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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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?

cajunqueen | @cajunqueen | Oct 28, 2022

Hey there! A little update for you all....after taking 500 mg of Hydroxyurea daily for 3 weeks, my platelets came down around 60 points, but it is still in the 780 range, so my Hematologist is having me take 500 mg 6 days a week and 1000 mg once a week (on Saturdays) for 4 weeks and will do labs in November to see where my platelets are again. She will then tweak the meds again, depending on what my body does with the extra dose once a week. Thank you for your comments and health updates and 'medical drama', as Lori stated above! Let's continue posting about our journeys in this season of our lives to help each other with positive vibes and shining His light in all that we do, because He has each and every one of us in the palm of His hands.
Blessings,
Tifnie Queen

create | @create | Oct 22, 2022

Thank you for your response....waiting on iron results to see if it too has gone up. I hope so.

molliz | @molliz | Oct 22, 2022

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

My iron is low and to not disturb my blood count that came down on there own my doctor canceled the iron infusion and put my on every other day iron pills and tested after 3 months ferritin came up slightly and other 2 numbers fell down and platelets slightly raised above normal. Odd same happened with you. I wish I could help. It’s very c

create | @create | Oct 22, 2022

Recently diagnosed with essential thrombocythemia and primary myelofibrosis with MPL mutation.
Blood transfusions and iron infusions due to no iron in bone marrow and very low hemoglobin. Still in a whirlwind. Platelet count keeps climbing, currently 1060. Taking 81 aspirin daily. Meeting again with hematologist on Monday. Not sure what next steps will be or what to ask. Any advice?

susanflower | @susanflower | Oct 21, 2022

In reply to @cajunqueen "@loribmt thank you so much for your kind words! Made me tear up....because you are so..." + (show)

I’ve done the very same thing, tonight

kathy5brothers | @kathy5brothers | Oct 12, 2022

In reply to @nohrt4me "I've been on HU, 500/day + extra 500 on M/W/F for four years. Next hemo appt..." + (show)

Just keep asking your hematologist about how the Hydrea is effecting your other labs.

biyashiekh | @biyashiekh | Oct 6, 2022

hey . i am abiha 18 years old diagnosed by ET with JAK2 mutation and have bud chiary syndrome. i have an enlarged liver and spleen. and went through a venoplasty but it only opened one my my three hepatic veins. well i am good now taking medicines and its been 5,6 months but now a days i feel strange and worried. i am here if any one with a similar situation share their experience and yeah for some moral support.

kathy5brothers | @kathy5brothers | Oct 4, 2022

In reply to @huronshores "@Huronshores High platelets, no clue until routine blood test. Saw Haematologist, on Hydroxyurea since May/18 and..." + (show)

@huronshores

@huronshores
High platelets, no clue until routine blood test. Saw Haematologist, on Hydroxyurea since May/18 and took about 3 months to lower platelets. 78 yrs old, active and reasonably healthy .. Some allergies, well controlled asthma and have had two past surgeries for sinus polyp problem. Polyps are treatable but not curable. Since an infection could affect platelets, I saw a specialist re sinuses. He said I may need another surgery to help with existing polyps but did not seem to think it was cause of high platelets. (However, in doing a bit of reading I have seen some studies that say people with sinus polyps show higher platelets?). Very hard to say what is correct. Also, asked whether diet could lower platelets somewhat. Haematologist said definite no. However, again in doing some reading, there is info that says certain foods can lower platelets. I am not happy to be taking Hydroxyurea, as while it can be used for high platelets, it sounds like it affects pretty well all cells in your body. Certainly have noticed side affects and all seem to match up with the info the drug store provided with the Hydroxyurea. So far the Haematologist has pooh poohed all side affects. I have another appointment coming up soon, so another blood test re platelets. Still thinking and not sure what I am going to do about this but not happy taking Hydroxyurea forever. No one wants to have a possible stroke, thrombosis etc as a result of high platelets .. But at the same time, Hydroxyurea can lead to other problems. Sort of like taking your car to the garage to get get new tires so that you will drive safely but then the wheels fall off! I am speaking only for myself here and not saying you or anyone else should follow my thinking. Part of me is influenced by my age and that makes me wonder if my remaining quality of life is going to be affected too much by the medication. I have a neighbour that told me she has been taking Hydroxyurea for years but I don't know the exact facts involved for her. I have been pretty lucky health wise and have not needed much medical care over the years, as compared to others in my age group. Did have one problem where I exactly listened to a Doctor against my judgment and that turned out to be a disaster. So forever after, I will be questioning and trying to pick up all the information I can on medical issues. Guess I am a doctors nightmare. Don't know if anything here helps but I am just sharing my experience so far.

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Hi there. I’m 74 and have been on hydroxyurea for 25 years. I had a TIA, Mini stroke when my platelets were in the 900 range.
That’s when they put me on Hydroxyurea. I was told early on that there are downsides to taking this drug, but I felt that the prospect of having heart attacks and strokes we’re not an option.
My white count and hemoglobin are low, which makes me tired.
Find it hematologist that you trust and take advice from that doctor. Otherwise you’ll get way too many opinions.

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