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Essential Thrombocythemia: Looking for information and support
Blood Cancers & Disorders | Last Active: Jun 17 9:11am | Replies (484)Comment receiving replies
Thank you for sharing your history. I will keep you experience with ET and HU in mind should my platelets go above the 600s in the future, especially if I experience brain fog and lethargy. Right now, two weeks off HU, I'm feeling bright and strong--I too spent yesterday trimming and hauling winter-killed branches to the street.
Actually, I was only diagnosed with ET this year, so my post is not bragging about powering through my ET. I was using the backpacking as an example of the level of activity I wish to maintain with a clear head. Being unable to do this was the reason I stopped the HU. I was trying to say this was the right decision for me in consultation with my hematologist. Having learned in veterinary school to search for and assess medical information in the cyber age, I take anything shared from Dr. Google with enough skepticism to do my own research.
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Thanks for clarifying. I hope you continue to feel well. I didn't expect to feel better on HU, but some people do If doctors start out on lower doses and work up gradually.
If you have good insurance, Pegasys works for a lot of people, though older people seem to have more adverse side effects. They may have a better dosing strategy. Some see a reduction in the number of abnormal platelets on Peg and achieve remission. But the cost was something like $6k a month last I checked, and it' s off-label for ET. So it's beyond affordability for many people in the States.