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Living with ET
I have just recently been diagnosed with JAK 2 positive ET and I am only 48. Coming to terms with the “c” word has been difficult. I have started a baby aspirin and have never had a blood clot (thank goodness) my last platelet count was 576, the doctor is pushing Hydroxyurea but I am supper hesitant, don’t know if it is just the chemo word or can’t wrap my head around it. I am wanting to wait until maybe my numbers are a little higher but don’t want to wait too long. I have been noticing more fatigue lately but I am very active so not sure if it is ET or just too much go go go. Any insight from anyone dealing with this would be greatly appreciated
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Fatigue is a symptom of ET among other things. You are pretty young that and a lack of blood clots should factor into your Dr.’s assessment of your risk level. Your doctor should be able to explain why your risk profile would merit starting HU now rather than a “wait and watch” approach. I started on HU when I was 69. I could have waited even at my age, but I had a number of symptoms that were becoming a problem. I am on HU since March, and I feel better. Still have symptoms, but they are better too.
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2 ReactionsI (75 yr) was diagnosed with ET a couple of weeks ago and was started on HU 500mg twice a day. Platlet count was 823. Next week I have another blood test and hopefully will see the platlet count lower. Also positive for the JAK2 mutation. I am on several other meds following a stroke and then a heart attack a couple of years after that. I also suffer from fatigue, but it's hard to draw a direct line to ET as the cause. I think the next step for me is a biopsy; I'll know more next week. Meanwhile i try to enjoy and treasure every day.