1. < Blood Cancers & Disorders

Essential Thrombocythemia: Making treatment decisions

Posted by mamsgirl1998 @mamsgirl1998, Jan 27, 2024

I have ET and was diagnosed 2 years ago. I am 50 Years old and my latest platelet count was 1,183,000. I only take a baby aspirin daily. My hematologist said I could try Hydroxyurea if I wanted. I am low risk and at first I didn’t want to take it. My platelet count continues to climb. I am thinking about trying the medication. Anyone else tried it? Any ill side effects?

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my44 | @my44 | Mar 25 11:19am
In reply to @skossaz "I have been taking hydroxyurea for 6 months and seem to be resistant as my platelets..." + (show)
@skossaz

I have been taking hydroxyurea for 6 months and seem to be resistant as my platelets keep rising. My doc upped dose to 1000mg 4 days a week and 500 3 days a week.
I also take low dose aspirin. I try to exercise swim and walk but I am fatigued and cannot be as active as I have been. I am 85 years old. Grateful as I have an excellent cancer doc. I have had breast cancer twice, skin cancer that invaded the nerve and now ET. Radiation twice and meds for 12 years. An attitude of gratitude keeps me happy to be alive. I am blessed with a wonderful family.

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Hi, @skossaz. Welcome to Mayo Connect! I love your attitude of gratitude despite all that you've been through and continue to go through. You are an inspiration to me. 💕

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janemc | @janemc | Mar 25 4:05pm
In reply to @vivoconte "Hola, tengo 42 años y hace 10 que tomo hidroxiurea! En términos generales estoy bastante bien,..." + (show)
@vivoconte

Hola, tengo 42 años y hace 10 que tomo hidroxiurea!
En términos generales estoy bastante bien, los efectos secundarios más notorios son la fatiga diaria, la caída del cabello (tengo cabello pero muchísimo menos que antes) y la sensibilidad al sol que la noté en los últimos dos años.
El resto todo ok.
Saludos.

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Thank you for sharing your experience, vivoconte!

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janemc | @janemc | Mar 25 4:09pm
In reply to @skossaz "I have been taking hydroxyurea for 6 months and seem to be resistant as my platelets..." + (show)
@skossaz

I have been taking hydroxyurea for 6 months and seem to be resistant as my platelets keep rising. My doc upped dose to 1000mg 4 days a week and 500 3 days a week.
I also take low dose aspirin. I try to exercise swim and walk but I am fatigued and cannot be as active as I have been. I am 85 years old. Grateful as I have an excellent cancer doc. I have had breast cancer twice, skin cancer that invaded the nerve and now ET. Radiation twice and meds for 12 years. An attitude of gratitude keeps me happy to be alive. I am blessed with a wonderful family.

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Sometimes it seems to take forever to find your effective dose of HU.

When the HU finally tamps down the manic overproduction of platelets, you should get your energy back. Hang in there!

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beebo | @beebo | Mar 26 12:01am

I have been on it for about 4 years and have had no issues with it since I started.
I’m taking it for polycythemia and my dosage and frequency ( currently 500mg 4x week) has done a good job of stabilizing my blood count #’s.

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1pearl | @1pearl | Mar 26 10:19pm
In reply to @skossaz "I have been taking hydroxyurea for 6 months and seem to be resistant as my platelets..." + (show)
@skossaz

I have been taking hydroxyurea for 6 months and seem to be resistant as my platelets keep rising. My doc upped dose to 1000mg 4 days a week and 500 3 days a week.
I also take low dose aspirin. I try to exercise swim and walk but I am fatigued and cannot be as active as I have been. I am 85 years old. Grateful as I have an excellent cancer doc. I have had breast cancer twice, skin cancer that invaded the nerve and now ET. Radiation twice and meds for 12 years. An attitude of gratitude keeps me happy to be alive. I am blessed with a wonderful family.

Jump to this post

Hi skossaz,
I am so glad you are happy and doing well although your platelets are rising. Honestly, I really do not worry about my platelets and mine are high too and probably have been for years. I have no underlying health concerns or previous issues other than two nonpainful enlarged joints. I just take aspirin but I do understand clots are a concern although I am only CALR mutation. I have never taken Hydrea and resist until I feel it is necessary as it just kills all blood cells as is cytotoxic. It doesn’t slow progression to Myelofibrosis. I am grateful to God that I feel fine and have no symptoms. Yes, you are older than I am and I may change lots when I am a bit older, but I am glad we both have an attitude of gratitude with positivity around us with our families.
Stay positive and happy!

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2 replies
kapow | @kapow | Mar 27 11:33am
In reply to @1pearl "Hi skossaz, I am so glad you are happy and doing well although your platelets are..." + (show)
@1pearl

Hi skossaz,
I am so glad you are happy and doing well although your platelets are rising. Honestly, I really do not worry about my platelets and mine are high too and probably have been for years. I have no underlying health concerns or previous issues other than two nonpainful enlarged joints. I just take aspirin but I do understand clots are a concern although I am only CALR mutation. I have never taken Hydrea and resist until I feel it is necessary as it just kills all blood cells as is cytotoxic. It doesn’t slow progression to Myelofibrosis. I am grateful to God that I feel fine and have no symptoms. Yes, you are older than I am and I may change lots when I am a bit older, but I am glad we both have an attitude of gratitude with positivity around us with our families.
Stay positive and happy!

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I am glad you are taking aspirin, and have no other significant health issues. Clots are a common concern for sure. I was what I considered healthy, exercising at the gym 3-5 times a week, playing golf in the summer, kayaking at the cottage, etc., etc. But then without notice I had a small stroke as a result of a 'humungous' blood clot in my carotid. It was only after this that I found out I had ET (MPL mutation) so just a little warning for you.

I am grateful the stroke left no significant after effects.

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2 replies
hudson2019 | @hudson2019 | Mar 30 10:56am

Hi Been on HU For 14Months So Far ok no Side effects platelets Where 1000now 567other Blood Counts ok so Far

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skossaz | @skossaz | Apr 2 9:38am
In reply to @1pearl "Hi skossaz, I am so glad you are happy and doing well although your platelets are..." + (show)
@1pearl

Hi skossaz,
I am so glad you are happy and doing well although your platelets are rising. Honestly, I really do not worry about my platelets and mine are high too and probably have been for years. I have no underlying health concerns or previous issues other than two nonpainful enlarged joints. I just take aspirin but I do understand clots are a concern although I am only CALR mutation. I have never taken Hydrea and resist until I feel it is necessary as it just kills all blood cells as is cytotoxic. It doesn’t slow progression to Myelofibrosis. I am grateful to God that I feel fine and have no symptoms. Yes, you are older than I am and I may change lots when I am a bit older, but I am glad we both have an attitude of gratitude with positivity around us with our families.
Stay positive and happy!

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Thank you for your comments.You help to keep me inspired. I try to stay in the moment and no worry about my platelets!♥️

REPLY
panamsandy | @panamsandy | 3 days ago

I'm a 75 year old healthy woman. I had a small clot in my big toe a few months ago. After a few more blood tests, I was diagnosed with ET...platelete count was 553. After speaking with my hem/oncologist for the first time today (I was diagnosed today) and after doing a lot of research already (thank goodness for the internet) I'm not as freaked out as I had been waiting for the call from the hem/oncolgist! I can deal with this diagnosis. I can take a daily baby aspirin and count my blessings that I have no symptoms...knock on wood. I will still be grateful for every day I'm here...symptom-free. I'm glad I found this site to be able to ask questions and learn from all the answers. This is a great site!

REPLY
nancyra | @nancyra | 2 days ago
In reply to @kapow "I am glad you are taking aspirin, and have no other significant health issues. Clots are..." + (show)
@kapow

I am glad you are taking aspirin, and have no other significant health issues. Clots are a common concern for sure. I was what I considered healthy, exercising at the gym 3-5 times a week, playing golf in the summer, kayaking at the cottage, etc., etc. But then without notice I had a small stroke as a result of a 'humungous' blood clot in my carotid. It was only after this that I found out I had ET (MPL mutation) so just a little warning for you.

I am grateful the stroke left no significant after effects.

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Wow! So fortunate you had no long term effects from the stroke.
It makes me wonder why hems do not make stroke assessment testing part of diagnosis of ET as risk of stoke is what is of concern!
Good advice for all of us with ET to request a carotid artery test and coronary calcium score . These tests are painless.
Your story is a good example of why all of us should request these tests. I had to beg for mine….

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