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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nohrt4me (Jean) | @nohrt4me | Oct 31, 2022

In reply to @cajunqueen "Hey there! A little update for you all....after taking 500 mg of Hydroxyurea daily for 3..." + (show)

Hemos seem to be better at HU dosing. Someone in my cancer group years ago was hit with a high dose of HU right off the bat because his platelets were over 1,000. He had leg pains and other distress and ended up in the ER. He was fine as soon as the dose was lowered.

The thinking now seems to be to start patients on a lower dose, maybe 500 mg 3x per week, and increase as needed.

I have CALR mutation. Started HU 5 years ago. Platelets went from a high of 800s to 600s over a year at 500 mg per day. Next year it was upped to 500 mg per day plus an extra dose 3x per week. Stable in the 400s for four years now.

Less fatigue, fewer headaches and visual distortions on the HU. I do yoga and exercise bike (my bike to nowhere) to try to keep circ going. I am 68, with onset at age 55.

sherna09 | @sherna09 | Oct 30, 2022

In reply to @colleenyoung "@sherna09, welcome. Are you able to wean off coffee since it is a trigger for you?" + (show)

Yes but I do crave it at times .

Pumpkin1 | @pumpkin1 | Oct 30, 2022

In reply to @colleenyoung "Welcome, @penmueller1. It looks like you are signed in because you were able to post. :-)..." + (show)

Colleen, I have no symptoms other than some fatigue. I am taking aspirin as prescribed by Dr. My concern about starting Hydrea is how it will affect my quality of life at this stage. If I had some other more obvious symptoms that debilitated me, I would consider it perhaps. But, truthfully, I feel very lucky to have lived to 80 with relatively good health, and I will be very thankful for whatever time I have left without taking a chemo drug that could affect my every day life. If I were in my 60s, I might feel differently.

Colleen Young, Connect Director | @colleenyoung | Oct 30, 2022

In reply to @sherna09 "Hi my name is Sylvia and I also was diagnosed with high blood platelets about I..." + (show)

@sherna09, welcome. Are you able to wean off coffee since it is a trigger for you?

Colleen Young, Connect Director | @colleenyoung | Oct 30, 2022

In reply to @pumpkin1 "Not certain this is going to post as I still don’t have a password , so..." + (show)

Welcome, @penmueller1. It looks like you are signed in because you were able to post. 🙂

What are your concerns about starting Hydrea? What symptoms of ET do you have?

sherna09 | @sherna09 | Oct 29, 2022

In reply to @misty45 "Hi shenriq, I have been taking Hydrea for 20+ years for ET. It keeps my platelet..." + (show)

Hi my name is Sylvia and I also was diagnosed with high blood platelets about I think 6 months again . Dr also prescribed hydroxy urea generic brand name (hydrae)I had about 1750high platelets It’s down around 540 at one point 380 . I am so confused as to be taking this medication . I asked what caused this to appear and she said she does not know . I notice that when I drink regular sugar , coffee it triggers my body and I get pain all over like kind of swelling pain if that makes any sense . I drink baby aspirin as well . I sometimes think I need a second opinion for I’m afraid taking hydrea might give me another form of cancer … Mysty I live in Austin now but my home town is El Paso …I’m here for you all .. u all are not alone ..

Pumpkin1 | @pumpkin1 | Oct 29, 2022

Not certain this is going to post as I still don’t have a password , so this will be brief. I am 80 yrs old and this year was diagnosed with ET. Platelet count has varied between 525 and 625 this past year. My hematologist wanted me to take Hydrea, 500 mg twice a day. I am hesitant to start at this stage of my life and also because my platelet count is not as high as many. I am told I have the JAK2. I have not had a bone marrow biopsy and it hasn’t been suggested. Any thoughts?

create | @create | Oct 29, 2022

In reply to @dancouclanel4 "Feel your pain - i had the same whirlwind experience - good metaphor. :-) Certainly, get..." + (show)

Thank you....I will take your advice.

dancouclanel4 | @dancouclanel4 | Oct 29, 2022

In reply to @create "Recently diagnosed with essential thrombocythemia and primary myelofibrosis with MPL mutation. Blood transfusions and iron infusions..." + (show)

Feel your pain - i had the same whirlwind experience - good metaphor. 🙂
Certainly, get another opinion while reaching out to support group such as The Leukemia & Lymphoma Society, 3 International Drive, Suite 200, Rye Brook, NY, 10573 keeping notes along the way of what works or doesn't work for other people - then share with your oncologist. Be sure you share with your primary doctor as well. ALWAYS research any new drug you are prescribed to ensure it doesn't impact in a negative way what their trying to accomplish. Good luck and hang in there 🙂

Lori, Volunteer Mentor | @loribmt | Oct 28, 2022

In reply to @cajunqueen "Hey there! A little update for you all....after taking 500 mg of Hydroxyurea daily for 3..." + (show)

Hi @cajunqueen ~ So happy to hear some good news from you with the drop in platelets! It’s always encouraging when the meds start working. It sounds like you have a great hematologist keeping tabs and following through with your treatment!
You have a strong sense of faith and that’s a driving force in your life…together with your positive outlook. I think positivity is a super power. ☺️

Keep us updated, ok?

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