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

Good morning, I see old posts (2025) on MF and wondering why there has been nothing since? Perhaps there are more that I am missing? I recently was diagnosed with MF - originally diagnosed with ET 5 yrs ago. Because I am now nearly 85 I have chosen not to go on chemo. I am generally feeling well, some fatigue, bruise easily, but no other symptoms associated with MF yet. I have been lucky. Wondering if there are others out there, maybe around my age, who have MF, and either have chosen a drug, or have decided not to. I am having a difficult time explaining to a couple of my nurse friends why I don’t want to take chemo at my age.

Hi @pumpkin1
Some posts can get dated but are still relevant. They can be revitalized with someone adding a reply, just as you just did! ☺️
But that doesn’t mean there aren’t other discussions on MF (myelofibrosis.
People often start new discussions which then draws members in and that becomes the hot ticket for a while. There is a way to find all of these by doing a search for the topic.

So I did a quick search this morning by typing MF in the upper search bar. Here are those results!
>Search for MF: https://connect.mayoclinic.org/search/

And the same search using Myelofibrosis as the key word:
https://connect.mayoclinic.org/search/
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Deciding whether or not to treat your MF is a very personal decision. So I’m really sorry that you’re having such a difficult time being able to talk with your friends about your decision to forego chemotherapy at this point. At 85, it’s a very valid consideration to maintain a positive quality of life that you have now vs taking medication that may impact how you feel if it doesn’t add a big benefit. Risk vs reward would be a good discussion to have with your doctor. Such as what medication they recommend and how effective it might be to slow progression of myelofibrosis.

There are, however, medications such as Besremi, Jakafi and others that are not chemotherapy but inhibitors for the mutation that can cause MF. They can be very well tolerated by patients. Just tossing that out for you. Those drugs can help alleviate some of the uncomfortable symptoms associated with MF progression.

As MF progresses, the bone marrow develops deep scarring and fibrous tissue. This impacts the marrow so that it can’t produce healthy blood cells. So eventually you may need to treat symptoms with blood or platelet transfusions as those levels decrease in your blood stream. Your doctor will note that on blood tests.

How often do you have bloodwork done?

Good morning, I see old posts (2025) on MF and wondering why there has been nothing since? Perhaps there are more that I am missing? I recently was diagnosed with MF - originally diagnosed with ET 5 yrs ago. Because I am now nearly 85 I have chosen not to go on chemo. I am generally feeling well, some fatigue, bruise easily, but no other symptoms associated with MF yet. I have been lucky. Wondering if there are others out there, maybe around my age, who have MF, and either have chosen a drug, or have decided not to. I am having a difficult time explaining to a couple of my nurse friends why I don’t want to take chemo at my age.

Hi, Lori, just to clarify, I have not even had a bone marrow biopsy. Perhaps the only reason I would have one is to give me a baseline. Have you had one? I am also curious as to why you had CT scans of pelvis and abdomen. Would this be to give you a baseline for your spleen? Something else I have not done. I have been diagnosed with anemia but my iron level is good. So, though I get somewhat tired in afternoon, I don’t think it is so unusual for a person my age. I also take low dose aspirin.
Bottom line is - my quality of life is good right now. I will not change anything right now unless my symptoms get worse and/or my blood work goes even more bonkers. Thanks, again, for your insight, Lori.

Hi, Lori, just to clarify, I have not even had a bone marrow biopsy. Perhaps the only reason I would have one is to give me a baseline. Have you had one? I am also curious as to why you had CT scans of pelvis and abdomen. Would this be to give you a baseline for your spleen? Something else I have not done. I have been diagnosed with anemia but my iron level is good. So, though I get somewhat tired in afternoon, I don’t think it is so unusual for a person my age. I also take low dose aspirin.
Bottom line is - my quality of life is good right now. I will not change anything right now unless my symptoms get worse and/or my blood work goes even more bonkers. Thanks, again, for your insight, Lori.

Hi @pumpkin1 ,
Although I am not quite your age, I am 67 and was diagnosed with primary myelofibrosis in 2/2025 after first being diagnosed with essential thrombocytosis in 1/2025 all beginning from routine lab work in 12/2024. I declined Hydrea for my high platelets as I have no symptoms and still do not have any symptoms, no clots and no clotting risk as I do not consider age alone a risk, and felt it not necessary with much more risk than reward. I still have no symptoms and do not take Hydrea or any other meds. I do take low dose aspirin. I did not care for my first oncologist who hastily diagnosed me and then changed her diagnosis and I did not care for the MPN specialist I saw this past summer. That one did not even read my chart with all my lab work prior to my visit with her and my testing results from CT scan of pelvis and abdomen, etc. and thought I had JAK2 mutation but I have CALR mutation. Then she questioned my NGS report which I brought along and showed her that clearly stated CALR, TET2.
So, I do what I think is best for me since I have had the experience that doctors seem to not really know what to do if a person has no symptoms and has already done so much testing.
I think you have every right to question the treatment your doctor is suggesting and make your own decision.

Hi Cindy here. I haven’t posted for a while because I’m doing so well. My MF with JAK2 mutation was diagnosed 5 years ago. My original oncologist looked up in her risk book and told me I had 3-5 years left to live. I went home and cried. Up until the week before, I felt fine with my biggest problem being hair loss. Lurking in my blood stream was severe anemia, high platelets, high white count. Once the iron infusions kicked in we got my anemia under control. She had me try hydroxyurea which made my hemoglobin drop. So no chemo for me. I asked for a second opinion and went to Mayo Clinic. Dr Terfarri said I could try Ojjarra which is a targeted therapy,not chemo. It brought all of my blood values back into the normal range and helped shrink my enlarged spleen. To this day, if I didn’t have monthly blood draws, I would not know I had anything wrong. My only physical symptom is some random sharp itching. I’m 78 now and doc T says I could live another 10 years if I take care of myself.
And believe me, I do.
So if you are not having symptoms and your blood values are good, you have every right to question if you need to peruse chemo.