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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I don't think anyone is telling people not to travel, just to take their meds and, if they're are over 60, have JAK2, and or a history of clots, to wear compression hose and stay hydrated.
Best wishes for your travels!
That is very encouraging ❤️
Thank you
At 73, I've been traveling world wide since ET diagnosis some 20 years ago...I do wear compression stockings when flying long distances (anything over 2.5 hours). Stay hydrated, walk around. I'll be diving in Belize in August, then hope to hike with my daughter in Panama!
I've been flying frequently but trying to keep flight time under 5 hours (so connecting flights mostly). Told to get up and walk around as much as possible, stay hydrated, put meds in carry-on, compression socks (but I don't wear them--too confining). I am 72 yo. "YOLO" (you only live once -- so live your best life and try not to let this inconveinient disorder get in your way!). With Aloha, jd