This past week entails taking in good news, starting the next phase of treatment, and waiting for the pieces of the transplant process to come together.
The news on the medical front is encouraging: I am in clinical remission.
That is a wonderful thing to be able to say, but remission in leukemia is more nuanced than I realized. One part of the definition is having fewer than 5% blasts in the bone marrow. It does not necessarily mean that every last leukemia cell is gone.
That’s where MRD comes in. MRD stands for measurable residual disease. More sensitive tests look for tiny amounts of leukemia that routine testing might miss. Someone can be in remission and still be MRD positive. MRD negative means those tests did not detect residual leukemia within their limits, not that they can guarantee there isn’t a single cell left.
My doctor described my results as showing a deep remission. Most of my testing did not detect leukemia, which is incredibly encouraging. I asked if he would classify me as being MRD negative, but he said he is cautious about using that term, especially given my high-risk TP53 mutation. However all tests show that there isn’t any leukemia, so that is encouraging.
So this is the window we have been working toward: getting to a stem cell transplant while the leukemia is under good control. Remission is a major milestone, but with my type of leukemia, the risk of it returning, and returning quickly, is still high. My team recommends moving forward with transplant now.
The transplant itself takes a lot of coordination. There is insurance authorization, donor matching and medical clearance, preliminary testing for me, and scheduling the stem cell collection. Several of those pieces can move forward at the same time, but they still take time.
In the meantime, on Friday I started an out-patient protocol of decitabine and venetoclax to help keep the leukemia suppressed while the transplant arrangements move forward. Every day, I go to the hospital for an hour-long decitabine infusion, then take the oral venetoclax at home.
My doctor chose this approach because of how encouraging my marrow results looked. It is less intensive than another round of the induction chemotherapy I had before, and I can receive it as an outpatient. It can still lower my blood counts but not as drastically. So, for now, my days involve trips to the hospital for infusions and bloodwork, time at the apartment, and waiting for the next pieces to fall into place.
But today we found out the most spectacular news! My sister is a match for me! We don’t know for sure that my transplant doctor will use her versus a non-related donor, we should know that soon. But there are a lot benefits of her being the donor. First and foremost is just how meaningful it would be, since as most of you know my sister is my best friend and we have been so close for our entire lives so it would seem fateful for her to be my literal lifesaver. But also this could speed things along and that matters a lot with the mutation that I have. Additionally having her here in Houston with me right now makes so many of the logistics easier.
This week brought real progress and a blessing for my sister being my match, and I am holding on to that.