Change of plans: CAR-t cell treatment out, onwards through the Stem Cell Transplant process

Life rarely goes as planned, and treatment is no exception. The plan was to administer some chemo to knock the leukemia back and then go on the car-t trial. However, the little amount I had put me in remission and now I’m off the car-t trial and prepping for stem cell transplant. The plan was to knock it back just a little (my bone marrow while I was in Swedish was reported at 30%--nothing to sneeze at), so Dr. Shustov ordered ¼ of the normal dose of Cytarabine, and removed another chemo from the typical induction dose, methotrexate, entirely. The “whiff” of cytarabine (Dr. Shustov’s word) apparently really connected with my leukemia cells and killed enough of them that I am in remission at the moment according to flow cytometry. Our hypothesis was that the leukemia this go around happened to be highly sensitive to cytarabine. Dr. Shustov was quite surprised that I was put into remission by such a weak dose. This is, of course, good news. However, it was not the plan, and when I first heard the news I was a little upset since it veered from the plan and also since I had such high (probably unrealistic) expectations for the medical powers of the CAR-t therapy.  Ultimately, I need to be in remission to receive a stem cell transplant (SCT), and I’m there now which is where I need to be. Had the cytarabine knocked out some of the leukemia, but not all the leukemia, going through the CAR-t trial would have probably put me in remission as well, but there is no guarantee. If this was the case, then we’d be stressing real hard. Plus, CAR-t therapy has the risk of a cytokine storm, which can get dangerous. The advantage to the CAR-t trial though is the potential for more CNS protection, since t-cells can cross over the blood-brain barrier (although researchers are still figuring out how much the modified t-cells do this). The consequence is that without the CAR-t therapy, I need more aggressive conditioning for the SCT.  Traditionally, spinal radiation is the suggested treatment for folks in my situation. Basically, I’m trading CAR-t for spinal radiation. Which doesn’t sound to me like a good trade to me—at least on the side-effect front, I have no idea what kind of trade it is on the treatment front though. And this is exactly what makes it difficult to make these treatment decisions: lots of unknowns, individual responses, and lack of relevant data.

Now that CAR-T trial is out, the next focus is the Stem Cell Transplant.  Before the SCT I have conditioning, which is a high dose of radiation and/or chemo touched on above with two main goals: 1. Weaken my immune system to lessen the chance that it’ll reject the implanted stem cells (called graft vs host disease—a common and dangerous side-effect of SCT) 2. kill any remaining disease. Still unknown at this point is when this will go down, the team says that it’s moving along and that they have already started searching the massive online registry, now around 22.5 million people, for a match. I still haven’t met with anyone from the transplant team yet, but my guess is that this will pick up in the next two weeks. I’m using this time right now to bulk-up and live-it up. The conditioning and the transplant will take a major toll on the body, so the better health and spirits that I start with the better. Plus there will be strict travel recommendations following transplant, so Dr. Shustov suggested getting out of Seattle a few times in this interim period, which we are doing this weekend by going up to Anacortes to celebrate our 1-year wedding anniversary. 

Alpen showing off his new tongue skills at the farmer's market on Wednesday. 

Pictures from the anniversary weekend