My counts are stable, no anemia, no thrombocytopenia (low platelets) and I am a “rare bird” with a diagnosis of chronic lymphocytic leukemia, also stable requiring no therapy at this time. I did have one significant physical finding and that is an enlarged spleen known as splenomegaly. I can feel it and yet it does not interfere with my appetite or activities. I say “did” because after many months of visiting numerous East Coast MPN specialists, I decided to begin a Jak2 inhibitor at a moderate dose of 10 mg twice daily. Almost immediately my spleen decreased in size and again I am fortunate to not experience any untoward side effects. I am, of course, aware of the literature that suggests that Jak2 inhibitors may predispose to an increased number of unfavorable mutational changes but my MPN specialist does not support that viewpoint.
I have also been advised that someday in this Jak2 inhibitor may lose its beneficial effect for me and at that time (barring new advancements) I will likely need to proceed with an allogeneic stem cell transplant. Father time is not in my favor. Transplants for those over 70 years old are risky at best and in 3 months I turn 65. Even now, the data suggest a 20 percent mortality in the first year, that means one ini five people die. So pulling the trigger on a transplant is a monumental decision. Oh well…
For now, I feel well and try really hard to believe that my future will work out well for me. Because really, in the final analysis, what other choice do I have?