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← Return to ET: untreated elevated platelets for over 13 years
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ET: untreated elevated platelets for over 13 years
Blood Cancers & Disorders | Last Active: 1 day ago | Replies (30)Comment receiving replies
What a long and difficult road you're on, sdcgcarroll.
My two cents: AFTER hydroxyurea (HU) or some other treatment lowers your platelet count, and you STILL are having those episodes -- THEN the oncologist can declare them unrelated.
Right now, such a comment is baseless. Dizziness, hot flashes and debilitating fatigue can all be symptoms of ET.
As for aversion to HU: That's perfectly natural. Who wants to go on chemo?
Please delve into this forum to learn about others' experience. So many people (including me) have gotten their lives back thanks to HU.
You've been fighting for yourself for years. Keep up the good work!
Replies to "@sdcgcarroll What a long and difficult road you're on, sdcgcarroll. My two cents: AFTER hydroxyurea (HU)..."
@janemc thank you so much. The fatigue is probably my biggest complaint. Thank you for your encouragement ❤️
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@janemc have you had many side effects from the HU? That is my fear honestly. Do many lose their hair? Did it help the fatigue? I’ve also heard you are at higher risk for all kinds of other things including skin cancer which is also in my family.