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 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
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13 ReactionsHi @shenriq
In addition to the Breast Cancer group, I included your post in the Blood Cancers group (https://connect.mayoclinic.org/group/blood-cancers-disorders/) so you can meet others living with Essential Thrombocythemia, like @ettap @misty45 @badblood @tessa @evazhang @deborahgrace and @sueg444
Shenriq, are you still in treatment or taking an AI for breast cancer too? How might one diagnosis affect the other?
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