Diagnosis: Acute Myeloid Leukemia (AML). A Journey

George saw Jackie, the bone marrow transplant guru, on Tuesday, Sept. 13. She said everything was looking good, but really emphasized the importance of eating and getting the proper amount of calories and protein to aid in his recovery. She said in the next coming weeks, the need for proper nutrition will increase because he will be getting more energy and his body will crave it. He again complained of his food aversion due to the awful taste in his mouth. He explained how he was forcing himself to eat and that not only does the food taste like crap, but he gets a full sensation and that makes it hard to eat as well. Jackie thought his was most likely due to his medication and decided to stop his Ursodiol and to reduce the dosage of his Tacrolimus.

Of course, this freaked George out because the Ursodiol was protecting his liver from developing GvHD and the Tacrolimus is his immunosuppressant/ ant-rejection drug. It seems sudden and he thought he would be on his current dose until 100 days after transplant. Jackie explained it’s no big deal, that he would be taken off the Ursodiol in 30 days anyway and that quite a few people are off it after 30 days. Okkkkkkk. Anyway, I hope it’s worth it and it helps his taste issues! Sure would make both our lives easier!

We also asked about the note Dr. Loren made about considering post-transplant gilteritinib at day +100 “given low level FLT3 at diagnosis.” She said it is indeed a cancer fighting drug, but it is a targeted therapy and would only go after the FLT3 cells and not attack all the others, like standard chemotherapy. So, that was a relief. Who wants to go through all this….this chemo, radiation, transplant, recovery….and then go through chemo again??

Seems like a good idea to increase the chances of keeping George in remission. I’m all for that! The FLT3 mutation is the whole reason for the bone marrow transplant as it is an indicator that the leukemia could not be cured by treatment alone and there’s a higher risk for relapse.

We got some good news….the valgocyclovir is doing its job! When we went to see DR. Loren, the labs showed the CMV at <35. But there must be a negative detection of the cytomegalovirus for two weeks for George to be able to go back to his regular anti-viral meds. Today, I checked his lab results from the 13th and it showed the CMV was not detected! Yay!

George’s chimerism is looking good too! Chimerism testing (engraftment analysis) is performed for patients, like George, who have received a hematopoietic stem cell transplant. The test involves identifying the genetic profiles of the recipient (George) and of the donor and then evaluating the extent of mixture in the recipient’s blood or bone marrow.

In Greek mythology, the Chimera was a creature with the head of a lion, the body of a goat and tail of a serpent. In medicine, the term chimera is used to designate an individual whose body contains cell populations derived from different individuals of the same or a different species occurring spontaneously or produced artificially. The phenomenon of co-existence of cells from two different organisms in one body is called chimerism. In the case of a stem cell transplant patient, the existence of donor cells and recipient cells.

So, Chimerism: The state in which donor cells have durably engrafted in the recipient. Full donor chimerism implies that 100% of bone marrow and blood cells are of donor origin, while mixed or partial chimerism means that recipient cells are also present.

I got George a couple of shirts from REI that are SPF50, so he can walk outside and not worry about getting too much sun. The hat and sunscreen help as well. He is very sensitive to the sun because of his meds and a sunburn could trigger GVHD, which we do NOT want! So – he walks on the weekend, and during the week has started peddling on the little seated exercise peddler I got him.

Finally, I went and got my COVID-19 bivalent booster vaccine today. I am so thankful for it! I have been waiting for it to become available! I’m glad I could do this to keep both George and myself safe. We are now ready for the fall!

Until next time…we just keep keeping on! George is scheduled for a bone marrow biopsy next month close to day +100.