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pennyhedgecoth (@pennyhedgecoth)

JAK2 ASXL1 Mutations: Anyone else?

Blood Cancers & Disorders | Last Active: Nov 24, 2021 | Replies (16)

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@stevehurlburt

Penny…what was the determination? EV..PV? I too was diagnosed 3 years ago. BMB confirmed PV with a Jak2 mutation. At that time there were less Mutations they could test for. I go back in to Mayo in a few weeks to run the now 25 generic mutation blood panel and a 2nd BMB. Fortunately I am at Stage 1… but after 3 years on Hydrea..I developed Rare Sideffects and was just approved to switch to Interferon/Pegasus yesterday. My oncologist suggested Jakafi…but Phoenix has some world class Specialists …dr Palmer @ Mayo and dr Nath @md Anderson. They suggested I might slow any progression with Interferon. Not sure who you use at Mayo, but I assume they consult with Dr Palmer and after all my research I know you are in good hands. Happy to talk more once I too get more on my specific genetic markers. Best of luck to you and your husband. You found a great resource here and @Mayo Phoenix!

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Replies to "Penny...what was the determination? EV..PV? I too was diagnosed 3 years ago. BMB confirmed PV with..."

Just checking in with you
Did you have your genetic mutation testing? Do you have the ASXL1 mutation

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