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JAK2 Mutation - Effects and Questions

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

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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.

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Replies to "I'm happy to share my experience. #1. No, do not need to give blood. The Hydrea..."

@misty45 Thank you so very much for sharing your ET experience. My daughter ( age 39) was diagnosed with ET a few months ago- not JAK2 but CALR. She started Hydrea 1 pill – platelets went from 1.5 million to 900,000 added another 1/2 pill every other day – platelets down 800,000. Due to the long term use of Hydrea she changed to interferon. After 3 weeks on interferon her platelets are back to 1.2 million. Can you tell me how many Hydrea pills you take each day? I am thankful you are responding to the Hydrea and no symptoms.

My son is almost 47 and has been dealing with high platelet count 750,000 for about five years. Hematologist put him on 81mg aspirin and monitors every three months CBC. No jak2 mutatation. I wonder if he should pursue with Dr. the hydra meds? No mention of that yet.

My JAK2 Mutation was discovered 11 years ago, quite by accident. I never had any symptoms. (My hematologist told me that for many, the only symptom is death, by a blood split in the brain, heart, or lung!). My original platelet count was close to a million! I’ve been taking Hydrea daily ever since, with no side effects from the drug. However, over the last couple years, my count has fluctuated between 450 to 800. My dosage is adjusted and rechecked again in 4-6 weeks. It’s possible the Hydrea might be losing its effectiveness. I worry that another drug cost or copay might be astronomical! If only a cure could be found. I’m 76 now, and other than arthritis, am in very good health.

I have just been diagnosed, ET with JAK2 mutation….he wants me to start on Hydrea…it is reassuring that you are not having major side effect issues with it….I already have several symptoms of the disease and can't figure out why i would be taking a medicine that will not help get rid of the symptoms, but could increase them??? very confusing…..

so what is your Hydroxy dosage? I was on only 500MG but my doctor(here at Roswell) doubled it, as all on the CBC went high. I too stopped on Sundays and since the new dosage I have not, but was thinking of cutting it to six days again, as I agree about the toxicity. I started in '06 at age of 48