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Essential Thrombocythemia: Looking for information and support
I was recently diagnosed with Essential Thrombocythemia, a rare incurable blood cancer. Platelet count aside, I am asymptotic. This current condition morphed from (constitutional) thrombcytosis, something I’ve lived with for 25+ years. While the new diagnosis was the result of a bone marrow aspiration and biopsy, my age was an additional factor, which was completely disarming, having been walking around unwittingly for the past 8 years! While at the low end of risk for clots, heart-attacks and stroke, nothing has truly changed - except the “C” word. No chemo yet, but active discussion about hydroxyurea. Uncertainty about ET is anxiety provoking and swoethatl, but I’m feeling betrayed by my blood. I’m looking for all information about ET, the chemo and support.
Thanks!
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Hi again @crsimon5 ,
That is so great you actually got to see the doctor who made the podcast. You are in very good hands there. I thought I was seeing an expert here, but that just did not happen! She even informed me there were no trials I could be it! I am not interested in being in one now, but I really do not think she was giving me correct information. A year ago August, with my former insurance, that O/H who diagnosed me sent me to a bone marrow specialist. It was a very long drive, but I did see him. He told me I would need to check with City of Hope (where he works half the time) to be in a study there. I do believe he was telling me the truth as I later read later that City of Hope is one of two places in CA doing the CALR Incite trials. He said I did not need a bone marrow transplant now and may never need one. I hope to stay in the never need one category.