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Hi @davi0937 ,
I am very sorry your spleen is bothering you and maybe something going on with your heart. Honestly, I have not had that happen to me still yet after 1.5 years of being diagnosed with PMF. I do not have any symptoms still, but consistently high platelets and slightly high white cells on lab work. I have normal red cells and hematocrit. The day of my bone marrow biopsy in 2/2025, my lab work had mysteriously lowered (by 400 platelets) with me taking nothing, slightly low red cells, and higher white cells. That all went away on labs done after which are very similar to labs done before my bone marrow biopsy so super strange! I believe you posted earlier that you have CALR mutation and are the same age as I, 66, with upcoming birthdays soon just as I do, but you have some other mutation that puts at more risk for progression and maybe that’s why you want the bone marrow transplant as soon as possible? The bone marrow specialist I saw said he does not recommend transplant ahead of need for one as it has its own risks also. I hope you can find out when it is the right time for you to have one and it goes well. Maybe you can get a few different opinions?

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Replies to "Hi @davi0937 , I am very sorry your spleen is bothering you and maybe something going..."

@1pearl Yes - you are right the MDs a re recommending wait. I have MPL (10% of PMF have this). CALR is less risky. I just don’t like wearing my body down with disease waiting. I want to go into transplant strong. I did get a second opinion at Univ of MN a few weeks ago. I am seeing a transplant team 9/1. I haven’t told my Mayo team. It’s interesting that when I have visits I have to ask questions instead of them helping me to understand. I sent my Mayo MD a question about using risk generators and what my risk looks like and he didn’t directly answer me. I feel like if I had had my transplant last year at 65 (before I had a heart murmur) it would have been less difficult. I need to look at the information Lori sent before I conclude anything. Wishing you well! Betsy