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My mom has Polycythemia Vera: Can PV be managed without phlebotomies?

Blood Cancers & Disorders | Last Active: Feb 19 9:45am | Replies (36)
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@nypara66

Sorry it took your expertise to get you to the right specialist for diagnosis. I have one question. Did they insist on a bone marrow test? PV can be diagnosed solely on your labs and JAK2 positive result. Treatment is the same and I feel like b/c this is so rare they are doing it more for their studies and for the cost. My oncologist said he was fine with me not having the bone marrow test. Unless I incur severe issues, I don’t intend on it.

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Replies to "Sorry it took your expertise to get you to the right specialist for diagnosis. I have..."
tleona3024 | @tleona3024 | Dec 22, 2024

I was wondering the same thing- that it took Jackie to do her own research.
For my mom (we are in Canada), it’s recommended to do the biopsy. It was uncomfortable for her, but manageable. It was good so show any advancements. But it was solely her choice. The positive jak2, high hemoglobin are enough markers for PV

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jackiecarey | @jackiecarey | Feb 12 8:27pm

MDAnderson did perform a bone marrow test. Not sure it added much to the diagnosis as treatment didn't change..Ive had it 2 years, I'm 77 and I take my hydrox with asa 80 mg in the morning and move on with my day..As time moves on I'm thinking of PV less and less..Try not to dwell on it like I did, it doesn't help...Move on and enjoy your life. in the beginning you may believe it's not possible, but it is....

As I walk through MDA I realize just how lucky i'am...

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