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Replies to "Thank you @loribmt I had forgotten about my post! I’m seeing my Myelofibrosis MD in a..."
Blood Cancers & Disorders | Last Active: 1 day ago | Replies (4)
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Thank you @loribmt
I had forgotten about my post! I’m seeing my Myelofibrosis MD in a few weeks. My anemia is mostly addressed via the clinical trial but my spleen has continued to grow. I briefly discussed next steps and it was suggested that momelotinib would be the next step. I’m 66 and would really like to move to BMT while I’m healthy in all other aspects. The Transplant MD outlined what would trigger transplant: further mutation, chromosome changes or current medications are not addressing symptoms. So I continue to wait. I was hoping to hear from current momelotinib patients on their experiences. Thank you for the links and reminder. Betsy
Replies to "Thank you @loribmt I had forgotten about my post! I’m seeing my Myelofibrosis MD in a..."
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@davi0937
I’ve been on Ojjarra for almost two years now. Originally I was on 200mg once a day but have been on just 100mg for over a year ago. I forget which lab test had changed to cause the decrease in dose.
Bottom line is great news for me. My hemoglobin, white and red count, and platelets have been in the normal range for quite a while now. I do have 1.5% immature neutrophils which is a concern to me. I believe my spleen has decreased in size for I don’t feel any discomfort anymore.
If I were not going monthly for blood draws, I would not know I have myelofibrosis. I use it as my excuse to go home early from dancing! I’m 78 yr young.
So keep the faith. Not all of the bad things some people are going through will happen to you.