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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 janemc
janemc | @janemc | Apr 12 7:31am
In reply to @arecchie "You might want to do your homework before saying such things. When you first get the..." + (show)
Profile picture for arecchie @arecchie

You might want to do your homework before saying such things. When you first get the capsules and READ the accompanying literature, it spells out these things. Clearly, you missed that step and THAT is what would be known as nonsense.

Also the Mayo Clinic’s own website cautions to wear disposable gloves when handling Hydrea, but what would they know, right?

Jump to this post

Thanks, arecchie, for reminding us it's better to be safe than sorry.

I need to be more careful.

REPLY
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janemc | @janemc | Apr 11 6:38pm
In reply to @anavleek "My friend has the same thing and her doctor will not prescribe HU until her numbers..." + (show)
Profile picture for anavleek @anavleek

My friend has the same thing and her doctor will not prescribe HU until her numbers reach 800-900.
Doctor said the pill can give you leukemia.

Jump to this post

Well, when untreated, ET can progress to leukemia. That's why it's so important to protect our bone marrow by taking HU.

I hope your friend will seek a second opinion.

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Profile picture for anavleek
anavleek | @anavleek | Apr 11 5:51pm
In reply to @janemc "Hello, anavleek. An ET diagnosis is really scary, especially since you'd probably never realized such whacky..." + (show)
Profile picture for janemc @janemc

Hello, anavleek. An ET diagnosis is really scary, especially since you'd probably never realized such whacky things can happen to our blood.

This forum is where you can learn all about ET and HU. Just use the search bar at the top of this page to find discussions on any question you may have.

As you will see, some people do have side effects from HU.

But for most of us, it's magic.

HU has been used for decades, not just for ET and other blood cancers, but also for sickle cell anemia and some mouth and throat cancers. It is relatively inexpensive and it's widely available.

Did I want to take a chemo drug? No! I was scared to death to take that first capsule.

But as HU began bringing down my platelet count, and giving me my energy back, I started realizing how lucky we are to have a drug that works for us.

When I was diagnosed, my oncologist told me that not only was ET making me exhausted, it was depleting my bone marrow. You have to take this diagnosis seriously. No supplement or diet change will address the mutations that trigger ET. But HU works.

I like to take my HU and aspirin with milk, and I never take meds on an empty stomach.

Please let us know how you're doing. You're among friend here.

Jump to this post

My friend has the same thing and her doctor will not prescribe HU until her numbers reach 800-900.
Doctor said the pill can give you leukemia.

REPLY
2 replies
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anavleek | @anavleek | Apr 11 12:01pm
In reply to @janemc "anavleek, I hope it's helping you to hear from us! We're living proof that HU works...." + (show)
Profile picture for janemc @janemc

anavleek, I hope it's helping you to hear from us! We're living proof that HU works.

Your pharmacist may not know much about HU, because you may be the first person who's ever asked for it. MPNs are really rare. In my little town, neither the pharmacist nor my primary care physician knows anything about ET or HU.

Take your capsule in the way that YOU are most comfortable with. You've gotten some great suggestions already.

I guess I'm a risk-taker! While I always fill my mouth with milk before popping in the capsule, I do take the capsule out of the bottle with my ungloved hands. I've been doing this for 18 months and so far, my fingertips seem fine -- no glowing in the dark.

Jump to this post

Thanks Jane, it is very comforting to have others share their experiences and know you are not alone. I think about it and it’s scary, but I guess if you control the platelet count we are ok.
I still
Haven’t started taking the pill , just getting info to feel comfortable doing so. I have been reading that this is the most common way to reduce the count. Thanks again 🙂 Ana

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anavleek | @anavleek | Apr 11 11:55am
In reply to @eileen11108 "Hi Ana, I have been swallowing my pill the same way for a few years and..." + (show)
Profile picture for eileen11108 @eileen11108

Hi Ana, I have been swallowing my pill the same way for a few years and so far no mouth sores! Eileen

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Thanks Eileen! I still haven’t started. It’s comforting knowing you are ok with it. I am just doing research and getting info to be educated and feel good about taking it .
Thanks again 🙂 Ana

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Profile picture for arecchie
arecchie | @arecchie | Apr 11 11:11am
In reply to @arecchie "You might want to do your homework before saying such things. When you first get the..." + (show)
Profile picture for arecchie @arecchie

You might want to do your homework before saying such things. When you first get the capsules and READ the accompanying literature, it spells out these things. Clearly, you missed that step and THAT is what would be known as nonsense.

Also the Mayo Clinic’s own website cautions to wear disposable gloves when handling Hydrea, but what would they know, right?

Jump to this post

PS. The Mayo Clinic’s own website states to wear disposible gloves when HANDLING Hydrea, due to its toxicity. Last time I checked, they were considered quite reputable if I’m not mistaken…

The effects on your skin may take a while to show, but I wouldn’t chance doing it.

REPLY
Profile picture for arecchie
arecchie | @arecchie | Apr 11 10:58am
In reply to @debhammel "If the pill was dangerous to touch, there would be directions given on how to handle..." + (show)
Profile picture for debhammel @debhammel

If the pill was dangerous to touch, there would be directions given on how to handle it or it wouldn’t be in pill form. This is just nonsense.

Jump to this post

You might want to do your homework before saying such things. When you first get the capsules and READ the accompanying literature, it spells out these things. Clearly, you missed that step and THAT is what would be known as nonsense.

Also the Mayo Clinic’s own website cautions to wear disposable gloves when handling Hydrea, but what would they know, right?

REPLY
2 replies
Profile picture for debhammel
debhammel | @debhammel | Apr 11 8:43am
In reply to @anavleek "Thank you so much for your input. Someone else here said not to touch the pill..." + (show)
Profile picture for anavleek @anavleek

Thank you so much for your input. Someone else here said not to touch the pill because it is highly toxic, that’s a bit scary. It’s a bit strange my pharmacist didn’t even mention that to me. I am a bit scared to take it, but it seems that is the only treatment for it with my age , 61 . Thanks again any input is much appreciated! Ana

Jump to this post

If the pill was dangerous to touch, there would be directions given on how to handle it or it wouldn’t be in pill form. This is just nonsense.

REPLY
1 reply
Profile picture for janemc
janemc | @janemc | Apr 11 8:40am
In reply to @anavleek "Thank you so much for input and your support! It is scary and weird! I guess..." + (show)
Profile picture for anavleek @anavleek

Thank you so much for input and your support!
It is scary and weird! I guess I have really no other choice but to start taking it. I have a friend of mine that has the same thing and her doctor told her to start at a certain number of platelets.
Also, some mentioned HU is very toxic and not to touch it and this person filled their mouth with water then throws in the pill and swallows it, that way the pill doesn’t touch the inside skin of the mouth ?!? That sounds so scary . Thanks again Ana

Jump to this post

anavleek, I hope it's helping you to hear from us! We're living proof that HU works.

Your pharmacist may not know much about HU, because you may be the first person who's ever asked for it. MPNs are really rare. In my little town, neither the pharmacist nor my primary care physician knows anything about ET or HU.

Take your capsule in the way that YOU are most comfortable with. You've gotten some great suggestions already.

I guess I'm a risk-taker! While I always fill my mouth with milk before popping in the capsule, I do take the capsule out of the bottle with my ungloved hands. I've been doing this for 18 months and so far, my fingertips seem fine -- no glowing in the dark.

REPLY
1 reply
Profile picture for eileen11108
eileen11108 | @eileen11108 | Apr 11 7:10am
In reply to @anavleek "Thank you so much for input and your support! It is scary and weird! I guess..." + (show)
Profile picture for anavleek @anavleek

Thank you so much for input and your support!
It is scary and weird! I guess I have really no other choice but to start taking it. I have a friend of mine that has the same thing and her doctor told her to start at a certain number of platelets.
Also, some mentioned HU is very toxic and not to touch it and this person filled their mouth with water then throws in the pill and swallows it, that way the pill doesn’t touch the inside skin of the mouth ?!? That sounds so scary . Thanks again Ana

Jump to this post

Hi Ana, I have been swallowing my pill the same way for a few years and so far no mouth sores! Eileen

REPLY
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