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Essential Thrombocythemia: Looking for information and support

Blood Cancers & Disorders | Last Active: Jun 17 9:11am | Replies (504)
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@winmil99

I am about to turn 70..active healthy woman . Vegetarian x 50 years. Run, kayak, and practice yoga x 50 yr. Routine blood work reveals plt trending up x 2 yr now..430- 602 now at 543..I was referred to hematologist who told me my diagnosis is prob ET. ..blood smear reveals JAC2 pos. But BCR/ABLI MRNA neg.. will ge getting bone marrow test soon…My Dr wants me on asa daily and now wants me on Hydroxyurea …I do not want to take that drug..It just bothers me to take a chemo…are my plts high enough to be warranting that drug?Is it the JAC2 pos diagnosis that needs the drug? Just starting to read about it. ..any info is helpful. Thanks , cathy

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Replies to "I am about to turn 70..active healthy woman . Vegetarian x 50 years. Run, kayak, and..."
jroyer | @jroyer | Jun 29, 2023

Similar situation—the drug warnings are enough to scare anyone! I rescheduled a meeting w/Doctor (not LP) who took one hour to explain my diagnosis and prognosis. this really helped me to better understand the Rx options. He did cut the dose in half (LP prescribed 500mg Hydroxyurea daily) so I take 500mg every other day for one month then test to see if it is sufficient for a reduction. I too do not like meds, but better than stroke or heart attack! 😳 BUT, if I die tomorrow I’ve had a great life. I am now focused on my bucket list and trying to keep a sense of humor about it all! 😊 🙏🏼 Best, Jan

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eileen11108 | @eileen11108 | Jun 29, 2023

Hi winmil99,

Welcome to the site. I was diagnosed in June 2022 with platelets at 735. My diagnosis is ET JAK2. I have been on and off 500 mg Hydroxyurea. First it was daily, then every other day, and now only on Monday/Wednesday/Friday. If I have to take HU I hope I can continue taking this way, My next hematologist appointment is July 11 and I will update my lab results.

I greatly understand your hesitation. It is a chemo pill with possible side effects. However, all the alternatives also have side effects. If you need to start on HU I suggest you ask for a slow start. Also, remember to drink minimum 64 ounces of fluid daily to help eliminate the toxicity.

Best wishes, Eileen

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