Pre-fibrotic Myelofibrosis

Posted by mtnlife @mtnlife, Jan 22 9:43am

Does anyone on this site have pre-fibrotic pm or know where I can get some good information. I am still a week away from a BMB which will disclose (hopefully) whether I have this or essential thrombocythemia. From the look of my last set of blood counts I believe the diagnosis points toward the former.
My anxiety is just through the roof. I live alone and have no family within four hours of me. I try to stay calm and positive but this just isn't working. At 71 I have lived a good life but I just get overwhelmed thinking it is time to sell a home and make my final arrangements. Any support or encouragement would be helpful, particularly from others who may have this diagnosis.

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My heart goes out to you Posted by mtnlife @mtnlife, 6 days ago. I don't know how to tell my autistic son (age 23) on 4th grade level that I have cancer and I turned age 51 (hospital for month in 2020 and they missed PV and Diagnosed with Myelobrosis Dec 30, 2022.) Doctors and more doctors – no one wanted me until I got cancer. Doctors didn't want me when I had rare life-threatening weird wacky symptoms and diseases. Now, everyone wants my blood – 3 doctor's apt. this week and can't keep awake but when I had then energy; doctors didn't like something they don't know, doctors like cold/ flu/ COVID 19. It's hard to be without family and symptoms. My neighbor Dave moved to be closer to family, he keeps being hospitalized with ulcers. At 71, moving is extremely hard and all lone. Wish I could help, prayers and best wishes (hope you find neighbors to help)

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I was initially diagnosed with Essential Thrombosis ET be Suze of higher than normal platelets, rising from the 400s to 511, 588 then 612 in a period of a few months. I agreed on Nov 8 to take 500 mg hydroxyurea HU and in December had the bone marrow biopsy. BMB. My platelets have dropped to 399 but BMB revealed I have prefibrotic myelo fibrosis. Next step was ultrasound of spleen and not sure if it has enlarged or not. The interesting part is I have not experienced any definite side effects from HU and sailed painfree through the BMB. I am 83 and in good health up until now. At my age I expect to feel tired and am sometimes short of breath when climbing stairs or carrying heavy grocery bags. Watching tv and playing games with my grandsons ages 8 and 3 are my activities. I’m not sure what the future holds for me. Trying to avoid negative thoughts. Hoping the worst scenario doesn’t happen.

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Thank you for the responses. I got through the BMB with minimal discomfort. Now awaiting the diagnosis. Trying to stay balanced and positive but not knowing is certainly hard.

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@flynnconn

I was initially diagnosed with Essential Thrombosis ET be Suze of higher than normal platelets, rising from the 400s to 511, 588 then 612 in a period of a few months. I agreed on Nov 8 to take 500 mg hydroxyurea HU and in December had the bone marrow biopsy. BMB. My platelets have dropped to 399 but BMB revealed I have prefibrotic myelo fibrosis. Next step was ultrasound of spleen and not sure if it has enlarged or not. The interesting part is I have not experienced any definite side effects from HU and sailed painfree through the BMB. I am 83 and in good health up until now. At my age I expect to feel tired and am sometimes short of breath when climbing stairs or carrying heavy grocery bags. Watching tv and playing games with my grandsons ages 8 and 3 are my activities. I’m not sure what the future holds for me. Trying to avoid negative thoughts. Hoping the worst scenario doesn’t happen.

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Thoughts and Prayers! You got this!❤️🤗❤️

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