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Essential Thrombocythemia: Looking for information and support
I was recently diagnosed with Essential Thrombocythemia, a rare incurable blood cancer. Platelet count aside, I am asymptotic. This current condition morphed from (constitutional) thrombcytosis, something I’ve lived with for 25+ years. While the new diagnosis was the result of a bone marrow aspiration and biopsy, my age was an additional factor, which was completely disarming, having been walking around unwittingly for the past 8 years! While at the low end of risk for clots, heart-attacks and stroke, nothing has truly changed - except the “C” word. No chemo yet, but active discussion about hydroxyurea. Uncertainty about ET is anxiety provoking and swoethatl, but I’m feeling betrayed by my blood. I’m looking for all information about ET, the chemo and support.
Thanks!
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Two years on Hydroxy and my energy level is low though that may be due to other meds but my suspicion is Hyd, Hard to know if it's mid 70's age?
Hello Marylynda...I too have ET and have fatigue. Like you, the fatigue used to be extreme but I have been on Hydrea for three years having it increased recently and slowly the fatigue lessened and my energy increased slightly. It takes time for the hydrea to catch up with the disease. My best advice is to do what you need to do in the morning and save the afternoon for resting.
I think we will always have fatigue so we have to really take care of yourselves. That is all I can say for now.....hope this helps....Claire
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Hi my name is Cathy and I am 74 years old. I have thrombocytosis and have been on hydroxyurea for 20 years.
When my platelet count was almost 1 million, they started the med.
Hydroxyurea like hall chemo will have an effect on your blood work. It’s only been in the last month or two that my white count has dropped along with my hemoglobin.They decreased my Hydroxyurea. Now my plateletsare313.
I'm 68 have had ET for 12 years. Doing ok on hydroxy and aspirin. Fortunately was caught before any clotting events.
I do have abdominal discomfort at times, fatigue is a pain, but I have learned that it improves if you keep moving and learn to plan activities around higher energy times during the day. I don't do mornings or late night things. This was much harder to deal with when my son was still in high school and I was working, and my hat is off to other parents and folks working. Hang in there! Get as much good sleep as you can and stay hydrated.
If I could change just ONE thing at the hematology/oncology office it would be for them to stop asking me to rate my pain and depression on a scale of 1-10, and to instead rate my fatigue levels.
I hate retirement (former English prof), miss my students. The pandemic was hard, but I think we are all doing better now. I am learning to cope with the new normal.
My dad also had ET. His was diagnosed when he had his first clot. He lived to be 82 and died of something else, but ET did pose some quality of life challenges and it does complicate other morbidities.
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3 ReactionsI Linda. I also have ET and have been on Hydroxyurea for over 20 years as well.
Lately it has been playing havoc with my blood counts. My platelets are way down, and my white count and hemoglobin too.
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1 ReactionHello all. I m 61 year old male and just got diagnosed with ET before four weeks and dr put me on Hydroxyurea 500 mg twice a day and one ecosprin 75 mg every day. My platelets are around ten lacs. He asked me to start one tablet of Anagrelide 0.5 mg too but I kept on hold for two weeks as feel Hydroxyurea 500 mg which earlier was just once a day and now started twice a day since last ten days. So waiting for a week more if this can drop platelets count. Will be happy to get views from those who know about this disease ET or those going through similar issues . I walk 5 to 6 kms a day and some yoga too. Overall health is good. Deepak joshi Mumbai ( India )
I am on Hydro and have been for several months. It has done a great job of lowering my platelet count and I am having no side effects. Good luck.
I've been on HU, 500/day + extra 500 on M/W/F for four years. Next hemo appt in a couple weeks. Suggestions for questions I can ask about long-term HU side effects? Thanks!
P.S., Dad had ET also. He had foot ulcer that I think was likely a side-effect, but he was on very high HU doses, maybe up to 2,000 mg/day because platelets were well over 1,000.