Diagnosed ET with Jak 2 617V mutation. Put on 5 days a week of 500 mg HU which held my platelets to about 600 range for over 3 years. I never had any problem with that amount of HU and platelets responded well. this year in March my platelets started to increase and also white and red cells and hematocrit. Consulted with Cleveland Clinic Dr. who wants a NGS myeloid panel to see if other gene mutations show up - has it really been PV or other vs. ET I think is the question. The testing could help with diagnoses and treatment. Having trouble getting United Healthcare to approve the testing, and my oncologist in Maryland has not been helpful without my pushing her staff to send the original request and now to appeal. Since May I have gone from 5 pills a week to 7, 9, 12 and now 14. They like hematocrit to be below 45 for clot risk. I know if I went off HU, readings would go through the roof. How can some go off and be able to control cell production? Maybe low risk and numbers not too high where wait and watch may have been possible? My understanding is HU is to keep cells to reasonable levels just to prevent heart attack or stroke/clots. Concerned about what is to come if HU stops working. Does anyone have a good Oncologist they could recommend in Maryland?

TW Diagnosed ET late 2021 w Jak 2 mutation age 63.