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DiscussionAnyone living with Essential Thrombocythemia with JAK2?
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Replies to "We are thinking about going to the Mayo Clinic to get a comprehensive eval. Has anyone..."
@dmcj YES! I highly recommend seeing Cecilia Yi at the MPN clinic at Mayo in Pheonix. She is super smart on the disease and will give you a good trajectory for your daughter. I was diagnosed with ET Jak2 when I was 33 just after having my second child. I am now 68 and have lived a long life on Hydroxyurea, just recently increased to 1000mg/day as my counts were not staying down on one pill a day. I saw Dr. Yi at Mayo clinic and she recommended Jakafi based on my blood work and bone marrow aspiration that was done there. Its not cheap! My portion after insurance was $7500, which I am glad to make payments. I started Jakafi a couple days ago and am happy to report less fatigue and less hair loss. Still getting skin issues, but I live in Hawaii and am in the sun too much. Its worth the trip, to find out from an EXPERT on the disease! Most Local Hemo/Onc do not deal with this disease that often so they tend to take a "wait and see" approach. Good luck! Eileen from Honolulu
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@dmcj I think that is a fantastic idea❤️