1. < Blood Cancers & Disorders

Anyone else find the side effects of Hydrea 500MG frightening?

Posted by eddb @eddb, Oct 1, 2023

I was diagnosed with having a blood cancer that looks and acts a lot like Polycythemia Vera (PV) about 6 years ago. I’ve been rolling along ok with (mostly monthly) phlebotomies, until a year or so ago. At that point my white blood cells and (most importantly) my platelet levels started to increase. The doc did a 2nd bone marrow extraction but I STILL tested negative for PV. After a CT scan and other tests were done to rule out any possible hidden bodily infections, my doc prescribed Hydrea 500 MG. I filled the script about a week and a half ago…and it is still sitting in a bag on my counter, unopened. I got seriously freaked out when I researched the drug and found all those nasty side effects associated with the drug.

Now, I’m sitting here knowing that my platelet count as of 3 days ago was 987 (over twice the normal level limit) and that I could throw a blood clot at anytime. I was holding off taking the drug, to get an appointment with a hematologist/oncologist for a 2nd opinion, but that appointment isn’t for another 10 days - I’m a nervous wreck! I do not want to take the chance with hydrea but I don’t want to clot. I don’t even have a real diagnosis other than suspicion of bone marrow cancer or the beginning stages of it….

I’d be curious to hear about what others have experienced while on this drug. Much appreciated!

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

licketysplit | @licketysplit | Oct 15, 2023

Newly diagnosed with Chronic Lymphatic Leukemia, How careful do I have to be about infection? Do people use mask and gloves?

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1 reply
lambo1 | @lambo1 | Oct 15, 2023
In reply to @cblowers1 "Interesting to me that your hair has gotten curly on hydrea. My hair, which has always..." + (show)
@cblowers1

Interesting to me that your hair has gotten curly on hydrea. My hair, which has always been very straight, has gotten wavy and curly in the last couple of years. I am in my 70s. I have taken 1000mg hydrea daily since September of 2019 and suspected that was the cause of the change, but had never read of it being a side effect or of anyone having this happen!

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I have never seen this any written formally as a potential side effect, but a couple of people on another chat group I am part of have mentioned it. My hair was always a bit curly, but now it is super curly and it looks better than it every has. Much better than the side effect of thinning hair! So there is no evidence this is because of they hydrea but I can’t think of any other reason.

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cblowers1 | @cblowers1 | Oct 15, 2023
In reply to @lambo1 "I have been on Hydroxyurea for 5.5 years with virtually no side effects (other than my..." + (show)
@lambo1

I have been on Hydroxyurea for 5.5 years with virtually no side effects (other than my hair has become curlier!). I started at 500 mg a day and now only taking this three times a week and my platelets are in the normal range. Within three months of being diagnosed with ET I was also diagnosed with CLL and breast cancer. An overwhelming time to say the least, but things are all stable for now. Skin cancer is also an issue for me, and we know the risk is increased by both the medication and having CLL. But I am active - so far, so good!

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Interesting to me that your hair has gotten curly on hydrea. My hair, which has always been very straight, has gotten wavy and curly in the last couple of years. I am in my 70s. I have taken 1000mg hydrea daily since September of 2019 and suspected that was the cause of the change, but had never read of it being a side effect or of anyone having this happen!

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3 replies
eileen11108 | @eileen11108 | Oct 15, 2023
In reply to @jonisuealan "I’ve been on 1500 mg of hydrea daily for over 3 decades with minimal side effects..." + (show)
@jonisuealan

I’ve been on 1500 mg of hydrea daily for over 3 decades with minimal side effects and a stable platelet count for ET. Diagnosed when I was 20 and I just turned 56! I’m active and overall fairly healthy (except have strep throat now). I tend to pick up everything with this poor immune system… Anyway My doctor wants to switch me to interferon as he says hydrea for that long is not good. However my insurance doesn’t cover much of it. Monthly amount out of pocket is $2500, who can afford that. I’m not sure what to do. Looking for any suggestions. Thanks!!!

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You could try Anagrelide. It reduces platelets. If it is iexpensive on your insurance check Goodrx.com. You can get it fir about $48.00 a month at pharmacies. My doctor even has flyers on this at his office. When you check for price click down to see price at different locations, Then print the coupon.
Best wishes, Eileen

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1 reply
lambo1 | @lambo1 | Oct 14, 2023
In reply to @loribmt "My delightful flavor of blood cancer was Acute Myeloid Leukemia (AML). Came on like a freight..." + (show)
@loribmt

My delightful flavor of blood cancer was Acute Myeloid Leukemia (AML). Came on like a freight train out of nowhere. Within 3 weeks I went from symptomless to one day left on the planet. That was crazy. Anyway intensive chemo and a bone marrow transplant 4 + years ago I am back to feeling ‘fabulous dahling’ as thought nothing ever happened.
So I’m here to help others over their worst fears because it doesn’t matter what statistics say, we don’t have to become one! ☺️

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It sounds like you really had a rough ride but what a great outcome. And hats off for your commitment to be such a support to others. Fear is such a big part of having blood cancer and connecting with others can be so helpful.

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Mentor
Lori, Volunteer Mentor | @loribmt | Oct 14, 2023
In reply to @lambo1 "Thanks for the link to the individual who experienced spontaneous regression. Very interesting, indeed. I get..." + (show)
@lambo1

Thanks for the link to the individual who experienced spontaneous regression. Very interesting, indeed. I get my blood work done every three months and see my hematologist every six. She said this frequency is because I have the two blood cancers, otherwise blood work every six would be okay since I am stable. Where are you at in all this?

Jump to this post

My delightful flavor of blood cancer was Acute Myeloid Leukemia (AML). Came on like a freight train out of nowhere. Within 3 weeks I went from symptomless to one day left on the planet. That was crazy. Anyway intensive chemo and a bone marrow transplant 4 + years ago I am back to feeling ‘fabulous dahling’ as thought nothing ever happened.
So I’m here to help others over their worst fears because it doesn’t matter what statistics say, we don’t have to become one! ☺️

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1 reply
lambo1 | @lambo1 | Oct 14, 2023
In reply to @loribmt "Hi @lambo1, Some of the newer treatments for CLL are amazing. A younger father my neighbor..." + (show)
@loribmt

Hi @lambo1, Some of the newer treatments for CLL are amazing. A younger father my neighbor hood, in his late 30s has CLL. He started a targeted therapy a couple of years ago and just completed a marathon race last weekend!
So the advances in medicine certainly offer hope to so many of us with blood cancers! But you’re right, fingers crossed that you won’t ever need it at all.

It happens! You might be encouraged by this news from @gardeningjunkie with her remission from CLL with no treatment.
~CLL, Spontaneous Regression
https://connect.mayoclinic.org/discussion/cll-spontaneous-regression/
How frequently do you have followup blood work?

Jump to this post

Thanks for the link to the individual who experienced spontaneous regression. Very interesting, indeed. I get my blood work done every three months and see my hematologist every six. She said this frequency is because I have the two blood cancers, otherwise blood work every six would be okay since I am stable. Where are you at in all this?

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Oct 14, 2023
In reply to @lambo1 "I am still in watch & wait with my CLL. My blood counts are high but..." + (show)
@lambo1

I am still in watch & wait with my CLL. My blood counts are high but I don’t have much for other symptoms so I just keep my fingers crossed. I dread (like everybody) the thought of needing treatment but the advances in just the five years since my diagnosis has been amazing.

Jump to this post

Hi @lambo1, Some of the newer treatments for CLL are amazing. A younger father my neighbor hood, in his late 30s has CLL. He started a targeted therapy a couple of years ago and just completed a marathon race last weekend!
So the advances in medicine certainly offer hope to so many of us with blood cancers! But you’re right, fingers crossed that you won’t ever need it at all.

It happens! You might be encouraged by this news from @gardeningjunkie with her remission from CLL with no treatment.
~CLL, Spontaneous Regression
https://connect.mayoclinic.org/discussion/cll-spontaneous-regression/
How frequently do you have followup blood work?

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1 reply
lambo1 | @lambo1 | Oct 14, 2023
In reply to @loribmt "Welcome to Connect, @lambo1 You sure jumped in with both feet having all this medical excitement..." + (show)
@loribmt

Welcome to Connect, @lambo1 You sure jumped in with both feet having all this medical excitement in a short amount of time. I’m happy to see everything is stable now and you’re doing so well.

Thank you for sharing your positive experience with Hydroxurea. Stories like yours can be so reassuring for anyone just starting hydroxy and feeling uncertain about what they’re facing with their new blood cancer diagnosis and having to start a treatment.

Do you take any medication for your CLL?

Jump to this post

I am still in watch & wait with my CLL. My blood counts are high but I don’t have much for other symptoms so I just keep my fingers crossed. I dread (like everybody) the thought of needing treatment but the advances in just the five years since my diagnosis has been amazing.

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1 reply
bevjg | @bevjg | Oct 14, 2023

Believe me, you don't want blood clots in your lungs. That's when I started 500mg Hydrea daily. No side effects!! And I have not had more blood clots.

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