Essential Thrombocythemia: Looking for information and support

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. )

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.

Also, I am confused about whether Covid booster is contraindicated during Hydroxyurea use. One piece I read said it is.
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Also, I am confused about whether Covid booster is contraindicated during Hydroxyurea use. One piece I read said it is.
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Ocular migraines and migraines and TIAs can be caused by high platelets and/or not taking aspirin. The condition is called microvascular ischemia. Platelets are sticky and cause the blood to clot which is good thing if you get cut or have surgery but in ET we have too many of these platelets so we can have unwanted clotting in vital organs. So if there are small clumping or clotting in the brain or eye or kidney or other vessels we can have trouble such as pain or visual disturbances. In more complicated scenarios loss of vision, heart attack or stroke could occur. That is why the protocol for ET usually involves baby aspirin to prevent clumping and clotting of platelets and some agent such as hydrea to lower platelets. The timing of when to start the platelet lowering agent varies but most often is started either by age (over 60), symptoms such as migraine or visual disturbances or by the number of platelets (this number varies depending on many factors), or by the documented genetic mutations such as JAK2 or CALR. This is a fairly simple explanation that does not go into great detail but is a general overview.
I have had ET since 2002 (yes over 20 years). I was started immediately on baby aspirin but did not start hydrea until age 60. I am now 71yo and doing well. Ask me anything and although I am not an expert, I have a lived with this a long time and have a medical background as a retired nurse practitioner. Stay healthy everyone! And yes, we can stay healthy even if we have been diagnosed with a cancer.

I don’t understand the business of JAK2. I see some have posted here about a sibling link. Is this not a “ random” mutation? I have 2 sisters, one with CLL( chronic lymphocytic leukemia) followed with CBCs, no treatment. Diagnosed few years ago. The other has just had neurosurgery to remove a glioblastoma, bless her, awaiting treatment decisions . Are either of these linked to genetic mutations? We all grew up on military bases both overseas and stateside and lived close to the very active B52 flight line during the height of the Vietnam war. I wonder about exposure to damaging agents. My father in law was stationed at the same base and later developed myelodysplasia followed by Acute Myelogenous leukemia.

Thank you Lynne.. I am a nurse as well, living a long time with this. I have to temper my Aspirin use to only twice a week, or my eyes will start to bleed. I have also learned that since the platelets are pushed into production too quickly, they do not work as well to clot, and I have found that even when I am not on aspirin I have an extended bleeding time. I just tell the doctors that I still bleed easily even though my platelets are too high, and this really confuses them. But if Platelets are immature.. they do not do what they should as far as clotting, am I right? Thanks for being part of this conversation. I do not know too many people who have had this for a long time! Take care hoping for many more years!

Ocular migraines and migraines and TIAs can be caused by high platelets and/or not taking aspirin. The condition is called microvascular ischemia. Platelets are sticky and cause the blood to clot which is good thing if you get cut or have surgery but in ET we have too many of these platelets so we can have unwanted clotting in vital organs. So if there are small clumping or clotting in the brain or eye or kidney or other vessels we can have trouble such as pain or visual disturbances. In more complicated scenarios loss of vision, heart attack or stroke could occur. That is why the protocol for ET usually involves baby aspirin to prevent clumping and clotting of platelets and some agent such as hydrea to lower platelets. The timing of when to start the platelet lowering agent varies but most often is started either by age (over 60), symptoms such as migraine or visual disturbances or by the number of platelets (this number varies depending on many factors), or by the documented genetic mutations such as JAK2 or CALR. This is a fairly simple explanation that does not go into great detail but is a general overview.
I have had ET since 2002 (yes over 20 years). I was started immediately on baby aspirin but did not start hydrea until age 60. I am now 71yo and doing well. Ask me anything and although I am not an expert, I have a lived with this a long time and have a medical background as a retired nurse practitioner. Stay healthy everyone! And yes, we can stay healthy even if we have been diagnosed with a cancer.