← Return to Primary Myelofibrosis with JAK2: Anyone have Ojjaara (momelotinib)?

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Profile picture for mikecaldwell @mikecaldwell

@davi0937 After converting to Myelofibrosis from ET, I was having to have frequent blood transfusions (about 25 in total) to keep my hemoglobin above a 7.0 baseline. After recommendation to enter a clinical trial by doctors at MD Anderson, I entered that trial at Vanderbilt Cancer Center. I did not respond to the study drug and was removed from the trial. My hem/onc at home then put me on pacritinib, but after 6-7 weeks, it was not helping the anemia. He then put me on momelotinib, and I responded almost immediately. It kept my hemoglobin above 7.0 for long periods of time only needing a couple of blood transfusions over the 5 months I took it before having an allo SCT due to advancing fibrosis and my age. I never had any side effects while on the momelotinib. For what it’s worth, even though hemoglobin levels in the 7-8s is considered severe anemia, I was able to keep a very active lifestyle within those ranges and consider momelotinib a game changer for me, especially with iron overload risk from frequent transfusions.

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Replies to "@davi0937 After converting to Myelofibrosis from ET, I was having to have frequent blood transfusions (about..."

Thank you @mikecaldwell

My hemoglobin is 8 and I’m just on iron. I’m also very active- swim, run, CorePower sculpt and bike lift. I’m trying to stay in shape for a BMT if they decide it’s time. Meanwhile the clinical trial MD wants me to join phase 2 of a trial that addresses low hemoglobin. I’m nervous about a clinical trial not knowing what the side affects are. It does sound like momelotinib doesn’t have the side affects it lists in hearing from others here. I was diagnosed this last June. It’s been a shock considering I was planning on retiring in April 2026 and hiking the El Camino with my husband. We would still like to go but uncertain on where I will be healthwise. Thank you so much for responding!