Essential Thrombocythemia: Looking for information and support

Posted by shenriq @shenriq, Jun 4, 2018

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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Profile picture for diffend @diffend

Also, I am confused about whether Covid booster is contraindicated during Hydroxyurea use. One piece I read said it is.
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@diffend No Vaccines For me Not Chancing it Let my immune System Fight it Off. take Supplements Eat Foods too Help

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I just saw your post. May I ask your age? I was diagnosted with ET JAK2 7 months ago at the age of 75 (I'm 76 now). I only take baby aspirin. How are you doing?

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Profile picture for panamsandy @panamsandy

I just saw your post. May I ask your age? I was diagnosted with ET JAK2 7 months ago at the age of 75 (I'm 76 now). I only take baby aspirin. How are you doing?

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I just turned 77, diagnosed with ET JAK2+ about a month ago. Taking baby aspirin daily and HU 3 days/wk. Doing well so far other than the fatigue which isn’t too bad if I get close to eight hours of sleep. 😉

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