Essential thrombocythemia

Since there is no cure for Essential Thrombocythemia, and it is a progressive disease, why are doctors not prescribing bone marrow transplants when it appears to be the only real cure. From what I've understood Hydroxyurea is very dangerous and can demkae, in the long tern, develope my ET into acute leukemia. Also why do some doctors call this chronic leukemia and some do not?

I was diagnosed with ET in September 2011. I'm now taking Hydroxyurea and doing fine most of the time, although, I do have periods of severe exhaustion. I was wondering if anyone has had a bone marrow transplant or if they are considering the option? I haven't discussed this with my oncologist and was just wondering if anybody knew of soeone that had gone through this.

My daughter is now 10 years old and was diagnosed with ET when she was 9. Her platelet level was up to about 1.6 million and is now on hydroxyurea. I was just wondering if any one else has had experience with this disease in such a young child. I am very uncomfortable with her being on this medication and the disease itself since it is so rare, especially in children. Any info would help.

Hi mabehl. I have not had any experience with a child as you are with your little girl, however have myself have had problems with a blood clotting disorder, My advice to you would be to make sure that you have a really good haemotologist and a good g.p. both I have and have so found this to be a great help to me over the past years. You will be in my thoughts and prayers, always here anytime if you need to talk Piglit

I just got diagnosed with ET and am 65 years old. I am nervous about taking the hydroxy which has been prescribed for me. My count is 830. How are you doing on this medicarion

I have had ET for about four years and have been on Anagrelide the entire time. Also take 325 mg of asprin since having a heart attack two years ago. My medication is adjusted with each visit to the doctor according to my platelet counts. I am wondering if anyone out there has problems with bruising with their ET? I had shoulder surgery two months ago and still feel like I am bruised deeply and having trouble doing PT because of it. Also, does anyone know if taking ibprofine can lower platelet count? Was taking ALOT of it after got off pain med from surgery and my platelet count was actually low for the first time. My hemotologist said that wasn't what affected it. Any knowledge on the above would be appreciated.

Have you had Side effects taking the Hydrea?

I was misdiagnosed at the VA Hospital with ET in December of 2018. Didn't believe a word the VA Hematologis told me ao I went to Sloan and had a bone marrow aspiration and molecular panel done. The final diagnosis is MDS/MPN-RS-T. Also JAK2, SRSF2 and SFB31 positive. I've been on Hydrea and 81 mg aspirin since January 2019. No problems with the Hydrea or the aspirin.

I am 62 years old. I was diagnosed with ET a year ago and I am JAK2 mutation positive. I have no symptoms of having ET other than I am a little bit heat intolerant when going out in hot weather but that could be my age. I take one full strength aspirin every morning which I have for about the last 10 years for aches and pains. Last year when diagnosed My doctor/hematologist oncologist told me to Just keep taking the full strength aspirin. My platelets are in the 500 range. The last time I went to the doctor he wanted me to start on Hydrea. Since this is a chemo and a carcinogen I was hesitant to start on it so I am going to A MPN specialist at Simon cancer center in Indianapolis. The reason my doctor wanted to start me on Hydrea was because my HCT number was in the 45.8 to 47 range and he said that made me high risk for blood clots along with the high platelets. However I have been on super B complex vitamin and three vitamins a day that had Large amounts of B vitamins that will make your red blood cells (Hemoglobin) and your HCT higher (percent of red blood cells in your blood). So I have stopped taking all B vitamins and I want to see what my HCT is without taking the B vitamins before I go on chemo and also I want to get a second opinion. I recommend going to an MPN specialist first and see what he thinks about the chemo. Best wishes

I read that bone marrow transplants are Only for the MPN myelofibrosis I have not heard ET called chronic leukemia. I don’t think that’s right. It could turn into leukemia and I think Hydrea increases The chances of that happening For some. I am not a doctor.