I was treated for ET for more than 20 years. Could not tolerate Hyderabad so was on anagrelide. When it stopped working, they found the JAK mutation and I was put on Jakafi. Thats when my diagnosis changed to myleofibrosis. I also had chemo and radiation (twice) and always wondered if the radiation had some link to this. Its been 3 plus years on Jakafi . My platelets were great once I went on Jakafi but my red blood cells are affected and I am very anemic. It’s a roller coaster ride always evolving but being positive is the best thing for me. I just try to do my best, listen to my body and go about my day. Best of health to you

i saw Dr. Stone when I was at Dana Farber. He and my hemotologist here in Florida agree that I should just stay on Anagrelide and Hydroxyurea....at least for now. We are checking my spleen and doing bloodwork once a month. I guess I've just kinda decided that I have to adjust to being tired all the time {makes me feel very lazy} and my heart rate goes up with doing very little, also have alot of gassiness and bloating {feels like my abdomen will explode sometimes}. Most times when I take my meds it takes me all morning to do nothing, don't feel like doing much but we own a restaurant and lounge so I force myself to get up there around 5 and usually am home between 9/10. I don't look sick so it's hard for people to understand and when I do talk about it, I feel guilty because there are so many more people out there who are suffering terribly and I shouldnt complain. Hope you are doing well

Hi Lynne, I was at Dana Farber in Boston in June 2022 preparing for a stem cell transplant. The procedure was done in October 2022 and I’m still in the recovery part. My immune system is still low and my Hemoglobin remains low which has me requiring 2 units of RBCs every week. I went back for a stem cell boost and my counts are getting better but I’m still requiring 1 unit every 2-3 weeks. My Dr is Corey Cutler and I really like him. He is keeping me positive about the length of this process. He doesn’t use the words “if this works”…. He will say “ when this starts to work”. I’m hoping you are doing well.

Bless you
Cathy

Hi there. I was diagnosed back in 2005 with ET and took Agrilyn and Hydroxyurea. In 2020 I was admitted to hospital bcuz my immune system went down to zero. ET progressed to Myleofibrosis, got back on track medwise and they wanted to do a bone marrow transplant, even had a donor ready for me but I decided to get second opinion. It was the start of covid and I didn't want to go through all of it (especially since no promise it would work) and I'd be all by myself....away from home, no visitors, etc. Got second opinion in Boston (I live in Florida) and they said I was responding to meds fine and looked and felt fine enough so advised not to go through all of it, at least not at this time. Lately, I have been more and more tired, get headaches, don't eat alot (small meals throughout the day, can't do regular meals), just don't feel right all the time. I'm going back to Boston sometime next week, hoping to find out if maybe its time to try a different med or something. I was wondering if maybe Jakafi would help, not sure but plan to ask anyway.

So you have no idea when it developed into MF. It all is scary and I appreciate all the time you take to answer my questions!!!