1. < Blood Cancers & Disorders

Essential Thrombocythemia: Looking for information and support

Posted by shenriq @shenriq, Jun 4, 2018

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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uky654 | @uky654 | May 4, 2023
In reply to @nohrt4me "Just curious about why you can't have knee injections (cortisone?) until your platelets were stable. I..." + (show)
@nohrt4me

Just 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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I 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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biddypoppop | @biddypoppop | May 5, 2023

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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2 replies
nohrt4me | @nohrt4me | May 5, 2023
In reply to @biddypoppop "I have been taking HU for 9 years w/o a problem until recently. I have developed..." + (show)
@biddypoppop

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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Can you tell us what dose you take and what the suspected problems with HU are?

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hariom1961 | @hariom1961 | May 6, 2023
In reply to @biddypoppop "I have been taking HU for 9 years w/o a problem until recently. I have developed..." + (show)
@biddypoppop

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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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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jewelfaux | @jewelfaux | May 18, 2023

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?

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1 reply
klcc | @klcc | May 18, 2023
In reply to @jewelfaux "I'm taking 1500mg of HU daily along and 325mg aspirin. I'm 74, have ET Jak2. My..." + (show)
@jewelfaux

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?

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I’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.

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1995victoria | @1995victoria | May 19, 2023

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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ortho3 | @ortho3 | May 19, 2023

I’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 replies
eileen11108 | @eileen11108 | May 20, 2023
In reply to @ortho3 "I’m taking 1000mg HU/ day + 81mg aspirin. It’s only been a little over a month,..." + (show)
@ortho3

I’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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Sounds 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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mjpm2406 | @mjpm2406 | May 20, 2023
In reply to @ortho3 "I’m taking 1000mg HU/ day + 81mg aspirin. It’s only been a little over a month,..." + (show)
@ortho3

I’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!

Jump to this post

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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