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 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

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.

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

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?

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.

Marilyn McFarland | @1942marilyne | Apr 5, 2023

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

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

mariaherrero | @mariaherrero | Apr 11, 2023

Me diagnosticaron Trombocitemia esencial. Tengo protesis mamarias hace 20 años. Queria saber si alguien ha investigado sobre el sindrome de Asia. quizas pueda estar provocando alteraciones en la medula.

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jackt00 | @jackt00 | Apr 14, 2023

In reply to @eileen11108 "Hi jackt00, How was your visit with the hematologist? I hope you are adjusting to HU...." + (show)

Hello Eileen. Thanks for checking up on me. I actually had an appointment with my hematologist on April 10 at that time. My platelets came down from 610 to 534 which was good as I was only on HU for two weeks. I had a great conversation with my hematologist and he also set up a meeting with the hospital pharmacist. We are having a conversation over the phone on April 17. So far, I haven’t experienced any side effects except for that first day of use and I am very thankful for that!

eileen11108 | @eileen11108 | Apr 14, 2023

In reply to @jackt00 "Hello Eileen. Thanks for checking up on me. I actually had an appointment with my hematologist..." + (show)

Jack…that is great news.

After selling our condo we came drove back from Florida on March 17. It was a very stressful time. I saw my hematologist ten days later. My platelets were 581, headaches much less. She decided to let me have a longer break from HU until I see her again in a month….I am on Eliquis so less worry about clots.

Best wishes, Eileen

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