Essential Thrombocythemia, MPN

By CommunityMemberf2ab50

1 min read

I was told that since I had a high platelet count, I would be perfect to be a platelet donor. I donated platelets every 3 weeks for several years. At one point, I was told that my count was so high that I was unable to donate. I went to the doctor shortly after, and he sent me to a hematologist. He ran more tests and found I have the JAK2 mutation and diagnosed me with Essential Thrombocythemia or ET.

I was told that this is a very rare form of blood cancer and that "watch and wait" was the protocol for this particular form of cancer. Since the disease was rare, I wanted the input of someone with expertise. I went to a doctor at Weil/Cornell NY Presbyterian since they have an entire department dedicated to MPNs. I was given a bone marrow biopsy to ensure that this was a correct diagnosis. I was put on Pegasys interferon in hopes that it would delay the progression to a more serious cancer such as Myelofibrosis or leukemia.

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Lisa70 Member
I too have ET and take chemo meds (hydroxyurea 500MG), 6 days a week. I was diagnosed almost 2 years ago but pretty sure I’ve been living with it for numerous years. I say that because about 15 or so years ago I got PE’s which are pulmonary embolisms in my lungs and almost died. Now looking back I’m pretty sure it was attributed to having ET, it only makes sense. Anyhow I do research regarding my condition all the time and still for some reason fall short of knowing much about it or even understanding it. I know I’m extremely tired all the time annd occasionally get nauseous and throw up. I’m also very constipated as well but I’m sure that maybe from the meds. Anyone that can give me a little more insight to this disease or talk to me about their symptoms I’d surely appreciate it. Thanks so much hope everyone is healthy and happy holidays. Much love ❤️ 
1. Dennis Golden Moderator
 <inline-mention username="Lisa70" user-id="8876936"/>: Constipation is a topic that is often downplayed as many suffer the opposite reaction. . Thanks to CHEMO, I experienced significant blockage issues that required hospitalization and surgery. After that, I learned to consume more liquid. My body size is 6 ft 170 lbs, and I require between 70+ oz of water daily, combined with a fiber supplement. We are all different, so it often takes time to understand what works for each of us. Being tired was also a challenge. While counterintuitive, I found spending time outside and walking helped quite a bit. I hope others can join in here and offer additional insights. Dennis(Blood-Cancer.com TEAM)
lyric Member
I experience all that is talked about in the article. The chronic constipation, the chronic nausea and the severe pain that radiates in my lower back, through my buttocks and down both legs. The pain is so bad it makes it difficult to walk. I was first diagnosed with Essential Thrombosytthemia (ET). I was on hydroxurea also. My body became immuned and it didn’t work for me after a few years of being on it. My organs began to shut down. I remember having to go on dialysis for several months and then my kidneys started back functioning. Thank God. ❤️🙏🏽 After being in the hospital several months, I was able to go home but not without a lot of care. I learned to walk, personal hygiene and turning myself over in bed. It was a difficult time, but I did it with the grace and mercy of God.