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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hudson2019 | @hudson2019 | Dec 21, 2025

In reply to @diffend "Also, I am confused about whether Covid booster is contraindicated during Hydroxyurea use. One piece I..." + (show)

@diffend No Vaccines For me Not Chancing it Let my immune System Fight it Off. take Supplements Eat Foods too Help

panamsandy | @panamsandy | Dec 21, 2025

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?

gama1287 | @gama1287 | Dec 21, 2025

In reply to @panamsandy "I just saw your post. May I ask your age? I was diagnosted with ET JAK2..." + (show)

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. 😉

Sent from AT&T Yahoo Mail for iPad

janemc | @janemc | Dec 22, 2025

May I offer a gentle reminder that taking HU weakens our immune response?

I drove four hours to get flu and Covid vaccines this fall. I'm grateful for the life-saving protection they offer. Speak with your own doctor; I've been assured it's safe for me to get these shots.

I also wear a mask to medical appointments or other busy situations.

These are my choices, because there is no one else to care for my dogs and my elderly husband.

lisanell | @lisanell | Dec 23, 2025

Covid vaccinations are extremely important for people with ET due to the increased risk of of blood clots with a COVID infection.

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