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Essential Thrombocythemia: Making treatment decisions
Blood Cancers & Disorders | Last Active: 5 days ago | Replies (187)Comment receiving replies
The only patients I've whose docs allowed them to run platelet levels up to 1,000 were young ET-CALR patients. CALR patients like me are lower risk for clots than JAK2s. However, past age 60 or 65, everybody's considered at least moderate risk.
If I were younger and had great insurance, I would certainly try Pegasus!
However, I am 70 and have only been on HU for five years. I should be able to take it for another 15 years without problems, and I don't expect to live nearly that long due to other issues.
I totally agree that docs don't spend enough time with ET patients, and most of them don't hand out pamphlets or links to reputable Web sites. That's really puzzling now that there are so many places to get credible info. Then they complain when patients Google info.
Lack of info is among the worst "side effects" of ET.
Replies to "The only patients I've whose docs allowed them to run platelet levels up to 1,000 were..."
Been on 1,000 mg/day of HU for 11 years. My top oncologist went to a seminar in saw some major research showing long-term use of Hu can cause cancer in 8 to 10% of patient patients - decades of use. He immediately took me off of Hu and said any possible risk of high platelet count doesn't even begin to compare with the risk of cancer.
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I agree with you about the doctors. I have been on hydrea for 12 years, my only risk factor is I am over 60. I do not take hydrea the way my doctor would like because I get anemia. Consequently, my counts are always 700+. He gets so mad but refuses to hear what that my quality of life is more important to me than being exhausted.
I recently found this forum and it lifts my spirits to read how others are dealing with ET