rubella, polio, and everything. Plus a flu shot and a pneumonia immunization. (I presume that I wonāt have to repeat the shots I got before going to Vietnam, like plague, yellow fever, cholera, typhus and more.)<o:p id="yui_3_16_0_ym19_1_1485653165716_10955" style="-webkit-padding-start: 0px;"></o:p></span></div>
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<div id="yui_3_16_0_ym19_1_1485653165716_10956" style="-webkit-padding-start: 0px; font-family: "times new roman", "new york", times, serif; font-size: 16px; padding: 0px;">
<span id="yui_3_16_0_ym19_1_1485653165716_10957" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">And, I hear that I may start taking an interest in pretty purses, curtains and patent shoes! And Iāll want my towels and wash cloths to match, for unknown reasons. Iāll grow little boobs and start getting PMS! Yeah, okay, thatās a joke, but I have heard of folks who, post-transplant, inexplicably took on some characteristics of their donor. I hope Grace likes barbeque and old cars and not lutefisk and Scandinavian modern furniture!<o:p id="yui_3_16_0_ym19_1_1485653165716_10958" style="-webkit-padding-start: 0px;"></o:p></span></div>
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<span id="yui_3_16_0_ym19_1_1485653165716_10960" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">Thatās it for now. There will be more to come if I can get easy access to a computer and a connection while in Houston, and if Iām feeling up to writing. A lot is about to happen.<o:p id="yui_3_16_0_ym19_1_1485653165716_10961" style="-webkit-padding-start: 0px;"></o:p></span></div>
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<span id="yui_3_16_0_ym19_1_1485653165716_10963" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">Dave<o:p id="yui_3_16_0_ym19_1_1485653165716_10964" style="-webkit-padding-start: 0px;"></o:p></span></div>
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<span id="yui_3_16_0_ym19_1_1485653165716_10970" style="font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">āā¦these days, in which we can bear neither our diseases nor their remedies.āāLivy (Roman historian)</span></div>
Dave Eckberghttp://www.blogger.com/profile/08992997044938074424noreply@blogger.com0tag:blogger.com,1999:blog-6928201955721701591.post-16131472784187165692016-11-02T15:49:00.000-05:002016-11-02T15:49:10.120-05:00The DilemmaDaveās Great Adventure<BR>
Book 6, Chapter 1, Verse 5<br><p><P>
diĀ·lemĀ·ma<BR>
/diĖlemÉ/<BR>
noun: dilemma 1. a situation in which a difficult choice has to be made between two or more alternatives, especially equally undesirable ones (Oxford Dictionaries) 2. a choice between a stem cell transplant which may kill me with graft versus host disease or staying on the venetoclax which may cause my death by Richterās Transformation. (Dave Eckberg)<P>
***********************<P>
Man, the venetoclax is working great. Even spectacularly great! Iāve now been on it for about 22 weeks and everything is going the right direction. Itās causing me few side effects, my lab tests are normalizing and a recent CT scan showed that my enlarged lymph nodes are shrinking. This is one amazing drug.<P>
Maybe even astounding. Recent follow-up labs on my bone marrow biopsy from a few weeks back show that the percent of leukemia cells in my marrow has dropped from 93% in late May, 2016, to only 0.6% in late August! Thatās not a misprint. From 93% to less than one percent leukemia cells in just twelve weeks. Thatās just astonishing and itās more than I could ever have hoped for. Iām doing great!<P>
And thatās why they want me to do a stem cell/bone marrow transplant (they are the same thing) now. As I mentioned at some length in my last story, itās when youāre doing wonderfully well that they rain on your parade and say, āOkay, itās time for the transplant.ā Of course, they pick this time when you have a reduced disease burden and are feeling well because thatās when a transplant is most likely to ātakeā and possibly cure your disease.<P>
Iāve been fretting and worrying and stressing and agonizing over having to make this decision for many weeks and months. I knew the time would come when I would have to cross this bridge. I have never wanted to have to do a stem cell transplant, but I have always known it would be my ultimate safety net when nothing else was working. And now, Iām about there. And hereās why.<P>
I have written out long lists of pros and cons for each of my options, which are whether to go for the transplant or to continue on the venetoclax which is doing so well for me. I have drawn out algorithms and decision trees for both. I have asked questions, looked at on-line data, and I have looked over recent data from M. D. Anderson about their success rates after transplants. And hereās what it looks like.<P>
The results, in very general terms, for a āmatched unrelated donorā stem cell transplant are divided into quarters. About one quarter of the patients will die. About one quarter will fail to engraft and/or relapse. About one quarter will survive but suffer from significant graft versus host disease. And about one quarter will be cured. These are very general outcomes, but approximately reflect oneās possible outcomes after transplant. Iāll get back to this stuff in a moment.<P>
Now, if I stay on the venetoclax, what are my likely outcomes? Well, to start with, I WILL relapse at some point. That likelihood apparently approaches 100%. We just donāt know when it will happen. As I mentioned previously, the average progression free survival is said to be 16-24 months, depending on whose study you read. But that doesnāt mean I can safely wait this stuff out for 16 months. The relapses start early in some folks and there is a slow downward trend in survival rates from early on in the studies. I could potentially relapse at any timeā¦or I might not relapse for a couple of years! <P>
And if/when I relapse, current data says Iāll have a 50% chance of coming down with Richterās Transformation, which I mentioned in my last story. Richterās is very bad news. For someone like me, with a history of several failed courses of chemotherapy and the 17p deletion, Richterās for me pretty much means āgame over.ā Sometimes one can attempt to treat it with a stem cell transplant, but then Iām back to that same decision again, but in far worse shape. Plus, the chemotherapy Iād need before that transplant likely wouldnāt work for me since my disease has worked its way around chemotherapy several times in the past.<P>
But what if I relapse and donāt come down with Richterās? Indeed, what? Well, there are several, or even many possible options, but all are unproven. If I could get into a CAR-T study (chimeric antigen receptor-T cell) that might hold out the possibility of a cure, but the success rate is still low, and there are deaths involved in these studies as well, plus lots of failed procedures and relapses.<P>
So, more drugs? There is nothing left for me that is known to work. We have talked about trying a combination of Revlimid and obinutuzumab which should, in theory, work. And it might work well. But itās no more likely to cure me or give me a prolonged remission than any other combination Iāve been on. And when I relapse on it, then what? Once again, Iām back to the same question of, what now? And a transplant would seem to be my best option once again, but Iād be older and probably sicker than I am right now.<P>
āWhen you come to a fork in the road, take it.āāYogi Berra<P>
I stalked Dr. Keating at our last visit to M. D. Anderson. I didnāt have an appointment with him and didnāt even know for sure he was in the clinic that day, but I wanted to talk to him about a transplant, since he had been my doc for ten years. Heās now not permitted to be involved in my care, at least directly, as he didnāt take some mandatory āclassā instructing docs how to safely administer venetoclax. The class was put on by AbbVie, the manufacturer of venetoclax, since some patients had been killed by giving the drug too rapidly in early studies (see āRamping Up The Venetoclax,ā which I wrote recently, for more details about this). Iām sure it was a lawyerās ācover your assā kinda thing for the manufacturer, as they didnāt want to be involved in a lot of lawsuits which would inevitably follow the death of a patient taking the drug.<P>
I had been leaning towards a transplant for a while, since it seemed like I was pretty much out of good options, but I wanted to run it past Doc Keating. Heās been my āsecurity blanketā for many years and I wanted his opinion. Sitting in the waiting room, hoping for evidence that he was, in fact, in the house, I finally heard his voice and knew he was there (yeah, I heard him before I saw him!). I asked one of the staff if they could get a message to him asking if I could take five minutes of his time at the end of his morning clinic. Then I waited to see if he would talk with me. The clinic was ostensibly finished at noon, and no one came out to invite me in to the exam rooms. I waited a while longer, and longer. Then, at 12:45, Alice, the nurse practitioner came to the door and hustled me into the clinic. Shortly, Doc Keating kindly joined Kathy and me and gave us both his famous hugs.<P>
I told him why I was there and mentioned that I was disappointed that I hadnāt been able to see him in many months because of the venetoclax thing. He smiled, a wry smile, looked down and then back up at me. He said, shaking his head slowly, āIām on the board of advisors for AbbVieā¦and I canāt giveā¦theirā¦ (insert a pejorative adjective here if you want to; he didnāt, but I imagined it)ā¦drug?ā he asked rhetorically.<P>
But we talked things over and went over the data that is available about the venetoclax and transplants. He discussed my overall outlook and possibilities, options and likely outcomes and finally said (very Nike like) āJust do it.ā So, I am.<P>
And it boils down to this; if I stay on the venetoclax I have a 50% chance of Richterās in the reasonably near future, which is saying I have a 50% risk of dying within the next year or two or three. If I get the transplant I have about a 25% risk of dying from the immediate or longer term complications.<P>
Case closed.<P>
Iāve been to the transplant clinic again and met with Dr. Khouri, who has been doing these for many, many years. He presented me with some new information about a new āconditioningā regimen (conditioning is pre-transplant chemotherapy) which is yielding better overall results and lowered morbidity and mortality. We said we were going to do it, and so the wheels are in motion.<P>
Iāll have much more to tell you about the transplant data later, but basically the new regimen has reduced the immediate death rate to (āonlyā) about 10% or so, with reduced āgraft versus host disease.ā But thatās a whole new topic, for another story.<P>
One last thing; my potential donor is an altruistic 41 year old Swedish woman with A+ blood type. Thatās all I will know. And at this point she knows only that someone in the USA is interested in some of her stem cells, and she is willing to part with some in hopes of saving the life of a complete stranger. She will get nothing for her troubles other than the knowledge that she may be doing something wonderful for this stranger. She may save a life. And you could too. By signing up with āBe The Matchā ( www.bethematch.org ) you can be painlessly screened, with a swab of your cheek, to be a potential stem cell donor and have the incredible opportunity to save someoneās life. Donating stem cells is generally very similar to giving blood, the stem cells being collected with IVs in each arm, so donāt be fearful of a painful experience, okay? I know youāve heard storiesā¦.<P>
And thatās all at this point. Weāll be going back to Houston next week for more preliminary testing. As Iāve drolly said to Kathy many times during the course of this disease, āThis could get pretty exciting.ā But truly, itās not exciting. Itās scary and Iām really scared.<P>
Dave<P>
āThrough many dangers, toils and snares,<BR>
I have already come;<BR>
āTis grace hath brought me safe thus far,<BR>
And grace will lead me home.ā<BR>
--āAmazing Graceā by John Newton<BR>
Dave Eckberghttp://www.blogger.com/profile/08992997044938074424noreply@blogger.com0tag:blogger.com,1999:blog-6928201955721701591.post-69659030182844015442016-09-17T21:00:00.000-05:002016-09-17T22:22:15.138-05:00Perhaps a Transplant?Book 6, Chapter 1, Verse 4<BR>
September 17, 2016<BR>
<P> <P>
Last month Kathy and I went to Houston to celebrate our anniversary. It was our 47th wedding anniversary and we wanted to have a special time. We had a safe trip down to Houston and checked into our hotel. I had planned a nice night out, an evening meal at Buon Appitito which is a really cute little Sicilian Italian restaurant, in an old converted house, just west of the medical center on Holcombe. Itās perhaps a mile or so down the road. Itās really nice. I lined up a small room in the back and even had the owner arrange for his musician to come in to play some romantic musi<P>
No, no, no! Hell no! Thatās not the way it was. Thatās the way it should have been, thatās the fantasy we all have of a perfect night out with our wife, on a special day. But no. We were in Houston because I have CLL, an incurable, lethal disease that weāve been dealing with for almost 15 years now. We had to be in Houston <i>on</i> our anniversary, but not <i>for</i> the anniversary. The anniversary was just coincident to our visit. The purpose of our trip, the lab tests, a bone marrow biopsy, CT scans and more, overshadowed our special day. It did it again. Over the years, the disease has stepped on and caused us to miss family reunions, funerals, birthdays, Fatherās Day gatherings and a whole lot more. It has, on many, many occasions, taken control of our lives and our schedule to the point that we have to plan our lives around it. Cancer sucks!<P>
And Kathy was sick on our anniversary and couldnāt leave the hotel room anyway. Happy anniversary, indeed.<P>
And so it was that on our āspecial day,ā August 23rd, I was wandering the halls and passages of M. D. Anderson alone. For the first time ever. Kathy has always been at my side, for fifteen years; at every visit, lab test, CT scan, infusion or whatever, until that very day, our anniversary.<P>
I showed up at the clinic, Leukemia Clinic East, to check in a little early, about 9AM to get blood drawn. I had to get blood drawn before I could eat, and I had to eat before I could take my venetoclax. But immediately I had to skirmish with the still-new and still-confusing (after six months in service) electronic records system, which is officially known as EPIC. Maybe more like epic-fail, I often think. I checked in and got the requisite white plastic band applied to my wrist, which has all my patient information, bar codes and the like on it. You canāt get anything done without it anymore. Next I needed to get my vital signs done (blood pressure, pulse, weight, temperature and such). Should be an easy thing, right? I got in a short line and waited a few minutes to get to the front of the line. But just then, the system was ādown.ā Three staff clustered around the terminal trying to make it responsive. No luck. We were told to take a seat, told that weād be called up for our turn at the āvitals stationā soon.<P>
I waited. The lab folks were looking for me and finally got tired of waiting on the vital signs and just took me back to the lab to get the blood drawn. Exiting the lab I saw that the computer at the vitals desk was still down so I took a seat again. But now I could at least eat and take my venetoclax. Eventually a few people were called up from time to time, but not me. An hour went by and I had an appointment for a bone marrow biopsy at 10:30. So I left without having my āvitalsā taken. Thatās generally a cardinal sin and can prevent you from getting anything else done until you get in the correct line and get all the blanks on your electronic chart filled in.<P>
I got to the bone marrow biopsy clinic on time and found that they were right on schedule. In fact, they were waiting for me. Seems they had folks showing up late. Problems with vital signs, they told me! The biopsy was quick and easy. I had the drill used on me for the first time and it made the procedure even quicker than it usually is. It sounds a bit like a dentistās drill and the thought of having a drill going into your hip is not pleasant, but was incredibly quick, easy and the drill part was totally painless. The whole thing was over in four or five minutes.<P>
Bone marrow biopsies have a horrible reputation. Everyone āknowsā that they hurt more than anything--absolutely anything--else. But, I can tell you that at M. D. Anderson, they arenāt a big deal. When I had them done in Denver, years ago, they WERE a big deal, and they were, in fact, excruciating. But the folks at M. D. Anderson are really good. Most docs in community oncology clinics do, maybe, a couple of biopsies a month, and so they arenāt all that skilled at them. The folks doing the biopsies in Houston arenāt docs, but they do up to 20 a day. And they are really, really good at what they do. I still donāt like having them done, but they simply donāt hurt any more than a flu shot or maybe falling down and skinning your knee. The worst part for me is the worry that the procedure WILL hurt like the ones I had years ago in Denver, so I tense up, but they never, ever hurt like my first ones. <P>
By now it was about 11AM. My next appointment wasnāt until 1PM, so I decided to get a quick lunch. Since I was a bachelor for the moment, I had a bachelor kinda lunch; a cup of yogurt I had in my backpack and a bag of peanuts and a diet Coke I got from a machine. Simple and easy. I sat alone on a bench in the skywalk between the main building and the Rotary House to eat my lunch and just watched folks from all over the world walk by.<P>
At 12:30 I decided to go back to the Leukemia Clinic and see about getting my vital signs taken as I had a 1:00 appointment with Doc Thompson. I approached the vital signs cubical and sat down. The nurse asked what she could do for me and I said I needed my vital signs taken. She told me Iād have to check in first. I told her I had. She checked the EPIC system which told her that I had not checked in yet. Showing her my official M. D. Anderson certified wristband, I assured her I had. She looked at it, scanned it, and checked the computer which still said I hadnāt checked in. It said I had checked into the lab but not the clinic. Now, understand that the research lab, which is where I had my labs drawn earlier that day, is within the clinic, feet from the exam rooms. And that the desk at which I had checked in earlier that day was only about six feet from where I was sitting, waiting to have my vitals taken. Yet I had to be checked in again. Common sense and a paper chart wouldnāt require such jumping through hoops simply to get a blood pressure taken. But the computer system requires that all the appropriate boxes be checked off in the appropriate but illogical (to me) and probably unnecessary sequence. <P>
My visit with Doc Thompson went very well, once he was able to get to me. He was very, very busy that afternoon and kept being called out to consult with other docs and nurses, and to take consults on the phone. But once we got to talk and he was able to examine me, all was great. My labs have gotten closer to normal than theyāve been in a while, the preliminary smear from the bone marrow biopsy was already back and was approaching normal (the percentage of lymphocytes in the marrow had dropped from 50% to 20%) and on exam, he could find no palpable, enlarged nodes. And this was after only 12 weeks of venetoclax.<P>
We talked about my options. He pushed harder on a transplant, wanting it seemingly sooner rather than later. He said heād get in touch with the transplanters and give them a heads up about me. And he said he was going to present my case at grand rounds, so that the whole collective brain-power of the leukemia team at M. D. Anderson could weigh in on my treatment. I think Iāll be a high risk patient, for many reasons; my age (Iāll be 70 later this month), my many previous treatments, my 17p status (I suppose it makes it more risky), and so on. But, despite my great response to venetoclax, he wants me to get going with the process of preparing for a transplant.<P>
And hereās why: <P>
The early data on folks like me (and now Iām talking specifically about patients heavily pretreated with multiple relapses in the past and who are refractory to or who have failed either ibrutinib or idelalisib) show that about 70-80% of us will respond to venetoclax. Thatās up from the 60% which was reported just last December. But the average āprogression free survival,ā for those of us who respond while taking venetoclax, is somewhere between 16 and 24 months, depending on who you talk to. These numbers are in flux as the data is being generated even as weāre taking the stuff. We are the folks whose survival is being measured to create these numbers.<P>
And, about half of us who relapse on venetoclax will do so with a Richterās Transformation. Thatās a big deal. Richterās is bad, very bad. Itās a very aggressive lymphoma. Another Dave with CLL, who had a very well-written blog called CLL Diary (www.clldiary.blogspot.com) developed Richterās. He said comparing Richterās to CLL was like comparing Godzilla to Bambi. That was one of his last blog entries before he died.<P>
So, it would appear that a relapse is all but certain for us and if we wait to relapse, much worse things can happen. And, remember, that if you are to ever have a transplant, your best shot at a successful procedure would be to do it when youāre in a deep remission. Yeah, just when youāre doing wonderfully well and feeling great, they want you to risk your life on a transplant. Most of us CLL patients will need āmatched unrelated donorā stem cells (inelegantly called āMUDā transplants) unless we have a sibling who matches our marrow. Any one sibling has a 1 out of 4 chance of matching you. I have four siblings but none of them match me! But, with a MUD transplant, the death rate is routinely said to be about 25%, last time I looked (some say itās as much as 50%). That number seems not to have budged in 15 years, as thatās what I was told back in 2002 when I first was diagnosed and we were testing my siblings, who didnāt have the common decency to match me! (Insert smiley face emoji here!)<P>
And so my options right now are to consider riding out the venetoclax as long as it keeps working and hope nothing worse happens to me in the meanwhile, or getting into a deep remission with it and then rolling the dice on a transplant. There really is nothing else out there that is proven. Yes, CAR-T cells might work, but right now the success rate is about 20% or so. Maybe try Revlimid (a thalidomide derivative) and obinutuzumab (another anti-CLL antibody which is more powerful than rituximab) to see what happens, or something else. And there are a host of yet unproven new small molecule inhibitors in the pipeline, like IPI-145, TGR-1202, ONO-4059 and ACP-196. But, of all the possibilities out there, nothing looks any better than a transplant for me, in my situation right now. Remember also that a transplant is the only proven cure for this disease. Yes, there are some lucky IGHV mutated folks out there who have been in extended remissions after getting FCR, and some of these are cautiously said to be ācured,ā but they are the exception and not the rule.<P>
And that brings up another issue. Should I have just gone for the transplant when I was in remission from the ibrutinib? I was seeing the transplanters back then and they were pushing hard to get me to have a transplant while I was in a good clinical remission. They had some possible donors identified and I had signed all the papers, gone to all the classes and everything. But, I didnāt want it. I didnāt say it exactly this way, but I kinda told them, āAre you crazy! Iām doing GREAT on the ibrutinib!ā But, as Doc Thompson said to me recently, āYeah, you were doing great until you werenāt.ā<P>
And, as great a drug as venetoclax is, it doesnāt successfully treat all the folks like me who relapse on ibrutinib. Since the current data seems to show that 70 to 80% of us will respond to venetoclax, that leaves somewhere between 20 to 30% of us who will not respond to venetoclax after relapsing on ibrutinib. Those folks would then have no other really good options (at least at present, since nothing better seems to be coming down the pipeline right now).
So, should 17p deleted folks who are in clinical remission on ibrutinib just bail out and go for the transplant, knowing that they may not be saved by venetoclax if/when they relapse? Tough question. Again, it gets asked just as youāre feeling and doing great on the new wonder drug, the ibrutinib. But, when youāre in remission, your odds of a successful transplant are the highest. I didnāt seriously consider a transplant when I was on ibrutinib because, wellā¦I thought Iād never relapse. But I did. If Iād had a transplant four years ago I would have been younger and, in theory, at a lower risk. <P>
But there are never any easy answers or absolutely correct answers when deciding what to do with your CLL. There are just lots and lots of options. āThe only true wisdom is knowing you know nothing,ā said Socrates. I used to think I understood this disease but the more I learn about it, the more I realize I really donāt know very much at all.<P>
Weāre going back to Houston next week. I have appointments with Doc Thompson and the lab, as per usual. But, Doc Thompson was true to his word and has called the transplanters to let them know weāre again thinking about doing one. They then called us a few weeks ago and set up an appointment with my transplant doc, Dr. Khouri, one of the pioneers in the procedure. Iāll be seeing him and his team on Wednesday. But, the nurse who called us let us know some interesting information. <P>
I was close to getting a transplant four or so years ago, just before I started on the ibrutinib. At that time they did all the typing of my cell lines in preparation for looking for a matched donor for me. Well, they still have all that data on file. The nurse had taken the liberty of looking at the current lists of possible donors registered in donor banks around the world and found a possible 10 out of 10 match for me! This is not a certain match, as more studies need to be done, but she has already asked for some follow-up labs to be done on this person. Now, even more interesting to me is the fact that this possible donor lives in Europe. That makes a lot of sense, since my genetic heritage is 50% Swedish, about 25% German and the other 25% is almost all English, Irish and Scottish, with a trace of French Huguenot tossed into the mix.<P>
So, next week we start looking at my possibilities and will start trying to decide what might be the best time to get on with the transplant. I still do not want to do this, but it looks inevitable. Iāll see what Doc Thompson has to say and hear what he found out at the āgrand roundsā at which he is supposed to have presented my case. I will literally have to trust him and the other M. D. Anderson docs with my life. Just like so many other folks have for years and years.<P>
The day after my meeting with Doc Thompson I had another CT scan done; abdomen, chest, head and neck, the whole thing. I have had a chance to look at the report on-line and the reports are good. All my enlarged lymph nodes are shrinking rapidly. That and the normalizing blood counts make it look like I might soon be in a great remission. At which time, I will need to make a decision.<P>
A couple more short topics before I close. If youāve read my stories for a while you know that I have been seeing Dr. Keating for a decade or more. Yet I havenāt mentioned his name at all in connection with my venetoclax trial. And I canāt be sure, but from the asides and looks on folksā faces when I ask the question about why he isnāt in the study, it sounds like he didnāt take the āclassā AbbVie requires of all docs who use venetoclax. And it sounds like he probably skipped it willfully. I infer that he flipped them a metaphorical middle finger and probably said something to the effect that āI donāt need to take your effinā class to give this drug. Iāve been treating CLL for decades and am a world renowned clinician and teacher.ā Understand that these are my imagined words and in no way constitute a quote. But itās interesting that one of the most famous CLL docs at MDA is not allowed to have his fingerprints on the study.<P>
And one other thing; a few weeks ago I wrote up a little tutorial about what lab tests meant in terms of a white blood cell count of 1,000, or 100,000 or whatever. I was reading over my story again last week and realized that I have my units wrong! Probably there will not be one person in a hundred who will care, but I want to point out that my numbers were off. Just a bit. By a factor of 1,000! The blood counts I referenced are the number of cells in a microliter (or one millionth of a liter) and not in a milliliter (which is one thousandth of a liter). So, if you multiply all the numbers I was proudly showing off with by 1,000, you will have correct numbers. So the five billion white cells I was mentioning actually should be five trillion cells. And the same for all the other totals mentionedā¦just multiply by 1,000. If anyone really cares.<P>
Dave<P>
āThe future aināt what it used to be.āāYogi Berra<P>Dave Eckberghttp://www.blogger.com/profile/08992997044938074424noreply@blogger.com0tag:blogger.com,1999:blog-6928201955721701591.post-82174085475945495092016-09-10T22:16:00.000-05:002016-09-10T22:16:57.955-05:00Supporting Leukemia ResearchBook 6, Chapter 1, Verse 3<P><BR>
I want to take a moment from telling my little stories to touch on something thatās very dear to my heart and important to the lives of many people across the world. Thatās the topic above; Supporting Leukemia Research.<P>
In my ācareerā with this disease, which is now approaching fifteen years, I have intersected with leukemia research many times and in many forms. Iāve been a beneficiary of its results, Iāve been a participant in the studies of new drugs and new combinations of drugs and Iāve actively supported the research efforts by making personal donations and by raising funds to help major institutions further the studies of better ways to combat our diseases.<P>
When I first fell ill, in the spring of 2002, I was extremely disappointed to find that there really wasnāt much out there that was very good for CLL. My dad had died of CLL 25 years previously, and I found very quickly that despite a quarter century of study, there still were no really good treatments available. The best thing going was a combination of fludarabine (Fludara) and cyclophosphamide (Cytoxan). But this combination was, in many ways, like taking Tylenol for pneumonia; the drugs lowered your white count and made it look like you were doing better (much like Tylenol would lower your fever and make you feel better if you had pneumonia) but they really didnāt do anything about the disease. It always came back!<P>
But that very year, my doc in Denver where I lived at the time, read an article about Dr. Keatingās new groundbreaking research into using the Fludara and Cytoxan in combination with a newer drug, rituximab, which was not yet even approved for CLL. He reported incredible results with amazing rates of complete remission, rates never seen before. And many of the remissions were very extremely durable. Some folks in the original studies, from over 16 years ago, are STILL in remission and are cautiously being said to be ācured.ā This new āFCRā combination rapidly became the gold standard for the treatment of CLL and it rapidly became the frontline therapy world-wide. And as it was, I too received the FCR in Denver in late 2002, despite its not being yet approved by the FDA for my disease. I was probably the very first person in that wonderful town to derive its benefits. By the way, rituximab was developed, in part, with the support of the Leukemia and Lymphoma Society.<P>
In 2008, I was relapsing again, and by now was being seen by Doctor Keating himself, in Houston. It came time to treat me again, but when youāve relapsed from CLL a time or two, there are no ābestā treatments available. Just lots of confusing choices to decide among. But Dr. Keating told me there were a couple of studies available. I signed up for one, which was to involve harvesting my CLL cells, treating them to make them appear āforeignā to my body, and then reinfusing them so my own immune system would start killing off leukemia cells; in essence, immunizing me against my own disease. That was the theory. I was all set to begin this study when it apparently went awry somehow. I donāt know details at all, but suddenly that study was off the table. It rather sounded like there was an āadverse event,ā as they say in med-speak, with another patient who had enrolled earlier than I had. But, thatās what happens sometimes in these trials. You donāt know before you start exactly how theyāre going to turn out.<P>
So, I instead signed up for another study which was open at the time, one which combined the previously mentioned āFCRā with an antibody called bevacizumab (Avastin). I took the combination for six consecutive months and at the end, was in a complete remission, one so complete I was said to be āPCRā negative, which meant that they could find no evidence of disease even at the molecular level. I wondered if I might be curedā¦but I knew better. This stuff just about always comes back.<P>
But I was feeling well and wanted to start giving back to the researchers who were working behind the scenes on behalf of me and so many other folks like me. I had joined the Leukemia and Lymphoma Society and its fund raising arm, Team In Training (TNT) in early 2007 and had attended meetings, given short talks called āMission Moments,ā and spoken to people training for fund raising events, like marathons, half-marathons, triathlons, 100 mile bike rides and much more. I fully appreciated what they were giving up with the time they spent training, coming out early in the morning when they could have been sleeping in, and raising money for the Leukemia and Lymphoma Society. And they were doing it for me! And most of them didnāt even know me. <P>
So in late 2008, to help pay back what they were doing for me, I joined them on the trails, early in the mornings. I started walking, first a mile or two, then three or four, then eight miles and eventually, I was walking (not running!) 13 miles at a time. I was doing half-marathons. And while I was doing all this training, I was asking for donations to the Leukemia and Lymphoma Society from friends, family, neighbors and colleagues. I found myself doing three or four half-marathons a year, and I raised several tens of thousands of dollars for the LLS.<P>
I kept up this pace until mid-2011, when I started slowing down and not feeling well. I did my last half-marathon in San Diego that May and shortly thereafter was found to have greatly enlarged lymph nodes in my chest and abdomen. The disease had come back after three years of remission. And, what was worse was that it had come back as the 17p deletion variety, the absolutely worst subtype of CLL. My longevity at that point, if untreated, was said to be about 12-18 months.<P>
Dr. Keating tried a new drug on me, one that had recently been approved for CLL, one called Arzerra, but we knew going in that it only had about a 50% chance of working in my situation. And, I fell on the outside of the 50% margin. It didnāt help me at all.<P>
But, at that point Dr. Keating invited me to join a clinical trial of yet another new drug, one which had just come out of Phase 1 trials. This drug was so new it didnāt yet have a name. It went simply by its developmental code name, PCI 32765. By now I had swollen lymph nodes in my belly and chest which were up to eight inches in diameter. I looked like I might be pregnant! I had been hearing great things about this new drug and was happy to sign up for this trial. I started taking the PCI 32765 (which became ibrutinib and then Imbruvica) in March 2012 and it started working immediately. I could feel the difference in the pressure in my belly within the first week! It was amazing, truly amazing, to me. Imbruvica, as itās called now, was also developed, in part, with support from the Leukemia and Lymphoma Society.<P>
After about six months on this miraculous drug, I was feeling much better, except that one major side effect of it was joint pain. I tried to come back to my LLS/TNT teammates but found that each time I tried to train for an event, my joints, and especially my knees, hurt too much. So I had to give up that part of my association with TNT.
<P>
But, during the time I was actively doing TNT events and ārunningā my half marathons, a couple of our kids joined me and walked with me. They also raised money for the organization. And they have continued that practice even after I had to drop out.<P>
Earlier this year when our daughter, Jen, heard that I had relapsed yet again and was going to have to get into yet another trial (as there are still no ābestā or any single correct option for treating this disease after youāve relapsed several times) she told us she was going to sign up for another event and, again, raise money for the Leukemia and Lymphoma Society. And to that end, sheās now been training and fund raising for several months, in preparation for her half marathon to be held in November. She gets up every Saturday at between five and six in the morning to go out and train. It gets very hot in Texas so she runs with her teammates early in the morning before the sun comes up. She and her teammates get nothing out of this except for a T-shirt and the personal satisfaction of knowing they are part of a greater mission. And that they are helping others, like me and so many other leukemia and lymphoma victims, who are waiting for new and better drugs to be developed. We are in never ending hope that a cure will be found to take these diseases away from us and our friends and families.<P><br>
Meanwhile, for similar reasons our elder son, Jon, is in training for a leg of the Dallas Marathon relay, which will be held in December. Heās starting to train out in El Paso but will come to Dallas for the event and he, also, is raising money on behalf of the Leukemia and Lymphoma Society. He has the same issues with training in the heart and early in the morning. Hey, itās hot in El Paso. But heās dedicated. Additionally, he has the burden of training by himself and not with his team, which is 600 miles to the east in Dallas.<P>
I havenāt asked my friends and family for any donations for several years now, but Iād ask that if you can, please donate something to the Leukemia and Lymphoma Society through our kidsā web pages, below. Hey, and if you look at Jenās page (JMassaviol, below), youāll also get to see a ācuteā picture of me and one of our daughter as well. I will personally appreciate anything you can do for them and the many patients who will eventually benefit from the results of cancer research.<P>
<a href="http://pages.teamintraining.org/ntx/lnrnr16/JMassaviol">http://pages.teamintraining.org/ntx/lvrnr16/JMassaviol<P></a>
<a href="http://pages.teamintraining.org/ntx/dallas16/JEckberg">http://pages.teamintraining.org/ntx/dallas16/JEckberg<P>
</a>
Iām now in week fifteen of my venetoclax trial and am still doing great. I have essentially no side effects. The most common side effect is nausea and Iām happy to tell you that I have had absolutely none. Thatās important, because I can easily become nauseated. As Iāve told my family many times, I hate to vomit. It makes me sick!<P>
Yesterday I received the results of my recent bone marrow biopsy, and the smear is almost normal. Thatās hard to believe after only a little more than three months on venetoclax, but it is known for clearing disease out of the marrow. Itās a great drug. But stillā¦Iām probably looking at a stem cell transplant in the near future. I got a call from the transplant team at M. D. Anderson last week, and theyāre already looking for a donor for me. I guess Doc Thompson has been in touch with them. Iām supposed to see them in a few weeks so we can talk things over. Weāll see what they have to offer. Iāll get another update out real soon to explain why a transplant may be in my best interests right now, despite the excellent results Iām having with the venetoclax.<P>
Next (really, this time)āan update on our last visit to M. D. Anderson and the logic of pursuing a stem cell transplant despite my doing great on venetoclax.<P>
Dave<P>
āThey always say that time changes things, but you actually have to change them for yourself.āāAndy Warhol [So, please help change things by donating to the Leukemia and Lymphoma Society through our son or daughter, or any other person you know of who is working for the goal of curing these diseases!]Dave Eckberghttp://www.blogger.com/profile/08992997044938074424noreply@blogger.com0tag:blogger.com,1999:blog-6928201955721701591.post-23908348520106629132016-08-19T20:58:00.000-05:002016-08-25T22:38:40.564-05:00Ramping Up The VenetoclaxDaveās Great Adventure<BR>
Book 6, Chapter 1, Verse 2<BR><P><BR>
The Muses have not been kind to me.<P><BR>
For almost two weeks I have been trying to get the second part of my venetoclax story written and sent. I have written, revised, rewritten it and then decided my stuff was too detailed, tedious and boring. I rewrote the whole thing, only to lose it to a power surge during a thunderstorm. Arrgh! So Iāve modified a previous version and here it comes. Hereās the deal; if youāre interested in the problems we encountered in just trying to get into the trial, keep on reading. But if youāre just interested in the venetoclax study itself, skip down to the āRamping Up the Venetoclaxā part.<P>
JUMPING THROUGH HOOPS<P>
I met Doc Thompson in the first week of May and thatās when he signed me up for the venetoclax study. That was quick and easy. It also turned out to be just about the only quick and easy part of this process. He introduced me to our hard-working research nurse, Blanche, who was in charge of integrating me into the study protocol. Blanche immediately started butting her head against several walls. She had to get approval from our insurance carriers to get me into the study, then try to get permission from the sponsor to waive having to repeat all the preliminary tests Iād had done just nine weeks previously, make appointments for any tests I still needed to get done and then, finally, when all this had been done, she had to get the sponsor (in this case, Abbott Pharmaceuticals or their biologics branch, AbbVie) to review my labs and other studies and agree that I was fit for the venetoclax protocol. We thought it might take a couple of weeks. It took well over a month!<P>
Blanche first had to get insurance approval for me to be in the study. Yes, when youāre in a research study, the drug company will pay for the āstudy drug,ā and also for any strictly research tests that are done in connection with the study (like drug levels in your blood, etc.) but your insurance is expected to pick up the tab for any āroutineā testing which has to be done. But I had just had a battery of expensive tests done within a couple months of signing up for the venetoclax protocol. Remember that I had a couple daysā worth of tests, including the bone marrow biopsy, CT scans, EKG, echocardiogram, numerous blood tests (you canāt believe how much some of these specialty blood tests cost) and more when I signed up for the nivolumab study in March. Would insurance pay to get them done again? Would the sponsor waive the requirement to repeat them after such a short period of time?<P>
Blanche thought it might take a few days to a week to get the insurance approval. But it took a couple of weeks or more. I didnāt like the waiting. I was getting worried, seriously worried about the progression of my disease. By now, after all the delays I'd experienced (see my previous blog entry) I had been relapsing for something approaching nine months. The daily aching of my lymph nodes in my armpits reminded me that I was sick. I worried out of proportion to the length of time it was taking, but I now knew that some 17p folks like me have āexplosiveā relapses when they fail the ibrutinib and I also knew that I apparently only had a 60% chance of responding to the venetoclax in the best of circumstances. In other words, I had perhaps a 40% chance of dying fairly soon. I was getting physically ill with these thoughts. But, there really wasnāt much else to do. I was scared. I feared that something was going to happen while we were waiting for all these approvals which would knock me out of the study.<P>
After anxiously emailing Blanche a few times, inquiring about the (to me) prolonged time it was taking to get the insurance approval, she finally got it a couple weeks later. Great news! But, meanwhile, the sponsor refused to waive any of the preliminary studies. So, I had to be scheduled for all of the ones Iād just completed plus more. Blanche ran into a scheduling nightmare trying to schedule, again, manifold blood tests, a PET scan, the echocardiogram, EKG, another bone marrow biopsy and more. <P>
Up until recently it had been fairly easy to schedule things like that, as each nurse could apparently do their own scheduling. But, in March of this year M. D. Anderson inflicted a new electronic records system on the staff. Ostensibly this is to make everything easier for the staff. In practice, it has made so many things harder, slower and more complicated for them and the patients, too. I could write a whole chapter on the changes Iāve seen at M. D. Anderson just in recent months. I love the place. I love the staff. But I have found myself getting angry with āthe systemā and how staff and patients alike have been getting jerked around in recent months. Appointments appear and disappear randomly, tests ordered never make it to the lab, medication orders donāt find their way to the pharmacy. Sometimes the computer doesnāt even know where weāre āauthorizedā to get our blood pressure and weight taken, as if it should make any difference at all. But thatās all Iām going to say in these pages.<P>
Blanche set about trying to schedule all the needed tests, which required a great deal of coordination, some tests being able to be done only after others had been completed. She worked, I worried. Days went by, another week went by. Finally, we got a phone call from Blanche. It was about 5:15PM and we were watching the news. The stars had aligned and she had everything scheduled for me. She told us we needed to be in Houston THE NEXT MORNING to start the three days of required tests and scans! We threw some clothes in our bags and headed out, making hotel reservations en route. We didnāt arrive until after 11PM that night, but I was oh-so-glad to be getting going on the study. This was the start of seven consecutive weekly 600 mile round trips to Houston.<P>
Getting the testing done was actually fairly straightforward and, except for a lot of wasted time sitting around, went well. People in the know at M. D. Anderson tell me that the āM. D.ā in the name stands for āMost of the Day.ā There can be a lot of waiting at many appointments, but Iām happy to wait. I was very happy to get the testing behind us because Blanche had me scheduled, finally, to start the drug the following week, the first week in June. After completing all the required tests, we left for home on Friday, with plans to return the following Monday, with the drug trial to begin on Tuesday.<P>
After just enough time at home to wash clothes and get some cash, we headed back down I-45 on Monday. Our appointments hadnāt yet been made but Blanche was going to set them up as soon as the sponsor looked over my test results and gave the final approval. We waited for the call to let us know what we were supposed to do. We got the call while in the hotel room in Houston, on Tuesday morning, but it wasnāt the call we wanted. Bad news. The start of the drug testing had to be postponed. My tests were still in processing and werenāt yet ready. āGo home,ā we were told, and weāll try again next week.<P>
Home we went, now waiting for yet another call to let us know that everything was ready. The call came. More bad news. Abbott/AbbVie wasnāt happy with the PET/CT scan, which had been done without IV contrast. Weād have to repeat it, this time with some sort of iodine contrast material (which is injected into a vein at the time of the CT scan). To save us yet another trip to Houston, Blanche added this additional CT scan onto the next weekās schedule, on the Monday before I was to start the protocol. We came back the next week, did the CT scan with contrast and everyone was now happy. We were finally in!<P>
RAMPING UP THE VENETOCLAX<P>
Venetoclax is a great drug. Itās a powerful drug. Itās too powerful to be used casually. In its early studies, some patients died. Doctor Thompson tells a story of one of the first patients he treated with venetoclax in the early trials. The patient had a white count of about 100,000, high, but not unusual for a CLL patient (normal white counts are about 6,000, +/- 3,000 or so). The standard dose of venetoclax is 400mgs, but to be careful, they gave this patient only a half dose; 200mgs. Eight hours later the patientās white blood cell count was only 1,000!<P>
SCIENCE LESSON FOLLOWS: Let me explain what that means. It does NOT mean that, in dropping from 100,000 to, 1,000, the drug killed off 99,000 white blood cells. When you have a number in your blood tests, like the 100,000 number above, what it means is that the test shows there are 100,000 white blood cells <b>per every milliliter</b> (or ācc,ā theyāre the same thing) of blood in your body. The average adult has about five liters (or 5,000 milliliters) of blood in his/her body. So, a white blood cell count of 100,000 means that person actually has 100,000 white blood cells/ml x 5,000mls of blood in the body, or 5,000,000,000 total white blood cells. Thatās 5 BILLION white blood cells! So, in this case, when the venetoclax rapidly dropped this patientās count from 100,000 to 1,000, it actually had rapidly killed off about 4,950,000,000 white blood cells, give or take a few dozen, in just a few hours.<P>
Thatās all well and good, but all those dead white blood cells and their contents have to go somewhere. These cells have proteins, electrolytes (like potassium) and a lot of inflammatory chemicals. These things can clog up and damage the kidneys, cause heart rate irregularities and more. They can cause whatās called ātumor lysis syndromeā (TLS). Thatās basically just dissolving too much ātumorā in too short a time for the body to handle the debris (this can happen with other drugs and other tumors as well).<P>
I mentioned that a number of patients have died as a result of being treated with venetoclax. Thatās not good news, obviously, for lots of folks. So, to minimize this very significant risk, the drug manufacturer has wisely made it hard to give venetoclax to CLL patients. It has put a number of restrictions of who can give the drug and how they can give it. First (as I understand it), any doctor who is going to give the drug has to go through specific training sponsored by the manufacturer. Secondly, those patients who are to receive the drug and who are considered to be at āhigh riskā for TLS, must be admitted to the hospital during the early stages of therapy so they can be very carefully monitored (described below). Those not admitted are still required to be carefully monitored with additional blood testing and exams. In every case, the drug is initially given in very small doses and āramped upā very carefully and deliberately over five weeks.<P>
I was considered to be āhigh risk.ā Anyone with a white blood cell count over 25,000 or an enlarged lymph node over 5cms (about 2 inches) in size was defined as high risk. My white count was 34,000 and I had at least one node that was 8cms, or about three inches in diameter, among the dozens of enlarged nodes I had in my belly, chest, neck and under my arms. So, I got admitted to the hospital to start the drug.<P>
While in the hospital I had an IV going continuously, giving me an extra two liters (about a half gallon) of fluids every day, plus the fluids I got in my diet and all the water the nursing staff kept pushing me to drink. I also got to collect all the āoutputā for them to measure, in a process I called āOperation Golden Flow.ā They needed to know that all those fluids were coming out and not building up in my body somewhere. All this was designed to make sure my kidneys were working well and dealing with the cellular debris which was being created by the drug.<P>
And I got stuck a lot. I had labs drawn before I took my first dose of the venetoclax and then every four hours for 12 hours, followed by several other tests during the next 36 hours. This was to check for any early signs of TLS and to look for how well the drug was working. I also had more tests before and after my second dose the next day.<P>
I have mentioned how carefully and deliberately the drug is āramped up.ā This is how we started. The standard dose of venetoclax is 400mgs per day. But, for a new patient, the initial dose, given for the first full week, is only 20mgs. Thatās only 5% of the standard dose. But, even at that miniscule dose, it started working. Within days, I could feel my nodes first swell a bit with inflammation induced by the drug, and then start to shrink.<P>
I was discharged from the hospital after about 48 hours or so, and after another blood count the following day, we went back home, with me taking the 20mgs daily at home. But we came back in a week and I was admitted yet again, with the same routine except that this week my dose was increased to 50mgs daily. Same routine; blood tests before and every four hours after the drug was given, the IV going continuously and measuring all my urine output. Thereafter, I was allowed to increase my dose, weekly, as an outpatient, going from the 50mgs dose to 100mgs, then to 200mgs and finally to the final 400mgs dose, each time staying at the new dose for one week. And each week we were back in Houston for exams, labs and follow-up. In fact, every time we increased my dose I had blood tests done before the new dose, then 8 hours later and again in 24 hours, before being allowed to take the second dose of the new amount. They were exceptionally careful. And Iām very happy about that.<P>
Iāve now been on the venetoclax for about 10 weeks. My white count now is actually low, but adequate, at about 2,600. My red cell count has come back from being a low 28% (normal for a male is more like 45%) up to the mid-30s. And my clotting cells, the platelets are back up to 100,000 for the first time in years (normal is 150,000 to 300,000 or so, but 100,000 is more than adequate for clotting). All the nodes in my armpits have disappeared and I presume the ones in my belly have too. And I can report that there are few to no side effects. No nausea (which is the most common side effect), no joint pains like the ibrutinib caused, no hair loss, no rashesā¦nothing but some minor fatigue. Good news all around. I guess.<P>
When I first started on the venetoclax in June, even before my first hospital admission, Doc Thompson mentioned in passing that at some point we should probably talk about a stem cell transplant. Now, I know that I may have to cross that bridge sometime in the battle against my disease, but I didnāt expect it to be very soon, since the venetoclax holds a lot of hope for folks like me. But, after just two months on the drug, he again mentioned, more strongly, his interest in having me see the transplant team, so well am I doing. Everything is going just greatā¦and he wants me to see about getting a transplant!<P>
But for a transplant to have the best chance of succeeding, I need to be in a good remission. We will soon see how good a remission I am getting into. To that end, on August 23rd, which is our 47th wedding anniversary, I will be face down on a procedure table at M. D. Anderson with a large bore needle stuck deeply into my hip, drawing out some bone marrow to see how much disease is left in there. Iāll also be getting more blood tests and CT scans of my belly, chest and neck, looking for tumors. Weāll see, very soon, what shows up and where this will lead.<P>
Next: The rationale for going for a potentially risky transplant while youāre doing just great on a newly approved drug!<P>
Dave<P>
āIf you think health care is expensive today, just wait until itās free.ā P. J. OāRourke<P>
Dave Eckberghttp://www.blogger.com/profile/08992997044938074424noreply@blogger.com0tag:blogger.com,1999:blog-6928201955721701591.post-43150197704027695772016-08-07T14:05:00.000-05:002016-08-30T22:34:12.123-05:00Nivolumab, pneumonia and venetoclax!
Book 6, Chapter 1, Verse 1<p>
Nivolumab, pneumonia and venetoclax!<p>
āLife is a crooked line. Itās rarely what you plan.ā āChuck Slaughter, founder of TravelSmith<p>
Or, as Iāve quoted many times before in this long story, āIf you want to hear God laugh, tell Him your plans.ā<p>
Indeed, my life and plans have not been a straight line. I have settled in several times to write an update to my story, only to have our plans changeā¦over and over again in the past six months. I will try to tell you of all these permutations of our plans in a somewhat condensed form, but those long-time readers of my stuff know that it is hard for me to tell stories succinctly. I always seem to render them in excruciating detail. I canāt help myself. Hey, I diagnosed myself with āhypergraphiaā several years ago. I guess it doesnāt heal itself!<p>
Last January it looked like I was relapsing. The folks at M. D. Anderson made plans for me to get a huge number of tests and to return in a month for follow-up. And indeed, on my return a month later, the manifold tests showed that I was indeed relapsing, that I was failing my wonder drug, ibrutinib. Iād long known that it was possible to relapse on ibrutinib, but I had done so well for so long, I was thinking Iād have many more good years on this drug. I knew of some folks who have been on it five years or more and continue to do well. Iād hoped to be one of them.<p>
But, since I was relapsing, we had to come up with a plan for my next treatments. I mentioned at the end of my āBook Fiveā that Doc Keating was considering trying the checkpoint inhibitors on me. To that end, I was signed up for a clinical trial which combined the ibrutinib with a checkpoint inhibitor called nivolumab (trade name Opdiva) which is already on the market and shows success against lung, kidney and melanoma skin cancers. It had not, however, been used against leukemias except in a very few small trials. But it looked promising. <p>
In February, I signed all the appropriate paperwork usually associated with clinical trials (laying out all the known and unknown risks). I also was scheduled for a whole raft of new tests to make sure I was eligible and qualified to be in this clinical trial, for which you have to be sick enough, but not TOO sick, to get in. The tests, which were scheduled for early March, included about a dozen tubes of blood being drawn, another bone marrow biopsy, CT images of my abdomen, chest and head and neck, an EKG and, finally, a cardiac echogram. I believe just getting eligible for the study set my insurers (the taxpayers of Americaāthank you very much!) back about $10,000 or so.
All the tests went well so I was scheduled to begin the trial, which was the nivolumab in combination with my recently failed ibrutinib, later in March. But let me digress for just a moment in telling this story.<p>
Initially I had great interest in getting into the nivolumab plus ibrutinib study. It sounded exciting (any drug that can help you stave off certain death HAS to be exciting, I think) but the more I thought about it, the less I liked the idea. I could find close to nothing in the medical literature showing that nivolumab had significant effects against CLL cells, and I knew already that my CLL cells werenāt responding to the ibrutinib any longer. āWhat was the point,ā I thought to myself. But, I was scheduled to begin the study at the end of March and we went forward with the plan.<p>
Then the trajectory of our plans went sideways. Our family had a long-planned trip to Alaska set up for mid-March, just before the start of the ānivoā study. We were headed to Fairbanks, the better to see the Northern Lights, plus we had plans to go dog sledding, snow-machining, flightseeing and more. We had a wonderful time up there as I mentally prepared myself for the upcoming study to start.<p>
But, as we flew home from Alaska, I developed a fever. Followed by shaking chills. Followed days later by a persistent and vicious cough. I thought I had a bad cold. After about ten days of this, it was time to go back to Houston to start my new trial. There I saw my nurse practitioner, Jackie, who asked some questions and listened to my chest for a few seconds. āDo you want to be admitted?ā she asked. āHell, no!ā I responded. I still believed I had just a bad cold and maybe a little post-viral bronchitis. But Jackie ordered a chest X-ray. It showed ādouble pneumonia,ā pneumonia in both lungs! When the X-ray results came back, Jackie told me-- didnāt ask me-- āYouāre getting admitted!ā They ended up growing both the bacterium Pseudomonas and the virus human meta-pneumovirus out of me.<p>
And so it was that I spent April Foolsā Day on the 16th floor of the M. D. Anderson hospital wing. Unlike the long-ago April Fools, who were celebrating New Yearās Day in April, not yet having heard about the change from the Julian to the Gregorian calendar, I knew the correct date. I just didnāt know when Iād be able to start my new study drug, the ānivoā. I was sick enough that it couldnāt be administered, but I really wanted to get going with something. I could feel lymph nodes in my neck and underarm areas growing, seemingly on a weekly basis. <p>
But the study was postponed while I was tied to a hospital bed with an IV pumping in industrial strength antibiotics Iād never heard of before (ever hear of linezolid or cefepime?). I spent four days on the ward and then another five weeks on various oral antibiotics, trying to get well enough to start up the trial of nivo. All the time I was impatient to get going on the study. My nodes were getting bigger all the time and aching daily.<p>
Then the trajectory changed again. I went back to M. D. Anderson in early May to see Doc Keating to see if I was finally well enough to start the study. We were running out of time, as the cluster of tests Iād done in early March were going to āexpireā after 60 days and those days were about used up. But, Doc Keating wasnāt there. He was out recovering from back surgery, having been involved in a freak incident. As I hear it, there had been a car fire in the hospital parking garage and someone, driving too fast to get away from it, almost ran Doc Keating down. He dove out of the way, injuring his back and ended up requiring surgery.<p>
So, instead I saw his protĆ©gĆ©, Dr. Phillip Thompson, another Aussie who specializes in CLL and who is being groomed to take over for Doc Keating. Doc Keating is now working part-time and is slowly, very slowly heading into retirement. It was great to meet Doc Thompson after having only heard about him from other patients lately. If you see any of the patent Power videos concerning updates in CLL, youāre probably seen a lot of Doc Thompson in recent months.<p>
Dr. Thompson examined me, felt the enlarged nodes in my neck, under my arms and in my belly (he could tell they were there though I could not) and we talked about the nivo study, for which I was still signed up. But Doc Thompson said that the early results of that study werenāt encouraging, that the response rate wasnāt very good. He felt that it was disappointing that they werenāt better, because in theory the nivo should be a great treatment for CLL. But, since it wasnāt working out well, he suggested I enter into a study of another drug called ABT-199 (also known by its generic name, venetoclax).<p>
Iād been hearing more and more about venetoclax lately and in fact, knew that it had been approved for certain CLL patients just the month before. Itās been in development for about as long as ibrutinib, but some early problems in its testing phase set it back. This stuff really works! It works, maybe, too well in some cases. There were a few deaths of some patients early on because this stuff kills off CLL cells so fast that the cellular debris and the inflammatory chemicals in the CLL cells overwhelmed some folksā kidneys and immune systems in a condition called ātumor lysis syndrome.ā Itās nothing to mess around with.<p>
I was happy to hear that I could sign up for a venetoclax study. I had actually wanted to get into one the previous February when I signed on to the nivo study, but there were no venetoclax studies open at the time. I knew it was a wonderful drug for CLL and I also knew that the docs administering it were exceptionally careful in giving it now, knowing full well the deadly complications it could bring on. And so I signed on to the study.<p>
Only then did I go looking for recent updates on the drug and folks in my condition. You will remember that I have the deadly 17p chromosome deletion and I also now have failed the ibrutinib after more than three years. I looked up recent studies of folks like me who were taking venetoclax. There was one such study. It flatly stated that patients who have this chromosome abnormality AND who have failed ibrutinib have a ādismalā prognosis. They had recently started a study using venetoclax on some of these patients. At the time of publication they had signed up 18 study patients. Four of them were already dead six months into the study. And, the overall response rate was said to be about 60%. That left 40% of those patients with little hope. That scared me. It really scared me. So, as I entered into the study I wondered if Iād be one of the lucky 60% who at least showed some response to this drug, which apparently was now my last and best hope for survival, or whether Iād be one of the 40% for whom there would be little hope.<p>
--Next; slowly and carefully starting the venetoclaxā¦and maybe a transplant?<p>
Dave<p>
āExperience is the comb that life gives you after youāre bald.ā āChinese proverb
Dave Eckberghttp://www.blogger.com/profile/08992997044938074424noreply@blogger.com0tag:blogger.com,1999:blog-6928201955721701591.post-41346902986500004172016-01-16T15:58:00.000-06:002016-01-16T15:58:33.018-06:00Relapse After Four Years on IbrutinibDaveās Great Adventure<br>
Book 5, Chapter 2, Verse 12<br>
January 12, 2016<br>
<p>
<p>
Well, we had a great run, didnāt we, ibrutinib and I? Iāve been using the stuff for almost four full years and it has done wondrous things for me. I was pretty sick, with an aggressive mutation of my CLL. I had a white count of almost 100,000 and large, swollen lymph nodes throughout my body, including masses up to about 8 inches in diameter in my belly, chest, neck and under my arms. Life expectancy without treatment was said to be about 16 months or so at that point. Wow.<p>
When I started on the Phase1/2a study of ibrutinib, in April 2012, the researchers had just completed a study on the first 110 patients and needed 40 more for the next step. I was extremely lucky to have been given one of those 40 openings. I was added on to the second phase of the study which added the anti-leukemia-cell antibody, Rituxan. Iād had this drug before with most of my other treatments, but never before in such close-together doses, as I was treated with the stuff weekly for the first five weeks of my therapy before backing off to four more monthly doses. It and the ibrutinib worked spectacularly well. I honestly could tell it was working within the first week. I could feel the pressure being taken off my belly as the tumors rapidly began shrinking. I was amazed and thrilled! <p>
Within months my white counts normalized, my bone marrow biopsies were close to normal and my CT scans showed the tumors melting away. I was in clinical remission. And everything stayed stable with normal white cell counts from that point on. My low platelet count didnāt come back to normal, like Iād hoped, but just about everything else did. I began feeling fairly normal again. And just as I had during past remissions, I started forgetting I had the disease. It didnāt seem to really be a part of my life anymore, so well was it suppressed. Kathy and I have felt that way before, as if it no longer existed.<p>
But we know better. CLL is an insidious disease. It almost always comes back, and every time it comes back, it tends to be more aggressive. The remissions tend to get shorter and shorter. But in between these relapses you start to feel pretty good and can almost forget you have the disease, so normal does life seem. And then just when youāre thinking youāve beaten the diseaseā¦itās back.<p>
Now, even though I was in clinical remission for many months, even years, and felt much better, I have to confess that I didnāt feel completely normal. I had the joint pains that many folks taking this wonderful drug have complained about, but it was never debilitating and the pains were just intermittent. Yeah, I sometimes had to limp around for a day or two, on a sore foot or knee, and sometimes it hurt to move my wrist into certain positions, but the problem almost always took care of itself with a few days. I know lots of folks who had to take lots of drugs like Motrin or Naprosyn and such because of their pains. But that creates other problems, since the ibrutinib makes your platelets less able to clot. The Motrin-like drugs make that issue worse and can increase bleeding problems.<p>
More seriously, Iād been having occasional heart rate irregularities, specifically one known as atrial fibrillation, usually shortened to āa.fib.ā A.fib is known as an āirregularly irregularā heartbeat, wherein the heart beats with no regular rhythm at all. Thatās unlike the irregular heartbeats many of us feel from time to time, when we have a few extra heart beats before our heart resumes its regular rhythm (after too much caffeine, too much stress or too little sleep). A.fib is a problem because when the heart has no regular rhythm, clots can form in the upper chamber of the heart and then travel to various parts of the body. When clots travel to the brain, they can cause a stroke. A.fib has been found to be increased in folks who are taking ibrutinib. <p>
I got through my first couple of years on the drug before having my first episode of a.fib, but have had a half dozen episodes since then. The usual treatment for a.fib is whatās called a cardioversion, or shocking the heart back into a regular rhythm. Thatās what you see on all the hospital shows where they put the paddles on someoneās chest and yell out, āClear!ā before shocking the patient. Iāve been scheduled for cardioversions in the Emergency Clinic twice, but fortunately my heart has resumed its regular rhythm on its own each time, within about eight hours, before I got to the ER early the next morning. Iām currently on a heart medication known as flecainide which helps control abnormal rhythms. Weāll see if it controls the a.fib well enough. I also take an anticoagulant medication named Xarelto when I notice that Iām in a.fib to prevent blood clots from forming.<p>
And Iāve been tired. A lot. Many folks with CLL complain of fatigue and there seems to be more of that when on ibrutinib. But, I have denied, I think, how significantly tired I get. I donāt like to admit to weakness, so I get along the best I can and keep doing what I need to do, but there are days when I am very, very tired. There have been times I have told Kathy that I was ādesperatelyā tired. On those days, I was having trouble keeping my head up and my eyes open. There have been days when weāve had to cancel our activities so I can just rest. Yeah, Iāve been tired and it seems to have gotten worse in recent months. I was blaming the increased fatigue on a case of bronchitis that Iāve been fighting for months, but relapsing disease will do that too.<p>
Iāve known for a couple of years that researchers had found that the enzyme which the ibrutinib attaches to (the BTK enzyme, Brutonās tyrosine kinase) which helps it kill off CLL cells, can mutate so that the drug can no longer attach to it. That makes it less effective. I just didnāt know how long that might take to happen and how often it happens. In fact, I donāt even know for sure if thatās what happening to me. To tell the truth, I canāt even be sure that Iām in a relapse with certainty until a bunch of recent tests which are in progress are completed, but I know, with certainty, that my white count, which had been about 5,000 for a couple of years, went to 6,000, then 12,000, then 14,000 and now to 35,000. And 70% of the 35,000 white cells are lymphocytes and all CLL cells are lymphocytes! I had been thinking that the increased white blood cell counts were because of the bronchitis I was fighting and the steroids Iād been taking, but the steroids shouldnāt increase the lymphocyte percentage, just the bacteria-fighting neutrophil white blood cells. And thatās not good news. But it had to happen someday, I suppose.<p>
But even if Iām truly relapsing, I have to tell you that Iāve been so pleased to have been on this wondrous drug for the past four years. At a minimum, it kept me from needing a transplant, a risky procedure which I surely would have had to endure by now if not for the excellent results of the ibrutinib treatments. And my side effects have been minimal. I have had little to complain about, and much to be thankful for.<p>
So, now what? Well, as I have said to many of the folks who have contacted me about having CLL, we now live in something of a āGolden Ageā of CLL research and treatments. When I initially got sick, way back in 2002, there was really nothing that was very good we could use to provide durable remissions. But, just then, Dr. Keating and his crew at M. D. Anderson came out with the FCR regimen, a combination of Fludara, Cytoxan and Rituxan. They achieved remarkable results with this combination therapy. In fact, some folks treated back then have STILL not relapsed and are cautiously being said to have been cured over 10-15 years since their treatments.<p>
And now we have, not only ibrutinib, but several similar acting drugs called idelalisib, ABT-199, and now a second-generation ibrutinib-like drug named ACP-196, which is currently in trials. Itās said to be as effective as ibrutinib but with fewer side effects. And there are others in trials too. Plus, the āimmune checkpoint inhibitorā drugs are now being developed. These drugs release the bodyās own immune system to attack cancers of various types. These, too, have been developed at M. D. Anderson. You may have heard that former president Jimmy Carter has an aggressive skin cancer called melanoma which has spread to his brain. He is, I believe, being treated with an M. D. Anderson-developed drug called Yervoy. The last report I heard was that the tumors in the presidentās brain had disappeared. Thatās amazing, as melanomas are almost always rapidly lethal.<p>
Similar drugs have been developed against lung cancers and other solid tumors. And now the researchers are ready to start treating CLL with these drugs as well. I believe that is what Dr. Keating has in mind for me, though weāll need to talk about my various options and each optionās risk/benefit ratios. <p>
WARNING; BRIEF SCIENCE CLASS FOLLOWS<p>
Let me spend just a bit of time talking about the immune checkpoint inhibitors (hopefully without causing your eyes to glaze over!). I need to start by discussing our white cells. Everyone knows that our white cells protect us from infections and such. But, our white cells are made up of many different types of white blood cells, each with different functions. We have bacteria fighting <b>neutrophils</b>, antibody-making <b>B lymphocytes</b> (which can become CLL cells!), tumor suppressing <b>T lymphocytes</b> and several others, including <b>NK </b>(ānatural killerā) cells, basophils, eosinophils, monocytes and more. For now, just pay attention to the <b>T lymphocytes</b>. These guys constantly patrol, our bodies looking for abnormal cells which may be becoming cancers or other tumors. They do this by looking for unusual proteins on the surface of these abnormal cells. But many cancers can fool the T cells by masking these abnormal proteins. They cover up, if you will, with proteins that the T cells think are normal. When this happens, the T cell leaves the abnormal cancerous cells alone and so they can spread. <p>
But, if an immune checkpoint inhibitor is given, it prevents the cancerous cell from fooling the T cells, so the T cells can release chemicals to destroy the tumor. Thereās no chemotherapy involved in this. The immune checkpoint inhibitors are just special antibodies created to block the cancerās ability to fool the T cells. The bodyās own normal T cells are then allowed to do what theyāre supposed to do and they kill the tumor just as they would any other abnormal cell they come across. Pretty cool stuff! <p> END OF SCIENCE CLASS<p>
Now, this has not been tested in leukemias, to my knowledge, but studies are underway. I may be able to be a Guinea pig yet again, just as I have for so many studies and experimental protocols over my ācareerā with this disease. Hey, this could be exciting.<p>
Now, I know I may be getting a bit ahead of myself, since I donāt know with absolute certainty that I am actually relapsing, but it sure looks that way. In fact, just as I was writing this chapter, I looked up some of my new labs on the M. D. Anderson web site, and I see that my test called a beta-2-microglobulin is going up. Thatās almost certainly a sign of disease progression. Iāll find out the details on our return trip to Houston in three more weeks but thatās what Iām expecting.<p>
I am so very grateful for the world class care Iām getting in Houston. I have all the confidence in the world that theyāll do what is absolutely the best treatment for me and it will be tailored to my specific disease type as much as possible. I literally trust Dr. Keating and his crew with my life. But I also know that at some point, eventually, this disease is likely to take me down. As I said before, what CLL does is that it can come back time and time again until it becomes untreatable, even in the very best of hands. A couple of years ago a personal friend of Dr. Keatingās, who was also a co-founder of Dr. Keatingās research foundation CLL Global, died of complications of CLL after having dealt with it for over 20 years! I heard that Dr. Keating was extremely depressed after this event, as youād expect. But the disease is going to do what itās going to do even when being fought by the very best methods and scientists in the world.<p>
Anyway, thatās where we are for now. Hey, this blog was getting too boring anyway!<p>
Dave<p>
āIt is an inescapable part of the human condition that we live our lives on the knife edge of the present, forever trapped between an unchangeable past and an unknowable future.ā āJohn Steele Gordon
Dave Eckberghttp://www.blogger.com/profile/08992997044938074424noreply@blogger.com0tag:blogger.com,1999:blog-6928201955721701591.post-82772668721723700962015-09-05T19:08:00.001-05:002015-09-06T14:37:06.547-05:00Ibrutinib; My Three and a Half Years on This DrugDaveās Great Adventure<P>
Book 5, Chapter 2, Verse 11<p>
<P>
[My apologies to anyone who has been trying to follow my story and who might have been wondering why I havenāt updated it in a while. I started to compose it (in my head) last March, actually started writing it in June, but then got distracted by some travels, some minor illnesses and, well, just being a bit lazy when it came to actually sitting down and writing. But, now Iāll get it done.]<P>
June 2015 <P>
This story is getting pretty boring. But, thatās a good thing. Even a great thing, as that means things are going so well that thereās rarely anything to report that seems very interesting. I am way overdue in getting an update out and appending it to my on-line blog, but I just havenāt felt like there was anything of interest to report. But, now itās been so long that Iām getting messages asking if Iām okay. And, there have been some changes, so an update is in order.<P>
Last March of this year I celebrated two anniversaries. They were both very significant and the first was entirely the result of the second one.<P>
The first anniversary I celebrated was that as of last March, I have been living with Chronic Lymphocytic Leukemia for 13 years! I donāt know if that sounds as incredible to you as it is to me. But when I first got sick and was diagnosed with CLL, I truly didnāt expect to live more than another 5 to 7 years or so. Many of you know that my father had the same disease and died within about five years. When he was diagnosed, back in 1976, there was no cure for the disease. And, 25 years later, when I was diagnosed, there STILL was no cure. I fully expected to be dead in a few years.<P>
But many things have happened. I was fortunate enough, if I can use that term, to get this miserable disease at just about the time that multiple researchers were finding some more effective treatments. Not cures, mind you, but more effective treatments. Up until that time there were many good folks who advocated for not even trying to treat the disease. The feeling was that the patients would die within about 6 years, whether they were treated or not. So, the reasoning went, why torture them with treatments which arenāt going to help them live longer.<P>
But, I was able to get a number of experimental treatments over the years that have kept me going for more than my expectations. I wonāt go into the details, as they are all recounted in some excruciating detail on my blog postings, but I have been able to go from one new treatment to another, and just when it has looked like I was out of options, new options have appeared. I am one lucky guy. One of my friends in Miami says I have reminded him of a surfer who just keeps catching another wave when one runs out. Yeah, itās really been something like that.<P>
But that brings me to the second anniversary I celebrated in March. About four years ago I got some very, very bad news. I had been dealing with CLL for about 9 years at the time, and my treatments had been fairly successful at keeping the disease at bay for a few years at a time. That was at least in part because I had one of the more favorable chromosome types. This stuff is described in detail elsewhere in my blog, but there are at least five or more major different chromosome types among CLL patients, plus many other complex mixtures of chromosome types. I had, up until that time, a normal male chromosome type, the 46XY chromosomes. But, about four years ago I found that the disease had mutated to a different, much more deadly type called the 17p deletion (also described in detail elsewhere). With this mutation, which does not typically respond well to chemotherapy, my life expectancy was said to be 12 to 18 months, if untreatedā¦and most treatments werenāt expected to work.<P>
So, with my back against the wall, and with no good treatments to fall back on, I prepared for the only real option I had left, a stem cell transplant. Now, these transplants (also called bone marrow transplants) can be lifesaving and many folks are alive today only because they had such a transplant. But, and this is a big ābut,ā many folks have died from attempting the kind of transplant I would need. The death rate for a transplant from an unrelated donor is said to be anywhere from 25%-50% or so, depending in who you talk to. But, with no other options, I was evaluated in the transplant clinic at M. D. Anderson and signed all the papers to authorize them to start the search for a matching donor.<P>
But, the very next day, which was in March three years ago (the other anniversary I celebrated last March), I was accepted into a clinical trial of a new drug, a drug so new that it didnāt even have a name, being called simply PCI 32765, its developmental code name. It had been tried on about 140 other very sick folks and seemed to be working very well for many of them, so I signed up to be in the trial, one of the next 40 patients to try this new stuff.. At the time, I was very sick, having large tumors in my belly, chest, under my arms and in my neck. But, within the first week of starting this new drug, which I was taking in combination with Rituxan, I could tell it was working. My swollen belly was shrinking and the lumps under my arms and on my neck were getting smaller. <P>
And, for me, it has kept on working. I have now been on it for over three years, making me one of the patients who has taken it the longest. There are still about 90 folks out there who have been taking it for over four years now, but with every day, weāre making history, proving this stuff works and helping to find out how long it might continue to work.<P>
Itās not a magic bullet for everyone, however. Of the 40 folks who were in my study group, within two years four had died. I donāt know if it was from disease progression (like Richterās Transformation), bleeding or infection, or what, but 10% of my group is no longer with us.<P>
The side effects have been, at least for me, fairly minimal. I have had intermittent but persistent pains in my joints, usually in the small joints of the hands and feet, but also sometimes in the larger joints as well; wrist, knee, hip, etc. The pains can be significant but are usually transient and last but a few days before disappearing. And I have days, many of them, when I feel significantly tired, even very, very tired. But there can be more serious problems. This drug, now called ibrutinib, and more recently approved by the FDA for general use and trade-named Imbruvica, can also cause heart rate abnormalities, most commonly a condition called atrial fibrillation, or A-fib. I have had two episodes of A-fib over the last year and a half, but both times the condition resolved on its own within less than 24 hours, so I didnāt have to be cardioverted, or āshockedā to restore a normal rhythm.<P>
During the last two years, this medication has worked so well for me that my blood counts are near-normal, with my white blood cell count being about 5,000 at every monthly blood test (normal is about 3,000 to 10,000 or so). So, since my counts are staying normal, and because I am having, at least intermittently, a significant side effect like the A-fib, Dr. Keating has reduced my dose of ibrutinib from the usual three capsules daily, to just one capsule daily. Weāll see how my counts look after a month or so and see if I can stay on the reduced dose or whether I might need to go up to two capsules daily.<P>
As an aside, I should mention that when this drug was first studied in the very first 140 patients, the researchers were comparing a dose of six capsules daily against a dose of three capsules daily. They found, early on, that three worked just as well as six, and caused fewer side effects, so all patients from that time on were given the lower, three capsule dose, which is what I was started on.<P>
However, no one, to my knowledge, has done a controlled study to compare how effective one or two capsules are compared to the standard three daily capsules. I know that since the drug has become more widely available, after the FDAās approval last year, many folks or their docs have tried reduced doses of the ibrutinib. In fact, one of my CLL āpen pals,ā who was having horrible rashes with the drug, completely on his own, and not even at his doctorās recommendation, reduced his dose to two daily and his blood counts have continued to improve over the last year, even though he had very high white blood cell count numbers when he started on the drug. Dr. Keating noted to me that he has a number of folks on reduced doses, many even as low as the one capsule daily that I am now getting. <P>
This could be significant on many fronts. First, if this lower dose works as well as the three capsules a day, then one could expect fewer side effects with no apparent reduced efficacy. Secondly, this drug is VERY expensive. The list price for ibrutinib is $92 a capsule in the USA, or $276 daily. Thatās close to $100,000 a year. If patients could be eventually maintained on just one capsule daily, that would be a significant savings for the patients and their health insurance providers.<P>
Iām happy to have been so stable on the ibrutinib, as I truly think it has saved my life, but while Iām doing well on it, I am having some other issues. Anyone who is diagnosed with CLL is told, early on, that they are now at increased risk for a second, or more, malignancy. For men, the greatest risk is for skin and prostate cancers. Well, a couple of years ago I developed a skin cancer, a small squamous cell carcinoma of my left forearm. It was easily taken care of but now I have to get twice a year full body checkups from my dermatologist. <P>
But, more recently, my blood test level for my PSA (prostate specific antigen) has gone up, more than double lastās number. A visit with the urologist revealed a possible small irregularity of my prostate. But, a repeat blood test a few weeks later showed that the blood test had returned to normal levels. I just had a third test and will see the urologist yet again in a couple of weeks to see where the level has gone. It looks, however, like Iām going to have to have some prostate biopsies to see if I have a prostate cancer, or to prove that I donāt. I donāt really care for the idea of the biopsies, but it probably shouldnāt be TOO big a deal. I hope.<P>
September 2015<P>
Okay, Iām back and Iām going to finish this up. But first I need to update the āupdates,ā as things have changed yet again. First, let me follow up on the prostate issue. Since I wrote all this I have had a series of prostate tests and the levels have gone down, down and down, to completely normal levels. This has happened after a couple of courses of antibiotics, so one presumes that the cause of the abnormal PSA tests was a mild prostate infection. So, no prostate biopsies yet, and Iām to get another PSA blood test next January followed by an exam. Hopefully all will still be normal.<P>
Secondly, the trial of taking just one capsule of the ibrutinib daily didnāt last very long. After one month, my white count was up to 6,700. Now, this is a completely normal number for most folks, but my white blood cell counts had been consistently between 4,500 and 5,500 for the last two years or so on the standard, three capsules daily dose of the drug. So, the rise to 6,700 might have been significant. I reported this result to the folks at MDA and I was put on an increased dose of two capsules daily, about five weeks ago.<P>
But, just as I was starting this new dose, I got sick with a cold which progressed to a bronchitis. Iāve been coughing for several weeks now and finally started some antibiotics when I was well past the usual viral stage of the cold but was still coughing. So, last week, when I got my next blood counts done, my white blood cell counts were up to 10,400, a major increase. Now, this is still a normal number for most normal folks, but itās higher than Iāve been in a few years, since I started the ibrutinib. The question is, did the white count go up because my CLL is no longer well-controlled at the two capsules a day dosage, or did it go up because of the bronchitis. After a bit of discussion with the folks at MDA we decided it was most likely the result of my infection, since bacterial infections can elevate your white counts, as they go to work trying to kill off the invading bacteria and such. Weāll see if the counts are still elevated when I get my next blood test done at the end of September.<P>
I have mentioned, in the past, about the possibility of getting a CAR-T procedure, the āchimeric antigen receptor-T cellā procedure in which oneās own T white cells are harvested and modified to fight leukemia cells. It has been used in some small studies around the country with varying success, but itās not yet ready for prime time, Iām afraid. In fact, the MDA CAR-T tests have gone off the rails. It appears that a large pharmaceutical company hired away the lead investigator and then gave MDA a large grant, and in doing so, created a conflict of interest which MDAās lawyers are looking into. So, for now, CAR-T is not looking like it will be an option in Houston for a while. <P>
But other therapies are coming on strong. First, there have been a couple more oral agents approved for CLL. This gives us more and more options for treating the disease, even if one of the drugs (like ibrutinib, as an example) fails, there are others to go to, like ABT 199, now known as Venetoclax. There are several patients who have been on ABT 199 until they achieved a complete remission and then, very bravely, stopped the medicine. In at least the several months since they went off the drug, the disease has failed to return. This is amazing.<P>
And just as exciting, I think, is the advancing of the Immune Checkpoint Inhibitors. We have known for a while that in CLL and other cancers, the bodyās own immune system fails to control the disease as it should. Researchers have found that there is an inhibitor on the surface of the patientās T white cells, the ones that normally search out and control abnormal cells like cancers, and this prevents the T cells from doing their jobs properly. But, now antibodies are being developed which block this immune inhibitor, turning the cells loose against the disease. This process has been used successfully against several solid tumors, like melanoma and renal cell cancers, and the thought is that these antibodies should work well against CLL cells as well. We shall see. Iāll probably talk about this a bit more in an upcoming message.<P>
I want to finish up with the mention of one more anniversary Iāve had recently. Last month Kathy and I celebrated our 46th wedding anniversary. Thatās another truly amazing anniversary, as when I first got sick, I really didnāt expect us to be able to celebrate our 40th anniversary together. But, now Iām doing so well, and there are so many wonderful new treatments for CLL, that Iām beginning to think Iāll be around for our 50th anniversary. This has been an important union for us, and I couldnāt have gone through all the trials of dealing with this disease without Kathy at my side. Sheās been with me every step of the way and has sat by my side, hour after hour and day after day as I was getting chemotherapy and feeling sick afterwards. Itās so wonderful to have her to rely on. And, weāve had so many wonderful friends throughout this journey who have also given us support, love and prayers all these years. We have been truly fortunate. <P>
And this has gotten too longā¦againā¦as my stories always do. But Iāll be back when there are any changes in whatās going on and maybe Iāll be able to be just a bit more concise in my writing.<P>
Dave<P>
āLife must be understood backwards. But it must be lived forwards āSoren Kierkegaard <P>
PS: If youāre the praying kind, please take a moment to remember our friend and fellow TNT Teammate and Honored Hero, Doug Campbell and his wife Stacey and their daughters, in your prayers. Doug has been in Team in Training for many years and completed many distance events with the team, raising money for the Leukemia and Lymphoma Society even while battling an aggressive, incurable lymphoma. Several years ago, when he exhausted his chemotherapy options he began looking at a stem cell transplant, but a good match could not be found. His family organized many bone marrow donor drives, which will likely help many other folks in the future, but still a good match for Doug could not be found. Finally, about four years ago, I believe, a partial match was located. It wasnāt great, but it was all that was available and Doug needed treatment desperately. So, he underwent the transplant but very soon afterwards began having significant Graft Versus Host Disease (GVHD) complications, wherein the transplanted cells attack the patientās organs. Doug has battled valiantly for several years now, getting through one crisis after another, with Stacey ever by his side. Ironically, the transplant has cured his āincurableā lymphoma but its side effects are beating Doug up badly. Now Doug is in severe heart failure, has compromised lung functions, diabetes and more, and is not doing well. He was offered the possibility of a heart transplant, but has decided that enough is enough. He has decided to forego further treatment, having fought the good fight for so many years now. His family hopes to get him home so they can be together for what precious little time he has left. He is a wonderful guy and is deserving of your prayers and so much more. Godspeed, Doug.
Dave Eckberghttp://www.blogger.com/profile/08992997044938074424noreply@blogger.com0tag:blogger.com,1999:blog-6928201955721701591.post-36952258008055865362014-11-07T10:01:00.001-06:002014-11-07T10:01:22.240-06:00My Two and a Half Years on IbrutinibDaveās Great Adventure<BR>
Book 5, Chapter 2, Verse 10<BR>
November 7, 2014<BR><P>
Iāve been taking that near-miraculous drug, ibrutinib, for about 30 months now. I believe it has, quite literally, saved my life.<P>
Just a little over three years ago I got very bad news. The CLL I had been fighting for nine years had mutated from a moderately aggressive form to the most aggressive form of the disease. I found that I had the dreaded 17p deletion, wherein my chromosomes had lost a gene called the ātumor suppressorā gene. Without it, the disease is very aggressive and especially resistant to chemotherapy. Most studies predict that without treatment, the expected longevity with this mutation is between 12 and 15 months or so. <P>
The only treatment really known to work in this circumstance is a stem cell transplant (or bone marrow transplant; they are the same thing), which I knew would be a possibility at some point in my life, when nothing else was working for my disease, but I wanted to postpone a transplant for as long as possible since a transplant is not without risk. There is a fair chance of dying from the procedure, and this risk is generally quoted as being about 25% or so, depending on whom you talk to and where the procedure is done.<P>
My doc at M. D. Anderson in Houston tried to treat my disease with a newly approved medication called Arzerra (ofatumumab) for a few months to see if it might work. But after four monthly treatments, it was clear that it wasnāt working. A CT scan showed that I had multiple tumors in my belly, chest, neck and underarms, the largest ones being about the size of oranges. It looked like it was time to see about that transplant, and so I did. I went to the transplant clinic at M. D. Anderson and was examined, filled out all the questionnaires, gave multiple tubes of blood and signed forms agreeing that I knew the cost could be upwards of a million dollars, which I would be responsible for if insurance didnāt cover it. Yikes!<P>
But, the very next day I got wonderful news. I had been accepted into a Phase 1/2a study of a new drug, a drug so new it didnāt yet have a name. It went simply by the name PCI 32765. It had been tested recently on about 90 seriously ill folks with CLL and seemed to show great promise. I jumped at the chance to get into the study.<P>
I began taking this drug, the first of its kind, and an orally active medication for CLL, in April 2012. My previous treatments for my disease, over the previous years, had all been IV chemotherapy, needing four to six months of therapy, several times every four weeks. But this PCI 32765 stuffā¦it was so easy. Three capsules in the morning and I was done each day.<P>
When I started my treatments with the PCI 32765, it was in combination with Rituximab for the first six months. By the time I was able to start taking my first doses, the tumors in my belly had grown to be about 16 centimeters in diameter, about grapefruit sized. I looked pregnant. My belly was distended with tumor, I had large lumps in my armpits and had multiple tumors on the sides of my neck. I was very sick. But, within the first week of starting on the Rituximab and PCI 32765 combination, even before I was examined again at the clinic, I knew it was working. Within days I could tell that my belly was less distended. The tumors were shrinking that fast!<P>
Indeed, when I had a follow-up CT scan three months after starting the ibrutinib (as the generic name of PCI 32765 came to be called) the tumors had shrunk by almost 90% of their volume. Within a year, the tumors were gone. During that time my white counts came down to normal, my red cell counts improved and my platelets stayed steady, though lower than normal, as they had been since my third round of chemotherapy in 2008.<P>
The side effects of this near-miraculous new drug were, at least in my case, almost trivial. I had frequent pains along my joints, primarily in the small joints of the feet, hands, wrists and ankles. This was often accompanied by some redness, and the pain could be significant but almost always resolved within three or four days. Rarely did I take any medications for the pain. I also had some very minor skin rashes, a few small sores in my mouth on occasion, but not too much more. I have the fatigue that most folks with CLL seem to have, and I have all too frequent sinus infections, which are also very common, but thatās about it. Now, I know that other folks have had very serious, full-body rashes and more severe pains, some have had significant diarrhea, and some have had sloughing of their mucous membranes in the mouth and other places. But, I have been exceedingly fortunate in having so few symptoms. And, I think my experience is probably more typical than that of those folks who have had worse problems with side effects. In any case, the side effects are significantly less than could be expected of a bone marrow transplant. This is one amazing drug. <P>
But, itās not perfect. As Iāve mentioned, there is a small failure rate for some of us on this drug, mostly among the people like me with the bad mutation, the 17p deletion. But, Iāve been told itās only about a 5% failure rate, with a few other failures occurring in the 11q deletion patients and a few others as well. Apparently some folks have developed a more serious form of our disease, with Richterās transformation, where our disease transforms into the much worse ādiffuse large B cell lymphomaā (DLBCL). So, ibrutinib is not a perfect drug, but nothing is when youāre treating cancers of any kind. But, man, is it good. Iāve been in contact with many folks all over the world and all of them who have started taking ibrutinib, except one unfortunate guy who developed DLBCL, are doing just great.<P>
Initially, when starting the Rituximab and PCI 32765 treatments, we were going to Houston weekly. After five consecutive weeks, the frequency was reduced to monthly for the next five months. As my exams and labs began to normalize, the appointments went to every three months, then every four monthsā¦and at my last visit in August, after my two and a half years on ibrutinib, they told me to go away and not to bother them again for SIX months, sending me off with a supply of ibrutinib worth more than the car I was driving! I continue to take three capsules daily and the list price per capsule, now that it has been approved by the FDA, is about $92 each. So, six monthsā worth of capsules is indeed worth a fair amount. <P>
Kathy and I have been taking advantage of my/our good fortune and, after this excellent news, went on a 16 day river cruise in Europe, passing through Germany, Holland, Austria, Slovakia and Hungary. This was a very, very nice cruise and, despite having lived in Germany for seven yeas while I was in the Army, we saw many cities and places we hadnāt visited earlier in our lives. And, life for us has returned pretty much to normal again. The only continuing problems I have are the intermittent joint pains and the enduring fatigue. But, those are very small prices to pay for having access to this incredible new drug.<P>
The standard three capsule daily dose is something several folks have been looking at. When this drug went through Phase 1 and Phase 2a studies, the only doses studied were 840mg and 420 mgs daily (six or three capsules a day). It was quickly found the three capsules work as well as six, so the larger dose was dropped. But, to my knowledge, no one yet has studied any lower doses. Doc Keating has mentioned wanting to study the efficacy of lower doses, and to study leukemia cell receptor saturations at lower doses, but the drug was controlled by the company and human use studies are exceptionally difficult to get approved. As they should be.<P>
But now that the drug has been FDA approved, is widely available and can be prescribed by any physician, I know that there are people who are trying lower doses. I have a correspondent who, on his own, lowered his dose from three capsules daily to two because he was having horrible full-body rashes. His rashes have improved and, in the short term, his blood counts seem to be continuing to improve. And I have heard of another patient who was refusing any chemotherapy of any kind, who was convinced to try just one ibrutinib daily, and also in the short term, I hear that she is improving. Time will tell what the optimal dose will be. I keep expecting to hear of a clinical trial with one, two and three capsules a day, to see if they are, or are not, equally effective.<P>
Meanwhile, the FDA has approved yet another oral drug, idelalisib, for use in CLL. And there are more in the pipeline. The stuff called ABT 199 is showing great promise and should be coming along soon. Itās the drug that Doc Keating said I may be switched to if I relapse while on the ibrutinib.<P>
But, even as these first generation drugs are being developed and approved, there is now a second generation drug like ibrutinib (another BTK [Brutonās tyrosine kinase] inhibitor) in trials. This drug is called ACP 196 and it is in Phase 1 trials in multiple centers right now, including at M. D. Anderson.<P>
In other recent notes about this wonderful drug, I have recently heard news that makes it much more convenient to take. Originally we were given strict instructions to take it on an empty stomach, at least thirty minute before we ate, or two hours afterwards. But recently one of the researchers has said that the absorption is the same with or without food in your stomach. It just seems that there is less diarrhea when taken on an empty stomach. Since Iāve never had any issues with that at all, I now just take my capsules in the morning with breakfast. And, Iāve mentioned the CARs procedures in previous messages, where oneās T lymphocytes are modified to attack your leukemia cells. The folks at M. D. Anderson have been working on a specific type of CARs (or also called CART) called the ROR1 CARs. But, as of my last visit, it still hadnāt gotten into clinical trials, so I donāt think that possibility will be in my future any time soon. But, work on this is slowly progressing.<P>
When I started this series of little stories, they went out solely to family and close friends, and though I had a fairly long mailing list, it was limited to about 150 folks. But, just a few years ago our kids convinced me to publish my messages in an on-line blog form, to make them easier for my friends and family to access. And this has had an interesting unintended effect! Other folks around the English speaking world, when Googling āibrutinibā or āCLLā and other topics, have stumbled upon my stories and I have had contact with many other people with this disease, or the family members of folks with CLL. I have correspondents in England, Canada, Australia and across the USA. My stories have been read, on-line, by hundreds and hundreds of people. I know this because Google, who runs the blog site, keeps track of every click on my stories.<P>
It has been a wonderful thing to share our stories with each other and to be able to commiserate when we had to. I have shared my experiences with lots of folks and have tried to judiciously dispense advice about what might be available and/or advisable for others with this disease. But, Iāve had to put a disclaimer at the top of my blog, noting that Iām really not an expert. I know, or at least I think I know, a lot about CLL as Iāve been dealing with it, reading about it and writing about it for almost 13 years now. But, I have to tell you, when I start talking with Dr. Keating about the details of CLL, or when I get into the research articles about CLL that are published in the hematology/oncology journalsā¦I admit that I have trouble understanding a lot of it. And so, I can fully appreciate how non-medical folks would have difficulty comprehending so many of the details of this very complex disease. So I am very happy to try to help other folks understand what they are facing and what their options are. It is nice to be able to tell them now, after many years of having little real hope, that we live in a āgolden eraā for patients with CLL. There are now so many very effective and non-toxic options for us. Most of us shouldnāt have to have harsh chemotherapy and most of us should be able to avoid a stem cell transplant and its attendant risks. A cure is surely coming soon.<P>
And, so, thatās all for this episode. Iāll be going back to Houston to be examined and have another bone marrow biopsy in January. My monthly labs tests done here at home have been completely stable and so Iām fully expecting that my check-up in January will be normal as well. If so, Iāll probably be continuing on the ibrutinib, as long as it keeps me disease-free. The manufacturer has agreed to keep its early test subjects supplied with the drug as long as we are willing to be examined periodically, as they need long-term data about its effectiveness and side effects. So far, we only have about four yearsā worth of data on a few hundred patients. Itāll be nice when we have, maybe, ten years or more of data to show that it keeps on working for many, many years. <P>
Hereās hoping!<P>
Dave<P>
āTake therefore no thought for the morrow; for the morrow shall take thought for the things of itself. Sufficient unto the day is the evil thereof.ā Matthew 6:34<P>
āI have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world. ā John 16:33
Dave Eckberghttp://www.blogger.com/profile/08992997044938074424noreply@blogger.com0tag:blogger.com,1999:blog-6928201955721701591.post-5874387525605264862014-07-08T11:51:00.000-05:002014-07-08T11:51:29.831-05:00About that transplant...Daveās Great Adventure <BR>
Book 5, Chapter 2, Verse 8 <BR>
July 7, 2014 <BR><P>
<P>
Dr. Keating came into the exam room and sat down. Then he leaned a bit toward me and smiled the impish smile he often has when weāre talking. āDonāt worry about those terrorists over in the Transplant Clinic,ā he said, with his Australian accent.<p>
I had expected to have to make a major decision about a transplant soon, probably at my visit in May. I even had an appointment to see the very kind folks at the Transplant Clinic which had been on my schedule for three months. Each time we get to M. D. Anderson on the morning of my appointments, I always ask for a printout of those appointments to make sure none of the times has changed. But this morning when I got the printout of my appointments and times, the appointment at the Transplant Clinic had disappeared. I was surprised. <p>
So, I got my blood drawn as scheduled and then went to the Leukemia Clinic to await my appointment there. I saw Jackie, as I usually do, and she went over my history and did the usual physical exam. All was well. My labs tests were all stable and my white and red blood cell counts were normal. No evidence of relapsing disease. I told her that I was puzzled about the missing appointment at the Transplant Clinic, as I had expected to be talking about the possibility of a transplant in the fairly near future.<p>
So Jackie completed her exams and questions and left the room, leaving me to await Dr. Keatingās time with me. And thatās when he came in and told me that a transplant wasnāt very likely in my immediate future.<p>
Things are going too well, he said, to think about doing a transplant right now. My marrow seems devoid of disease and my labs and exams are all normal. So, with that subject off the table, I asked some questions I had, questions which had been lingering in my mind, bothering me about what might lie ahead. I had been especially worried about the problem of folks like me with the 17p deletion failing the Imbruvica therapy. I asked, what percentage of us are failing the therapy so far. I had been told only that it was ācommonā in the past, but had no idea what the magnitude of the failures might be. What was it, I wondered; 80% of us, 50%, what? No, he said, itās more like 10%, which I found reassuring because, Iām sure (as we all are, of course) that I wonāt be in that 10% group. So then I asked, of those who 17p deletion patients who have failed, how many have died. Well, none of them. They are getting treated with various other therapies; some with ABT 199 (another drug in the Imbruvica category), Arzerra (similar to Rituxan but more āhumanizedā) and other things. Probably some have had transplants, too, but I failed to ask about that. And that I found to be very reassuring. I also asked about how the disease came back when folks relapsed, as I had wondered if it came back as Richterās or worse. Yes, it does some times, but that apparently is not seen routinely. So, it seems like there is still a lot of good news about this drug and my continued treatment with it.<P>
We moved on to talk about the CARs (chimeric antigen receptors) studies being done at MDA. I have mentioned this new procedure in some of my previous stories, but Iāll touch on it again just brieflyā¦if I can actually be brief! This is the procedure wherein oneās T-lymphocyte white cells are harvested, much like donating blood or platelets and such. But then the patientās T-lymphs are treated with a modified retrovirus, like an HIV virus, to insert a gene into the DNA of the patientās lymphs. This gene will do a couple of things. First, and most importantly, the T-lymphs will be modified to search out cells with a specific protein on their cell membranes. All CLL leukemia cells have a protein called CD19 on them and the early studies of CARs have looked at teaching the T-lymphs to kill cells carrying this protein. The second thing that the T-lymphocyte white cells are taught to do is to reproduce when they find and kill such a cell. There have been some notable successes with this approach, including a very few folks who are now, apparently, cured of their disease.
But, there is a problem with this approach. Although all CLL white cells carry the CD19 protein, so do all normal B-lymphocyte white cells, and they are the cells that ultimately make your antibodies so you can fight off infections. So, although a few folks have been cured of their disease, they must frequently get infusions of antibodies, gamma globulin infusions, since they canāt make their own antibodies.<P>
The folks at MDA are taking a different approach. One of their colleagues in Sweden discovered a protein on CLL cells called the ROR1 protein. This protein is generally found only on certain malignant cells and a few immature cells. It is not found on normal B lymphocytes. So, if oneās T-lymphs could be modified to search out and kill only cells with the ROR1 antigen, then the problem of the normal B-lymphs getting caught in the crossfire might be solved, along with the problem of not making oneās own antibodies. By the way, ROR1 is also found on kidney, breast, lung and colon cancers, so this could possibly have applications beyond the treatment of CLL.<P>
But there are folks who say theyāve found the ROR1 antigen on other tissues like fat cells, pancreatic cells and such. If thatās correct, and the ROR1 protein is found on these tissues in significant quantities, then it might not be good for the patient. Even if you think it would be okay for your T-lymphs to gobble up your fat cells, the problem could be that they would destroy massive amounts of the cells and the cellular debris could clog up your kidneys, causing ātumor lysis syndrome.ā Thatās not good at all, and can be deadly. But this problem, if it exits at all, does not seem to be a serious issue in the early going.
So, the researchers at MDA have started this process with a very few patients so far. I really donāt know if weāre talking about one or two folks, or if theyāve tried it on six or eight. I just know itās not many yet. Thatās for a couple of reasons. <P>
First, just doing this is very labor intensive, as you can only make one batch of cells for any given patient. My cells, for example, wouldnāt work for anyone else. These things canāt be mass produced in large quantities. So each patient will have his or her own personalized batch of T-lymphs made up for them. <P>The next reason itās going slowly, is that itās a very new process, and as with most very new medical processes, itās generally tried out first on the folks who are the sickest and have no other options. Therefore, folks like me, who are currently doing well on the Imbruvica, are not really great candidates for a process which has not yet been proven to be effective. So, weāll see how it goes with the early studies and will hope to see great results without too many complications. If things go well in the study, I may be a candidate somewhere down the road as data is collected on the pioneers of this procedure. Doc Keating says I donāt want to be the first candidate for this new procedure, but that heāll let me know when theyāve done ten or so with good outcomes!<P>
By the way, all this research on the ROR1 CARs is being done in conjunction with the Transplant Clinic folks, so itās possible that they are in on the plan to eventually try to get me into the study, and that <i>may</i> be why my appointment with them at my last trip to Houston mysteriously disappeared.<P>
While weāre talking about ROR1, let me also mention that other researchers are working on creating ROR1 antibodies which can be given by injection/infusion to attack CLL cells. This would be very much like the Rituxan Iāve had several times, but would not (like the Rituxan does) affect normal B lymphs cells along with the bad guys. This would have to be given repetitively, like Rituxan, and would not be a cure, as the antibodies would eventually disappear from the patientās circulation. The advantage of the ROR1 CARs therapy is that it could, in theory, be a cure if the ROR1 treated cells persist indefinitely, continuously seeking out and killing CLL cells wherever they find them. Cool stuff!<P>
So thatās where we are right now. Iāll continue to take the ibrutinib/Imbruvica for the foreseeable future, as long as it keeps working for me and as long as my disease doesnāt find a way around its effects. And weāll keep an eye on the research being done on the ROR1 CARs procedure, to see if I might ultimately be a candidate.<P>
Until the next time, after my visit to Houston in August. <P>
Dave<P>
<BR>āWork for a cause, <BR> Not for applause.ā
Dave Eckberghttp://www.blogger.com/profile/08992997044938074424noreply@blogger.com0tag:blogger.com,1999:blog-6928201955721701591.post-83695474980119272272014-03-11T20:17:00.001-05:002015-09-05T19:14:42.101-05:00It's Your ChoiceDaveās Great Adventure<p>
Book 5, Chapter 2, Verse 7<p>
āItās your choice,ā said Dr. Khouri.<P>
Iāve been riding the CLL roller coaster for twelve years now, and count myself as very fortunate to have been able to do so. Lots of folks with CLL donāt last this long. Iāve had some very low lows and some very high highs on this roller coaster, but among the highest times Iāve had was when I was accepted, almost at the last minute, into the ibrutinib with Rituxan trial at M. D. Anderson in Houston a couple of years ago.<P>
I had just found out, a few months before, that I had developed the deadly CLL mutation called the 17p deletion, or the p53 deletion. Theyāre the same thing and they refer to the fact that my leukemia cells have mutated and have lost a part of my number 17 chromosome, the part which contains the gene (the p53 gene) which makes abnormal cells self-destruct when damaged. That gene is why chemotherapy works. The chemotherapy damages the cellās DNA and so the p53 gene makes the cell die. Without that gene the abnormal cells continue to grow and are almost entirely resistant to chemotherapy, making the disease very hard to treat.<P>
After we found that I had developed this mutation we tried some new chemotherapy but it didnāt work. I was developing very large tumors (enlarged lymph nodes, really) in my belly, under my arms, in my neck and in my chest. They were up to the size of a cantaloupe. With chemotherapy no longer working, I was just about out of options. All that was left for me in hopes of treating the disease was a stem cell/bone marrow transplant.<P>
Iāve known since I got sick twelve years ago that a stem cell transplant would be my ultimate safety net when nothing else was working. But Iāve been extremely fortunate to have been able to ride the wave of new treatments and experimental studies from one relapse to the next and have never had to seriously consider a transplant. Now, a transplant can be curative and has cured many folks, but itās something most folks only go to when theyāre out of other options. Thatās because the usually quoted death rate from a transplant, of the kind I would need, is about 25% or about one chance in four of dying from the complications of the transplant. Scary! And even if one survives the initial transplant, there is the very real possibility of long term problems with whatās called āgraft versus host disease.ā Thatās the opposite of a person rejecting a transplanted organ. In the case of GVHD, the transplant is ārejectingā the person and it can cause anything from minor annoyances to major problems including death.<P>
But, two years ago I was facing this decision. I had the deadly mutation, the 17p thing, and I had failed my last ditch chemotherapy. I was out of options. So, Kathy and I were in the Stem Cell Transplant Clinic at M. D. Anderson in Houston, signing me up for one. None of my siblings match me, so the best I could hope for would be an inelegantly named Matched Unrelated Donor transplant, or āMUD.ā We signed all the paperwork and set the wheels in motion for a transplant in the coming weeks or months, once a suitable donor could hopefully be found.<P>
But, the very next day I was accepted into the new ibrutinib study! And so we put the transplant on the back burner while we waited to see how I would do on this new drug, which was so new that at the time it had only been tested on about 90 other folks, worldwide, and didnāt even have a name. Back then it was called PCI 32765, its developmental code name. Since then it has acquired a generic name, ibrutinib, and more recently, a trade name, Imbruvica.<P>
And I have done incredibly well on this new drug. I take three capsules daily (at a cost of $91 per capsule or $273 a day) and I could tell within days that it was working. I could feel the swollen nodes shrinking and my swollen belly getting smaller. When I started the drug 90% of the white cells in my blood were leukemia cells, and 60% or more of the cells in my bone marrow were leukemia cells. But, I had a bone marrow biopsy just a couple weeks ago and, incredibly, there is no evidence of leukemia remaining in my bone marrow! This is just amazing news.<P>
But, as more people have started taking this near-miraculous drug, and as the early participants have been on it longer and longer, the researchers are finding that many (or perhaps mostā¦ I really donāt know for sure) of the patients with the 17p deletion (and some with a few with other chromosome types, too) seem to be failing the drug after about 30 to 36 months on it. Iāve now been on it for about 24 months.<P>
That brings up a dilemma for me. Iām still doing just great on the drug and am taking it daily with minimal side effects. But, if the experience of the folks who have been on it longer than I have applies to me, we might expect that I, too, will fail the drug and have a progression of my disease within the next year.
And if I do, what would be the next drug to try? Wellā¦no one knows. There are lots of new experimental drugs out there which are being tested on various groups of patients with CLL, but there is no known therapy which is ābestā for people who have failed the ibrutinib. Anything we might try would be a shot in the dark. There just isnāt any data that I know of, indicating what might work. That is, if anything at all will work. <P>
Meanwhile, Iāve been going back to visit the stem cell transplant folks periodically, about every three to six months or so. The visits have pretty much been of the āHi, how are you doing, see you back in three (or six) months!ā variety. But it seems theyāve been following my progress more than I realized. They know that I have the p17 deletion, and when they learned that those of us with that particular chromosome type are beginning to show signs of failure on the ibrutinib, they knew, before I did, that I might need a transplant in the near future. So, they went out and completed the search for a donor for me. And now they have one lined up, apparently.<P>
So, going back to the bone marrow biopsy I had recently, the one which didnāt show any leukemia at all. It seems that now that Iām in clinical remission, with ācleanā bone marrow, Iām in just about optimal condition for a stem cell transplant! Thatās quite a dilemma for me, as I feel and look normal right now and donāt feel like Iām so sick that I need to take a chance on a stem cell transplant. But, Iām told that if I wait to see if/when I relapse, Iām likely to develop a more aggressive form of the disease and it could be more difficult to have a successful transplant. Dr. Khouri, in the transplant clinic (one of the pioneers in the field, by the way) is strongly urging me to do the transplant now rather than waiting. But, as he said at our last visit, after explaining the risks of waiting, āI think we should do the transplant now, or we can wait and see what happens. Itās your choice.ā <P>
So, thatās my dilemma. Get the transplant now and take a chance on the known risks, or wait to see āifā I relapse and take a chance of having a lower chance of a successful transplant at a later date. Iāll wait at least a couple of months until I see Dr. Keating again in May, when Iāll present him with my laundry list of questions and decide, as best we can, what I should do right now. And, if I donāt go the transplant route now, what he thinks might be my next steps in treatment if/when I fail the ibrutinib.<P>
Meanwhile, thereās more news about ibrutinib, which is now called Imbruvica. In mid-February it was approved by the FDA for use in patients with CLL, but the approval was for patients who have failed at least one prior mode of therapy. In other words, you have to go through chemotherapy at least once and fail it before youāll be approved for the less toxic Imbruvica. Thatās counter to what the CLL experts are wanting to do as I believe they would like for everyone to be able to avoid chemotherapy entirely. Thatās because chemotherapy damages cells and suppresses immune systems. Hopefully, Imbruvica will eventually be available for anyone who needs it as their front line therapy.<P>
And thatās the story for now. Weāll have to decide fairly soon whether Iāll be going for the transplant or whether we decide it would be safe and not unreasonable for me to wait a while longer to see how I do on continued Imbruvica therapy. And see if a logical and effective follow-on treatment shows up. More laterā¦probably in May.<P>
Dave<P>
Dave Eckberghttp://www.blogger.com/profile/08992997044938074424noreply@blogger.com0tag:blogger.com,1999:blog-6928201955721701591.post-40169819837654493392014-01-03T12:23:00.000-06:002014-01-03T12:31:28.871-06:00Ibrutinib UpdateDaveās Great Adventure <p>
Book 5, Chapter 2, Verse 6<p>
Iām still doing fine but a lot of news has recently come out about the new, experimental drug called ibrutinib, so much so that I thought an update on it and other related topics is needed. This will be more of a technical update than a personal one.<p>
First, and foremost, the FDA has approved ibrutinib to be sold on the open market and not just to be used in clinical trials. But, quite surprisingly, to many folks at least, it was approved, not for chronic lymphocytic leukemia (CLL) as expected, but rather for a rare and aggressive disease called a mantle cell lymphoma, about which I know very little. Approval of the drug for the treatment of CLL is still expected in the coming months, but with its approval for mantle cell lymphoma (MCL), that is almost a moot point. With the drug on the market now, physicians are pretty much free to use it as they want by using it āoff label.ā That means they can use any approved drug for other diseases if they feel there is a benefit. There are many examples of off-label use in medicine, such as antidepressants used for peripheral neuropathy, narcotics used to slow down over-active bowel function and many, many other examples. I have already heard of one patient who will now be getting ibrutinib for her Waldenstroms macroglobulinemia, for which the drug is showing great promise. But, I donāt even know if the company has applied for permission to be used for this disease. No matter. Itās now on the market.<p>
And, now that itās more widely available, it has a trade name. When I first started taking this drug it was still going by its companyās in-house development code, being called PCI 32765. Then, a few months later it was given its current generic name, ibrutinib. But now it has an official trade name of āImbruvica.ā And with that name comes its current marketing price, $91 per capsule. Those of us with CLL take three capsules a day, which comes out to about $8200 a month, or close to $100,000 a year. I believe the folks with MCL actually take four capsules daily but I canāt be sure of that.<p>
And much more specific information is now available about how it, and many other drugs and procedures, are working against so many blood cancers and lymphomas. The American Society of Hematology recently concluded its meeting in New Orleans and all of the abstracts of the hundreds of presentations are now available on-line, for your review. It includes many interesting findings and nuggets of information, with a great deal of information about new and novel treatments for CLL. If youāre interested in taking a look at all or some of the abstracts, look here:<p>
https://ash.confex.com/ash/2013/webprogram/start.html<p>
There is a search function which will allow you to search out the topics of most interest to you. I have to warn you, these are specialized topics written in the lingo of the specialists and some of the data are hard for us amateurs to decipher.<p>
But there are several abstracts (which are just summaries of the presentations, not the entire article) which are of great interest to me. First, Dr. Jan Burger, who is the lead investigator of the study Iām in presented the official findings thus far. You can see it here:<p>
https://ash.confex.com/ash/2013/webprogram/Paper58781.html<p>
I learned a great many things. As I have stated several times in my updates, when in Houston I generally ask how the other 39 folks in the study are doing. I am routinely told that everyone is doing fine. But, I donāt know if Iām asking the question too generally, or if the answers I get are just too general, or if (probably) the folks Iām asking just canāt tell me about the other study participants. But, what I have learned is that all of the other patients in the study are NOT doing just fine. In fact, of the forty original patients in the study, four are now dead. They are reported to have died of unrelated infections; sepsis, pneumonia and cardiovascular failure. Further, four more dropped out of the study for other reasons; two for ibrutinib related complications like mucositis (inflammation of the mucous membranes in the mouth, bowels, etc.) and a subdural hematoma (remember that ibrutinib inhibits platelet function and the clotting process), another with disease progression and one left to have a stem cell transplant. I have to assume, but do not know, that the person who left to have the stem cell transplant must not have been responding well. <p>
However, despite these problems in eight of forty patients in the study, we have to remember that the study recruited the sickest of the sick. All the patients in this study had very bad prognostic indicators. Most had the 17p deletion, the 11q deletion and/or had failed multiple other therapies. Despite the loss of some of our group, the study reported a 95% overall response rate (complete or partial remissions) with 80% of us remaining on the drug without disease progression after 14 months or so. This is still a remarkable response rate in folks who are very high risk and, essentially, have no other options except that of a stem cell transplant.<p>
If you look at this paper, it mentions that most of the study subjects were IGVH un-mutated. If youāre looking at this message you likely know that having the IGVH mutation is considered a very good prognostic sign, so itās not much of a surprise to see that most of these patients in the study, who are generally pretty sick, do not have the mutation. However, note that Dr. Burger says one patient does have the mutation. Heyā¦thatās me!<p>
This brings up another peripheral study that was presented at ASH. A researcher studied the relationship of the āprotectiveā effects of having the IGVH mutation against the very deleterious effects of having the p53 deletion/mutation (I have both). They found that if you have the p53 deletion, having the IGVH mutation doesnāt seem to confer any protection, the deadly effects of the p53 deletion being the dominant factor. Too bad for folks like me.<p>
Another study of ibrutinib which bears reading and studying is one presented by Dr. Susan OāBrien, also from M. D. Anderson. You can see her paper here:<p>
https://ash.confex.com/ash/2013/webprogram/Paper61648.html <p>
In Dr. OāBrienās paper, they have apparently combined the results from the Phase 1 study of ibrutinib, which had 108 patients in it, with the forty of us in the Phase 2 study, to give a total of 148 patients. She breaks the data down according to whether the patients had previous treatments and had relapsed or were refractory to treatment (RR) or whether they were getting their first treatments, being ātreatment naĆÆveā (TN). She further breaks the data down into the patientsā ages, number of previous therapies, time on the drug and more.<p>
They have found that the serious adverse events decline after the first year and that most patients tolerated the drug pretty well. After about two years on the drug, 25 of 31 TN patients were still taking it and only one had shown disease progression, with no deaths noted. On the other hand, of the relapsed patients (RR), only 68 of 117 (58%) were still on the drug and 21 had noted disease progression. Notably, there have been 11 deaths in this RR group of 117 patients.
However, the drug shows great promise, as the overall response rate was about 88% for the whole group, with most patients showing a partial response or better. She noted that after more than two years (average 27 months) on the drug, of those patients who had achieved at least a partial response, the median duration of response (DOR--the average time it takes patients to fail on a drug) had not been reached and could not be calculated as 76% of the patients were still alive without disease progression. Thatās an amazing statistic. And a very hopeful one. I suggest you take a look at her abstract if youāre on this drug or considering taking it.<p>
One last abstract Iād like to mention is one relating to the upcoming therapy called the Chimeric Antigen Receptor (CAR) procedure which is very exciting and is being studied in many places. It may be able to be a cure for many malignancies and is being studied mostly for leukemias at this point. It enlists the patientās own immune system to seek out and kill the diseased cells. I wonāt describe it here, as Iāve mentioned it previously and much more about it can be found elsewhere on the internet. <p>
This procedure was pioneered by Dr. Carl Juneās folks at the University of Pennsylvania. His early study of three patients resulted in two of them apparently being cured of CLL, though they remain immune deficient. In any case, it is interesting to see what percentage of the study patients are responding to therapy. This abstract also comes from Dr. Juneās group. You can see his ASH abstract here:<p>
https://ash.confex.com/ash/2013/webprogram/Paper58607.html <p>
This shows that, although the procedure has some excellent results, it doesnāt always work. Of 24 CLL patients who underwent CARs therapy recently, only 5 had complete responses, 7 had partial responses and 12 had no response. The results were a bit better for pediatric patients with ALL. Of 14 patients, 8 had ongoing complete responses and four have relapsed. However, it needs to be remembered that all these patients were desperately ill and essentially had no other options. My point, though, is that for all the excitement surrounding CARs, this procedure is in its early stages and is not a cure for all who enter into these studies, with possible complications, deaths, relapses and such. But, it still holds great promise for the future.<p>
Iām still doing quite well and will be going back to Houston for another check-up and bone marrow biopsy in about six more weeks. Meanwhile the blood counts I have been getting monthly here in Denton are remaining pretty much normal. Hopefully I can give you another good report next month.<p>
Dave Dave Eckberghttp://www.blogger.com/profile/08992997044938074424noreply@blogger.com0tag:blogger.com,1999:blog-6928201955721701591.post-61386792085702490862013-11-20T20:09:00.000-06:002013-11-20T20:18:02.357-06:00The Ibrutinib Failure RateDaveās Great Adventure<br>
Book 5, Chapter 2, Verse 5<br>
November 21, 2013<br>
<p>
<p>
I have just returned from yet another trip to Houston to visit with Doctor Keating and his staff to see how I was doing. I expected the results to be fine as I have been getting blood tests monthly here in Denton, in between my visits to Houston, and those tests have been pretty close to absolutely normal, the only minor issue being that my platelets, the cells that help your blood clot, are still a bit low at about 100,000 (with 150,000 or higher being the normal number). But, 100,000 is still high enough for my blood to clot normally and is not a worry at all. And, indeed, everything they checked in Houston is also pretty close to normal, both with my lab exams and my physical checkup.
<p>
I have been taking ibrutinib, this near-miraculous new drug, for about 20 months now, and it continues to work very well for me and, seemingly, just about everyone else who has entered a clinical trial using it. My side effects continue to be pretty minimal. Many of the early symptoms I was having during the first few months on the combination of ibrutinib and rituximab seem to have mostly resolved. I still have occasional flares of redness and tenderness along the ligaments and tendons in my feet, hands, ankles and wrists, but the pains are never debilitating and rarely require any treatment with anything more than Motrin or Aleve.
<p>
And every time I go to Houston I ask how the other folks in the study are doing and I have routinely been told that everyone seems to be doing fine. There are still 40 people in the study Iām in, and the manufacturer has just opened up another 80 slots for more patients. In addition, most of the 90 or so people who were in the Phase I study at MDA are still taking the drug as well. And I know there are other folks in similar studies in Washington, DC and, I believe, at Vanderbilt, as well. But I really donāt have a good feel for how many patients there are, total, taking this drug right now. Probably less than a few hundred. I keep hearing that everyone expects the drug to be approved for general use by the end of the year. I hope that comes to pass as I still hear of folks dying of this miserable disease and I know they would have been saved if theyād been able to get into a study with this stunningly effective drug.
<p>
And not only is this wonder drug working well on CLL, but they have now found that it shows promise in other malignancies like mantle cell lymphomas, Waldenstroms macroglobulinemia and I believe itās being tried in patients with multiple myeloma as well, but Iām not as certain about those studies yet.
<p>
More information about these studies will be made public soon, as the annual meeting of the American Society of Hematology will be held in New Orleans next month, and their findings are always made available on-line in their magazine, Blood, very soon thereafter. I look forward to seeing what is reported.
<p>
But, there is a cloud on the horizon. Just in the last few weeks I have learned that they are finding some failures of ibrutinib in CLL patients, after about 30 to 48 months on the drug.
<p>
The drug is incredibly effective in bringing just about all of us with the disease into a clinical remission very rapidly, and it does so regardless of our CLL sub-type. If youāve been reading my stuff very long, or have been researching CLL on your own, you know that in the last decade our wonderful researchers have found that there are a number of sub-types of the disease, depending on your chromosomes that appear in your diseased CLL cells. These chromosomes may have loss of part of the chromosomes, as in the 11q deletion or 17p deletion (in which a part of the 11 or 17 chromosomes have lost a part of that particular chromosome), or they may have an extra 12 chromosome as in the āTrisomy 12ā sub-type. And, there are a few others as well. Some of these mutations make the disease more aggressive; some make it less aggressive. Most patients with CLL tend, with time, to mutate toward the more aggressive types, it would seem. The above mentioned 11q and 17p deletion sub-types are the most aggressive of the mutations.
<p>
Well, regardless of how aggressive your disease is, based on your cell mutation type, ibrutinib clears the diseased cells rapidly. It does not kill the CLL cells directly but rather just āallowsā them to die a natural death in a timely manner by releasing them from the lymph nodes and bone marrow (where they tend to hide under the protection of ānurse-likeā cells) into the circulation where they die off. These diseased CLL cells are still being made in your body, but they are not allowed to accumulate and cause the patient any problems. So ibrutinib is not a cure.
<p>
But now we are seeing that there are drug failures at some point in certain CLL sub-types. As I mentioned, after about 30 to 48 months on the drug, they are finding some failures but thus far, they seem to be only in the 17p deletion patients. This is the most aggressive of the types of CLL because the missing part of the 17 chromosome is a very important gene known as the p53 gene. This is the gene that tells cells to die if they have been damaged.
<p>
Chemotherapy generally works by damaging the DNA of the cells it attacks. When the DNA has been damaged, the p53 gene will instruct the cell to die. However, if that specific gene is absent, as in the 17p deletion patients, the damaged cell will keep growing. This is why chemotherapy is almost futile in this specific type of patient. This is āmyā type of CLL.
<p>
Having heard that failures have been found in recent months, I asked Dr. Keating what percent of the 17p deletion patients were showing signs of this problem. He simply replied that itās ācommon.ā I suppose the number of patients affected is still small, as the total number of patients taking the drug is still fairly small, but itās a troubling finding for the folks like me who are afflicted with this aggressive mutation.
<p>
And, what will we do if/when we fail? Well, we still have options. One possible option that Iāve heard mentioned is to switch us to yet another type of the tyrosine kinase inhibitors, similar to ibrutinib, which are being tried against CLL. A year or two ago I wrote about the several drugs of this type which were being developed. I called them the ālicense plate drugs,ā as they all had names (at the time) like PCI 32765, CAL 101, AVL 292, ABT 199 and so on. These anti-CLL drugs are all still in Phase I or Phase II studies, but theyāre out there. I have to believe that switching us to another tyrosine kinase inhibitor would involve setting up yet another clinical trial, because I donāt believe Iāve heard of this being done anywhere yet.
<p>
The next option would to be to get into a CARs clinical trial. In my last āverseā I wrote about the chimeric antigen receptors (CARs) studies, in which a patientās own T-lymphocyte white cells are collected from the bloodstream, treated with a retrovirus to inject DNA into them, which āteachesā them, if you will, to attack CLL cells. Then the treated T-lymphocytes are put back into the patient to kill off the CLL cells, wherever they are in the body. This, in theory, should be able to effect a ācureā of our disease. A very few patients in Philadelphia (three patients, actually) have been treated for CLL in this manner and though they have had some complications, two of them seem to be free of disease. A CARs study is in the making at MDA and they will very soon be recruiting patients into the trial. CARs have also been used with some success in a few other types of leukemias, but in very limited numbers so far.
<p>
And the last option would to be to undergo a stem cell transplant. After having gone through a stem cell transplant evaluation in early 2012, just before I got into the ibrutinib study, I have been seeing the transplant folks at MDA on a regular basis, every 3-6 months, just to keep in touch as they will be my last hope if all else fails. Stem cell transplants can be life-saving but they can be fraught with risks. To start with, there is up to a 25% risk of dying of the transplant procedure itself. And if you are among the 75% who survive, there is the very real possibility of long-term graft versus host reactions, where the transplanted cells attack your body, because they donāt recognize you as being normal. But, when a transplant is your last hope, you go for it and I will too when the time comes.
<p>
And so, thatās my ibrutinib update.<p>
**************************************************************************************************
<p>
Mike died a few months ago. I mentioned Mike in my stories about a year ago, when I told you how lucky he and I were. At the time Mike had Stage 4 lung cancer which is, by definition, terminal. His lung cancer also had the 17p deletion, just as my CLL does, which made it that much harder to treat. When I met Mike Iād recently found that I had developed the 17p deletion CLL, the most aggressive type and I had just failed a course of a new drug called Arzerra. But we were both Vietnam vets who were able to come home to our families and we had great lives for decades after Vietnam, unlike many of our buddies. And even though we were both fighting incurable diseases, we were enjoying our lives and had just wonderful support from our families and friends. He and I were guinea pigs for various clinical trials of new drugs and procedures but we were glad to be in those studies. We commiserated a lot about our fates but knew we were lucky to have lived as long as we had. Mike told me his dad always said, āEverybody wants to live forever but nobody gets to.ā Mike fought the good fight until the side effects of his many experimental and standard treatments became too much to bear. And then he made the incredibly brave decision to forego more therapy and eventually checked into a hospice. There he died peacefully, in the same room where his mother, too, had passed away in the hospice.
<p>
Key died a few months ago. Key was the head nurse for my local oncologist here in Denton. Iād known Key for years and she was the type of person who would drop everything to help you when you had a problem. She had a constant smile on her face and had hugs for everyone. She checked into the hospital for a routine surgery, which was successful. Then she came home, started feeling poorly and went back to the hospital, where she died suddenly. She was in her 50s and left behind a daughter in college. Everyone who knew her misses her.
<p>
Kristen died in June. My second cousin, Kristen died of pulmonary fibrosis, a particularly cruel disease which affects the lungs, making the membranes thicker and thicker and slowly unable to absorb oxygen until you get to the point where you simply suffocate, even as you are gasping for air. Her father, brother and her only uncle also died in this manner.
<p>
One of Dr. Keatingās long time assistants died recently. She had worked with him for many decades. In a particularly ironic turn, she died of an incurable lymphoma. To be working at a place like M. D. Anderson and then develop and die of a lymphoma is just somehow unthinkable, yet it happened.
<p>
And since I developed my own incurable disease and started whining about my mortality, I have seen many, many wonderful folks who were a part of my life die. My high school buddy, Kent, died of complications of diabetes, as did our daughter-in-lawās dad, Nat, and my young colleague Abby, who developed diabetes in her early 20s and died within a few years. And my friend Jim Brettell, who died of a blood clot after a simple, āuncomplicatedā knee surgery. And my mom and her husband, my step-dad, who both died of heart disease. And both of my wifeās parents. And our neighbor, Beverly, who died of Alzheimerās. And my dermatologistās head nurse. And the list goes on. All around us people are dying in car wrecks and of disease. The newspapers report the stories every day. Death is commonplace.
<p>
My point is to say that I have come to recognize that my death, whenever it occurs, will not be a big deal. Yeah, it seems like it should be a big deal, because Iāve never died before, but itās a passage we all will make at some point. Being born is a āterminalā event and always ends in death. We all, intellectually, know weāre going to die at some point, but emotionally we donāt believe it. Our experience seems to show that we āwonātā die. People around us die but we never do. So itās hard to accept that fact. Even if weāre in great health, and strive to remain that way, weāre going to die. As Iāve quoted someone in the past, āGood health is merely the slowest possible way to die.ā
<p>
I have a serious disease which had killed millions of people before me, including my own father. But I have great care, care that hasnāt been available to me or anyone else until very recently. However, this wonderful new care, with all the new drugs and possible transplant procedures, is not going to keep me alive forever. As an oncologist (cancer doctor) told me many years ago, āItās your oncologistās job to keep you alive long enough for you to die of something else.ā
<p>
And when my time is drawing nigh, I hope Iām able to be as brave as Mike was and not start whining again.
<p>
Iāll be going back to Houston for another evaluation next February and will probably get an update out shortly thereafter.
<p>
Dave
<p>
<p>
Buddhist Parable of the Mustard Seeds
<p>
Kisa Gotami had an only son, and he died. In her grief she carried the dead child to all her neighbors, asking them for medicine, and the people said: "She has lost her senses. The boy is dead.ā At length Kisa Gotami met a man who replied to her request: "I cannot give thee medicine for thy child, but I know a physician who can." The girl said: "Pray tell me, sir; who is it?" And the man replied: "Go to Sakyamuni, the Buddha."
<p>
Kisa Gotami repaired to the Buddha and cried: "Lord and Master, give me the medicine that will cure my boy." The Buddha answered: "I want a handful of mustard-seed." And when the girl in her joy promised to procure it, the Buddha added: "The mustard-seed must be taken from a house where no one has lost a child, husband, parent, or friend." Poor Kisa Gotami now went from house to house, and the people pitied her and said: "Here is mustard-seed; take it!" But when she asked āDid a son or daughter, a father or mother, die in your family?" they answered her: "Alas the living are few, but the dead are many. Do not remind us of our deepest grief." And there was no house but some beloved one had died in it.
<p>
Kisa Gotami became weary and hopeless, and sat down at the wayside, watching the lights of the city, as they flickered up and were extinguished again. At last the darkness of the night reigned everywhere. And she considered the fate of men, that their lives flicker up and are extinguished. And she thought to herself: "How selfish am I in my grief! Death is common to all; yet in this valley of desolation there is a path that leads him to immortality who has surrendered all selfishness."
<p>
Putting away the selfishness of her affection for her child, Kisa Gotami had the dead body buried in the forest. Returning to the Buddha, she took refuge in him and found comfort in the Dharma, which is a balm that will soothe all the pains of our troubled hearts.
<p>
The Buddha said: "The life of mortals in this world is troubled and brief and combined with pain. For there is not any means by which those that have been born can avoid dying; after reaching old age there is death; of such a nature are living beings. As ripe fruits are early in danger of falling, so mortals when born are always in danger of death. As all earthen vessels made by the potter end in being broken, so is the life of mortals. Both young and adult, both those who are fools and those who are wise, all fall into the power of death; all are subject to death.
<p>
"Of those who, overcome by death, depart from life, a father cannot save his son, nor kinsmen their relations. Mark I while relatives are looking on and lamenting deeply, one by one mortals are carried off, like an ox that is led to the slaughter. So the world is afflicted with death and decay, therefore the wise do not grieve, knowing the terms of the world. In whatever manner people think a thing will come to pass, it is often different when it happens, and great is the disappointment; see, such are the terms of the world.ā
Dave Eckberghttp://www.blogger.com/profile/08992997044938074424noreply@blogger.com0tag:blogger.com,1999:blog-6928201955721701591.post-9468490696917395502013-06-07T21:08:00.000-05:002013-06-07T21:08:26.208-05:00Remission, Ibrutinib...and SciFi CARsDaveās Great Adventure<P>
Book 5, Chapter 2, Verse 4
<P>
Itās been way too long since I last wrote in this journal and long-running story. When I go long periods of time without writing, it has always meant that things are going quite well, as it seems to me that thereās nothing worth writing about. But folks who read this journal but donāt have any other contact with me often donāt know whether Iāve just stopped writing, have died or maybe have left the on-line community. For this I apologize. I should let folks know when things are going well just as often as I do when they arenāt going well. But for the last many months, everything has been going extremely well.<p>
I am now in clinical remission. Note the āclinicalā qualifier. Most folks with cancer look forward to the day they are in remission, as for most diseases, like breast cancer, bowel cancer, prostate cancer and so on, that word equates to an eradication of their disease. But I am in āclinicalā remission, and happy to be so. With my particular disease, that does not mean my disease has been defeated and is gone.<p>
When I go to M. D. Anderson for my checkups, my blood tests and my physical exams are normal. So, āclinicallyā I appear normal and in remission. However, if one does a flow cytometry test on my blood or bone marrow, closely examining the cells in my blood, we find that there are still substantial numbers of leukemia cells in my body.<p>
In fact, the aggressive form of leukemia which I have is still growing just fine within my bone marrow and lymph nodes, but this new wonder drug, the PCI 32765 (ibrutinib) is, essentially, whacking the abnormal cells as fast as they form by keeping them from hiding out in the nodes and marrow. When theyāre out in the bloodstream, unprotected by the āmicroenvironmentā of the lymph nodes, they die on schedule, like theyāre supposed to. So, they donāt have the opportunity to harm me. Because, the way the cells of CLL harm you is by accumulating in large numbers in the bone marrow and lymph nodes, forcing out the normal blood cells we depend on for life; our red cells, our bacteria fighting white cells and our clot producing platelets. Now, with this new drug, they donāt have that opportunity. My lymph nodes are shrinking and my marrow is clearing its accumulated CLL cells.<p>
I was declared to be in āclinical remissionā last November, after about eight months of taking the ibrutinib, and after completing a six month course of Rituxan, the antibody which also attacks leukemia cells. Since that time I have had periodic blood tests, physical exams, another chest and abdomen CT scan and bone marrow biopsy. All is looking good. Noā¦actually, all is looking great!<p>
All of my blood test numbers for red cells, white cells, platelets and neutrophils either have normalized or are normalizing. My platelets, which hadnāt been less than half of normal for years, are now a little over 100,000. Normal is about 150,000-250,000 or more. And my most recent CT scan shows continued shrinkage of my lymph nodes. You may remember that I had masses up to 16 (about 6-7 inches or so) centimeters in size in my belly and many others in my neck, underarms and so on. They are continuing to shrink, even after having been reduced to about 12% of their pre-treatment size after just the first three months on ibrutinib. No one can feel any masses any longer.<P>
So, the clinical trial I signed up for was to last a period of one year. In the body of the multi-page āinformed consentā which I signed there was a sentence saying that at the end of the study year, if I was doing well, I āmayā be allowed to continue to take the drug. And, I have done so. Though I am now into my fifteenth month of ibrutinib, I am still receiving fresh supplies of it from the manufacturer, Pharmacyclics (in case youād like a stock tip!) at no cost to me, M. D. Anderson or you taxpayers. I have asked how long they will continue to provide it to me, and other study patients, as Iām led to believe that the capsules, of which I take three a day, cost about $100 each. Thatās about $100,000 a year.<P>
But Iāve been reassured that as long as I continue to show up for exams on schedule and get my blood and bone marrow tested periodically, Iāll continue to receive the study medication at no cost. And thatās very important to me and the other folks taking this drug, because we have limited options at this point. If we go off the ibrutinib, the disease will be back very rapidlyā¦because it really never left. Without the ibrutinib, I would only have a stem cell transplant to fall back on, with all its inherent deadly risks and side effects. But, having helped the researchers prove that this stuff works in the short term ( a year or so) I am now moving into a longer term study of the drug, helping to see if there are any serious side effects with longer term usage. And, just as importantly, finding out if the disease figures out this drug and develops a āwork-aroundā to once again become aggressive. We also donāt yet know how long itās safe to take the drug nor what, if any, more serious side effects may be lurking as the months and months add up for those of us lucky enough to be currently using this stuff.<P>
But the side effects, at least in my case and in those of people I have corresponded with, who are also on the ibrutinib, are very tolerable. I still have occasional migratory joint pains and they continue to be primarily on my small joints, like fingers, hands and feet, but I have had a few days of significant pain in my left knee. But, thus far the large joint pain has been a one-time occurrence. I have had a couple of significant bloody nose incidents, but nothing I couldnāt handle with home therapy like pressure and rest, and one small bleed into the white of my left eye after rubbing it too hard or something. One drug side effect we know of is that ibrutinib inhibits our plateletsā function so you may tend to clot more slowly. This really hasnāt been a significant problem for me, however. I now tend to avoid the non-steroidal drugs like Motrin, Naproxen and such, to minimize any bleeding issues which those kinds of drugs can cause. <P>
And as far as I can determine with all my questions, just about everyone thatās taking this stuff is doing well. Thatās just incredible, that such a huge percentage of folks on this trial drug are doing extremely well. With most new drugs, if you see a 30% or 40% response rate, thatās considered pretty good. But to have an 80-90% response rate! Just amazing.<P>
The drug is proving to be so effective that it is being āfast-trackedā by the FDA and may be available for widespread use by the end of this year. Already there are multiple āPhase 3ā studies going on, comparing this new drug with older, more proven drugs. If it works better, or at least as well, without undue side effects, then it should be approved. <P>
And thereās more good news for folks out there with other B-lymphocyte diseases. The ibrutinib is looking like itās pretty effective in treating mantle cell lymphoma, Waldenstromās macroglobulinemia and a couple more diseases, too.<P>
And if it turns out that ibrutinib canāt be taken indefinitely for my disease and others? Well, thereās more! In the last couple of years you may have heard of the new CARs process for treating leukemias and other diseases. First, however, a little explanation about what āCARsā really meansā¦because itās so much like science fiction.<P>
āCARsā stands for āchimeric antigen receptors.ā What researchers have been able to do is train a patientās own white blood cells (the T lymphocytes, which are distinct from the B lymphocytes that make up CLL cells) to attack and kill cancerous cells. For ease of understanding it might be best to understand that the āTā lymphocytes originate in the Thymus gland, and kill tumor cells and viral diseases and the āBā lymphocytes originate in the Bone marrow and make antibodies. Thatās not precisely correct but it may help you understand how they are different.<P>
āTā lymphocytes normally try to rid the body of foreign materials, including tumors, like warts, for example. But cancers hide themselves well and look like normal tissue to the T cells so they arenāt attacked. What our wonderful researchers have done is to devise a way to make the T cells search out and kill any abnormal cells they find.<P>
What they have done is reengineer the T cells by adding a modified HIV virus in a patientās own T cells, which have been collected previously. This virus carries with it genetic information which has been added, making the T cells search for a specific protein receptor on the surface of the target cells; in this case, it would be the CLL cells. When the T cells have been modified, they are then put back into the patient from whom they came, and they go about their business, tracking down and killing CLL cells. This procedure was first performed by Dr. Carl June in Philadelphia a couple of years ago, and he made national headlines by apparently curing a couple of very ill CLL patients of their disease.<P>
This is, however, very complicated and very, very expensive and labor intensive, as each treatment can only be used in one patient, the one who provided the T cells. So every patient has to have their own batch of modified T cells made.<P>
This procedure has been used in a handful of patients so far, probably less than a couple dozen, I think, but there have been some dramatic results; some apparent cures of desperately ill patients and some significant improvements in others. But, there have also been patients who have relapsed and a few who have died, so itās still not something everyone can, or necessarily wants to, sign up for right now. But, this technology is improving every year. The folks at M. D. Anderson are working on doing this procedure in the coming year or so and have an improved methodology in mind.<P>
At the risk of going on too long about the CARs stuff, let me add one more thing, the difference between the early CARs procedures, as done by Dr. June and others, and then procedure that the researchers at M. D. Anderson have in mind. <P>
The early CARs procedures trained the T cells to look for a surface receptor called CD19, which appears on all CLL cells. But the CD19 receptor, unfortunately, also appears on all normal B lymphocytes. So, the few folks who were treated with CD19 CARs cell have had their disease apparently eradicated, but those same wonderful treated T cells, which are hunting down and killing the leukemia cells are also hunting down all normal B lymphocytes, which make a personās antibodies. So, their disease is gone, but now they canāt make antibodies. So, they are given IV infusions of whatās called āgamma globulinā on a regular basis. This is serum collected from the general population which is rich in antibodies.<P>
Now, what the folks at M. D. Anderson are going to do is train the T cells to go after a different receptor, one with the enigmatic name of ROR1. This is important, as this receptor is only found on immature cells, like cancer cells and some other cells which are early in development. In theory, T cells modified to kill only cells with ROR1, like all CLL cells, should not also destroy normal B lymphocytes, our antibody producers. This will be a huge step forward in CARs therapy. This study is about to begin down in Houston, within the year, I believe.<P>
Iām going to finish up by referring back to my last āadventureā message, in which I related how lucky Iāve been in getting where I am in my treatments for CLL. Many of you wrote back saying, essentially, that I had āmadeā my own luck, by my planning, researching and investigating options for treatment. And, indeed, in many ways I have been able to affect what treatments I have gotten and where I have gotten them. But Iām also lucky in whom I choose for friends, as I have friends and family all over the US and in Europe too, who are interested in whatās happening to me and many, many of these friends are praying for me on a regular basis. And theyāve added me onto prayer lists at their churches. This is important as I find it impossible to pray for my own health. Or to make deals with God, āIf youāll spare me, Iāllā¦.ā I find that seeming, somehow, to be selfish. I figure if Iām really worthy of prayers, others will intercede on my behalf. And, indeed, they have and look at the results!<P>
So, Iām on autopilot for now, taking the ibrutinib at a dose of three capsules a day, adding up to what has rapidly become the standard dose of 420mg daily. Iāll be going back to Houston for another checkup in August to get some, hopefully, routine labs and an exam unless something changes between now and then. And if something does, Iāll be back with many more details than youāll really care to read!<P>
Dave<P>
www.adventureswithleukemia.blogspot.com <P>
āYou walk down the street and you feel intensely alive. Youāre āOh, look at that leaf!ā Youāre looking around and you think, āIām alive. Aināt it amazing?ā ā --Wilko Johnson, former songwriter and guitarist for the ā70s band, Dr. Feelgood, on how he feels since being diagnosed with terminal pancreatic cancer and having just months to live. Heās embarking on a, literally, a farewell tour. He says he has never felt more alive. āThe 65-year-old musician says that in the weeks since his diagnosis, heās been unexpectedly happyāāIn fact it amounted at times to euphoria. I suddenly found myself in a position where nothing matters anymore. Iām a miserable so-and-so normallyā¦Iād be worrying about the taxman and all those things we worry about that get in the way of real things. And suddenly it doesnāt matter. All of that doesnāt matter.ā
Dave Eckberghttp://www.blogger.com/profile/08992997044938074424noreply@blogger.com0tag:blogger.com,1999:blog-6928201955721701591.post-56023131266686463992012-08-05T00:18:00.000-05:002012-08-08T00:19:38.228-05:00Lucky ManDaveās Great Adventure<p>
Book 5, Chapter 2, Verse 3<p>
Yes, I am a lucky man. Very lucky.
<p>
"Richard Fortey [author of LIFE: A Natural History of the First Four Billion Years of Life on Earth] has always found it amusing that centenarians, asked why they've survived so long, tend to credit their habits. The secret to longevity, they'll tell the local newspaper, is a glass of whiskey every day, or hard work and crossword puzzles. None ever ventures that it's a matter of genes and luck."--from The Wall Street Journal<p>
All of us are lucky. The fact that weāre writing or reading these words is, by itself, an indicator of how lucky I think we are because there are so many aspects of life over which we have absolutely no control. We havenāt been on a plane that went down over the Atlantic. Nor have we been in a fatal auto accident. We werenāt in the World Trade Center on 9/11 or in either of the aircraft which were murderously crashed into them. We havenāt contracted a fatal infection. None of us has been murdered in a drive-by, a mugging or a home invasion. In fact, things that happened before we even āwereā show our luck, as just enough of our dadās sperm reached our momās ovum, at just the right time of the month, to allow one lucky little tadpole to fertilize it. Then, the fertilized ovum somehow found its way through the maze of our momās female plumbing and into the uterus. Many just get lost. And then we implanted in the uterus and grew. Only about half of the fertilized eggs actually survive. We did. We were lucky. We had no control over this process but, for us, it worked just fine.
<p>
āYew arre varry locky to live in U.S.,ā said Dr. Strati. Dr. Strati is an Italian physician, a āfellow,ā who is working at M. D. Anderson, learning the sub-specialty of oncology and the management of leukemias. We had been discussing my 17p deletion/p53 mutation which we had discovered just over a year before. That mutation made my disease much more difficult to treat and reduced my life expectancy, in the absence of a successful stem cell transplant, to about a year or two. It makes the disease so difficult to treat that in some places, like Italy, apparently, I wouldnāt have been treated at all, or at least wouldnāt have been expected to survive very long.
<p>
I was immediately reminded of a patient from Germany whom I had been told about by Dr. Keating, a patient who had come to M. D. Anderson with advanced CLL, even worse than my situation. Her white count had been 300,000, she had a hugely enlarged spleen, low platelets and many other dismal prognostic features. She was in her late 60s, and her situation was so dire that she was not going to be treated in Germany, where, in the semi-socialized medical system they have, your treatment depends on your expected outcome and the years of survival that might be anticipated as a result of your treatments. This patient, said Dr. Keating, was in the āno goā category in Germany, as she was too old and her expected longevity was too short for her to qualify for therapy. So, she had come to Houston and to Dr. Keating looking for help, where she was included in the Phase I part of the PCI 32765/ibrutinib study in late 2010. And, as sick as she was, she has since done extremely well on this wonderful new drug.
<p>
My luck however, began about a decade before. I found I had chronic lymphocytic leukemia (CLL) in early 2002 and at that point I was just certain I had only five or six years to live. After all, my father had this disease and lasted just five years with it. And there were no good treatments available. Yes, there were many, many treatments available, and many of them could induce at least a partial remission but as a rule, the disease almost invariably came back and the patient still died within five or six years, treated or not. That led to a school of thought that it wasnāt worth doing the treatments at all. There was a lot of āwatch and waitā going on. Or, as we patients called it, āwatch and worry.ā
<p>
But, within months of my diagnosis, while my doctor and I were casting about, trying to figure out what we should do or not do with all the unsatisfying options available, a paper was published from the researchers at M. D. Anderson describing a new three-drug combination that they had tried experimentally on about 200 patients. It included a drug not even approved for CLL, a drug called Rituxan (rituximab) and two other standard CLL drugs, Fludara and Cytoxan. The results were incredible. They had achieved 80% or so remission rates, and this was in a time a 30-40% remission rate with other drug combinations was considered to be very good. This new combination was called FCR, for the initials of the three drugs and it soon became the āgold standardā in the initial treatment of CLL. That article led to my first bit of luck.
<p>
The lead investigator was a doctor named Michael Keating, and I was intrigued by his involvement in this study, so I began reading other articles and studies in which he had been involved. I quickly learned that he was a power within the CLL community and was involved in many, many studies of drugs designed to fight or even hopefully cure the disease. I saw his name everywhere; on articles on-line, as a speaker at scientific meetings, in interviews I could watch on-line and so on. This guy, I figured, is one of THE experts in the world regarding CLL. I need to follow what heās doing.
<p>
Anyway, we used Dr. Keatingās FCR stuff in 2002 in Denver, and it put me into an absolutely complete remission. A couple of years later, when the leukemia was coming back we used another combination including the Rituxan to put me into remission again. Shortly thereafter we left the Denver area and moved to Texas, to be closer to our family (because I figured Iād be dying by 2006 or 2007 or so). And about this time the disease recurred yet again. I knew it would; after all, by definition, my disease is incurable.
<p>
In late 2007 I was needing treatment again and my doc in Denton was rather out of ideas. There were no great options for treating patients who needed a third round of therapy for CLL. He suggested sending me to M. D. Anderson to see what they might recommend for someone like me. He asked who Iād like to see down there. Now, I was surprised to be asked who I wanted to see, figuring that Iād be assigned to whomever they wanted to send me to, some resident or fellow who happened to be on rotation there. But, having been asked the question, I said, āDr. Keating?ā in a plaintive, hesitant way, as I figured that there was no way at all Iād be able to get in with a doctor of his stature and prominence. I thought that would be like asking Steve Jobs to come over to fix my Mac computer.
<p>
But, amazingly, I did get an appointment with Dr. Keating, which led to six months of experimental chemotherapy, putting me back into a three year remission. And when that finally failed last year, it led to another experimental trial of a new drug. But by then, I had the p53 mutation and, really, nothing was going to work very well.
<p>
Thatās where I was last February when my most recent chemo failed. I had been through four different courses of chemotherapy over ten years and was left with no good options besides that of a stem cell transplant, which could be potentially curative but also could be a lethal choice. About 15-25% of folks getting stem cell transplants of the kind Iād be needing die of the procedure or its complications. I had met with the kind folks in the M. D. Anderson transplant clinic to start setting up such a procedure when my previous bits of luck led to my most recent lucky streak.<p>
The day after meeting with the transplant coordinators I met again with Dr. Keating. He had said heād try to get me into a new drug trial that was about to open and he did! He was able to get me into the newly available PCI 32765/Rituxan drug trial, a study including only forty lucky souls and the one which Iāve now been in for five months. It has so far allowed me to avoid a stem cell transplant and allowed me to live an almost entirely normal life.
<p>
So, my luck started when my doc in Denver, in 2002, read an article authored by Dr. Keating which led to my getting the FCR treatment that year and led me to start inquiring about Dr. Keatingās CLL studies. That led me to ask to be seen by him when I went to M. D. Anderson in 2007 and that led to my ultimately being lucky enough to be one of only forty pretty sick patients to be selected into this near-miraculous drug study.
<p>
And the results continue to be astounding. I went back to Houston in June and had another round of tests, including a bone marrow biopsy, CT scan, chest x-ray, and blood tests. The results are spectacular. The bone marrow biopsy shows that, pre-treatment, 69% of my marrow cells were leukemic but after just three months on the drug, that number has been reduced to 23%. Similarly, pre-treatment I had numerous grossly enlarged lymph nodes, up to the 16cm. mass (about seven inches wide) I mentioned in my last message. After the three months of therapy, all my tumors have been reduced to about 12% of their previous size by volume (they have been reduced by about 50% in all dimensions). The blood tests show continued dropping of my white cell counts and stable red cell and platelet counts.
<p>
But not only has my disease been considerably diminished already by just a few months of therapy, but during this time I also have found that my chronically swollen, painful and frequently infected sinuses have healed and have not been a problem in months; warts on my hands, which I have been battling for ten or twelve years have almost entirely disappeared; a chronic cough and frequent wheezing Iāve had for a couple of years has cleared up; and my hair, which has always been very fine and straight is getting increasingly coarser and is starting to curl!
<p>
The other side effects continue to be a nuisance but are tolerable. Iām still having intermittent joint pains in my hands, feet, ankles and wrists. But the pains, when they appear, last just four or five days at a time and then go away for a few days, before moving on to some other joint area. I can generally take some anti-inflammatory drugs and go on with my life. Additionally Iāve been having muscle cramps, spasms and twitches fairly regularly. I have been taking magnesium supplements in several forms to combat these symptoms but the folks in Houston told me to try tonic water. Yeah, tonic water! Tonic water contains quinine which is a long-time remedy for leg cramps and restless legs. So, I drink a couple of cans a day and take a little magnesium in the form of a Maalox antacid and I do pretty well. Sure beats dealing with the complications of a stem cell transplant.
<p>
Hereās another example of how lucky I think I am to be in this study. In the first phase of the PCI 32765 study, it was known, or at least assumed, that the drug might be a good lifetime treatment for CLL, but was unlikely to be a cure. Since it wasnāt to be a cure, two of the original participants dropped out of the study and opted for stem cell transplants. One of them has since died of the transplant. I havenāt had to face that decision yet, thanks to the fantastic results of the PCI 32765.<p>
Now, these are still very short term results, as Iāve only been on this drug for five months, but most of the folks who started the Phase I study back in October 2010 are still on the drug and at this point, many of them have been on the drug almost two years, and still no serious adverse effects have been noted. Amazing.
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Yes, I am so fortunate to live in the U.S. If I had been born in Uganda, Peru, China, Russia or perhaps even England or Germany or dozens and dozens of other countries across the world, Iād either be dead or dying by now. And of course, I had no control whatever over where I was born. It just happened that way. Iām a lucky man. Iām being watched over by Someone. I donāt know what Iāve done to deserve this Gift, but Iām eternally grateful and hope to live my life in a way which justifies what Iāve been given.
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Iām going back to M. D. Anderson next week for the last of my monthly infusions of Rituxan. After that, Iāll be solely on the PCI32765/ibrutinib, probably indefinitely as long as itās continuing to work. Weāll be getting periodic bone marrow biopsies, CT scans and blood work, but our lives will no longer be so rigidly planned around our monthly trips to Houston. More later.
<p>
Dave
<p>
[--Over lunch a couple of days ago, Mike and I were talking about how lucky we were. We both have lethal diseases. He has lung cancer which has spread beyond his lungs and I have an incurable leukemia. There are no cures for our diseases, but there are treatments and weāre both currently undergoing novel experimental therapies. But the reason we feel so lucky is not just our access to these experimental treatments, but itās because weāve both had good lives. Weāre both Vietnam vets and both of us saw buddies and brothers in arms who came back from the war in a box with a flag draped over it. We came back intact and have been able to have another 45 years of productive lives with family and friends, 45 years our dead buddies didnāt get. And, weāve been able to live quite a bit of time beyond the dates of our diagnoses, years that I count as ābonusā time, as you live your life differently when youāve been told you have an incurable, deadly disease. You really do. Life feels different and different things are important to you. Weāre lucky to have the opportunity to have all these extra years. And if we reach the point where there is nothing else to be done for our diseases and itās our turn to check out and get into the box with the flag on itā¦well, itās been a great ride.]
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āFlower, donāt be proud of yourself. Eventually you will fade.ā --Afghan poem.Dave Eckberghttp://www.blogger.com/profile/08992997044938074424noreply@blogger.com0tag:blogger.com,1999:blog-6928201955721701591.post-79677519147185737082012-05-24T10:26:00.000-05:002012-08-11T23:12:00.904-05:00Your Questions AnsweredDaveās Great Adventure<br>
Book 5, Chapter 2, Verse 2<br>
<p>
<p>
Over recent weeks and months, as Iāve gone through several rounds of testing and evaluation, Iāve been asked many questions about whatās going on and so I thought this would be a good time to answer them for all of you.
<p>
1) What ever happened to the bone marrow transplant or stem cell transplant you were getting ready for?
---When I developed the p53 mutation, which I discussed last summer, wherein I lost my tumor suppressor gene, it meant that I was going to have a markedly more difficult time with my disease. It meant that chemotherapy was unlikely to work very well anymore and that my survival was likely only going to be a couple of years or so. The only chance I had for long term survival would be to have had a stem cell/bone marrow transplant (the terms are interchangeable and mean the same thing) to replace my diseased bone marrow with healthy cells from a donor. We were getting ready for such a transplant earlier this year, just as I was also being evaluated for inclusion in the PCI 32765 study. When it appeared that I would be eligible for the study drug, the bone marrow transplant was put on hold while we waited to see how I responded to the drug. Iām still scheduled to see the stem cell transplant team in a couple of months, after I have another CT scan. We need to see if my tumors are resolving, which Iām sure they are, at least in the very short term. If I fail to respond to the drug in the future, we will still proceed with a transplant at some point. However, as long as Iām doing as well as I am now, Iāll be able to avoid this procedure.
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By the way, I mentioned weeks ago that based on the preliminary HLA cell typing that had been done on me in 2002, when my siblings were being tested as possible cell donors for me, that there were already about 70 possible donors listed in various blood banks. That was based on, I believe, looking at 10 of the 12 HLA antigens (or markers) on my white cells. Now, after having completed the testing on all 12 antigens, that number has been reduced to about 36 possible donors, which is still incredible when you hear that only about 30% of folks who need stem cells ever find a match (and thatās why I would encourage all of you to consider going to a blood bank near you and getting tested by simply having your cheek swabbed. You could, quite literally, save someoneās life).
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I also found out, generally, where these 36 donors are. It turns out that most of them are in North America, one is in England, a few are in Germany and, get this, two are in Japan. Japan! Iām dumbfounded to find that I have potentially matching donors in Japan. And Iām also surprised to find that none of my potential donors are from Sweden since, as I mentioned, genetically Iām half Swede. I fully expected to find a cluster of donors from southern Sweden where my dadās parents came from. I wonder if perhaps the Swedes donāt share their blood bank data with other nations or something.
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2) You said you had numerous tumors in your abdomen and had a PET scan to look for cancerous lesions, but then you said the PET scan was negative. How can that be?
<p>---Well, the PET scan indeed looks for malignant tumors and I indeed had numerous, as in ādozens and dozens,ā of tumors in my chest, belly and pelvis but the PET scan was negative because my leukemia cells, which were clogging up my lymph nodes, really arenāt cancerous. Yes, I have a blood cancer, leukemia, but the individual cells that I make way too many of, and which live way too long, arenāt really cancerous. They just live for an indefinite time and lodge in my bone marrow and lymph nodes, taking up space so that eventually there is no room for the normal cells to live and reproduce. At that point a person with CLL will become anemic and unable to fight off infections and death ensues. But the leukemia cells themselves are not the malignant kind of cells which spread throughout the body and invade other organs like malignant cells from prostate cancer or breast cancer.
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3) But since you had a huge tumor in your pelvis (you said it was 16 centimeters in size) and since the PET scan, though negative, isnāt as definite as a tissue biopsy, why did you cancel the fine needle biopsy that was being scheduled for you?
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---Yes, I had many tumors in my belly, among them the aforementioned 16 cm. tumor, which I could feel when I lay on my stomach to have my bone marrow biopsy. It felt as if I was lying on a softball. And, yes, a tissue biopsy is certainly more definite in terms of diagnosing cancers than a PET scan, I suppose, but in the case of using the PET scan to rule out Richterās Transformation (a seriously malignant transformation of CLL) we decided that the PET scan was good enough. A biopsy could only confuse the issue of whether or not I could enter the study. We had evidence that I was free of lymphoma, by the PET scan, and decided to go with that. If we had done the biopsy, then the pathologist reading the tissue specimen would have been looking at dozens, or hundreds, of little Rorschach tests, as he or she decided whether any of them looked malignant. If they found a few they couldnāt be sure of, it might have kicked me out of the study or delayed my starting the study drug. If, on the other hand, it turned out that I indeed did have an undiagnosed lymphoma, the worst that would happen is that I would have failed the study drug, the PCI 32765, and would have gone on to intensive chemotherapy and a stem cell transplant anyway.
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4) Why did they almost keep you out of the drug study just because you had used the Rituxan three times in the past?
<p>
---Iām actually not quite sure about the answer to this, but I have some thoughts. First, in the initial studies of the PCI 32765, they used the study drug by itself, and got very good results. In the new study, of which I am a part, they are now combining the PCI 32765 with intermittent Rituxan; weekly at first, then monthly for up to six months (remember that Rituxan is an antibody which attacks a protein on the surface of CLL cells, destroying them). The theory is that the PCI 32765 will drive the CLL leukemia cells out of my bone marrow and lymph nodes and then the Rituxan will be in my bloodstream to directly kill them. I think possibly the reason for the restriction on prior exposures to Rituxan which were made in this study was because the Rituxan is a mouse-based antibody. Being at least partially of non-human origins, and having some non-human proteins, patients can actually start producing antibodies against the Rituxan itself; antibodies against the antibodies, if you will. That would reduce the effectiveness of the drug and could also lead to more side effects. But, if that reason is correct, then I wonder why my exposure to the Arzerra was also included in the count of prior uses of Rituxan since Arzerra, like Rituxan, is also an antibody against CLL cells but is āhumanized,ā and so I wouldnāt think it would induce antibody exposure to Rituxan. But perhaps the two drugs are more similar than I realize and perhaps an antibody against one might affect the other as well. I have recently found that yet another similar antibody drug has been developed and has been called āfully humanized,ā so perhaps the Arzerra is not as āhuman-likeā as I thought.
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5) If the drug is working so fantastically well for you, why are there only forty people taking the drug in this study? Why donāt they give the drug to all the patients with CLL?
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---There are two parts to this answer. First, though the drug seems to be working incredibly well on me (and the other folks in the study, too, from what Iāve informally heard) it is a very new drug and there are absolutely no long term studies of it. The folks who have taken it the longest started on it in, I believe, October 2010, so there is only 18 months of data on the drug, in a very small number of patients (the first study of the drug started with about 117 patients, all of whom were pretty sick, as is generally the case when a Phase I study is started with a new drug that has not been used on humans before). So, though it looks like the PCI 32765 works very well and that there are no serious side effects known yet, it could be that down the road a bit, say in two or three years or more, some serious conditions could develop. Iām hoping that two or three years from now, all the folks on this drug are still doing just fine, but it might turn out that we all start getting diabetes or brain tumors or something. Additionally, the PCI 32765 works on the āBrutonās tyrosine kinaseā ( description to follow) which is present not only in all CLL cells but on ALL NORMAL B lymphocytes, too. It can in theory and perhaps in practice too, cause very low antibody counts in folks taking it after some length of time, by killing off too many B lymphocytes, which make your antibodies. Hopefully we wonāt all be getting sick after using the stuff, but we donāt know yet. As more data is collected on the drugās use, and if it seems to be generally safe in the longer term, it will be used in a more widespread manner. The second part of the answer is that, though there are only forty patients in āmyā study, the Rituxan and PCI 32765 combination, I believe that M. D. Anderson and other research facilities are doing several different studies with the new drug, in combinations with other anti-CLL drugs, like Revlimid, FCR and other combinations. Plus, the National Institutes of Health, on the east coast, is also doing a study of about another 100 folks. So, a few hundred folks are actually getting the drug right now, but hopefully it will soon be shown to be safe for widespread use throughout the world.
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6) So, really, what is this new drug?
<p>--First, I want to tell you that this new stuff, the PCI 32765, has acquired a name which is much easier to deal with that the string of numbers and letters Iāve been using. I have seen it called āibrutinibā in the last couple of months. The PCI 32765 designation was probably the manufacturerās in-house development code and the āibrutinibā seems likely to be its generic name. Iām sure the company will come up with some snazzy, cute name for the drug soon; something like āCeLL-Out,ā āCeLL-cideā or something. Itās one of several new drugs being tested which are an entirely new class of drugs in the battle against CLL, a class called kinase inhibitors. They all have strange names thus far. Another blogger named Dave, who writes the excellent āCLL Diary,ā calls them the ālicense plate drugsā as they have names like CAL 101, ABT199, AVL 292, SGI 1776 and my own PCI 32765.
I mentioned this stuff in passing a couple of months ago when I was speculating on just what new study I might get into. You may remember that I talked briefly about the PCI 32765 as the āBTKā drug, which name reminded me of the ābind, torture, killā serial murderer in Wichita, Kansas many years ago. The ābtkā drug actually is a āBrutonās tyrosine kinase inhibitor,ā a name only a biochemist could love. Now, I know that both PCI 32765 and the term āBrutonās tyrosine kinase inhibitorā mean nothing to anyone out there, so Iām going to paste in a simplified explanation which appears in the wonderful CLL information web site, āCLL Topics,ā by Chaya Venkat, whose husband died of CLL in 2008. This will get a bit long, but itās so well written I encourage you to dig into it. Here is her explanation of what ākinasesā are and how they work in leukemia, CLL specifically. I have edited her description very slightly.<p>
āKinases ā master controllers:
<p>
Kinases are extremely important enzymes that control much of how the cells in our body function. There are several hundred different kinases, controlling different functions. One type of kinases, called protein kinases, is the largest group. Protein kinases can transfer a phosphate group from ATP to a protein in a cell, thereby activating the protein.<p>
If that bit of chemistry began glazing over your eyes, try this for size. Kinases function as an āonā or āoffā switch. Without the help of a particular kinase turning the protein āonā, the protein in question is inactive and cannot do the job it is supposed to do. Thus, kinases control much of the machinery of the cell ā its ability to proliferate (reproduce), move about the body, ability to receive or send messages to its neighbors, whether it lives or dies.
To put it in blunt terms, kinases are the central master switches of how each cell in our body works. As you can imagine, all hell breaks loose if one of the master switches goes awry, if it gets stuck in the āONā position too long for example. Mutations, deletions or mangling of the structure of a regulatory kinase can play havoc with the particular protein and the cell function it is supposed to control. Most if not all human cancers are thought to be caused by one or more malfunctioning kinases.
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Kinases make nice targets for new drug development:
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So, if a malfunctioning kinase is at the root of a particular cancer, how about blocking that kinase and thereby block its bad influence on the proteins it is supposed to control? Great idea, but not that easy to do in real terms. Many kinases share common features. So, a drug that is developed to block a particular kinase may also block a bunch of other perfectly normal kinases, and thereby disrupt some vital function of the body. Broad spectrum kinase inhibitors can be very toxic because they can block too many vital pathways ā a case of the cure being worse than the disease.
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Even Gleevec, the miracle kinase inhibitor drug for CML, has some toxicity concerns. A 2006 article linked Gleevec to heart failure in a small percentage of patients. āTen CML patients treated with Gleevec at the M.D. Anderson Cancer Center in Houston developed congestive heart failure, although they had normal heart function when they began taking the drug. Studies in mice and in culture showed that the Abl tyrosine kinase protects cardiac cells from damage; when it is inhibited, heart cells die.ā This was a bit of an āunanticipated side effectā, according to the researchers.
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I am pointing this out not to take away anything from the game changing ability of Gleevec. It has truly been a miracle drug that paved the way for better and more targeted drugs in its wake. But all too many times I get letters from our members upset with the slow pace of clinical trials, unable to see the point of all these careful protocols and detailed research. Why canāt the FDA just approve CAL-101, and get done with it? After all, it is a biologic drug and not a nasty chemotherapy drug, it canāt possibly hurt ā can it? The answer is YES, IT CAN. Biologic drugs can hurt, can even kill. This is one of the reasons why early stage studies (Phase I trials) generally recruit late stage, sicker patients, people who have been through several layers of therapy already, so called āsalvage-casesā with few good choices left. āDo no harmā is a very important oath to remember, if you are a clinical researcher and you wish to avoid unnecessary tragedies.
Do we have similar kinase targets in CLL?
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Turns out, we do. Not just one target, but four of them. They are not just the BTK kinase we're mentioned, but kinases called SYK, Pim K, and Pl3-Delta. And all four kinase targets are being examined, with suitable small molecule inhibitors that may be able to stop them cold.
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Unlike CML, which has one particular messed-up protein (as you would expect, the protein controlled by Bcr-Abl kinase is called Bcr-ABL protein) that is responsible for the cancer, CLL does not have any one single such protein.
But in the last few years we have learned a great deal about what makes CLL tick. We know for example, that much of the survival advantage of CLL cells lies in their ability to resist suicide signals from the rest of the body. This ability to ālive long and prosperā is hugely enhanced when the CLL cells are surrounded by their closest friends and relatives, so called ānurse-like cellsā in their immediate microenvironment, constantly giving them encouraging feedback.
We know by now that just about any therapy can bring down CLL counts in the blood. Shrinking swollen nodes and clearing infiltrated bone marrow ā that is a lot harder. This is because out in the open blood circulation CLL cells are not all that hard to kill. But once they are nicely tucked away in the bone marrow, swollen lymph nodes, spleen, liver etc, they are much harder to kill.
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The four kinases listed above are known to be over abundant in CLL cells, cooperating with the microenvironment. They magnify the survival and proliferation and maturation signals the CLL cells receive from their neighboring nurse-like cells, through the B-cell receptors that each B-cell has on its surface. If we can take away this constant and soothing pep-talk magnified by overactive kinases listed above, it becomes a lot easier to kill the CLL cells.
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This is a distinctly different approach to killing CLL cells than the usual chemotherapy drugs we have come to love and admire (Not!). We are not trying to poison the CLL cells, we are only trying to kick their damn legs out from under them. And when they are down and floundering around out in the open, if they are not already dead because of their scary isolation from their fan club, that is when we can kill them easily with appropriate therapy. For a change we have an embarrassment of riches, four different kinase targets to try and block. The BTK (Bruton Tyrosine Kinase) and PI3K kinase are in the lead. The small molecule drugs that we hope will block these two kinases respectively are PCI-32765/ibrutinib and CAL-101.ā --Chaya Venkat, CLLTopics.org
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By the way, the Brutonās tyrosine kinase gets its name from Dr. Ogden Bruton, an Army doctor at Walter Reed Army Hospital back in the 1950s, who described a profound immune deficiency with very low lymphocyte counts in certain of his male patients. This condition turned out to be X-linked, in other words, linked to the X chromosome the male child had inherited from his mother. Fifty years later the defect was found to be in the tyrosine kinase of the childrenās B lymphocytes. That discovery made the tyrosine kinase a tempting target for research into treating B lymphocyte malignancies, like CLL. Finally a way to block the kinase has been developed!
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7) How are you doing on this drug so far?
<p>--In the short term (two months) I am doing just great. The lymph nodes we could feel, as well as those in my belly, seem to have completely melted away. In fact, during the first month on the PCI 32765/ibrutinib, as the tumors were disappearing, I lost about ten pounds! Of course, I then took the opportunity to eat more Mexican food, pizza and desserts, so Iāve gained back about half of that as I havenāt been watching my diet as closely as I should. I am having no nausea, no hair loss, no loss of appetite, and no peripheral neuropathies, as some chemotherapies can cause. I do have weird, transient, migratory joint pains, primarily in the small joints of my hands and feet, but also some significant pains in my low back, knees and ankles. They are sometimes fairly painful, like small attacks of gout or something (though I am taking allopurinol to avoid such things). But those joint pains seem to be the worst of my side effects. I am beginning to feel more energy, and I have noticed far less sinus congestion and have had no sinus infections since starting the new drugs (I was having to be treated for sinus infections on a regular basis before beginning the PCI 32765/ibrutinib and Rituxan).
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We are going back to M. D. Anderson this week where Iāll get the third of my six monthly infusions of Rituxan and at the same time weāll be getting a panel of lab tests, to see how my white cell, red blood cell and platelet counts are doing. Iāll be getting another CT scan in June to see how much is left of my many enlarged lymph nodes. And, so, weāll see how things go!
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Dave
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www.adventureswithleukemia.blogspot.com<p>
āWe must be willing to let go of the life we have planned so as to have the life that is waiting for us." -E.M. Forster (as quoted by David Arenson in his CLL Diary; www.clldiary.blogspot.com )Dave Eckberghttp://www.blogger.com/profile/08992997044938074424noreply@blogger.com0tag:blogger.com,1999:blog-6928201955721701591.post-57421438057896337122012-04-27T00:03:00.005-05:002012-05-01T22:27:18.173-05:00The Magic Stuff Called PCI 32765Daveās Great Adventure<br>
Book 5, Chapter 2, Verse 1<br>
April 26, 2012<br>
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āā¦there I was, under a sheet, naked except for some surgical scrubs theyād given me, but with the pants down around my kneesā¦.ā
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THE WAIT<br>
On Leap Day, 2012, February 29th, I was given the news that I had been accepted into the clinical trial of the new oral agent for combating chronic lymphocytic leukemia, the so-far unnamed drug that goes by the clumsy label of PCI 32765, the manufacturerās in-house development code, I presume. I instantly assumed weād be starting the study right away because just a couple of days before, during the fifteen minutes between being told I was in the study and being then told that I was excluded, Dr. Keatingās staff had been frantically trying to arrange the things I would need before I could begin taking the new drug, such as a bone marrow biopsy, an infusion of Rituxan and more. I was thinking weād have to go back to the hotel to extend our stay.
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But, almost as soon as I was told that I was in the study, I was told that weād start the protocol, oh, maybe in the middle of April. What! It appeared that when I had briefly been excluded from the new study two days previously, Iād lost my place in line, as it were. I asked if we couldnāt start any sooner, as I was extremely anxious to get started for many reasons. Gracy looked at her schedule and said it was filling rapidly but maybe we could start on March 27th, four weeks away. I asked if she would book me into that slot as it sounded a bit better than sometime in April, which sounded years away to me.
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We left Houston with that date in mind, and were very thankful to be in the study, but I was apprehensive about waiting four weeks to start. The new drug was just about the only thing standing between me and a bone marrow/stem cell transplant, with all its possible risks and complications, including, at a minimum, a 5-10% risk of dying, according to Dr. Khouri. I was fearful that something would happen to again get me excluded from the study; Iād get sick with pneumonia, Iād be injured in a car wreck, Iād fall and break a hip, Iād have a heart attack, or any of the myriad things that can normally happen to a 65 year old guy. I really wanted to get the study started and I wanted to make sure that I stayed healthy during the intervening four weeks. But I didnāt want to become a recluse.
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Months before, probably last Fall, we had planned a trip to Moab, Utah, to be with the Leukemia and Lymphoma Societyās Team In Training (TNT) for a half marathon that is run there every March. A group of TNTers from Colorado, including some good friends, was going to be running in the event and Iād been invited to speak at the dinner which is held the night before the event. Generally a survivor of lymphoma or leukemia speaks to the runners, who by then have spent months training for the event and raising money for research and patient assistance. We survivors want to let them know how much what theyāve done means to us. But for many months I hadnāt been sure if I could keep this commitment, as Iād been undergoing treatments with the Arzerra all Fall and then found that my lymph nodes were swelling massively in February. But, when we found that I wouldnāt start the new therapy until late March, it appeared that I would be free to attend.
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I had some reservations. Generally Kathy and I try to avoid crowds and folks who are obviously sick with coughs and colds, and weāre obsessive about hand cleaning, avoiding shaking hands, touching doorknobs and such. Going to the event would mean doing precisely what we usually try to avoid. Weād be traveling on crowded airliners, sitting in airports and sitting near lots of strangers in shuttles. At the marathon event Iād be among crowds of people, shaking lots of hands and hugging lots of folks. But, I really wanted to do it. Iāve been a part of TNT for five years now and they are just routinely wonderful people. I wanted to be with them and to be able to tell them my story. So we went. Everything went well and we had a great time with our teammates in Moab. And I didnāt catch a cold, either.
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But during that month wait, I could feel the masses in my neck and under my arms getting bigger every week, and my belly was getting more and more distended as the previously discovered tumors kept growing. Only later was I to find out how much they had grown. All I knew was that it was getting harder to breathe and that I couldnāt eat very much. There just wasnāt room in my stomach and chest. And the āmarblesā in my armpits grew into āgolf balls.ā
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THE PREPARATION<br>
Before and after our trip to Moab, Kathy and I were planning out our next month. We knew the study would include many weekly trips to Houston, at least initially. That wouldnāt leave a lot of time for domestic tasks, so were setting up lawn care, paying bills and asking our neighbors to get our mail and papers and such. And then we left for Houston, to start the new drug regimen.
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But there were still a few hoops I had to jump through. Our first day there, on the previously appointed March 27th, I had labs and tests scheduled virtually all day, from early morning until my last appointment, a CT scan, scheduled from 7PM to 10PM. That was to prove to be the most entertaining of my evaluations. But Iāll get back to that.
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I had multiple tubes of blood drawn first, before seeing Dr. Keating and his nurse Jackie. They did a physical exam on me and noted the sizes of my palpable masses. The tumors under my arms were now about golf ball sized and the ones in my neck had grown to about marble sized. Then I had an EKG scheduled, to ensure that I had no significant heart irregularities (besides my long-standing irregular heart beat and my floppy mitral valve). I was able to get my EKG done very early, in the morning rather than the 3PM it had been scheduled, so we thought that perhaps we could get my bone marrow biopsy, scheduled for 4:30PM, done early as well if we checked in early. We were hoping to get a bit of a rest in the afternoon before we went for the CT scan at 7PM, since it promised to last until late. And since I was instructed not to eat anything for three hours before the CT, we wanted to have a break between the bone marrow biopsy and dinner time so I could eat before the three hour limitation started.
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We checked into the bone marrow biopsy clinic at 1PM. I told the receptionist that I was very early, but hoped that I might be able to get in before the scheduled time. She let on that, yes, there was in fact a good chance Iād get in early. So Kathy and I found a seat, away from most of the other patients, like we always do, and we waited. And we waited. And we waited. 2PM came, 3PM came, 4PM came and went and I hadnāt been called back. So much for getting in early. We killed the time with our smart phones, playing āWords With Friendsā and āDraw Somethingā with our kids, long-distance. I think they were supposed to be working, but instead, they were entertaining us. But it really did help to pass the time. Finally, I was called back at 4:30.
<br/br><br/br>
Now, a bone marrow biopsy is probably one of the most feared tests a person can be told they need. Iāve seen folks weeping almost hysterically in the biopsy waiting area, so frightened are they. People like to tell others about just how excruciatingly painful it is. And, in fact, a bone marrow biopsy can be painful, but it doesnāt have to be. Iāll tell you that if any of you out there ever have to have a bone marrow biopsy, go to Houston and get it done at M. D. Anderson. Some places itās so painful they give powerful IV drugs to help block the pain, but at MDA, youāre wide awake and totally conscious. There, they operate much like your dentist does. They use lots of local anesthetic and they wait a while to make sure itās working before they bore into your hip bone to drill for marrow. The process, though not completely painless, is probably less painful that your average flu shot or falling down and spraining your ankle. And, the biopsies are done not by doctors either, but by trained nurses and PAs who do dozens of them every day. And theyāre very good at what they do.
<br/br><br/br>
So, I ultimately finished with the biopsy but by then it was 5:30. We now had only thirty minutes to find a place to find dinner before I was forbidden to eat, in preparation for the CT scan. We quickly headed towards the Mays Building which is at least a quarter of a mile away, where the CT scan was to be done. Itās so far away that they have a golf cart shuttle system to take patients and staff to and from M. D. Andersonās main building to the Mays Building via sky bridges. We had been there before and knew they had several snack bars so we headed for one. But, on arriving there we found that the building looked almost completely shut down for the night and all the snack bars had closed. So we backtracked a few hundred yards to the Rotary House International Hotel, which is also attached to MDA by sky bridges. We knew they had restaurants which operated during the evening hours and we were able to get in there and get me fed before my 6PM cutoff time for eating.
<br/br><br/br>
THE CT SCAN<br>
After hurriedly finishing off my nutritious meal of fish and chips before 6 PM, we started walking back the couple hundred yards to the Mays Building. As we had noted, the whole building seemed to be pretty much shut down for the night. Most lights were turned down, desks were empty of receptionists and very few folks were anywhere to be seen except for an occasional security guard making his rounds. I allowed myself to think that with so few folks around we might actually get into the CT clinic early and be done before the appointed 9-10PM.
<br/br><br/br>
So you can imagine our surprise when we got up to the 7th floor CT clinic and walked into what looked like the midway at the carnival. It was brightly lit with perhaps 75 people milling about in the waiting area, sleeping on chairs, covered with blankets, reading, listening to their Ipods, and so on. A scrolling informational sign conveyed bad news: āOne Unit Down For Maintenance, Expect Delays,ā it said. Just like you see along the highway during construction.
<br/br><br/br>
I checked in for what was to be a long wait. I knew I had to āprepā for the scan, but previously that meant only drinking about a quart or so of salty-sweet ācontrastā and then waiting about ninety minutes. But this prep was to be a bit more complicated. First I was instructed to drink about a pint and a half of a thick, viscous barium āfruit smoothieā within about fifteen minutes. Very chalky, and I got it down as fast as I could. It was tolerable. Then, a half hour later they called me back to put an IV in my arm. I was to have some IV contrast injected during the test as well. And, they told me, I was to have some ārectal contrastā too. āUh, what?ā āYes, youāre getting rectal contrast too. Sign here to acknowledge that youāve been told.ā I signed as instructed.
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Then we waited and waited. Folks were going back from time to time but the place wasnāt clearing out very fast. Finally, at about 10PM I was called back to the exam rooms. I was told to undress completely, underwear, socks, everything, and put on some hospital scrubs. Then I was given yet another bottle of āfruit smoothieā to drink and about 30 minutes later was taken into the CT room. They placed me on the table and covered me with a sheet. The nurse said, āPull your pants down and turn on your left side.ā I knew what was coming, and with that, yikes, she inserted a nozzle into my nether aperture!
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So, there I was, under a sheet, IV in my left arm, my belly heavy with barium "smoothies," and naked except for the surgical scrubs theyād given me, but with the pants down around my knees and a tube stuck up my butt. I smiled, a wry smile. āThis,ā I thought, āis probably like what I put my patients though for so many years.ā
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The CT went quickly after all the waiting and we were glad to get out of there. But by now it was 11PM and the building really was shut down. We had to have security let us out and direct us to a shuttle to take us to the parking garage, about a half mile away, so we could get back to our hotel.
<br/br><br/br>
But, I had finally jumped through all the hoops, I could start the study. The next day I had my first dose of Rituxan which I had to have in me before starting the PCI 32765. I had a bit of a reaction to the anti-CLL antibody drug, as it was blowing up billions of CLL cells all at the same time so I needed some steroids, antihistamines and some Demerol to stop the shaking chills I was having. But, other than that it went well.
<br/br><br/br>
The PCI 32765<br>
Astoundingā¦just astounding. <br>
The day after the Rituxan infusion I saw Dr. Keating and Jackie one more time. Things were looking great, though I did find that the CT scan showed that the largest tumor in my belly, which had been 8 cms.(about the size of an orange) in February, was now 16x8 cms. in size, about the size of a squashed cantaloupe, so fast was it growing. They cleared me to start the PCI 32765!
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I had been given bottles of the drug a couple of days before and had immediately broken open the seal on the bottle to see what this new wonder drug looked like. It was just a bunch of generic, grey capsules without any markings on them whatsoever. But now I was cleared to take it. I had supposed that since I was taking an experimental new drug for the first time they would want me to take the first dose while I was with them so they could watch me for a bit to see how I handled it, but they didnāt want me to stay at all. Instead, they said āBye byeā and with that we were off, driving back to Denton. The instructions with the drug said I couldnāt take it until at least two hours after Iād eaten, and since Iād eaten breakfast, I couldnāt take the drug while we were in Houston. Instead, I ended up taking my first dose while driving up Interstate 45 at a speed somewhat faster than the posted 75 mph limit. It was a good omen.
<br/br><br/br>
Iāve now been on the PCI 32765 for four weeks, and it has worked astoundingly well and with astounding rapidity. I could feel a difference in my lymph nodes under my arms within days. Within ten days my belly was not so distended. And now, after four weeks on the stuff there are no longer any palpable masses in my armpits, neck or belly. I feel so absolutely fortunate to have been selected to be one of the 40 high-risk patients in this study. The results are unbelievable so far. Now, itās only been a month so far, but other folks in the previous Phase I study have now been on the drug for up to 18 months or more and still no significant problems have developed. I expect more good things. Iāll āgetā to have another CT scan in a couple of months to see how the 16 cm. mass in my belly is doing, but already I can tell from the fact that my abdomen is flat now, that itās shrinking rapidly.
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And that is enough for now. I have let this message get far too long so Iāll close and send more technical details of the drug, and answer your questions in another letter.
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If youāve actually read all this, I thank you for your patience with me.
<br/br><br/br>
Dave
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āWe also know that everyone gets their own box of challenges, they just come in different size boxes with different colored bows. We hope your box has been lost in the mail.āāfrom our friend Sarah, whose husband Mike is battling an incurable Stage 4 lung cancer. Theyāre going on a cruise to England and Scotland this summer.
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āIād rather die living than die dying.āāSteve Appleton, chief executive of Micron Technology (semiconductors) who recently died when his high-performance airplane crashed in Boise. (Mike and I agree with this philosophy.)Dave Eckberghttp://www.blogger.com/profile/08992997044938074424noreply@blogger.com0tag:blogger.com,1999:blog-6928201955721701591.post-78550769273736628412012-03-01T23:48:00.000-06:002012-04-27T00:33:48.878-05:00Great News!Daveās Great Adventure<br>
Book 5, Chapter 1, Verse 5<br>
March 1, 2012<br>
Great News<br>
<br/br><br/br>
I have great news from Houston tonight. Today Kathy and I found a wonderful little Mexican restaurant not too far from our hotel. We've been looking for places to eat since we got here and have found lots of neat little places but it's hard to find the kind of Mexican food we really like. But today we found a little taqueria not too far from here that has enchiladas with real red chile sauce and not chili con carne like most of the Tex-Mex places in Texas have. It's nice to know where great places to eat are.
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In other absolutely wonderful news from Houston, we went back to M. D. Anderson today to meet with Dr. Keating's nurse to see what the status of my inclusion in the new drug study might be. We were met by the research nurse in the waiting room and she had a fifteen-page permit in her hand. She said I was in! She started telling me about the schedule we'd need to follow and how we'd be getting the drugs, one of which is my old friend Rituxan, which is given by IV infusion, and the other is the research drug PCI 32765, which is in a capsule form. I asked, well, what if the PET scan isn't normal and what if the biopsy shows Richter's. Oh, don't worry about that, she said, they had already reviewed the PET scan and it was okay. Wow!
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So we found out that we'll be starting the new drug clinical trial later this month, on March 27th, to be specific. I'll need a series of tests first; a bone marrow biopsy, CT scan, EKG, many blood evaluations and another physical examination. And then we'll need to come to Houston weekly at first, and then monthly for about six months. But hopefully the drug will work as well for me it has for the first folks on whom it was tested. I will get the Rituxan weekly for four weeks and then monthly for another five months. Once I start the pills of PCI 32765, the day after my first Rituxan infusion, I'll be taking it daily for at least a year, barring significant complications.
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Then Dr. Keating's clinical nurse asked me to come in to the clinic to talk with Dr. Keating between patients. I was happy to do so. When he had a chance to break free between his scheduled patients, he came in to our room and we talked about getting me into the study group. Only 40 patients are being accepted into this group! I believe only 117 were in the first, Phase One group (in which the drugās safety and efficacy were evaluated, and a standard dose defined) so it's a special and select group of folks who have been picked to test this drug. I'm really honored and hope that my experience will help me and lots of folks who come after me. Since the PET scan was normal, or at least, cleared me of having the Richter's Transformation, I asked if I needed the needle biopsy which was still to be scheduled. Dr. Keating said he'd rather I didn't have the biopsy. That was good enough for me, as I didn't relish the thought of having a needle stuck deep into my belly to get cells from my tumors. So, after talking with Dr. Keating, we went back to the transplant clinic and canceled the biopsy. And with that, we were done.
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We plan to drive home tomorrow and get out our calendar to schedule to plan out our weekly and monthly trips to Houston. We'll have to plan our life around these trips but that's okay. I look forward to it.
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The next message will be about starting this new, experimental drug and what itās like being on it. Iāll also spend just a bit of time explaining how this Brutonās Tyrosine Kinase Inhibitor drug actually works. I know you canāt wait!
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More to come....
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DaveDave Eckberghttp://www.blogger.com/profile/08992997044938074424noreply@blogger.com0tag:blogger.com,1999:blog-6928201955721701591.post-48131725950945771012012-02-29T23:43:00.000-06:002012-04-30T22:14:39.566-05:00PETs and GorillasDaveās Great Adventure<br>
Book 5, Chapter 1, Verse 4<br>
February 29, 2012<br>
<br/br><br/br>
Hello again. Today was a much better day.
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We started out with me getting my PET scan (Positron Emission Tomography, if I'm correct). It's a scan which combines a CT scan with a nuclear medicine scan using some sort of radioactive isotope of iodine. Apparently malignant cells are aberrantly hyperactive metabolically and gobble the stuff up faster than normal when the radioactive iodine is attached to a molecule of sugar. So they do a CT scan of my body, and then overlay that scan with a scan of the overly active parts of my innards. Sounds easy, and actually it is, but the prep for the study...well, I wasn't ready for it.
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I had been told I couldn't eat anything for six hours before the study, so I expected that I couldn't eat or drink anything after midnight, as with many tests and surgeries and such. So, we bought some carrot cake for me to have as a midnight snack and I ate it about 9PM. Only then did I find (on-line) the M. D. Anderson instructions for the scan, which included recommending a high protein meal the evening before and avoiding carbs. Oh well.... Turns out I could drink as much plain water as I wanted, too, even up to test time. I really should read the instructions to these things, but I suppose I think I know too much to be concerned with such details.
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Anyway, we went up to the med-cen again today and found our way, with the help of a golf cart shuttle system, through the mazes of buildings and skyways. M. D. Anderson is a small city, self-contained with villages, parks, paths, hotels and restaurants. It would take a while to find your way completely around the place. But we're learning. We found our way, with the shuttle help, to the Mays Clinic where the PET scans are done. It's in a completely separate building from the main CT scanners, curiously, perhaps a quarter of a mile away. I had, according to my schedule, three appointments there. The first was "prep," followed by "injection and localization" and then "lymphoma restage." I checked in and sat down. A short time later my name was called, and I went to the back. Turns out all my appointments all ran together and I didnāt see Kathy again for several hours.
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The "prep" involved getting out of all my clothes which had metal, like my jeans, and getting into scrubs. Then I had an IV put in my hand. Then, I was told, I would "rest." "Can I read the paper?" "Can I get my cell phone?" The answers were "No, you will rest. And uncross your legs." I was commanded to "rest." I joked, "Well, can you give me a Valium or something so I'll rest?" But they took me too seriously, so I told them that, no, I really didn't need a pill. Then they turned down the lights and left on a backlit picture of a park, with a pond and daffodils in the foreground with red and purple tulips in the distance, in front of me. I rested. ZZZZZ
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About 30 minutes later a tech came in with a syringe encased in a heavy metal case. It was the radioactive iodine, with which I was going to be injected. He told me what it was and what he was going to do, he did it, and told me, again, to rest. For an hour. So I rested. With my legs uncrossed. ZZZZZ An hour later, another tech came in, and told me we were going to get my scan but first I was going to be given the opportunity to go to the bathroom, which I did. I came back out and sat in the chair where I had been told to wait. A tech walked by, looked at me and said, "Uncross your legs." I'm unclear, still, about the prohibition on crossing one's legs. Soon I was taken to the next room where the scanner was and was placed on the machine, which was, generally, like an MRI machine with a large tubular structure, which I was moved into and out of sequentially. It took, maybe, 30 minutes and it was all over. I guess the results will be available in a day or so.
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Meanwhile I still wondered what my longer term plan was to be. After my PET scan, I had no further appointments at all. When I last saw Dr. Keating, the plan was to get on the new PCI 32765 protocol, but when that plan fell through, I was left with no follow-up appointments or scheduled tests. Before I left his clinic, Dr. Keating's nurse had told me that he didn't like to be told "No," and might argue with the protocol managers. But, after Gracie came back yesterday and told me that no exceptions could be made after having called them, I gave up.
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But, Dr. Michael Keating is an 800 pound gorilla within the CLL community. If you Google his name and CLL, you will find probably hundreds of references and scientific articles by him. Plus, he runs his own CLL research organization, the CLL Global Research Foundation, which sponsors research all over the word. He lectures every month in locations around the world. Just this week he has returned from lectures in Hong Kong. So when I went back to the clinic this afternoon to see his nurse, she told me that HE WANTS ME to get on the PCI 32765 protocol and was still "in discussions" with the protocol manager. She told me to check back tomorrow by mid-morning to see if there had been any change. By now it was mid-afternoon so, we went back to our motel to get some rest.
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Soon the cell phone rang. It was Gracie, the research nurse. She said that the protocol managers, after "further consideration," had allowed me to get into the protocol. Amazing, just amazing. The logic they used to make this exception seems to be that they decided the Rituxan which I had been given in connection with a stem cell collection in 2004 didn't count as "treatment." It was just used to mobilize my stem cells for the collection we did back then. I don't really know what difference that should make, but I'm happy it happened. Rollercoaster starting up, safety bars engaged, clank, clank, clank, clank....
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But I'm not totally out of the woods with this study, yet. My understanding is that yet another exclusion from the protocol is the presence of Richter's Transformation, and we still don't know if I have this or not. My labs and exams are suspicious for it. The PET scan from today and the biopsy soon to be done will sort this out. Tomorrow will bring more information and hopefully no bad surprises.
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And, as always, more later.
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DaveDave Eckberghttp://www.blogger.com/profile/08992997044938074424noreply@blogger.com0tag:blogger.com,1999:blog-6928201955721701591.post-44475641264248550332012-02-28T23:34:00.000-06:002012-04-30T22:19:13.355-05:00Irony of IroniesDaveās Great Adventure<br>
Book 5, Chapter 1, Verse 3<br>
Irony of Ironies<br>
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February 28th was a tough day. We got whipped one way and then the other.
The day before we had gotten the news that my labs indicated the possibility that I had developed the deadly Richters Transformation form of CLL which I've previously mentioned. It happens in about 10% of all folks with chronic lymphocytic leukemia. The transplant folks mentioned that one of my lab tests indicated this possibility (specifically my LDH, lactic dehydrogenase test, which was elevated).
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So the next day we went to see my CLL expert doc. You may remember that last August when we found that I had the p53 mutation (which has a much worse prognosis than the form of CLL without this change) he started me on Arzerra to help me hold my own against the disease while they were waiting for some new drugs to be available. He picked the Arzerra because it's an antibody type drug, and as such, does not damage the body's immune system like most chemotherapy regimens. It worked at first but became ineffective after about five months. When I was found to have masses growing in my belly on CT scan a couple of weeks ago, my doc talked to Dr. Keating and was told there was new clinical trial which was just opening up at M. D. Anderson and that I was "Number One" on his list for it. I wasn't told what the trial involved but figured it might include the use of the new Bruton's Tyrosine Kinase drug, PCI 32765, which I've also previously mentioned. More about it later if I actually end up on the drug.
<br/br><br/br>
So we saw his nurse practitioner who examined me and went over my labs. She confirmed that the disease was progressing and that my labs indicated the possibility of Richters, though we still haven't confirmed this. She also mentioned that with my new finding of possible Richterās Transformation, I wouldn't be a candidate for the new PCI 32765 drug. That was an incredible downer to hear. I had been anxiously awaiting this new stuff which seemed much too good to be true; a pill a day without side effects, with a little Rituxan (another antibody type drug) thrown in on monthly basis for a few months. So, after hearing that, Kathy and I sat in the office, glum with disappointment while we waited for Dr. Keating to come in.
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But then he came in with a big smile on his face. "Just in time!" he said. The new drug is available and it will be perfect for me, he said. It shrinks tumors, even aggressive ones, and increases antibody levels, reduces infections, is well tolerated, and so on. Folks have been on it for 18 months or more without any serious side effects. He said he'd send in his research nurse to sign me up for the new clinical trial. Wow! After, being so bummed after our discussion with Dr. Keating's nurse, this was a complete turnabout. Kathy and I mentioned how rapidly things seem to change in my disease and that we've been through the CLL roller coaster more than one time. This was yet another up and down and up.
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As soon as he left the office for his next appointment his staff started trying to arrange a few things that I would need before starting on the new drug, the PCI 32765. I would need a bone marrow biopsy and an infusion of Rituxan. They were working in getting these set up ASAP, later the same day.
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Then Gracie, the research nurse came in. She started to sign me up for the protocol but stopped short, very early on, as we discussed my past treatments. She said she hadn't realized that I'd had Rituxan on three previous occasions (I had had the drug in 2002, 2004 and 2008), thinking instead that I'd only had it twice before. Then she said the new protocol excluded anyone who had had the drug more than three times. "But," I protested, "I have only had it for a total of three times so far!" Yes, she said, but you also had Arzerra earlier this year and that counts as a Rituxan infusion, as it's in the same category of drug.
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She then left to try to talk to Dr. Keating, who by now was doing a webcast for the Leukemia and Lymphoma Society, but in between questions and comments, he was texting her back. "WHY!!!" he texted when told I wasn't eligible for the new study. Gracie apparently contacted the folks running the protocol, looking for an exception, but none was forthcoming. After about 45 minutes, she and Dr. Keating's nurse came back to say that it looked final, that I wasn't eligible.
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So, here is the incredible irony in all this. The drug that Dr. Keating gave me to try to keep me healthy long enough to get me involved with the new drugs that are just now coming into availability, the Arzerra, is the drug which now makes me ineligible to take part in the study, now that it's finally available. That's just amazing. Depression to elation to depression in 15 minutes. The roller coaster. Again.
Tomorrow I have a PET scan and at some time thereafter (soon I hope) they'll schedule a fine needle aspiration/biopsy of one or more of my tumors. I'm not sure what that'll lead to in the short term, but if I in fact have Richterās, I think I'll be starting on high dose chemotherapy soon and the stem cell transplant will be expedited. But, that's just conjecture right now. Right now we have no concrete plan, but we'll have to have more details before we leave Houston. I hope to talk to Dr. Keating and his staff again tomorrow to see what they say is the next step, since the step we were left with today fell off a cliff. Stay tuned.
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DaveDave Eckberghttp://www.blogger.com/profile/08992997044938074424noreply@blogger.com0tag:blogger.com,1999:blog-6928201955721701591.post-11729673611940326602012-02-27T23:25:00.000-06:002012-04-27T00:31:32.120-05:00First Update From HoustonDaveās Great Adventure<br>
Book 5, Chapter 1, Verse 2<br>
First Update From Houston<br>
<br/br><br/br>
We had a wonderful trip to Antarctica. We were kept busy with multiple daily landings and cruising out among the wildlife and icebergs in the inflatable zodiacs that we used to go from ship to shore. We were tired from all the activities but it was worth it. Even the 5AM awakenings (which were 2AM Dallas and body time) were ultimately worth it as there was so much to see and because we had to make the most of the precious few days we had available to spend there. It was a special time. This place belongs on everyoneās bucket list.
<br/br><br/br>
But as soon as we got home we had to prepare to leave again, as we had to be in Houston for multiple test and evaluations within five days. So, Kathy worked on huge loads of laundry while I caught us up on bills and errands. Then we packed up again and drove to Houston, a drive we have made many, many times in the past five years or so. I was expecting several daysā worth of appointments as we had a lot of ground to cover and many questions to answer about my condition and its possible treatment.
<br/br><br/br>
First, as I suspected, they had added on some appointments to the two days' worth that had previously been scheduled. This was mostly because of the many large masses found in my abdomen on the CT scan I had just before we left on our trip a couple weeks previously. So, our originally planned two-day trip turned into a four day āvacation.ā
<br/br><br/br>
We first met the very nice folks at the transplant clinic and as far as they're concerned, I WAS having a transplant, probably within 3-5 months! There was no question about it! And here I thought we were just going to meet some folks and have some questions answered. My transplant doc, Dr. Khouri, is one of the pioneers of transplant procedures for leukemia. He says, and I've heard this before, that a transplant is the only possible cure for folks like me with the p53 mutation, which I described in some detail a few months ago. So, āfull steam ahead,ā according to him. He has scheduled a PET scan for a couple of days from now (to check for malignancies) and a lymph node biopsy at some time yet to be determined, but pretty soon, if they can possibly arrange it. They're still actually thinking that I may have the deadly Richter's Transformation lymphoma, based on some of my labs. The PET scan and biopsy will be important to confirm or deny this possibility and will help treatment.
<br/br><br/br>
I probably need to stop at this point to explain a couple of things. First I want to tell you why this new mutation I have, the p53 mutation, is so deadly. The p53 gene is called the ātumor suppressor gene.ā It tells cells to die when they are damaged. Now, most chemotherapy works by damaging cells so they will die. The alkylating agents and purine analogs that make up most standard chemotherapy regimens, like the Fludara and Cytoxan Iāve had in the past, work on this principle. They damage a cellās DNA so that they will die. But now that my disease has the p53 mutation (also called the 17p deletion but meaning the same thing), my cells donāt know to die when theyāve been damaged. Thatās why my disease is now so resistant to treatment. And thatās why most leukemia experts now strongly urge folks like me to get a stem cell (or bone marrow; same thing) transplant as soon as possible after finding out we have the deadly mutation. But these transplants can have their own risks of death, disability and numerous complications.
<br/br><br/br>
But Dr. Khouri quotes āonlyā a 5-10% mortality from the transplant procedure, better than the 15-25% death rate I've been hearing from most transplant experts. The success rate in curing my disease is said to be 50-70%, depending on my disease and how well might respond to pre-transplant chemotherapy.
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We met with the stem cell coordinator also. We already had some cell-typing results showing that my sibs don't match me, from tests done back in 2002 when I first got sick. My cells were also partially tissue-typed during that study. Based on the partial HLA (human leukocyte antigen) tissue typing that was done back then, she searched the marrow banks' data banks and found...get this...70 potential donors! Now, this number will decrease somewhat as they get the final parts of the tissue typing done (I had ten tubes of blood drawn today to get a complete HLA panel done) but as she said, all we need are one or two potential matches. Interesting news. I wonder where all these folks are. Since my dad was full-blooded Swede, I'm half Swede. I wonder if all these folks are in Stockholm or somewhere. Or maybe in the upper Midwest where lots of Swedes settled in the 1800s. Anyway, it will take, she said, 3-5 months to get a donor lined up, which is what limits and sets the time frame for the transplant. We should hear within about ten days about whether a match has been definitely located, though not necessarily if that match is truly available just yet (are they still alive, willing to donate, free of disease, etc.).
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If/when I have the transplant, they'll want us to move down to Houston for 3-4 months. Wow! They have given us the name of a social worker who can help us find nearby housing, and my cousin, Amber and her husband, have also offered to put us up at their home west of town if need be. Thereās also a huge hotel complex right across the street from M. D. Anderson which is in some way connected to the workings of the medical complex. It even has a skybridge connecting it to the cancer clinics. When I have the transplant I'll be in the hospital for about three weeks and then have to have daily visits for a couple of months! Sounds pretty intensive.
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By the way, I had to sign a contract saying that I understood that my kind of transplant would cost anywhere from $560,000 to $1,100,000 or so! āBut,ā I was told, āthat will include todayās consultation.ā Man, Iām glad that the consultation wouldnāt be an additional expense on top of the million bucks.
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I see my leukemia specialist tomorrow to see about whatever clinical trial he has in mind. The only thing I can see that would interfere with getting the stem cell transplant in the coming months would be if the drugs from this new clinical trial worked much better than anything else ever has. We'll find out his thoughts on this topic tomorrow.
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And that's all the news for now. This adventure keeps on getting more exciting.
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Bye now,
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DaveDave Eckberghttp://www.blogger.com/profile/08992997044938074424noreply@blogger.com0