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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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I am 92 and just three weeks ago found problems as a result of a routineCBC. My platelet count is 10, hemoglobin 8.9, white cell 3.0, red cell 2.6, hemacrit 28. At my age, what is my new life expectancy?
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3 ReactionsI also have MDS/MPN with RS and T.
My platelets shot up to 1,100 in March. Started taking HU 1000 mg a day 7 days a week.
By May my platelets were down to 300. I'm now taking 500mg every other day.
I haven't felt any side effects and am glad the HU worked so well as it is the treatment with the least number of side effects.
I take a 500mg Hydrea tablet 5 days per week and two 500mg tablets on Tuesdays and Fridays. Also a daily 81mg Aspirin. I’ve been on this regimen for five years. My platelet count was easily over 1,000 when I was diagnosed with MDS/MPN-RS-T. On the MPN side my symptoms mirror ET. My platelet numbers now fall in the 300-400 zone so I’m good. Fatigue is an issue but a 30 minute Power Nap every day fixes that problem. Once you get your medicine regimen finalized you’ll probably start feeling better and your Oncologist will most likely stretch out your lab schedule. I used to get labs every two weeks in the beginning. Then once a month after my numbers stabilized. Now I’m on a 6 week schedule.
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4 ReactionsSounds like your fatigue has leveled off. That was a great response to HU. Hope it continues and you can lower .your dose,
Eileen
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5 ReactionsI’m taking 1000mg HU/ day + 81mg aspirin. It’s only been a little over a month, and platelet count has dropped dramatically (700 to 425). I’m 76, have been reluctant to take HU before. I have an appointment with my oncologist on Monday, and hope to adjust the dosage. No side effects that I am aware of!
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2 ReactionsI've been between 400-500 on 1,000 HU and 81aspirin......but a week after 2nd shingles shot my platelets dropped to 250, then 6 weeks latter 297,,,,Monday I have my next test, so we'll see, this is my 3rd year.
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1 ReactionI’m 77 and my count is around 695. I take 500 mg of Hydrea 2 times a week with a low dose aspirin every day.
I'm taking 1500mg of HU daily along and 325mg aspirin. I'm 74, have ET Jak2. My last platelet count was 630. Anyone else taking this much HU and aspirin?
What are the issues as me even taking HU 500 daily and ecosprin 75 mg for past 8 months but all these body has accepted & adjusted . Was keen to know what side effects you observing and what’s your age
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3 ReactionsCan you tell us what dose you take and what the suspected problems with HU are?