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Is Essential Thrombocythemia a blood disease or cancer?
Blood Cancers & Disorders | Last Active: 5 hours ago | Replies (62)Comment receiving replies
I was very hesitant to begin taking hydroxyurea when I was diagnosed with ET. At my doctors insistence, I began taking it when I turned 60. It kept my platelet count within the normal-ish range. I took it for approximately 15 years. Then in 2022 things changed for me. I lost weight for no particular reason. No dieting.etc. My hematologist suspected I had progressed to Myleofibrosis. After bone marrow biopsy it was confirmed.
Replies to "I was very hesitant to begin taking hydroxyurea when I was diagnosed with ET. At my..."
How are you doing with the MF? Any change in treatment protocols? I have ET-CALR x 17 years, HU x 6 years. I understand CALR makes me somewhat more likely to develop MF, tho there seem to be genetic variables within CALR mutations that are still not well understood. But my hemo explained that anybody with ET will progress if they live long enough. Thanks for sharing your experiences. It's helpful to know how these things play out for others over decades. So many on here are very newly diagnosed, dealing with that initial shock, and cannot (yet) identify with us long-termers.
@luvs2dance Thank you for sharing. I'm sorry to hear that it has progressed to Myelofibrosis. How are you feeling now? Did your treatment change in any way? Did your weight stabilize?
These progressions are worrisome, and I wonder why they progress when they are being treated with HU.
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Think positive. This drug gave you 15 years to enjoy. Let’s be grateful for that. Try to have a good attitude. Believe. Hang in there!