I was diagnosed with secondary ET myelofibrosis a few years ago after living with ET for around 17 years. I had an allo-SCT last October and I am doing well. During my pre-SCT with MF, my main problem was anemia due to low hemoglobin levels, which required many blood transfusions to keep the counts above 7.0. I do not recall any racing or stronger heartbeats.

You asked an earlier question about timing for the SCT. For me, here is how that went. After clinical trial to no avail, I finally was prescribed momelotinib, which successfully raised my hemoglobin levels above 7.0 greatly reducing my need for transfusions. My doctors monitored my MF grade with BMBs and once I reached grade MF-3, I was told it was time to begin the SCT or I risked converting to AML. I was 69 at the time. My transplant clinic had already begun the unrelated donor search and had identified best candidates. So, that saved some time. By the time I made the “go” decision, I had the transplant about 3 months later.
So, that is how timing the transplant worked for me.

Hi @davi0937,

I am not of any help as I really do not know what “type” of myelofibrosis I might have. I do not have anemia or feeling of racing heart. I do not have any symptoms. I do have high platelets and my bone marrow biopsy I asked to have showed unusual megakyocytes and fibrosis 1-2 of 3. I have CALR1 on NGS. I do not feel my spleen and do not have enlarged spleen on pelvic CT scan done June2025.