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JAK2 Mutation - Effects and Questions

Blood Cancers & Disorders | Last Active: Aug 18 10:14am | Replies (176)

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@misty45

I have ET, and have tested negative for the JAC2. I've been taking Hydrea 500mg for almost 20 years. Still waiting for the day I get the news I may have acute leukemia. My hematologist says taking it every other day is not good enough because that keeps my platelets only at around 520. He wants me at below 500. I tried not taking it, but my platelet count went back up to 800s. For years I have hoped a cure for Essential Thrombocythemia would come along, but still waiting.

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Replies to "I have ET, and have tested negative for the JAC2. I've been taking Hydrea 500mg for..."

@misty45, Thank you for replying and telling me your story. Having a positive JAK2 result, I'm still in that waiting stage also to see which way it is going to affect me. Whether it will be polycythemia vera (PV), essential thrombocythemia (ET), or leukemia. Since none have yet reared their ugly head, I am tested every 3 months and am not on any medication for this. I do have a few questions for you if you don't mind answering them: 1) Along with your current medication, do you have to give blood to get rid of the extra platelets or does the medication reduce the amount of platelets your bone marrow is producing without having to give blood? 2) Since you obviously have tried cutting back on the prescribed medication, was that because of side effects? If so, what side effects did it cause for you? 3) Can you tell when your platelets are high (do you have symptoms?) or not? 4) From what you've experienced, found out or been told, does having ET mean that leukemia is the next guaranteed step in this disease or is it possible that will never happen? I'm so glad (dare I say relieved) to hear that you have survived all these years with this disease without it progressing into anything worse and hope that that will continue for many years to come. There was an article I saw from the National Institute of Health (NIH) that tested well over 10,000 people and tracked them for many years. From those 10,000+ people, they found only 15 that had the JAK2 mutation and determined that only 3 of the 15 died as a direct result of their disease well into their 70's or 80's. The remaining 12 died from other causes. I'm in my mid-60's with no other major health issues so that really helped me wrap my head around some of this and encouraged me.

I'm happy to share my experience. #1. No, do not need to give blood. The Hydrea is toxic enough to kill the excess platelets. #2. I have experimented over the years to cut back a little from the prescribed dosage simply to minimize the amount of toxicity I'm consuming. My Docs have not liked this kind of fooling around with the dosage. So I've been steady at 6 days a week, no Sundays for about a year. No side effects from the Hydrea after the initial first month twenty years ago. #3. I still have no symptoms of this strange blood disorder called ET, regardless what my count is on any given day. I go every 3 months for a cbc. It puzzles me that at 72, I still feel the same with a count of 480 as I did at age 40 when I was diagnosed with a count of 800. #4. My two Docs (first one retired) have dangled the ultimate fear over me since the diagnosis, but so far my ET has not morphed into leukemia. Having no symptoms and in disbelief, I went to the Scottsdale Mayo Clinic for a second opinion at some point in the 1990s. Same diagnosis. Very disappointing because I was really convinced that nothing was wrong with me. Thanks for sharing the NIH info. I always like to run across updated information on PV,ET, and other blood disorders. You may never progress to anything more advanced. Best wishes.