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Essential Thrombocytosis General Questions
Blood Cancers & Disorders | Last Active: Apr 4 1:29pm | Replies (36)Comment receiving replies
I found the BloodCancerUnited (formerly Leukemia/Lymphoma Society) a good source of information on ET http://www.LLS,org for facts and figures on MPNs. I think this Mayo Connect provides a space for the personal experiences of people going thru the process. I've had ET with Jak2 for 5 years now, on HU and baby aspirin. I haven't discovered any solution to the fatigue, but just started tramadol for the bone pain, so far so good. Tylenol does nothing for me, and can't take NSAIDS. BCU(LLS.org) has some good booklets and CancerSupportCommunity gave me a good booklet to keep track of meds and symptons and blood test results.
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@1995victoria
To second the use of BCU, they are a tremendous resource. One program to consider is their First Connections where they will pair you with another patient with your condition. Not for medical advice but just to help with general visits and places to find help. I think with ET (or other MPN) we often find visiting with others quite helpful and supportive especially when recently diagnosed.
https://bloodcancerunited.org/resources/patients/peer-to-peer-support