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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eileen11108 | @eileen11108 | Apr 10, 2023

In reply to @jackt00 "I took my first HU pill yesterday. Within 2 hrs, hi got a terrible headache and..." + (show)

Hi jackt00,

How was your visit with the hematologist? I hope you are adjusting to HU. Any headaches or dizziness?

Eileen

Marilyn McFarland | @1942marilyne | Apr 5, 2023

I am having problem with statins. Upset stomach and leg pains

jewelfaux | @jewelfaux | Apr 5, 2023

In reply to @sand103 "I have been on full dose aspirin due to a stroke in 2018! Elevated platelets in..." + (show)

That is good to know. Thank you. I haven't had a stroke or heart attack but did have double vision, vertigo and headaches before being diagnosed with ET.

nohrt4me | @nohrt4me | Apr 4, 2023

In reply to @jewelfaux "Most on this site say that they are prescribed baby aspirin along with HU. I was..." + (show)

I take a baby aspirin, but I have heard from others that they take one regular strength aspirin.

There are alternatives if you are worried about aspirin side effects. If it bothers your stomach, ask if you can lower the dose and take enteric-coated?

sand103 | @sand103 | Apr 4, 2023

I have been on full dose aspirin due to a stroke in 2018! Elevated platelets in 900’s now. I started close to month ago on hydroxurea 1000 mg. I have been fine on aspirin

jewelfaux | @jewelfaux | Apr 4, 2023

Most on this site say that they are prescribed baby aspirin along with HU. I was diagnosed with ET, Jak2, in October of 2022. I was put on full dose (325mg) aspirin immediately and now also take 1000 mg daily HU to try to bring down my 700 platelets. I have been taking full dose aspirin for 6 months. Is this common? I'm concerned about aspirin complications.

eileen11108 | @eileen11108 | Apr 3, 2023

In reply to @trustfaith4 "I was diagnosed with ET about 2 years ago and since then doing labs every 3..." + (show)

Platelets can change daily with what is going on in your body, Should they still be elevated you could possibly ask your hematologist if you could start with low dose Hydroxyurea…some take it just three days a week. You can always increase dose later. If you do start to take it remember to drink minimum 64 ounces of fluid to flush toxins.

Eileen

trustfaith4 | @trustfaith4 | Apr 2, 2023

I was diagnosed with ET about 2 years ago and since then doing labs every 3 months. My Dr. Told me early on if my platelet count rose to 500 I would need Hydrea. After 2 recent bouts of covid 108 days apart my count went to 551. We will recheck in 30 days to see if they have gone down. I would like to know if anyone else has experienced elevated platelets after covid. I am deeply concerned about possibly going on this medication. So, I would
Appreciate anything you can share about your experience.
Since it is so rare does anyone know of a cancer center that is more knowledgable than others.
I am trying to gain all the knowledge I can about ET.
Thank for any and all information.

Lori, Volunteer Mentor | @loribmt | Apr 1, 2023

In reply to @loribmt "Good morning, @faithbeatrice. That’s one of the hardest moments in a parent’s life…when your little one..." + (show)

Hi @faithbeatrice, it’s been several weeks since you wrote in about your daughter not feeling well. I’m hoping her condition has improved. How is she doing?

eileen11108 | @eileen11108 | Mar 25, 2023

Jackt00,

Did you drink minimum of 64 ounces of fluid that day? it is really necessary to flush toxins out of your body. Did you discuss with your hematologist taking two different chemo medications at the same time?

Eileen

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