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@nohrt4me

How are you doing with the MF? Any change in treatment protocols? I have ET-CALR x 17 years, HU x 6 years. I understand CALR makes me somewhat more likely to develop MF, tho there seem to be genetic variables within CALR mutations that are still not well understood. But my hemo explained that anybody with ET will progress if they live long enough. Thanks for sharing your experiences. It's helpful to know how these things play out for others over decades. So many on here are very newly diagnosed, dealing with that initial shock, and cannot (yet) identify with us long-termers.

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Replies to "How are you doing with the MF? Any change in treatment protocols? I have ET-CALR x..."

I was taking Jakafi for a year and my numbers weren’t changing actually getting worse and I was getting blood transfusions. He decided to put me on Vonjo and I did really well for 6 months. Then the diarrhea began. I had to drop back to 3 pills daily. So not on full dose for past 5 months. Also was low in folic acid so starting supplementing. 2 months into taking folic acid stools are more formed now.