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Anyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: 8 hours ago | Replies (104)Comment receiving replies
I was officially diagnosed with ET this spring and tested positive for JAK2. 53 years old, I am living in Japan, and on .5 mg Anagrelide three times a day (1.5 mg total). I started out at 1 mg, but my platelet count kept gradually climbing. It went over 700,000 in November, and then my dose was increased. I'll find out in four days how it's working. Last spring I had rolling migraines and odd neck and eye pains, but they completely stopped within two weeks of being prescribed 100 mg of aspirin daily. Until recently, I didn't feel anything out of the ordinary, but since the cold weather hit, I've been getting tingles in my hands and feet from time to time. I'm also a lot more fatigued, but I also have Crohn's and that could be a big reason. I try to walk two miles a day if I can, and about once every half an hour or so, I do leg lifts, stretches, or squats to keep things circulating. The hospital found a few clots in my lungs, so I am also taking 10 mg of Eliquis per day. It's been a roller coaster since last January when I started getting migraines and other pains. At least I can say I'm not hurting as much as I was. Looking forward to hopefully getting things under control in the near future.
Replies to "I was officially diagnosed with ET this spring and tested positive for JAK2. 53 years old,..."
Yes, moving helps with the tingles in the extremities! I do yoga most days and have a stationary bike. Also helps with fatigue. Hoping your treatment continues to help improve your quality of life.
I too had ET due to a JAK2 . Platelet count got to 800,000. I had migraines also which cause weakness like a stroke. Then I needed treatment before heart surgery to replace my aortic valve. I was scared to be on chemo initally but then I lived on Hydroxyurea for 7 years comfortably with minimal side effects. Ultimately I qualified for a stem cell transplant as the cells which were producing the excess platelets finally stopped producing platelets and they also took over my bone marrow. My 1 year anniversary is in 2 months.
I was told by my original oncologist that you can live 20 years with ET. There are many different paths we all take and I'm sure yours will be unique! Hopefully with minimal side effects!
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Your activity level is inspiring! What a great suggestion, to stretch and get blood pumping throughout the day.
Here's hoping your upcoming bloodwork shows more progress.
But if your platelets are still not quite where you want them to be -- hang in there. You're doing everything right! Better days are coming.