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DiscussionAnyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: 1 hour ago | Replies (491)Comment receiving replies
Replies to "@birgitr Oh good. Happy to share. As you say, we do seem to be similar though..."
@kat260 interestingly I haven’t done a bone marrow biopsy yet. This MPN specialist who recommended peg has strongly advised me to do one, however, my normal hematologist is OK with a clinical diagnosis. Honestly, at the moment, I am absolutely thankful because it would impact my mood significantly. So I’m happy that I’m on peg even without a biopsy. Needless to say I’m not sure if my insurance is OK with that as well, we will see. Additionally, I am aware that the most common approach is to do a biopsy. By the way my vaf is 26.
@kat260 What is VAF? I'm 76; diagnosed last year; April's quarterly platlete level 536; my doc said a bone marrow was not necessary. I'm on one 81mg baby aspirin per day; no symptoms. Glad to meet you!
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@kat260
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!