← Return to Essential thrombocythemia (ET): When to start hydroxyurea (HU)?

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Thank you for the reactions and I'm glad to see a new post, too. The posts are helpful and reassuring to me, as all this is new for me.

I want to be part of an active discussion as my treatment progresses. Thank y'all and God bless!

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Replies to "Thank you for the reactions and I'm glad to see a new post, too. The posts..."

Welcome to Club ET. I have had it for about 17 years, tho researchers say the driver mutation (mine is CALR) is likely detectable for many years, even decades, before it shows up in abnormal CBCs. Once the flurry of diagnosis is over, the course of the disease slows to a c-r-a-w-l. Hence "chronic but indolent."

I am 70, on Year 7 of hydroxyurea (HU). Platelets swim around in 400s, and doc calls that "stable." No blood clots, bleeds, or skin cancers from the ET. Can't seem to shake fatigue in the past year, but given my dad's experience--he also had ET--I'd say we all age at different rates and I suspect that ET exacerbates anything else you have. That wonky blood feeds all your other organs, after all.

There are many folks here well into their 70s who feel great with ET! I'm not one of them right now, but I do work at maintaining perspective and not being a trial to myself and others. I wish there were more long-timers here to talk about long-term effects of ET, but glad to share with newer patients if that's helpful.