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@nohrt4me

Not to be Nellie Negative, but ET is only an "inconvenience" if a) you are being treated and monitored by a competent hematologist, b) you follow advice and the treatment works without side effects, and c) you develop no co-morbidities.

Thrilled for those who feel great. But that isn't everyone's story, especially for those who have med side effects, more severe fatigue or frequent migraines, enlarged spleen, or co- morbidities. No one should feel they're a slacker if they need to slow down a bit.

I'm 70, CALR+ x 15 years, well-controlled on meds x 6 years. Looking at mitral valve repair, severe scoliosis. I feel pretty good, but I have to pace myself.

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Replies to "Not to be Nellie Negative, but ET is only an "inconvenience" if a) you are being..."

79 CALR + for 3 months and improving with meds so far. Lab update today...Had not had a CBC for more than 4 years...then this popped up with move and new PCP. I was shocked and very anxious , felt let down by my body. In retrospect can id subtle symptoms and a feeling something "had changed....something wrong" during extended intense stressful caregiving for my late husband. Adjusting to meds .....noting some intense fatigue at times, but relieved with rest. Learning that dosing and meds is more of an art and balancing act than just science. Feel lucky I have a PCP who knew to refer to specialist and getting a hematologist I feel I can trust.