Intro To My Story

This 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.

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!

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:
Prologue-- early 2002 up to about July 2002.
Book One-- The First Chemotherapy Experience, July 22, 2002 until October 2003
Book Two-- Relapse, and The Second Chemotherapy Experience, With Stem Cell Collection, October 2003 to about October 2004 with a few updates thereafter
Book Three-- Starting in February 2008, More Chemotherapy and Some Experimental Stuff, with introductory information in the letters leading up "Book Three."
Book Four--It's Baaack! Starting March 2010.
Book Five--PCI 32765; the Bruton's tyrosine kinase inhibitor. Starting March 2012
Book Six--Venetoclax. Starting about August 2016
Book Seven--The Transplant, starting in January 2017

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 dreck@prodigy.net

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.

A DISCLAIMER: 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!

A Brief Update

A Very Brief  DGA Update

February 2, 2018

(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).

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.

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.  

I really have no problems. 

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.  

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). 

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).

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? 😄

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.  

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. 

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. 

It's always some damn thing. 

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. 

Bye now,  Dave