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@sharonm2024

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.

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Replies to "I can relate to blindsided, I was diagnose with Primary myleofibrousis (anemic) in July 2023. I..."

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!