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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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@gama1287
As Colleen says, it's a STEEP learning curve.
Dip into the discussion here at your own pace.
Just ask and we will all try to help!
Welcome, @gama1287. Getting a new diagnosis comes with a steep learning curve. You've come to the right place to connect with others who have experience with essential thrombocythemia and having the JAK2 genetic mutation.
To help you connect with others like @carefor @eileen11108 @preacherswife1977 @mlmk0601 @debhammel @janemc @lynnevb @nohrt4me, I moved your post to this discussion:
- Essential Thrombocythemia: Looking for information and support https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/
If you use the group search, you will find many discussions on a variety of topics. Using 3 different search terms relevant to your diagnosis, gave these results:
- Essential Thrombocythemia https://connect.mayoclinic.org/group/blood-cancers-disorders/
- ET https://connect.mayoclinic.org/group/blood-cancers-disorders/
- Jak2 https://connect.mayoclinic.org/group/blood-cancers-disorders/
@gama1287, what questions do you have? Have you started any treatment?
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3 ReactionsLooking for a support group for newly diagnosed Essential Thrombocythemia due JAK2 genetic mutation. This is all new to me
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3 ReactionsAnyway, question answered!
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1 ReactionI 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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5 ReactionsIf 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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4 ReactionsHello, diffend. I do hope the HU will ease your headaches as it brings down your platelet count. That -- plus renewing my energy -- is what it did for me.
What triggers ET confounds us all, experts included. But it's been more than a hundred years since ET was identified as a blood disorder/cancer. There was no Covid, let alone Covid shots, in the 1920s.
Do serious illnesses / times of stress / chemical exposure set off ET? To me it seems the answer is probably yes, but ???
It's always best to check with your own doctor, but I've been assured the Covid booster is safe for me. That's because it's an "inactivated" vaccine. Please ask your oncologist. It seems your PCP (like mine) doesn't have the answers you need.
To better days ahead.
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4 ReactionsAlso, I am confused about whether Covid booster is contraindicated during Hydroxyurea use. One piece I read said it is.
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2 ReactionsThis is helpful to me. Recently started on ASA and HU at age 74. I had been reporting a big increase in the ophthalmic migraines from less than once a year to twice a week. My PCP and ophthalmologist had no opinions despite my persistently elevated platelets over the year. I feel that this was somehow triggered by a Covid infection I had a few years ago. Don’t know if there are studies showing a link, do you?
I too am a retired NP, but reluctant to push when I know nothing about this disorder, but neither does my PCP!
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2 ReactionsThanks for that reply, puts things in perspective for me!
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