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Primary Myelofibrosis diagnosis in 40’s
Blood Cancers & Disorders | Last Active: May 14, 2023 | Replies (10)Comment receiving replies
Welcome, @rspriggle. I can only imagine your shock of receiving the diagnosis of primary myelofibrosis, especially in your 40s. I'm tagging @stevehurlburt and @stimme who also have experience with this diagnosis.
What treatments have been recommended for you? Have you had to take extended time away from work?
Replies to "Welcome, @rspriggle. I can only imagine your shock of receiving the diagnosis of primary myelofibrosis, especially..."
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I was screened for a clinical trial almost right away and qualified for the double blinded clinical trial. It includes the combination of Ruxolitinib (Jakafi) and a study drug called Navitoclax/Placebo. I also receive an EPO shot 1x per month and take an 81 aspirin daily. My lifestyle had to change completely. I had to retire early from teaching and stop all classes I was attending. It’s been very difficult but I am able to now rest when needed (which is often) and my quality of life has significantly improved since resigning and being in the clinal trial. I have an amazing hematologist/oncologist and I also see a bone marrow doc at MAYO Clinic to keep an eye on things. My hope and prayer is that I will not have to go through an allogenic transplant anytime soon.