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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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Profile picture for rivieramaya2009
rivieramaya2009 | @rivieramaya2009 | 1 day ago
In reply to @diannerk "@rivieramaya2009 Thank you! Yes, I am lucky it is recognized today and there is an answer..." + (show)
Profile picture for diannerk @diannerk

@rivieramaya2009 Thank you! Yes, I am lucky it is recognized today and there is an answer to the problem. And good luck with your on-going health. What is MF? I'm new to all this.

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@diannerk MF is the abbreviation for Myelofibrosis. It is one of three diseases that are MPN’s (myeloproliferative Neoplasms. MF being the most serious. Take care!

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Profile picture for diannerk
diannerk | @diannerk | 1 day ago
In reply to @rivieramaya2009 "@diannerk In 1992 or 93 I was diagnosed with ET. My platelets were 1.5 million and..." + (show)
Profile picture for rivieramaya2009 @rivieramaya2009

@diannerk In 1992 or 93 I was diagnosed with ET. My platelets were 1.5 million and no side effects from disease. Hydrea was able to get them down to 400k. Another drug came on the market Agrylin, which the doctor thought might be a safer drug. Took it for a few years. Dr was retiring and told him since my blood counts were normal that I was not going to take any more meds. This was before high platelets were classified as cancer! They called it a blood disorder. For at least 20 years, my platelets remained normal until Jun 2025 when I was diagnosed with MF. Hopefully, you’ll do well with this drug since it’s been on the market for years. Wishing you well.

Jump to this post

@rivieramaya2009 Thank you! Yes, I am lucky it is recognized today and there is an answer to the problem. And good luck with your on-going health. What is MF? I'm new to all this.

REPLY
1 reply
Profile picture for jbcl
jbcl | @jbcl | 5 days ago

So sorry to hear about your hip and ankle injury. That has the be so painful and frustrating. Praying all goes well with the CBC check. I was on Hydroxyurea for one month before the first check..... don't be discouraged if the numbers have not changed ...they will!

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scienceteacher | @scienceteacher | 5 days ago
In reply to @jbcl "I am 71 and taking a daily aspirin and 500 mg of Hydroxyurea. I have been..." + (show)
Profile picture for jbcl @jbcl

I am 71 and taking a daily aspirin and 500 mg of Hydroxyurea. I have been taking the latter med since the end of August. My platelets have dropped from 548 to 335 over the last two months .
I have had no side effects. I am older than you which creates a higher risk for stroke or heart attack, so based on how I feel and no side effects, I will continue on this path. I see the doctor early January.
I continue to go for long walks daily and eat healthy and hydrate.
I prayed about it and feel at peace with my decision, but it is a personal one. Praying you will find the right course for you!

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@jbcl I am also 71 and just started Hydroxyurea 500mg early last week. Tomorrow I will have my first CBC to check for effects. It would be wonderful if I had the same results as you.
I look forward to long walks in the spring as I broke my ankle and hip in March and the surgeon told me it would be a one year recovery. I'm holding him to that!!

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jbcl | @jbcl | 5 days ago

Good for you staying so active!!
I have ET.
And you are do right....a God is in control and has you in His precious hands!

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Profile picture for rivieramaya2009
rivieramaya2009 | @rivieramaya2009 | 5 days ago
In reply to @jbcl "I am 71 and taking a daily aspirin and 500 mg of Hydroxyurea. I have been..." + (show)
Profile picture for jbcl @jbcl

I am 71 and taking a daily aspirin and 500 mg of Hydroxyurea. I have been taking the latter med since the end of August. My platelets have dropped from 548 to 335 over the last two months .
I have had no side effects. I am older than you which creates a higher risk for stroke or heart attack, so based on how I feel and no side effects, I will continue on this path. I see the doctor early January.
I continue to go for long walks daily and eat healthy and hydrate.
I prayed about it and feel at peace with my decision, but it is a personal one. Praying you will find the right course for you!

Jump to this post

@jbcl do you have MF or ET? I’d gladly go back on Hydroxyurea, but have you beat on birthdays 🎉. I’ll be 76 in a few weeks!😊. I’m active and do Pilates 3 days a week and walk everyday. And most importantly am praying. God is in control!

REPLY
Profile picture for jbcl
jbcl | @jbcl | 5 days ago

I am 71 and taking a daily aspirin and 500 mg of Hydroxyurea. I have been taking the latter med since the end of August. My platelets have dropped from 548 to 335 over the last two months .
I have had no side effects. I am older than you which creates a higher risk for stroke or heart attack, so based on how I feel and no side effects, I will continue on this path. I see the doctor early January.
I continue to go for long walks daily and eat healthy and hydrate.
I prayed about it and feel at peace with my decision, but it is a personal one. Praying you will find the right course for you!

REPLY
2 replies
Profile picture for rivieramaya2009
rivieramaya2009 | @rivieramaya2009 | 6 days ago
In reply to @diannerk "Hi all: I'm one month into taking Hydrea 500k mg for thrombocythemia. It was very hard..." + (show)
Profile picture for diannerk @diannerk

Hi all: I'm one month into taking Hydrea 500k mg for thrombocythemia. It was very hard to take the first tab, but getting easier. I am careful with the tabs and will start taking them with a full mouth of water. I don't touch them but take one tab from the cap of the med container.

So far I have no side effects - humble and grateful. But my platelet count has come from 805k down to 557k and I am trying to not have to take more Hydrea, assuming taking more increases my chances for side effects. I am trying visualization to help my med be even more effective.

I love and often copy all the comments I find in this chat group. Many thanks.

Jump to this post

@diannerk In 1992 or 93 I was diagnosed with ET. My platelets were 1.5 million and no side effects from disease. Hydrea was able to get them down to 400k. Another drug came on the market Agrylin, which the doctor thought might be a safer drug. Took it for a few years. Dr was retiring and told him since my blood counts were normal that I was not going to take any more meds. This was before high platelets were classified as cancer! They called it a blood disorder. For at least 20 years, my platelets remained normal until Jun 2025 when I was diagnosed with MF. Hopefully, you’ll do well with this drug since it’s been on the market for years. Wishing you well.

REPLY
1 reply
Profile picture for janemc
janemc | @janemc | Nov 12 8:13am
In reply to @diannerk "Hi all: I'm one month into taking Hydrea 500k mg for thrombocythemia. It was very hard..." + (show)
Profile picture for diannerk @diannerk

Hi all: I'm one month into taking Hydrea 500k mg for thrombocythemia. It was very hard to take the first tab, but getting easier. I am careful with the tabs and will start taking them with a full mouth of water. I don't touch them but take one tab from the cap of the med container.

So far I have no side effects - humble and grateful. But my platelet count has come from 805k down to 557k and I am trying to not have to take more Hydrea, assuming taking more increases my chances for side effects. I am trying visualization to help my med be even more effective.

I love and often copy all the comments I find in this chat group. Many thanks.

Jump to this post

@diannerk
HOORAY for that wonderful drop in your platelet count!

Keep up the good work!

REPLY
Profile picture for diannerk
diannerk | @diannerk | Nov 11 12:37pm

Hi all: I'm one month into taking Hydrea 500k mg for thrombocythemia. It was very hard to take the first tab, but getting easier. I am careful with the tabs and will start taking them with a full mouth of water. I don't touch them but take one tab from the cap of the med container.

So far I have no side effects - humble and grateful. But my platelet count has come from 805k down to 557k and I am trying to not have to take more Hydrea, assuming taking more increases my chances for side effects. I am trying visualization to help my med be even more effective.

I love and often copy all the comments I find in this chat group. Many thanks.

REPLY
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