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Anyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: 10 hours ago | Replies (595)Comment receiving replies
@hanya
I have been put on jakafi for 18 days for AML with mylofibrosis in my bone marrow and enlarged spleen. I have low red cells 8.5 and platelets now at 9. I am afraid the jacksfi Will not work and lower my count even lower. White cells seem to be ok. I have to do transfusions blood and platelets every week. I hope that ends soon.
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@jacklyn
I am back ! I want to tell you the rest of my story ! You are correct that JAKAFI CAN BRING YOUR BLOOD NUMBERS DOWN ! Important TO HAVE FREQUENT LABS AND KEEP CLOSE EYE ON THIS ! BECAUSE MY NUMBERS DID GO LOW ! MY NEW SPECIALIST TOOK ME OFF JAKAFI AND PUT ME ON A DRUG CALLED OJJAARA!
It’s newest BUT EXPENSIVE! Speak with YOUR DOCTOR ABOUT OJJAARA ! You may be able to get help to pay for it ! I USED MY INSURANCE! And non profits and I have to pay some portion!!
Good LUCK FRIEND 🙏
I really would like to know how you are doing! Sincerely