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trillium (@trillium)

JAK2 negative...now what?

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

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@trillium

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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Replies to "Thank you for your reply and compassion, Colleen. I’ve reviewed the links/discussions you attached. A lot..."

@trillium, yes I would call the appointment line in Phoenix again and explain the situation regarding following up.

Sometimes chemo drugs can be used in the treatment of polychythemia vera. The most common treatment for PV is having frequent blood withdrawals. See more info here:
https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/diagnosis-treatment/drc-20355855
Bone marrow transplants can benefit people with a variety of both cancerous (malignant) and noncancerous (benign) diseases. See a listing of conditions here: https://www.mayoclinic.org/tests-procedures/bone-marrow-transplant/about/pac-20384854

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