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Has anyone had experience with Jakafi?

Blood Cancers & Disorders | Last Active: Jun 22 10:22pm | Replies (54)

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@alohasteve

I am now 65 and have been taking Hydroxyurea for 10 years to keep my platelets in control from Essential Thrombocythemia with JAK2 mutation. I've had no known side effects from Hydroxyurea and have lived, as though I didn't have ET. Unfortunately, my disease has transitioned into Myelofibrosis with a TP53 mutation and Splenomegaly (an enlarged spleen), a common result of Myelofibrosis. I've been taking Jakafi for 3 months, with the goal of reducing the size of my spleen, before a scheduled Bone Marrow Transplant (also known as a Stem Cell Transplant). I have had no known side effects from taking Jakafi, along with Hydroxyurea. What I have found from reading many blogs and doing research is that everyone is unique in their reaction to both medications and the type of blood disorder. My humble advice is to do your research from credible sources, ask your doctor many questions and get a second opinion, if you feel you need one. It can be a daunting task to live with our blood disorders, both physically and mentally. I know personally, my biggest challenge lies ahead. Best of luck to you. Carpe Diem!

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Replies to "I am now 65 and have been taking Hydroxyurea for 10 years to keep my platelets..."

Hi Steve
My case is similar to yours. I was treated with Hydroxyurea for7 yrs for ET JAK2. May is 2022 diagnosed with myelofibrosis JAK2 I have been on Jakafi, Hydroxyurea and completed six cycles of Vidaza chemo injections. Unfortunately my White Cells just keep rising. So up and down with meds. I just entered a clinical trial using Fedratinib and Hydroxyurea. It will most likely take a couple months to see if there are any positive results. Best of luck to you with the stem cell transplant.