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Profile picture for donnadarling @donnadarling

Hi! I'm new here. Happy I found this site! Thanks, all, for sharing your info. I was diagnosed with ET three years ago. Just dipping my toe into learning about and experiencing ET. It's been very stable until recently when numbers started to go a bit wonky. My fantastic "team" at Wilmot Cancer Center suggests hydroxyuria but I was told (by an oncologist!) the side effects are miserable. I'm allergic to aspirin (ulcers) and also have A-Fib so am on Warfarin which also can cause clots and strokes. Xarelto (wow! $$$!) has been suggested instead of Warfarin. Not how I planned to spend my retirement but life has been good, my partner's an angel and my friends are a hoot, so all is good! To you who are bumping heads with anxiety, unknowns, and let's face it FEAR, it sounds like you're doing all the right things and we, out hear, are wishing you well. Does it seem strange that MPNs and genetic cancers showed up about the same time that "forever chemicals" began infesting the world? What kind of research is happening? Enjoy the sunny days! Nice to get to know you!

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Replies to "Hi! I'm new here. Happy I found this site! Thanks, all, for sharing your info. I..."

@donnadarling

Unless an oncologist specializes in ET, she probably knows less about it than those actually living with it. HU can be problematic for some, but I, along with tens of thousands of others with MPNs, sickle cell anemia or throat cancers, am grateful for every therapeutic capsule.

There is so much real life experience being shared here. Make yourself at home!

And thanks for sharing your wonderful positivity!