← Return to Prefibrotic Myelofibrosis: Diagnosis Favors Essential Thrombocythemia

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Profile picture for nohrt4me (Jean) @nohrt4me

Quite a spate of folks progressing to MF here. Sounds like docs are increasingly favoring BMT as treatment for MF? Wishing everyone who's moving to MF fortitude and caring helpers as they make new treatment decisions.

So far my ET (CALR+) has been stable x 17 years with help from HU x 6 years. Quarterly blood test today, so knock wood.

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Replies to "Quite a spate of folks progressing to MF here. Sounds like docs are increasingly favoring BMT..."

Hi@nohrt4me,

My O/H told me Kaiser does not have MPN specialists so she referred me to see a bone marrow transplant specialist as they do have those who work also at City of Hope alternating monthly where they work. I chose the one I wanted to see and waited to get appointment with him. The bone marrow transplant specialist I saw said CALR1 mutation is strong reason the pathologist gives diagnosis as primary myelofibrosis which I think you had mentioned. He also said I do not need a transplant now and may not need one or at least not for a very long time. He also informed me that age of 70 years old is not a reason to say person cannot do a bone marrow transplant. Lori had written that also and was entirely correct. He did say person needs to stay fit to have one if older. He informed me that Hydrea does not prevent fibrosis and only lowers cell counts which I already knew. He said cell counts can vary tremendously when I asked him why my platelets lowered 400 with me doing nothing differently and no meds. It is overall trend over time that is important. He was very happy to inform me that I do not need a bone marrow transplant and I was happy to hear that too.