1. < Blood Cancers & Disorders

Essential Thrombocythemia: Making treatment decisions

Posted by mamsgirl1998 @mamsgirl1998, Jan 27 7:26pm

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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kapow | @kapow | Feb 6 9:08pm

Is a UTI common with ET or Hydroxyurea?

REPLY
memere09 | @memere09 | Feb 7 1:43pm
In reply to @nohrt4me "The only patients I've whose docs allowed them to run platelet levels up to 1,000 were..." + (show)
@nohrt4me

The only patients I've whose docs allowed them to run platelet levels up to 1,000 were young ET-CALR patients. CALR patients like me are lower risk for clots than JAK2s. However, past age 60 or 65, everybody's considered at least moderate risk.

If I were younger and had great insurance, I would certainly try Pegasus!

However, I am 70 and have only been on HU for five years. I should be able to take it for another 15 years without problems, and I don't expect to live nearly that long due to other issues.

I totally agree that docs don't spend enough time with ET patients, and most of them don't hand out pamphlets or links to reputable Web sites. That's really puzzling now that there are so many places to get credible info. Then they complain when patients Google info.

Lack of info is among the worst "side effects" of ET.

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I agree with you about the doctors. I have been on hydrea for 12 years, my only risk factor is I am over 60. I do not take hydrea the way my doctor would like because I get anemia. Consequently, my counts are always 700+. He gets so mad but refuses to hear what that my quality of life is more important to me than being exhausted.
I recently found this forum and it lifts my spirits to read how others are dealing with ET

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1 reply
memere09 | @memere09 | Feb 7 1:55pm
In reply to @healedbytheblood0119 "Hi, Even if it’s not a cure for everyone just knowing it will stop the progression..." + (show)
@healedbytheblood0119

Hi,
Even if it’s not a cure for everyone just knowing it will stop the progression to even worse conditions seems worth it.

Not being scared off by homeopaths but they were real ppl who took one or both those drugs.

The side effects they spoke of even on the 1 pill 500mg a day were harsh. Skin and other cancers, hair and nails falling out, vertigo, etc.

The Anag drug many ppl said they experienced, and their Hemas and MPN Specialists said they likely will and their other patients have gone into A fib and had heart attacks.

The thing is many ppl including myself aren’t waiting but their Hema is saying can take baby aspirin until platelets count reach a million or more, maybe even forever. Said doesn’t matter how high the count but if blood is thinned.

Also the Hemas don’t admit that animal products and vitamins supplements of B12, K, C, D all raise platelets in food and vitamin form. So stressful.

I’ve witnessed this personally and am now having to go back vegan bc of it.
Was 625 platelet count vegan (likely for years undiagnosed) then was told animal products could help so tried and as of Dec 20 the count was 825. Only 3mo after switching to non vegan.

I know it’s even higher since then and don’t go back for blood till March 20.
But changing diet back and stopping multi.

I have yet to meet anyone who has a Hema who spend enough time with them in the appointment. It’s sad but that’s how most mainstream doctors are.

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I have been taking hydrea for ET for 12 years and have never heard of supplements , dairy, etc increasing platelet counts I have a friend who is vegan and I do try to follow some of those guidelines. I will explore that more. Thanks!

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memere09 | @memere09 | Feb 7 1:59pm

I have been taking hydrea for 12 years and only once my count was over 1 million. I take a baby aspirin and 1 500mg capsule per day. If I take more than that I get anemic and am very tired all the time. I try to keep my count below 1 million. I am 72

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1 reply
mamsgirl1998 | @mamsgirl1998 | Feb 7 4:00pm

I went to see the Hematologist today and am going to start Hydroxyurea 500mg daily. I will follow up in 2 weeks with repeat labs and a visit. I hope this works for me.

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1 reply
lusting | @lusting | Feb 7 8:25pm
In reply to @memere09 "I have been taking hydrea for 12 years and only once my count was over 1..." + (show)
@memere09

I have been taking hydrea for 12 years and only once my count was over 1 million. I take a baby aspirin and 1 500mg capsule per day. If I take more than that I get anemic and am very tired all the time. I try to keep my count below 1 million. I am 72

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I have CLL I am taking ACYCLOVIR 400mg. Q12 H and CALQUENCE. 100mg. Q12 H.
Should I be doing any thing else in the way of treatment ?
I will turn 89 in July. Yikes !

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1 reply
jewelfaux | @jewelfaux | Feb 8 5:27am

I am 75 years old, have ET and am currently taking 1500mg of hydroxyurea daily with an 81mg aspirin. I was diagnosed just over a year ago. My platelets have only dropped by a hundred and are in the 600's. It was suggested possibly adding anagrelide. Any suggestions, comments, or personal experiences that you can offer?

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3 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Feb 8 7:38am
In reply to @lusting "I have CLL I am taking ACYCLOVIR 400mg. Q12 H and CALQUENCE. 100mg. Q12 H. Should..." + (show)
@lusting

I have CLL I am taking ACYCLOVIR 400mg. Q12 H and CALQUENCE. 100mg. Q12 H.
Should I be doing any thing else in the way of treatment ?
I will turn 89 in July. Yikes !

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Welcome to Connect, @lusting! You made me chuckle with your, Yikes! I had one of those birthdays this year too that made me say Yikes when I saw the number. But that’s all it is, right…Age is just a number! As long as we’re healthy and not pushing daisies up from the underside life is good!

The best news is that you are going to be 89 and still enjoying life. Having CLL is a chronic condition and you are proof that whatever meds your doctor has for your treatment is working. Members in the forum can’t diagnose or offer treatments so I’d stick with what’s working for you!

We have some good discussions with other CLL members. Here’s a link to get you started.

CLL leukemia: Just diagnosed, what can be done?
https://connect.mayoclinic.org/discussion/cll-leukemia/
How many years ago were you diagnosed with CLL?

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eileen11108 | @eileen11108 | Feb 8 7:55am
In reply to @jewelfaux "I am 75 years old, have ET and am currently taking 1500mg of hydroxyurea daily with..." + (show)
@jewelfaux

I am 75 years old, have ET and am currently taking 1500mg of hydroxyurea daily with an 81mg aspirin. I was diagnosed just over a year ago. My platelets have only dropped by a hundred and are in the 600's. It was suggested possibly adding anagrelide. Any suggestions, comments, or personal experiences that you can offer?

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A daily dose of 1500 mg Hydroxyurea seems pretty high. I would suggest a consult with an MPN specialist.
Best wishes, Eileen

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nohrt4me | @nohrt4me | Feb 8 9:46am
In reply to @jewelfaux "I am 75 years old, have ET and am currently taking 1500mg of hydroxyurea daily with..." + (show)
@jewelfaux

I am 75 years old, have ET and am currently taking 1500mg of hydroxyurea daily with an 81mg aspirin. I was diagnosed just over a year ago. My platelets have only dropped by a hundred and are in the 600's. It was suggested possibly adding anagrelide. Any suggestions, comments, or personal experiences that you can offer?

Jump to this post

Dad (who also had ET) was on both HU and anagrelide for a time in his 70s. His platelets were stubbornly high, and he had developed DVT (clots) in his legs.

I think that nowadays, docs might be inclined to try alternatives like Pegasys or Jakafi instead of increasing the older drugs, assuming that you can afford the co-pay.

It might also be a good time to get a second opinion on where you are with disease progression.

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