Diagnosis: Acute Myeloid Leukemia (AML). A Journey

George’s doctor called this morning to discuss the drop in his chimerism numbers. She said she was very surprised to see it as well.

She said the drop poses two concerns:

1. The graft is sort of petering out. We asked if that means the engraftment is failing and she said “it is struggling.” There are a couple of steps to take for George right now. First, he will stop taking his tacrolimus all together. She said that there’s a small chance that getting off the immunosupressants will help his numbers go up. She also said this is more common with the lower intensity conditioning treatment that the patient undergoes before the transplant, but George had the high intensity with strong chemo and radiation, so another reason why it’s so surprising.
2. While George is in remission right now, a decline in donor cells can indicate a relapse or presence of leukemia. She wanted George to undergo another bone marrow biopsy sooner rather than later, so we are working on that. Right now, it looks like December 6. But we will see. For now, she bumped his Xospata back up to 3 pills a day in case there IS leukemia present, the mutation will be targeted with that therapy.

Dr. Loren has already reached out to George’s bone marrow donor to ask for another collection of marrow cells, which she said takes at least four weeks to organize. And she would really like to do the bone marrow biopsy before doing the DLI ( Donor Leukocyte Infusion), which is the process of injecting more donor marrow into George’s. This time, it would simply be an outpatient process – no chemo, no hospitalization. She wants the biopsy done before the DLI to make sure there is no presence of leukemia. Because that would another road to take all together.

We asked what would make the counts drop like they did. Dr. Loren said she doesn’t know for sure. But, it could either be that the donor marrow is not strong enough or that George’s immune system is too strong.

Dr. Loren will take blood and recheck his chimerism (engraftment) levels when he goes in for his appointment next Wednesday, November 23. Wouldn’t it be great if the lab just made an error? Dr. Loren said the odds of that are EXTREMELY low.

For now, we just keep chugging along with orders to keep a positive attitude, and for George to get plenty of sleep and eat well.