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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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diffend | @diffend | Jul 26 9:13am
In reply to @nohrt4me "If you are concerned about COVID booster, call your pharmacist. These guys have a handle on..." + (show)
Profile picture for nohrt4me (Jean) @nohrt4me

If you are concerned about COVID booster, call your pharmacist. These guys have a handle on drug interactions and contraindications. I have had boosters regularly. I usually feel crappy for 3-5 days after the shot so I am only getting it once a year now. I get yearly flu.

Just before she retired, my PCP said she would ask elderly patients if they wanted a COVID booster, but she was no longer actively pushing it because a) the virus is less likely to cause fatalities now and b) she was tired of hearing patients argue with her by repeating misinformation they heard. "They act like I'm trying to kill them." Sad to lose her. Hope the new one is as good.

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I got a reply from the hematologist yesterday. Ok to boost. The protection outweighs the risk of effects on the blood count by hu. ( I am trying to reduce the risk for long Covid and other future unknowns. )

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diffend | @diffend | Jul 26 9:18am
In reply to @diffend "I got a reply from the hematologist yesterday. Ok to boost. The protection outweighs the risk..." + (show)
Profile picture for diffend @diffend

I got a reply from the hematologist yesterday. Ok to boost. The protection outweighs the risk of effects on the blood count by hu. ( I am trying to reduce the risk for long Covid and other future unknowns. )

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Anyway, question answered!

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