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Primary Myelofibrosis with JAK2: Anyone have Ojjaara (momelotinib)?
I was wondering if anyone can share their experience with Ojjaara treatment. I started having anemia, high platelets, and high white count two years ago. They finally did a bone marrow because I had a JAK2 mutation. The diagnosis came back as PM low risk. I felt fine.
Now my spleen is enlarged, I’m annemic again, and I’m having non intentional weight loss. To me I believe the weight loss is muscle mass.
I have been referred to a Mayo Clinic specialist, who has ordered Ojjaara to be started next week followed by weekly blood tests. He’s also had CT scans done in advance of my spleen, renal system, and liver. I feel I’m in good hands with his thoroughness.
Let me know what side affects you experienced. Thank you.
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Thank you @snakebite81 !
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2 ReactionsFor me Ojjaara was a game changer. I went from hgb 7- to 12-13, and it has held for over a year. My major spleen issue went away. I've expanded on my case in several post so I won't go through all of that again. But the bottom line is that I'm 78 yrs, been fighting MF for MANY years. I was down to surviving on Transfusions and Ojjaara turned all of that around. I now have a more than normal life for a 78 yr old. I walk 2 mi every morning, attend a full exercise class three time a week, travel in my RV, and have resumed my competition action events at the World Games and other events around the Western US. My side effects are well worth it, and so far very manageable. IMO, Ojjaara is well worth trying. It has completely changed my life. Don't know how long it will last, but for now I'm enjoying life to the fullest.
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3 Reactions@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.
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1 ReactionThank 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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2 Reactions@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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1 ReactionI volunteered for a clinical trail but was worried that I wouldn’t get the real medication. I’m only taking a half dose of Ojjarra and stayed there because we saw an improvement.
Whatever you choose to do, you can discontinue it. Good luck. I’m still feeling healthy, like nothing is wrong
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1 ReactionThank you @cindyem . I’m really grateful for your reply. You are correct that ojjarra aka momelotinib is not in a clinical trial. I will be given the choice of a clinical trial or momelotinib and wonder which is a better road.
I’ve taken ojjarra for 10 months and have not had side effects at all. It’s taken away some of my spleen pain and lowered my high platelets. I don’t think it is still in clinical trials still. I could be wrong. I’ll ask Dr. Tefarri Wednesday at Mayo Clinic.
You can always discontinue it if you have negative side effects.
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1 ReactionHello - I am contemplating going on momelotinib or a clinical trial that would address my anemia from Myelofibrosis. I’m concerned about clinical trials because the drug is not completely tested. I have also researched momelotinib side affects and am worried about those. Advice? Thank you!
It's 4 more months on Ojjaara and things are still looking good!