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)

Wednesday, November 2, 2016

The Dilemma

Dave’s Great Adventure
Book 6, Chapter 1, Verse 5

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 Richter’s Transformation. (Dave Eckberg)


Man, the venetoclax is working great. Even spectacularly great! I’ve now been on it for about 22 weeks and everything is going the right direction. It’s 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.

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! That’s not a misprint. From 93% to less than one percent leukemia cells in just twelve weeks. That’s just astonishing and it’s more than I could ever have hoped for. I’m doing great!

And that’s 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, it’s when you’re doing wonderfully well that they rain on your parade and say, “Okay, it’s time for the transplant.” Of course, they pick this time when you have a reduced disease burden and are feeling well because that’s when a transplant is most likely to “take” and possibly cure your disease.

I’ve 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, I’m about there. And here’s why.

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 here’s what it looks like.

The results, in very general terms, for a “matched unrelated donor” 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 one’s possible outcomes after transplant. I’ll get back to this stuff in a moment.

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 don’t 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 doesn’t 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 time…or I might not relapse for a couple of years!

And if/when I relapse, current data says I’ll have a 50% chance of coming down with Richter’s Transformation, which I mentioned in my last story. Richter’s is very bad news. For someone like me, with a history of several failed courses of chemotherapy and the 17p deletion, Richter’s for me pretty much means “game over.” Sometimes one can attempt to treat it with a stem cell transplant, but then I’m back to that same decision again, but in far worse shape. Plus, the chemotherapy I’d need before that transplant likely wouldn’t work for me since my disease has worked its way around chemotherapy several times in the past.

But what if I relapse and don’t come down with Richter’s? 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.

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 it’s no more likely to cure me or give me a prolonged remission than any other combination I’ve been on. And when I relapse on it, then what? Once again, I’m back to the same question of, what now? And a transplant would seem to be my best option once again, but I’d be older and probably sicker than I am right now.

“When you come to a fork in the road, take it.”—Yogi Berra

I stalked Dr. Keating at our last visit to M. D. Anderson. I didn’t have an appointment with him and didn’t 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. He’s now not permitted to be involved in my care, at least directly, as he didn’t take some mandatory “class” 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 “Ramping Up The Venetoclax,” which I wrote recently, for more details about this). I’m sure it was a lawyer’s “cover your ass” kinda thing for the manufacturer, as they didn’t want to be involved in a lot of lawsuits which would inevitably follow the death of a patient taking the drug.

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. He’s been my “security blanket” 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.

I told him why I was there and mentioned that I was disappointed that I hadn’t 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, “I’m on the board of advisors for AbbVie…and I can’t give…their… (insert a pejorative adjective here if you want to; he didn’t, but I imagined it)…drug?” he asked rhetorically.

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) “Just do it.” So, I am.

And it boils down to this; if I stay on the venetoclax I have a 50% chance of Richter’s 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.

Case closed.

I’ve 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 “conditioning” 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.

I’ll have much more to tell you about the transplant data later, but basically the new regimen has reduced the immediate death rate to (“only”) about 10% or so, with reduced “graft versus host disease.” But that’s a whole new topic, for another story.

One last thing; my potential donor is an altruistic 41 year old Swedish woman with A+ blood type. That’s 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 “Be The Match” ( ) 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 someone’s life. Donating stem cells is generally very similar to giving blood, the stem cells being collected with IVs in each arm, so don’t be fearful of a painful experience, okay? I know you’ve heard stories….

And that’s all at this point. We’ll be going back to Houston next week for more preliminary testing. As I’ve drolly said to Kathy many times during the course of this disease, “This could get pretty exciting.” But truly, it’s not exciting. It’s scary and I’m really scared.


“Through many dangers, toils and snares,
I have already come;
‘Tis grace hath brought me safe thus far,
And grace will lead me home.”
--“Amazing Grace” by John Newton

Saturday, September 17, 2016

Perhaps a Transplant?

Book 6, Chapter 1, Verse 4
September 17, 2016

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. It’s perhaps a mile or so down the road. It’s 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

No, no, no! Hell no! That’s not the way it was. That’s the way it should have been, that’s 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 we’ve been dealing with for almost 15 years now. We had to be in Houston on our anniversary, but not for 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, Father’s 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!

And Kathy was sick on our anniversary and couldn’t leave the hotel room anyway. Happy anniversary, indeed.

And so it was that on our “special day,” 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.

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 can’t 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 “down.” Three staff clustered around the terminal trying to make it responsive. No luck. We were told to take a seat, told that we’d be called up for our turn at the “vitals station” soon.

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 “vitals” taken. That’s 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.

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 dentist’s 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.

Bone marrow biopsies have a horrible reputation. Everyone “knows” that they hurt more than anything--absolutely anything--else. But, I can tell you that at M. D. Anderson, they aren’t 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 aren’t all that skilled at them. The folks doing the biopsies in Houston aren’t docs, but they do up to 20 a day. And they are really, really good at what they do. I still don’t like having them done, but they simply don’t 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.

By now it was about 11AM. My next appointment wasn’t 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.

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 I’d 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 hadn’t 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 wouldn’t 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.

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 they’ve 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.

We talked about my options. He pushed harder on a transplant, wanting it seemingly sooner rather than later. He said he’d 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 I’ll be a high risk patient, for many reasons; my age (I’ll 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.

And here’s why:

The early data on folks like me (and now I’m 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. That’s up from the 60% which was reported just last December. But the average “progression free survival,” 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 we’re taking the stuff. We are the folks whose survival is being measured to create these numbers.

And, about half of us who relapse on venetoclax will do so with a Richter’s Transformation. That’s a big deal. Richter’s is bad, very bad. It’s a very aggressive lymphoma. Another Dave with CLL, who had a very well-written blog called CLL Diary ( developed Richter’s. He said comparing Richter’s to CLL was like comparing Godzilla to Bambi. That was one of his last blog entries before he died.

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 you’re in a deep remission. Yeah, just when you’re doing wonderfully well and feeling great, they want you to risk your life on a transplant. Most of us CLL patients will need “matched unrelated donor” stem cells (inelegantly called “MUD” 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 it’s as much as 50%). That number seems not to have budged in 15 years, as that’s what I was told back in 2002 when I first was diagnosed and we were testing my siblings, who didn’t have the common decency to match me! (Insert smiley face emoji here!)

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 “cured,” but they are the exception and not the rule.

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 didn’t want it. I didn’t say it exactly this way, but I kinda told them, “Are you crazy! I’m doing GREAT on the ibrutinib!” But, as Doc Thompson said to me recently, “Yeah, you were doing great until you weren’t.”

And, as great a drug as venetoclax is, it doesn’t 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 you’re feeling and doing great on the new wonder drug, the ibrutinib. But, when you’re in remission, your odds of a successful transplant are the highest. I didn’t seriously consider a transplant when I was on ibrutinib because, well…I thought I’d never relapse. But I did. If I’d had a transplant four years ago I would have been younger and, in theory, at a lower risk.

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. “The only true wisdom is knowing you know nothing,” said Socrates. I used to think I understood this disease but the more I learn about it, the more I realize I really don’t know very much at all.

We’re 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 we’re 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. I’ll be seeing him and his team on Wednesday. But, the nurse who called us let us know some interesting information.

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.

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. I’ll see what Doc Thompson has to say and hear what he found out at the “grand rounds” 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.

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.

A couple more short topics before I close. If you’ve read my stories for a while you know that I have been seeing Dr. Keating for a decade or more. Yet I haven’t mentioned his name at all in connection with my venetoclax trial. And I can’t be sure, but from the asides and looks on folks’ faces when I ask the question about why he isn’t in the study, it sounds like he didn’t take the “class” 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 “I don’t need to take your effin’ class to give this drug. I’ve been treating CLL for decades and am a world renowned clinician and teacher.” Understand that these are my imagined words and in no way constitute a quote. But it’s interesting that one of the most famous CLL docs at MDA is not allowed to have his fingerprints on the study.

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 mentioned…just multiply by 1,000. If anyone really cares.


“The future ain’t what it used to be.”—Yogi Berra

Saturday, September 10, 2016

Supporting Leukemia Research

Book 6, Chapter 1, Verse 3

I want to take a moment from telling my little stories to touch on something that’s very dear to my heart and important to the lives of many people across the world. That’s the topic above; Supporting Leukemia Research.

In my “career” with this disease, which is now approaching fifteen years, I have intersected with leukemia research many times and in many forms. I’ve been a beneficiary of its results, I’ve been a participant in the studies of new drugs and new combinations of drugs and I’ve 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.

When I first fell ill, in the spring of 2002, I was extremely disappointed to find that there really wasn’t 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 didn’t do anything about the disease. It always came back!

But that very year, my doc in Denver where I lived at the time, read an article about Dr. Keating’s 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 “cured.” This new “FCR” 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.

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 you’ve relapsed from CLL a time or two, there are no “best” 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 “foreign” 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 don’t know details at all, but suddenly that study was off the table. It rather sounded like there was an “adverse event,” as they say in med-speak, with another patient who had enrolled earlier than I had. But, that’s what happens sometimes in these trials. You don’t know before you start exactly how they’re going to turn out.

So, I instead signed up for another study which was open at the time, one which combined the previously mentioned “FCR” 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 “PCR” negative, which meant that they could find no evidence of disease even at the molecular level. I wondered if I might be cured…but I knew better. This stuff just about always comes back.

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 “Mission Moments,” 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 didn’t even know me.

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.

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.

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 didn’t help me at all.

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 didn’t 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 it’s called now, was also developed, in part, with support from the Leukemia and Lymphoma Society.

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.

But, during the time I was actively doing TNT events and “running” 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.

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 “best” or any single correct option for treating this disease after you’ve 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, she’s 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.

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. He’s 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, it’s hot in El Paso. But he’s dedicated. Additionally, he has the burden of training by himself and not with his team, which is 600 miles to the east in Dallas.

I haven’t asked my friends and family for any donations for several years now, but I’d ask that if you can, please donate something to the Leukemia and Lymphoma Society through our kids’ web pages, below. Hey, and if you look at Jen’s page (JMassaviol, below), you’ll also get to see a “cute” 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.

I’m 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 I’m happy to tell you that I have had absolutely none. That’s important, because I can easily become nauseated. As I’ve told my family many times, I hate to vomit. It makes me sick!

Yesterday I received the results of my recent bone marrow biopsy, and the smear is almost normal. That’s hard to believe after only a little more than three months on venetoclax, but it is known for clearing disease out of the marrow. It’s a great drug. But still…I’m 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 they’re already looking for a donor for me. I guess Doc Thompson has been in touch with them. I’m supposed to see them in a few weeks so we can talk things over. We’ll see what they have to offer. I’ll get another update out real soon to explain why a transplant may be in my best interests right now, despite the excellent results I’m having with the venetoclax.

Next (really, this time)—an update on our last visit to M. D. Anderson and the logic of pursuing a stem cell transplant despite my doing great on venetoclax.


“They always say that time changes things, but you actually have to change them for yourself.”—Andy 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!]