Hi Amy,
I am watch and wait, get blood work every three months, called pre-MDS on bone marrow biopsy. However, I have 4 mutations that seem to matter: ASKL1, SRSF2, RUNX1 and TET2. My platelets, WBC, RBC and hemoglobin are all going down…WBC around 1.6, hemoglobin 10.8, RBC I forget and platelets 63,000. My MD tells me that when my platelets get to 50,000 I will have to start treatment and he said it would be either Dacogen or Vicaza, but most likely Dacogen. All I get for symptoms are bruises, tired/weak feeling and back pain. I guess I’m only telling you this because I imagine the Dacogen must be effective with ASXL1. My doctor did say that he has to tell me that it doesn’t work for everyone but he didn’t say why. Hmmmm. I hope your husband does well. It’s kind of like a cloud that follows you around and you don’t know what is going to happen next.
Donna