← Return to Essential Thrombocythemia: Looking for information and support

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@lynnevb

I have a similar diagnosis. At 49 yo I was diagnosed with ET. I am 69 now. So I have had it for 20 years. In the past few years I was found to be triple negative in gene mutations. I have been on hydroxuria for the past 10 years. The dose varies but mostly 1000-1500 mg per day. Platelets hover around 600,000 to 800,000. The docs seems comfortable with this. I take an aspirin 81 mg daily. My advice is keep moving, stay well hydrated, eat healthy, limit alcohol and see an expert in this rare condition. I occasionally go the Mayo in Arizona to see Jeanne Palmer MD. I get my blood drawn once a month and see a local oncologist every 6 months. Good Luck. I will send you an excellent resource.

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Replies to "I have a similar diagnosis. At 49 yo I was diagnosed with ET. I am 69..."

I am interested in resources for ET. I am newly diagnosed with ET and PV. All info is appreciated.

Thanks so much for the info Lynn! 20 years is a long time. I have just been on hydroxyurea for almost 3 months with 1000 mg per day. The counts now come down to low 500 now which I already appreciate while my doctor want to see it to stabilize at low 400. Just want to share. Have experienced some side effects (sensitive and itchy skin at the joints, fatigue, long recovery time, maybe some depression). I was very active outdoors doing cycling and hiking. Now I have learned to mend and adjust with reduced activities. I am in San Diego CA and will appreciate any resources info.