Here's an update:
I'm now 70% beryl blood and 30% donor. My old blood has the bad MDS chromosome. I've been on the new targeted therapy drug about 5 weeks. The side effects are manageable (so much less hair to wash!!). The chemo is working a little. My doc says I am making a ton of new red blood cells which is important, but overall, my counts remain low and I've needed infusions every few weeks or so. I've also needed platelets for the first time. The new meds were giving me lots of pain from inflammation but I read about a vegan diet being helpful and I started
eating vegan and the pain was gone in 48 hrs and never returned. So I'm a vegan now.
I have a biopsy scheduled for 1/22 and 2 weeks after that we'll know more about the chromosomes etc. My doc is optimistic- he says there are several indicators that suggest a positive change. In the past the chemo worked well but they say the MDS mutates and can create problems. I may get a transfusion of more of my old donors cells if my numbers aren't showing improvement.
The goal is to get me into remission and get another transplant with a new donor. They have 10 potential donors. My personal hope (dream, really) is that I move into remission and the immunotherapies
they are studying come to market or they edit my DNA or something. Either way- this is a long slog.
Here's to a healthy, recovery-filled new year! (Here's a pic of me and Thomas at Lewis Ginter Garden!)