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Is anyone involved in clinical trials for ET, specifically for CALR?
Blood Cancers & Disorders | Last Active: 1 day ago | Replies (86)Comment receiving replies
Ì have been taking hydroxurea and ĥave had severe reactions: severe vomiting and what my hematologist calls "not common" side effects. Have tried Anagrelude but the side effects were worse. Has anyone tried the Besremi or Jakifi previously mentioned?
Replies to "Ì have been taking hydroxurea and ĥave had severe reactions: severe vomiting and what my hematologist..."
@flannery
Hello Friend, I am sorry you are experiencing such difficulties with HU
I WAS ON IT AND DID NOT HELP ME TO REDUCE MY SYMPTOMS FROM PV POLYCYTHEMIA VERA
YES I DID TAKE JAKAFI
I BELIEVE IT IS MUCH BETTER TOLERATE ! I liked TAKING IT ! So SPEAK WITH YOUR DOCTOR ABOUT JAKAFI! I would SUGGEST STARTING ON LOWER DOSE FIRST
I TOOK IT FOR ABOUT TWO YEARS BUT MY DOSE WAS TOO HIGH !
It brought ALL MY BLOOD NUMBERS LOWER THAN I WANTED ! So got off !
I AM ON OJJAARA NOW FOR TEN MONTHS !
Good drug VERY VERY EXPENSIVE BUT I HAVE NOW ALTERNATIVE !
Good luck 🍀
Best wishes
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@flannery I was on Jakafi for about 5 years; started this after HU no longer liked me after about 4 years on it. For me it has mostly just been increasing fatigue on Jakafi that is most troublesome for me - is this due to disease, Jakafi, both???
Good luck on your journey and hope you find a treatment that fits you.