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Anyone want to talk about Myelofibrosis?
Blood Cancers & Disorders | Last Active: May 21 6:00pm | Replies (185)Comment receiving replies
I can relate to blindsided, I was diagnose with Primary myleofibrousis (anemic) in July 2023. I put on Jakafi in September of 2023. 10mg twice daily. I decided not to let this define me and trying to keep my life in order. My question or maybe just a statement--it seems like the oncologist only looks at my blood counts and asked about symptoms only related to Jakafi and myleofibrousis. I also have hypothyroidism, but only my GP looks at that. It seems like no one is looking a whole person approach. Just wonder it there is any relationships to the two diseases.
Replies to "I can relate to blindsided, I was diagnose with Primary myleofibrousis (anemic) in July 2023. I..."
@sharonm2024 that’s a good thought! I wonder how many of us have thyroid problems. I know I do. I wish these doctors would put things together more. The only question asked when diagnosed was. Were you exposed to radiation?
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Hi,
I agree that the whole person approach is better. I finally have a decent primary doctor who listens. I just saw the O/H and she feels I do have Myelofibrosis rather than ET. That is probably because I asked for a bone marrow biopsy. The good news is I am very low rush on one scales and low risk on the second one. So just aspirin for me right now and still no symptoms for which I thank God!