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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'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?
I have been taking HU for 9 years w/o a problem until recently. I have developed several health issues that may have been caused by the meds.
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1 ReactionI don't know the answer to that and will definitely ask my hemo at my appt next week. Thanks for your comments.
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1 ReactionJust curious about why you can't have knee injections (cortisone?) until your platelets were stable. I have scoliosis and can foresee a time when I need shots at some point, so would be grateful to have more info.
Hope your hemo will communicate with your ortho about this.
I find that the ET itself isn't a big deal except for the fatigue, but it complicates all your other ailments.
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1 ReactionI have no pain or anything else with Hydrea, 500 mg daily. My platelets were 800,000 now in low 400s. I am JAK2 positive.
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1 ReactionWas diagnosed with ET and JAK2 positive. Have been taking Hydrea 500mg and 81mg baby aspirin - both daily. In general, have good days and bad days something pretty normal when you are in your 70s. At times I do feel extra nauseous. My additional challenge is that I was scheduled to have Total Knee replacement in February which was cancelled due to ET and I cannot get injections until platelets are stable. My platelet level has been in the 500s for about 2 years. In January, I started bruising in my legs and my PCP referred me to my hematologist. I started Hydrea in March (with platelet level of 633) and after 2 weeks it went down to 486 and 2 weeks after that it went up to 531. After reading all the posts...this variation is to be expected. Last night I had such severe burning type pain from my hips down to knees ... feeling better after taking Celebrex. But I really, minimally need a knee injection. I am seeing my Hematologist next week and will discuss my concern. Has anyone felt the pain I described? - it may have just been my osteoarthritis.
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