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trillium (@trillium)

JAK2 negative...now what?

Blood Cancers & Disorders | Last Active: Mar 8, 2021 | Replies (4)

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@colleenyoung

Hi @trillium, while many patients with polycythemia vera (PV), essential thrombocythemia (ET) or myelofibrosis (MF) have the JAK2 mutation, it is possible to by JAK2 negative with PV or ET. Read more in this article:
– Discovery Of A New Mutation In JAK2V617F Negative Myelofibrosis Patients http://www.mpnresearchfoundation.org/Discovery-of-a-new-mutation-in-JAK2V617F-negative-myelofibrosis-patients

I'd like to also bring fellow members @mgrimes5 @thlas1971 @scsimpson @caroldk @jeffc4365 @gjb1 who also have a myeloproliferative neoplasm (MPN) but are JAK2 negative. Read more in this discussion for example:
– Polycythemia Vera https://connect.mayoclinic.org/discussion/polycythemia-vera-1/

According to Mayo Clinic's explanation of PV, the symptoms you're experiencing align. https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850

I can imagine your feel lost right now. It takes so much to have to advocate for yourself, but I believe that's what you're going to have to do. And you've already begun by contacting Mayo Clinic. You can always call Mayo Clinic to ask about the review of your records. Have you tried following up?

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Replies to "Hi @trillium, while many patients with polycythemia vera (PV), essential thrombocythemia (ET) or myelofibrosis (MF) have..."

Thank you for your reply and compassion, Colleen. I’ve reviewed the links/discussions you attached. A lot of good information—especially about the new mutation. I just need to figure out how to present it to the hematologist here until I can find an mpn specialist.
As for following up with the Clinic for my records review—unfortunately the phone number that the scheduling assistant provided me is actually a fax number (in addition to the hematology clinic’s fax). So…I have no way to follow up. Do I just call the appointment line again? I’m trying to get in to the Phoenix location.
As a side note: I found it interesting that when the appointment scheduler was running through the matrix for polycythemia, she was asking about chemotherapy and bone marrow transplant. When I said no to all of the above is when she said the hematology clinic would need to review my records. Are those actual treatment options for non-cancer disorders?
Thank you again.

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