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

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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!

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Replies to "Thank you @mikecaldwell My hemoglobin is 8 and I’m just on iron. I’m also very active-..."

@davi0937 Being in the best physical shape you can before a SCT is very important. My transplant doctors told me that I was an excellent candidate at 69 with advanced fibrosis because of the very good physical shape I was in and that it is contributing to my good recovery, outside of some GVHD symptoms (dry eyes and elevated liver enzymes primarily) that are manageable. I feel most fortunate that I was able stay very active during a long period of severe anemia, as many are debilitated by it.

My transplant was last October. In May, I started back doing our yard work and in June I started back playing golf. My stamina is mostly back to normal, except when I play golf on days it is really hot. I lost about 20 pounds after the transplant, which seems to be mostly loss of muscle mass and I am having trouble regaining that even though my appetite is good. I have started doing dumbbell weight training at home, but look forward to getting back in our club’s fitness center for my regular workout when my hem/onc says it’s okay.

So, keep going with your exercise routine as long as you can before you have to have a transplant. Keep a positive attitude, and I wish you much success as you move forward.