Phase 1b Clinical Trial

When I was first diagnosed with AML, I was told (repeatedly) that for many reasons my particular type of AML had a lot of "unfavorable" characteristics. That meant that it would be less likely that I would achieve remission, and if I did achieve remission, there is a greater chance that I would fall out of remission. Finally, even if I did achieve remission and received a transplant, there was a greater chance that it would not be curative. I've known this all along, but I have to admit that I was feeling pretty good about things after two positive bone marrow biopsies. My February results showed a 0.1% population of marrow, and while there was SOME marrow, it was still considered minimal residual disease (MRD) and I was considered in remission and able to proceed to transplant.

Unfortunately, today when I got my results from my March bone marrow biopsy, they were not good. I'm back up to 5-10% marrow population, out of remission, and not able to proceed to transplant at this point.

I was presented with two possible clinical trials.

1. CLAG-M plus lintuzimab which would involve a hospital stay of 4 weeks (without any visitors). It would be similar in intensity to the 7+3 that I started with at St. Luke's (ie: very harsh). If successful, I would then move on to transplant.
2. PAVE, which is Vidaza (on now) + Venetoclax (on now) + Pevonedistat. This would continue on an outpatient basis, with the same chemos I'm on, plus the Pevonedistat, which may have success against the leukemic cells that have not been killed off by the Vidaza + Venetoclax. If successful, I would then move on to transplant.

I have decided to do the second option, both because it is less invasive, and because if it does not work, I can always go back to the first option.

I am very disheartened. Dr. Atallah called it "disappointing news," but he's not ready to write me off yet. In discussions with him, I've found two possible good things to come out of this.

First, if I'd gone ahead with the transplant, it would not have been successful. We know this because it takes 2-3 months after a transplant for the new bone marrow to take over. Given the trajectory of my marrow (going from 0.1% to 5-10% in a month), it would not have been a successful transplant if we had gone ahead. This at least gives us a better chance of a successful transplant (if I get that far). Secondly, I have been pretty concerned about COVID-19 and what that would mean for my disease, treatment, and transplant. Having to step back means that my transplant will at the very least be pushed back a month. That gives an extra month for the world's brilliant scientists to come up with possible treatments, tests, and work toward a vaccine. It also gives an extra month to step up PPE production and to flatten the curve, so that my time in the hospital will hopefully be less risky.

They're not wonderful silver linings, and I would be lying if I didn't say that I was pretty crushed by this news. But there is still hope. And I will continue to move forward one day at a time.