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Jun 17, 2018 · Essential Thrombocythemia in Blood Cancers & Disorders

For me, ET has meant being on Hydrea for the past 20+ years, getting a cbc every 3 months or so, and checking to make sure I have no spleen enlargement. It is a strange blood disorder because I have no symptoms that I'm aware of, however if I cut back on the Hydrea, then my platelet count zooms back up. So I have had to continue taking it and probably always will. Docs all say I will have a stroke if I don't take it and that if I don't take it, it is at my own peril.

Jun 5, 2018 · Essential Thrombocythemia in Blood Cancers & Disorders

Hi shenriq, I have been taking Hydrea for 20+ years for ET. It keeps my platelet count down to around 475 to 525 more or less. I am in El Paso but I got a second opinion at the Mayo clinic in Scotsdale. Same diagnosis. No symptoms and it hasn't morphed into leukemia. Just get my cbc every 4 months. Do not have the jak2. I keep waiting for something horrible to happen, but it seems to be under control. Best wishes, Lynda

Apr 20, 2018 · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

I'm happy to share my experience. #1. No, do not need to give blood. The Hydrea is toxic enough to kill the excess platelets. #2. I have experimented over the years to cut back a little from the prescribed dosage simply to minimize the amount of toxicity I'm consuming. My Docs have not liked this kind of fooling around with the dosage. So I've been steady at 6 days a week, no Sundays for about a year. No side effects from the Hydrea after the initial first month twenty years ago. #3. I still have no symptoms of this strange blood disorder called ET, regardless what my count is on any given day. I go every 3 months for a cbc. It puzzles me that at 72, I still feel the same with a count of 480 as I did at age 40 when I was diagnosed with a count of 800. #4. My two Docs (first one retired) have dangled the ultimate fear over me since the diagnosis, but so far my ET has not morphed into leukemia. Having no symptoms and in disbelief, I went to the Scottsdale Mayo Clinic for a second opinion at some point in the 1990s. Same diagnosis. Very disappointing because I was really convinced that nothing was wrong with me. Thanks for sharing the NIH info. I always like to run across updated information on PV,ET, and other blood disorders. You may never progress to anything more advanced. Best wishes.

Apr 20, 2018 · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

I have ET, and have tested negative for the JAC2. I've been taking Hydrea 500mg for almost 20 years. Still waiting for the day I get the news I may have acute leukemia. My hematologist says taking it every other day is not good enough because that keeps my platelets only at around 520. He wants me at below 500. I tried not taking it, but my platelet count went back up to 800s. For years I have hoped a cure for Essential Thrombocythemia would come along, but still waiting.