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What are treatments for myelofibrosis?
Blood Cancers & Disorders | Last Active: Sep 4 8:39pm | Replies (97)Comment receiving replies
Good evening
I was diagnosed with primary myelofibrosis about a month ago. The bone marrow biopsy showed a genetic marker called SRSF2. This is apprently a more significant genetic marker for negative disease progression. I would like to have a BMT - but curious as I read the comments that the MDs are reluctant to do BMT unless you have significant symptoms? I would prefer to do the BMT at age 65 when I am still only experiancing anemia. Thoughts? My husband and I see our Mayo provider for the 1st time in July 2025. thank you for your help!
Replies to "Good evening I was diagnosed with primary myelofibrosis about a month ago. The bone marrow biopsy..."
Welcome to Connect, @davi0937 You’re going to be in terrific hands with the hematology dept at Mayo. I confess, I’m a bit biased having gone through a bone marrow transplant at Mayo-Rochester. It’s now my home away from home but it gives me an inside perspective of the incredible care you’ll receive there.
A bone marrow transplant can be a curative option for Myelofibrosis where there’s a high probability of progression. While I was undergoing my BMT for AML (age 65), I met another woman who had her transplant a couple of weeks before me for MF. We’re still great friends, though we live a 1,000 miles apart. But here we both are, six years post transplant, healthy, active and in our early 70s. Her MF is in a durable remission.
If it’s warranted your doctor may consider your request because from what I’ve learned, the healthier and stronger you are going into transplant, recovery is generally easier and the transplant may have a better outcome.
Mayo’s transplant center is 2nd to none and filled with super heroes. ☺️
Are you all set with your patient portal? That becomes your lifeline of communication between you and your specialist and care team. You’ll be able to access it to see messages from the staff, check your appointments and see lab results
I forgot to ask, which campus will you be visiting?
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Hi davi0937,
Like you, I was diagnosed with primary myelofibrosis but that was one month after my O/H diagnosed me with ET January 2025. I have no symptoms but do have very high platelets and somewhat high white cells. I have normal red cells so no anemia but on one lab in February 2025 on my bone marrow biopsy day my hemoglobin was a bit low, but it recovered on its own and has never been low except that lab. I take low dose aspirin daily only as I do not like the idea of Hydrea lowering all cell counts if I truly have myelofibrosis. I have CALR1 mutation but not SRSF2. I know nothing about SRSF2 and have not heard of it. I did have MGS testing. I do not have a great relationship with my O/H as I asked her for the bone marrow biopsy after she was sure I had ET and told me it was not necessary. I am 65 and chose an Advantage Medicare plan which does not have MPN specialists unfortunately. The best my O/H said she could do is send me to bone marrow transplant specialist so I have an appointment with one in early August about two and a half hours away from where I live. You are lucky to have Mayo so you can see MPN specialist. Please share what you are told when you go in July.