Thursday, July 23, 2020

Day +79

Nothing earth shatteringly new.

My counts continue to be low (dropping or maintaining), although I have not needed transfusions every two days like last week. Friday I needed both blood and platelets; Sunday I needed nothing; Tuesday I could have gotten blood (HGB: 7.4) but chose not to. Today (Thursday) I was pleasantly surprised that most of my counts are creeping up ever so slowly (HGB: 7.6, WBC 0.4, PLT 19K) even after 6 days without transfusions. The blasts in my blood, however, are up to 8%.

In addition to the continued low counts, and increasing blasts, I also got the info from Friday's bone marrow biopsy. Not surprisingly, it showed 40% cellularity (you want none) and 5% blasts (you also want none, but under 5% can still be normal). The leukemia is most definitely back.

The current plan is for me to continue on Venetoclax (oral chemo, started four days before the biopsy) and to get my next round of Decitabine next week (infusion chemo M-F every day). Because I hadn't been on the Venetoclax a full cycle, they aren't ready to move on from this regimen, but at the same time they're not yet convinced that it's working. Dr. Hamadani (who was *amazing* this appointment, FTR) said they have three clinical trials in mind. His third choice he glossed over and didn't even tell me the exact med. His second choice is an antibody aimed at CD47, and his first choice is a combination of chemo and a radiotherapy-adapted immunotherapy (lintuzimab). I think that this is the trial he's talking about, as he said they're expanding it and need to make sure I'm CD33+ to qualify. They will watch my counts and if they seem to be rebounding and the blasts aren't increasing, they'll stick with Decitabine and Venetoclax, but they are also checking my eligibility for the clinical trials.

Although I felt truly awful last week with my low counts, I have not felt as bad this week (at least not physically--mentally I'm all over the place).

I continue to feel very lucky that I have not (yet) had signs of GVHD or other issues that would be truly awful on top of the leukemia crap. Nothing much to do other than keep plowing forward. Also, I feel like I gave the leukemia a chance to save face and leave gracefully. He's got a few more weeks, but so far he doesn't seem to have accepted what a generous offer I've made. After all, if he really wins this fight, he dies with me. But if he takes credit for being ultimately badass, I will tell his story for as long as I live. (Can you tell we finally watched Hamilton this week?) If he's really thinking about his legacy, I think he should just give it up.

Fingers crossed for counts continuing to rebound at Saturday's labs, and either remission from this, or acceptance into this promising clinical trial.

3 comments:

  1. My money is always going to be on you vs. Leuk. He maybe strong, but not as strong as you, and you have hundreds of people pulling for you. Leuk, none!

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  2. I’m so sorry to hear this news! I am praying for you.

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  3. Wish we could ALL give that dude a great big ol shove right out of your way, and link arms to stop him from even thinking about winning or coming back.

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