Update: Allo transplant recipient, David from Florida (Part Two)
So we’ve heard from both of our most recent Patient Snapshot allogeneic (donor) stem cell transplant recipients. As multiple myeloma goes, both are young, with kids and lovely, caring wives. Tom from Ohio has had a more difficult time than expected from day one. Things have gone a lot easier for David from Tampa. Complications and side effects aside, how are our two dear friends doing on the myeloma front.
I’ll be sharing details about Tom’s situation as things settle down and he’s able to return home from the hospital. I do have some good news: Tom was transferred from ICU to the transplant center yesterday.
But every account I’ve seen sounds like Tom’s doctors are pleased by his progress; his multiple myeloma is barely measurable, stable and under control.
What about David? Here’s Part Two of his Patient Snapshot update:
On the Multiple Myeloma front, the news has been a mixed bag. It has been two months now and my M Spike still remains at 0.3. This is where I was when I stopped Pomalidomide/Dex at the end of October 2014. It is frustrating to think that two transplants (an auto, followed by an allo) have caused no impact on my M Spike.
The good news is that the cancer seems to be smoldering at this level without any chemo; other than a boatload of Melphalan.
The team at Moffitt had me run through a bone marrow biopsy and a PET scan last month, and both came back with encouraging news: no detectible level on the biopsy, and no new activity or lesions on the PET. What is also encouraging is the promise of Graft Versus Tumor Effect (the holy grail of an allo transplant) is still suppressed with the Tacrolimus. Who knows what will happen when my new stem cells are unleashed and set loose on my Myeloma. There is a positive visualization I will need to remind myself of.
I did have one surprise. I was attending a general conference on Multiple Myeloma when I was reminded that many people after transplant go on Revlimid, or Pomalyst, maintenance if they don’t reach full remission (or sometimes even if they do). What I didn’t know before this conference, is these medications can trigger very aggressive GVHD. So while the doctors are not recommending any maintenance now, I am not sure what they will recommend if my smoldering myeloma becomes more of a rolling boil.
In hindsight, I have no regrets. This blog keeps reminding me of all of those (many of you) who have had a much rougher journey than me. I left hindsight behind when I finally decided on the allo. And the side effects have been generally mild and manageable.
Good luck to all of my fellow warriors!
Thanks again for the update, David! I understand David’s disappointment; my auto transplant at Moffitt in 2011 didn’t really work, either.
But I wouldn’t call it a failure. I did achieve measurable re-sensitization; I call it “hitting the reset button.” In other words, myeloma drugs that had stopped working before the transplant worked again after. We don’t know if that’s the case for David. Also, keep in mind its still early. As David wrote, “What is also encouraging is the promise of Graft Versus Tumor Effect (the holy grail of an allo transplant) is still suppressed with the Tacrolimus. Who knows what will happen when my new stem cells are unleashed and set loose on my Myeloma.”
Regardless, after talking with David at length on the phone yesterday, I’m convinced the man means what he says: that he has no regrets. Full speed ahead!
The million dollar question? Is the fact that Tom has experienced more unfortunate complications and GVHD than David related to what seems to be a better myeloma related outcome?
And if that’s the case, does this raise a red flag for me as I consider joining Dr. Koehne’s clinical trial in New York? If you recall, he is adamant that GVHD is not the key component in determining whether an allo transplant is effective against multiple myeloma or not.
Anecdotal evidence can be helpful. But our comparison study of two allogeneic stem cell transplant patients is two small to clearly establish a cause and effect here.
Yet our patient comparison does establish one unequivocal fact: it is impossible to predict how well any patient is going to respond to an allo SCT.
It’s been a while, so tomorrow I’ll catch everyone up on how I’m doing. As David would say, “the news is a mixed bag.”
Feel good and keep smiling! Pat