Essential thrombocythemia (ET): When to start hydroxyurea (HU)?

Posted by anavleek @anavleek, Apr 9 10:58pm

I was just diagnosed with ET. I am 61 years old. My platelet count is 640k right now.
Doctor suggested I take a baby aspirin everyday and HU. I am hesitant about taking HU. I have heard of doctors waiting till the platelet count is higher to take HU.
Any insight? How bad is HU for your body, I was reading it can cause cancer too.
Thank you

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78 years old here. I was diagnosed with Pre-MPF 2 months ago with platelets at 1.355 million. I was on 2,000 mg Hydroxy for 3 weeks to get them down to 193k. Switched to 1,000 & they zoomed up to 591k quickly.

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I’ve been on Hydroxyurea for 5 mos 500 mg 5 days a week for ETwith positive Jak2 mutation. I was very concerned about taking a chemo pill. In the beginning I did have some headaches, fatigue, and ocassional constipation. Afternoon fatigue is still a side affect, but I plan to start walking to build leg strength. My platelets are now in normal range at 356. After loosing 3 siblings to blood cancer I chose this treatment. Do what is right for you! Trust who you choose to oversee your medical needs. Do your research, this Forum helped me tremendously!! I am 70. I scheduled a conference with my doctor and included my husband and son. Write your list of questions down. Fill your spirit & thoughts with good things. I sit outside in the morning, I love birds and it’s a perfect place for my prayer time. I ‘ll be praying for you.

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Profile picture for cubby13 @cubby13

I’ve been on Hydroxyurea for 5 mos 500 mg 5 days a week for ETwith positive Jak2 mutation. I was very concerned about taking a chemo pill. In the beginning I did have some headaches, fatigue, and ocassional constipation. Afternoon fatigue is still a side affect, but I plan to start walking to build leg strength. My platelets are now in normal range at 356. After loosing 3 siblings to blood cancer I chose this treatment. Do what is right for you! Trust who you choose to oversee your medical needs. Do your research, this Forum helped me tremendously!! I am 70. I scheduled a conference with my doctor and included my husband and son. Write your list of questions down. Fill your spirit & thoughts with good things. I sit outside in the morning, I love birds and it’s a perfect place for my prayer time. I ‘ll be praying for you.

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Yes, mornings on the porch, where I am right now with my herbs, flowers, tomatoes, bees, and birds! Out here even in winter in my puffy coat cuz love the smell of snow! Free cheer-up gifts from Mother Nature.

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Profile picture for christina3444 @christina3444

I’ve been taking it for years now. The pharmacist never mentioned I should not touch the capsules and neither did my hematologist. But, luckily I can read! Before taking the first dose I read the precautions and knew I shouldn’t touch! So, I “poured” two capsules, my dose, into the cap and toss them into my mouth followed immediately by water. I can’t be bothered by putting on gloves. I call them my “poison pills”!
No mouth sores.

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That's how I take mine, too. Mouth full of water to make a nonstick surface, then throw the cap full of meds in and chug a full glass of water.

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Isnt essential thrombocytopenia a diagnosis of too few platelets? I dont understand people with high numbers having this diagnosis and treatment.

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Profile picture for tsch @tsch

Isnt essential thrombocytopenia a diagnosis of too few platelets? I dont understand people with high numbers having this diagnosis and treatment.

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My platelets ran 450-565 for several years. Then, they spiked to 706 on my June bloodwork. That's when my doc started the hydroxyurea. 2 weeks later dropped back to 450, then lowered my dosage to one 500mg once a day.

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Profile picture for tsch @tsch

Isnt essential thrombocytopenia a diagnosis of too few platelets? I dont understand people with high numbers having this diagnosis and treatment.

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Essential thrombocythemia is having too many platelets.

Thrombocytopenia is the term for having too few platelets.

Tongue-twisting, isn't it?

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Profile picture for cubby13 @cubby13

I’ve been on Hydroxyurea for 5 mos 500 mg 5 days a week for ETwith positive Jak2 mutation. I was very concerned about taking a chemo pill. In the beginning I did have some headaches, fatigue, and ocassional constipation. Afternoon fatigue is still a side affect, but I plan to start walking to build leg strength. My platelets are now in normal range at 356. After loosing 3 siblings to blood cancer I chose this treatment. Do what is right for you! Trust who you choose to oversee your medical needs. Do your research, this Forum helped me tremendously!! I am 70. I scheduled a conference with my doctor and included my husband and son. Write your list of questions down. Fill your spirit & thoughts with good things. I sit outside in the morning, I love birds and it’s a perfect place for my prayer time. I ‘ll be praying for you.

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My last labs came in with 320 platelets. I'm also 70, but no family history of blood cancers. I have a very knowledgeable doctor who counsels and referred me to an oncologist who treated his father. I have RA, osteoporosis and systemic scleroderma that first flared up in 2014. Recently my doc suspected an internal bleed and sent me to a Mayo trained gastrointestinal doc. She did find a hiatal hernia a month ago. 8 cm and angry. So, more meds in the arsenal to hopefully curtail surgery to repair
it. Before then, I had no medical issues. I've been on prednisone daily to keep mobile and relatively pain-free. Getting old sucks, but at this juncture it sure beats the alternative !

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Profile picture for janemc @janemc

Essential thrombocythemia is having too many platelets.

Thrombocytopenia is the term for having too few platelets.

Tongue-twisting, isn't it?

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Per the Mayo Clinic, thrombocytosis is having too many red platelets. What I read says thrombocytopenia is too few. Conditions ending in penia I think refer to a lower amount of something, for example ostopenia in too little bone density. Maybe I am wrong and I am not familiar with Essential Thrombocytopenia, but it is contradictory to me. You write thrombocythemia. Oops just reread and I see spell diff and I do agree with you. It looks like others have misspelled the condition too. Thanks for clarifying.

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Profile picture for tsch @tsch

Per the Mayo Clinic, thrombocytosis is having too many red platelets. What I read says thrombocytopenia is too few. Conditions ending in penia I think refer to a lower amount of something, for example ostopenia in too little bone density. Maybe I am wrong and I am not familiar with Essential Thrombocytopenia, but it is contradictory to me. You write thrombocythemia. Oops just reread and I see spell diff and I do agree with you. It looks like others have misspelled the condition too. Thanks for clarifying.

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Oh, it gets better!

Thrombocytosis means having too many platelets; that can have a variety of causes.

Thrombocythemia is more specific, referring only to those of us whose bone marrows produce too many platelets.

No wonder we get headaches as we try to learn more about our diagnosis!!!

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