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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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nohrt4me | @nohrt4me | 1 day ago
In reply to @nancyra "Wow! So fortunate you had no long term effects from the stroke. It makes me wonder..." + (show)
@nancyra

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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Good observation. My only insight is that specialists tend to keep their attention narrowly focused. Doctors work for big health care systems that run patients thru like an assembly line. Your GP is often the best person to take these concerns to. My old GP was good about putting notes to my other docs in the e-chart. She has retired, and I hope the new one is as alert.

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1995victoria | @1995victoria | 19 hours ago

I'm much older. I was diagnosed almost 4 years ago. My father had elevated platelets which were thought to be from a symptom of aortic abdominal aneurysm, Then he had a stroke. When my platelets kept increasing for 3 years I went to hematologist who diagnosed ET. So I decided to take a chance on HU (hydroxyurea) with baby aspirin. My platelets have been nicely within normal range since I began medication, but I admit, I wonder what HU is doing to my body, but my fear of a stroke or heart attack keep me taking my capsules. I have blood tests every 3 months to make sure this blood cancer doesn't advance to a more risky one in the MPN group (myeloproliferative neoplasm). I try to keep up with advances in the MPN group of blood cancers

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2 replies
panamsandy | @panamsandy | 19 hours ago
In reply to @1995victoria "I'm much older. I was diagnosed almost 4 years ago. My father had elevated platelets which..." + (show)
@1995victoria

I'm much older. I was diagnosed almost 4 years ago. My father had elevated platelets which were thought to be from a symptom of aortic abdominal aneurysm, Then he had a stroke. When my platelets kept increasing for 3 years I went to hematologist who diagnosed ET. So I decided to take a chance on HU (hydroxyurea) with baby aspirin. My platelets have been nicely within normal range since I began medication, but I admit, I wonder what HU is doing to my body, but my fear of a stroke or heart attack keep me taking my capsules. I have blood tests every 3 months to make sure this blood cancer doesn't advance to a more risky one in the MPN group (myeloproliferative neoplasm). I try to keep up with advances in the MPN group of blood cancers

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What does your doctor say about stopping the HU? My platelets are 553 (I was just diagnosed this week) and am on the baby aspirin.

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1 reply
panamsandy | @panamsandy | 18 hours 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! I'm sure that was scary but am so happy to hear you had no side effects. I have a positive JAX2. Each day is a blessing.

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snowcohn | @snowcohn | 18 hours ago
In reply to @1995victoria "I'm much older. I was diagnosed almost 4 years ago. My father had elevated platelets which..." + (show)
@1995victoria

I'm much older. I was diagnosed almost 4 years ago. My father had elevated platelets which were thought to be from a symptom of aortic abdominal aneurysm, Then he had a stroke. When my platelets kept increasing for 3 years I went to hematologist who diagnosed ET. So I decided to take a chance on HU (hydroxyurea) with baby aspirin. My platelets have been nicely within normal range since I began medication, but I admit, I wonder what HU is doing to my body, but my fear of a stroke or heart attack keep me taking my capsules. I have blood tests every 3 months to make sure this blood cancer doesn't advance to a more risky one in the MPN group (myeloproliferative neoplasm). I try to keep up with advances in the MPN group of blood cancers

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What is your dosage of HU? I was diagnosed on April 8, 2025. I am currently on 500 mg three times per week. My oncologist will be raising it to 4 times per week as I get adjusted to it. My negative side effects have been insomnia and brain fog. Anyone else experiencing this?

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1 reply
1995victoria | @1995victoria | 11 hours ago
In reply to @panamsandy "What does your doctor say about stopping the HU? My platelets are 553 (I was just..." + (show)
@panamsandy

What does your doctor say about stopping the HU? My platelets are 553 (I was just diagnosed this week) and am on the baby aspirin.

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no stopping......if my platelets are in normal range it's goodHU working......wouldn't want platelets back in millions....I don't want to risk stroke or heart attack

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1 reply
panamsandy | @panamsandy | 10 hours ago
In reply to @1995victoria "no stopping......if my platelets are in normal range it's goodHU working......wouldn't want platelets back in millions....I..." + (show)
@1995victoria

no stopping......if my platelets are in normal range it's goodHU working......wouldn't want platelets back in millions....I don't want to risk stroke or heart attack

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I don't blame you. Any side effects from the HU?

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lynnebgraham | @lynnebgraham | 9 hours ago
In reply to @snowcohn "What is your dosage of HU? I was diagnosed on April 8, 2025. I am currently..." + (show)
@snowcohn

What is your dosage of HU? I was diagnosed on April 8, 2025. I am currently on 500 mg three times per week. My oncologist will be raising it to 4 times per week as I get adjusted to it. My negative side effects have been insomnia and brain fog. Anyone else experiencing this?

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Have had ET for over 17 years. Now on HU 500 mg every night with 500 mg every second morning. Started 2nd January, 2025. After bone marrow test, found I am triple negative. Platelets were over 1000 slowly going down now 613. Saw hematologist last week, staying on above as they are going down, see him again 6 weeks. I am 73 so symptoms, fatigue have afternoon nap, 1 to 2 hours. Sleep is okay, brain fog possibly just getting older, way too much information being stored in brain, so it gets a bit clogged up sometimes. lol.

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