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.
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” ( www.bethematch.org ) you can be painlessly screened, with a swab of your cheek, to be a potential stem cell donor and have the incredible opportunity to save 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