Thursday, April 20, 2017

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 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

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!

Wednesday, April 19, 2017

Transplant update and synopsis

DGA—Synopsis; very late, but a quick review of events surrounding my transplant.
April 19, 2017
I am alive and, really, very well.
This is very late.  I had good intentions.  I bought a new laptop and took it to M. D. Anderson with me to try to keep up with events.  I never took it out of its case.  I’ve been chemobrained, immunosuppressed, febrile, vomiting, weakened, rashy, fluid overloaded and short of breath, and more.  But, nothing serious.  Really.  Here is a short synopsis of events.  More anecdotes will probably follow as I slowly improve.
1)      Left home in early February for MDA, to be admitted for a stem cell transplant.  Delayed yet again (sore throat) but ultimately admitted on March 1st for the procedure.
2)      Had six days of pretransplant “conditioning” 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.
3)      March 7th, Grace’s (my donor) stem cells went in without drama. No fever, chills, shakes, rash…nothing.  Nothing but Grace.
4)      Next nine days, post-transplant chemotherapy.  Methotrexate, Rituxan, anti-rejection meds (tacrolimus), and a few other things.  I feel weak, but continue to walk around the ward daily as instructed by physical therapy and the nurses.  In fact, I get the idea to try to do a slow half-marathon while on the ward.  I succeed in completing 13.1 miles of laps around the ward on my day of discharge.  Do I get a medal?
5)      Day nine post-transplant.  Discharged to “home-ish,” our apartment near MDA.  Kinda early.  The schedule called for up to 21 days post-transplant hospitalization. Feeling tired but otherwise not too badly.
6)      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 I’m getting.  Taking about 35 pills a day.
7)      Day 28, post-transplant.  Had a bone marrow biopsy.  Results show “negative minimal residual disease.”  That’s basically “remission.”  No leukemia cells seen.  That’s amazing after just 4 weeks post-transplant.  Let me just stop here, just for a moment.  I have to be just a wee bit cautious in interpreting these results, because I have been in “complete remission” so many times, only to see the disease come back.  But, this could, and should, be the real thing.
8)      DNA testing on the marrow shows 92% of the blood forming cells in my marrow are already donor derived.  100% of my T-cells (part of the immune system) are already donor cells.  That’s great news.
9)      Fifth week, post-transplant.  GVHD!  (graft versus host disease, where the new stem cells attack me because I look “foreign" to them). I develop a rash on the nape of my neck and behind my ears.  It rapidly spreads all over my body, neck to ankles.  We’re treating it with full body steroid creams (triamcinolone cream) three times daily and big doses of oral steroids (160mgs/day) of prednisone.  Worst itching of my life.  Feels like 1000 chigger bites; can’t stand to have anything touching my skin.
10)  Rash subsides slowly over a week or so; continuing the steroids for now.  Gained 10-12 pounds in less than a week on all the steroids, blood pressure getting high.  Had to go out and buy bigger, "relaxed fit" pants that I could fit into.  Ravenously hungry on all the steroids.  But, muscles getting weak from the prednisone.
11)  Two weeks out from GVHD rash. Starting to taper steroids now.  Hopefully I’ll lose some weight and my blood pressure will subside.
12)  And that’s where I am right now.  I’m weak, but otherwise doing very well.  We’re just watching out for further signs of GVHD.  We’ll 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.
Sorry for the very long delay.

Saturday, January 28, 2017

The Transplant; On, off and on again.

Dave’s Great Adventure
Book 7, Chapter 1, Verse 1

“Desperate times call for desperate measures”--Hippocrates

Hey, my donor has a name!  But more about that just a bit later okay?

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.  But…now we’re on!

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 I’d never before heard of, called SIBO; small intestinal bacterial overgrowth.

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.

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 “C. diff.”  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 I’d 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 is…more antibiotics!  And relapses are common.  And it’s a diagnosis made mostly by educated guessing, as there’s no reliable test for the condition.  Great!  And, get this, if nothing else works, sometimes they can restore your bowel’s bacteria balance with a “poop transplant!”  Yeah, they take someone else’s “healthy” 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.

But I digress….

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.

But then, over Christmas, I developed a cough which lingered for weeks.  I commonly tell Kathy, “It’s always some damn thing!” 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. 

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 we’d gotten there, scheduling issues ended up cancelling that appointment after we’d seen only the leukemia docs and so we left without restarting the transplant.  I was angry and disappointed at that delay.

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 it’s time to get going.  It’s a long process, which I’ll tell you about, but at present, my new cells are scheduled to flow into my veins on March 2nd.

I really wish I could tell you that I’m thrilled to have this set up and on the way.  I wish I was happy, overjoyed and filled with anticipation.  I’m not.  If I had an acute leukemia, like AML or ALL, and had been told I had just months to live, I would be thrilled to have this opportunity, especially with such a great matching donor. 

But I’m 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.   I’ve 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.  It’s a crap shoot no matter what I do.  I’m simply playing the odds, no matter which way I go. My docs, Dr. Phil Thompson and Doc Keating, recommend the transplant now.  So I’m going for the transplant while I’m 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.

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 don’t feel sick and don’t feel like I need a transplant!  But, as I’ve mentioned before, it’s exactly when you’re 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 don’t have that motivator.  The result is that I see too much of the downside rather than the upside to all this.

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.

So, we’re moving to Houston.  I’m 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.  It’s a “corporate” 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.

The process will start on February 10th or so.  I’ll 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, I’ll get a large tube inserted into my chest, which will remain there for the duration of the transplant.  It’s gonna drive me nuts, I know.  Through this triple lumen catheter (having three channels within it), as it’s called, I will get medications, fluids, the stem cells, have blood drawn for studies and more.

This will all take about a week.  Then, I’ll 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.  I’d hate for my new cells, having come all the way from Sweden, to feel rejected!

A week later I will be admitted to the transplant ward, where I will stay for about four weeks.  The first week I’ll be getting more chemotherapy, so-called “conditioning.” That’s a very benign term.  Sounds like putting something in your hair, or maybe it’s working out to get into shape, or some other pleasurable activity.  But, in this case, “conditioning” is chemotherapy, designed basically to suppress one’s immune system even more to allow the new cells to enter your body without provoking an intense rejection.   The conditioning lasts about a week.

And then the cells go in. 

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.  That’s the easy part. Then things get exciting.  But, more about the aftermath later when I have something to report.

But what of the donor; what is she up to during all my pre-transplant activities?  Well, she’s 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.  It’s 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.  I’ve 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.

The collection process is not what many folks think or fear.  Many have an image of a “bone marrow donation” 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.

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 “apheresis” 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.

And my donor’s name?  Well, of course she has one; I just don’t 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 grandparents’ days. But, more likely, in these days she has a name like Anna Larsen.

But rather than calling her “my donor” 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 “Bo,” after the central character in the movie “10.”   Bo Derek starred in that movie as the lovely woman who drove Dudley Moore to distraction with her “perfect ten” beauty.  Remember, that my donor is a perfect 10 out of 10 match for me, too!

But the slightly raunchy overtones of that movie aren’t 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, “Amazing Grace,” suggested that her name, for now, should be Grace, or even, “Amazing Grace.”  So, henceforth, I will call her Grace.  Look at my last message’s closing and it will make a lot of sense.

I want to close this already (again) lengthy message with some “fun facts” about stem cell transplants.  This is amazing stuff…really!

First, I will assume Grace’s blood type.  My blood type now is A negative.  Grace’s is A positive.  After the transplant, my blood type will become A positive.  Cool, huh?

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 Grace’s DNA, not mine.  Even cooler, huh?

Next, after the transplant takes and her immune system has taken over mine, it will be a “brand new, never been used” 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 won’t have to repeat the shots I got before going to Vietnam, like plague, yellow fever, cholera, typhus and more.)

And, I hear that I may start taking an interest in pretty purses, curtains and patent shoes!  And I’ll want my towels and wash cloths to match, for unknown reasons.  I’ll grow little boobs and start getting PMS!  Yeah, okay, that’s 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!

That’s 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 I’m feeling up to writing.  A lot is about to happen.


“…these days, in which we can bear neither our diseases nor their remedies.”—Livy (Roman historian)