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Anyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: 4 hours ago | Replies (494)Comment receiving replies
Hooray that you're getting a second, more expert opinion.
I am baffled you were told "the aspirin renders half my platelets inactive . . ."
It's not platelet "activity" that causes problems. With a count of 880, you're way out of the normal platelet range. Aspirin makes platelets more slippery, but it doesn't magically create more room for all those oversized, misshapen ET platelets. Extra platelets crowd the blood vessels (= headaches, vision weirdness, dizziness) and may distend the spleen.
The production of all those extra platelets is another concern. It's really taxing your bone marrow.
Please, share what you hear from the specialist.
Kudos for advocating for yourself!
Replies to "@kat260 Hooray that you're getting a second, more expert opinion. I am baffled you were told..."
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@janemc It's interesting you say that about platelet activity. My haemo really only talks about clot/stroke risk and the magic number for me starting treatment is when I'm around 1000. The other risk I have is my calcium score of 110, which is moderate levels of plaque in the heart arteries and I've read that high active platelets can increase calcium score. He says, even though my count is 880, it's more like 440 as half are inactive. I asked about studies that show this and he said 'clot tests' show only half are aggregating, though I personally, haven't had a clot test.
It's a very good point though about the symptoms and spleen. He has never discussed risk to the spleen. I have read a bit about how the spleen can enlarge with ET but didn't know it could be due to number of platelets - active and/or inactive.
I will definitely discuss this with the specialist as well as the affect extra platelets, active and inactive, have on bone marrow.
There is alot to learn and understand. I am a newbie so thanks, I really appreciate the info and support 👍