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!

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jacklyn | @jacklyn | Jun 29 6:17pm
In reply to @cblowers1 "I have skin only Langerhans cell histiocytosis (LCH), a rare blood disease, chronic myelomonocytic leukemia (CMML)..." + (show)
@cblowers1

I have skin only Langerhans cell histiocytosis (LCH), a rare blood disease, chronic myelomonocytic leukemia (CMML) (an MDS/MPN crossover), and immune thrombocytopenia (ITP). These three rare blood diseases may be related, but it is not known because of a lack of research in rare diseases.
Diagnosed with the painful skin lesions off LCH in 2016, I tried many topical treatments and brachytherapy (radiation) without relief.
After a CBC in 2019 showed a platelets count dangerously low at 2, a bone marrow biopsy showed a diagnosis of CMML. My team of hematologists, and a cutaneous oncologist, decided to try hydroxyurea, often used for LCH and forCMML. It has been a miracle for me. I have had occasional headaches that are gone by 10 or 11am and a weight gain of 8-9 lbs. This is a small price to pay for the relief to the painful skin lesions and stability of my blood counts!
This is a very old medication, from the 1960s, that is commonly used very long term for Sickle cell disease in young people and usually with minimal side effects. If it is beneficial for our chronic blood diseases, we can be grateful. I understand that a few people have side effects that may be serious, but it is generally well tolerated and certainly proven!

Jump to this post

This is so encouraging for me. I have been diagnosed with CMML however they are going to treat me as if I have AML. I have started hydroxy 1000mg in the morning but will have to go up to 2000. I have been on it for a week now. I am going to
Ask if I can take the extra dose at night. My hematologist is also talking about a chemo injection 5 days a week. It was a board of doctors in a big hospital who met and have decided in this treatment. I am 76 yrs old. I originally diagnosed 8 yrs ago with low risk MDS. I read on google that the life span for someone with CMML is 20-30 months. Scary.
I meet with my oncologist Tuesday to discuss it all. I did accelerated chemo 17 yrs ago and radiation for breast cancer.
Apparently this blood cancer has nothing to do with the breast cancer.

REPLY
1 reply
janemc | @janemc | Jun 30 7:33am
In reply to @jacklyn "This is so encouraging for me. I have been diagnosed with CMML however they are going..." + (show)
@jacklyn

This is so encouraging for me. I have been diagnosed with CMML however they are going to treat me as if I have AML. I have started hydroxy 1000mg in the morning but will have to go up to 2000. I have been on it for a week now. I am going to
Ask if I can take the extra dose at night. My hematologist is also talking about a chemo injection 5 days a week. It was a board of doctors in a big hospital who met and have decided in this treatment. I am 76 yrs old. I originally diagnosed 8 yrs ago with low risk MDS. I read on google that the life span for someone with CMML is 20-30 months. Scary.
I meet with my oncologist Tuesday to discuss it all. I did accelerated chemo 17 yrs ago and radiation for breast cancer.
Apparently this blood cancer has nothing to do with the breast cancer.

Jump to this post

You have been through so much.

I wish you weren't facing this challenge.

Please be very good to yourself -- and that can include not scaring yourself with "information" from Google!

Hope you will get strong support from your oncologist on Tuesday.

REPLY
janetbender | @janetbender | Jun 30 7:45am

The listed hydrea side effects ARE scary. I read about essential Thrombocytosis before my first oncology appt. I told my doc I was afraid of the side effects - he said it depends on the dosage.

I take 500mg daily and he said not to expect the worst-listed side effects. Some of his patients with other diagnoses take 9,000mg daily !
I had some side effects which lessened over time.
The good news is my platelet count dropped from 1.1 million to 570k.
My 3 mo visit is coming up and I hope it keeps improving.

I’m not the best person to discuss how I feel since my Long Covid symptoms overlap many ET / hydrea symptoms. Fatigue is my worst symptom.

Most important is my lower platelet count (with other factors - I don’t smoke or drink) means I’m now Low Risk for a stroke or aneurysm.
Good luck!

REPLY
lynnevb | @lynnevb | Jun 30 5:32pm

Good Luck to Everyone on this site. Here is a bit of my story for those who feel alone with their diagnosis.
I am 70 yo and was diagnosed with ET 21 years ago (triple negative). I have been on hydrea 1500mg 3 days a week and 1000 mg four days a week for the past 8 years or so. No side effects except for heartburn and if I take hydrea with a meal the heartburn is not as bad. Sometimes I need tums or pepcid or ginger if the heart burn gets worse.
When I was under age 60 I did not need to be on hydrea. Once I turned 60yo I was in a higher category for stroke so I was started on hydrea. I have been on baby aspirin daily for about 18 years. I have had 2 bone marrow biopsies in total. I am not sure if I have been lucky or I had skilled physicians but the biopsies were not that bad at all. I eat a whole foods diet and stay away from processed foods, keep my weight in the normal range and exercise regularly. I try to life the life I have and be grateful but I do acknowledge that someday I will die. I do have fears of ET transitioning to a worse diagnosis but I try not to dwell in this mindset as I am doing everything I know to be as healthy as I can. I leave in 10 days for a month in europe. My support socks are purchased and I am looking forward to some adventures. Wish me luck and I will check in with you when I return.

REPLY
3 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Jun 30 5:45pm
In reply to @lynnevb "Good Luck to Everyone on this site. Here is a bit of my story for those..." + (show)
@lynnevb

Good Luck to Everyone on this site. Here is a bit of my story for those who feel alone with their diagnosis.
I am 70 yo and was diagnosed with ET 21 years ago (triple negative). I have been on hydrea 1500mg 3 days a week and 1000 mg four days a week for the past 8 years or so. No side effects except for heartburn and if I take hydrea with a meal the heartburn is not as bad. Sometimes I need tums or pepcid or ginger if the heart burn gets worse.
When I was under age 60 I did not need to be on hydrea. Once I turned 60yo I was in a higher category for stroke so I was started on hydrea. I have been on baby aspirin daily for about 18 years. I have had 2 bone marrow biopsies in total. I am not sure if I have been lucky or I had skilled physicians but the biopsies were not that bad at all. I eat a whole foods diet and stay away from processed foods, keep my weight in the normal range and exercise regularly. I try to life the life I have and be grateful but I do acknowledge that someday I will die. I do have fears of ET transitioning to a worse diagnosis but I try not to dwell in this mindset as I am doing everything I know to be as healthy as I can. I leave in 10 days for a month in europe. My support socks are purchased and I am looking forward to some adventures. Wish me luck and I will check in with you when I return.

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Have a fabulous trip and thank you for posting such an encouraging note for others who are concerned about taking hydrea for their blood conditions. Keeping a positive mindset is so important to a happy and well-lived life. Are you touring several European countries or settling in one location?

REPLY
mikemp | @mikemp | Jul 1 8:39am

Been on the drug for a month and no side effects. You have to think of the other things that can happen if you don't take the drug.
I was also scared of the long list but not taking it was scarier.

REPLY
jackiecarey | @jackiecarey | Jul 1 12:30pm

I have documented (JAK2 positive) PV and on hydrox..I understand your fear and there are many side effects listed..I was frightened, too but as time went on, on the drug I didn't have the side effects as listed.. I was fatigued for sure but that can be the disease itself..Ive been on hydrox since oct 1, 2023, as time went on my Hematologist tailored the drug to me. After all was said and done I realized my attitude (not referring to you, my experience) was my worst enemy.. Now I take the drug with food and a full glass of water in the evening and forget it. Once I developed a plan on how I would take the drug , exercise is crucial if you can, even a little, healthy diet, drink 90 0z of water a day (check with your doctor) changed my attitude to a more positive approach and distract myself with getting on with life. I'm much happier...I stopped letting the drug have the control.I'm not saying I don't think about it but I'm in control..After all ,we can live a long time with PV (many years even decades)with the right care ..We are far better off than many others with cancer including the drug we're offered. If you trust your Doctor then my recommendation is do as they say....Let me know how you're getting on..It's always better if you have someone to talk with who's on the same journey.

REPLY
jacklyn | @jacklyn | Jul 1 12:43pm
In reply to @lynnevb "Good Luck to Everyone on this site. Here is a bit of my story for those..." + (show)
@lynnevb

Good Luck to Everyone on this site. Here is a bit of my story for those who feel alone with their diagnosis.
I am 70 yo and was diagnosed with ET 21 years ago (triple negative). I have been on hydrea 1500mg 3 days a week and 1000 mg four days a week for the past 8 years or so. No side effects except for heartburn and if I take hydrea with a meal the heartburn is not as bad. Sometimes I need tums or pepcid or ginger if the heart burn gets worse.
When I was under age 60 I did not need to be on hydrea. Once I turned 60yo I was in a higher category for stroke so I was started on hydrea. I have been on baby aspirin daily for about 18 years. I have had 2 bone marrow biopsies in total. I am not sure if I have been lucky or I had skilled physicians but the biopsies were not that bad at all. I eat a whole foods diet and stay away from processed foods, keep my weight in the normal range and exercise regularly. I try to life the life I have and be grateful but I do acknowledge that someday I will die. I do have fears of ET transitioning to a worse diagnosis but I try not to dwell in this mindset as I am doing everything I know to be as healthy as I can. I leave in 10 days for a month in europe. My support socks are purchased and I am looking forward to some adventures. Wish me luck and I will check in with you when I return.

Jump to this post

Wishing you a wonderful and happy vacation. This will be do good for your soul.

REPLY
1 reply
jacklyn | @jacklyn | Jul 2 1:17pm
In reply to @jacklyn "Wishing you a wonderful and happy vacation. This will be do good for your soul." + (show)
@jacklyn

Wishing you a wonderful and happy vacation. This will be do good for your soul.

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Wishing you the best vacation E. V. E. R. !!!!

REPLY
jacklyn | @jacklyn | Aug 6 7:17pm
In reply to @cblowers1 "I have skin only Langerhans cell histiocytosis (LCH), a rare blood disease, chronic myelomonocytic leukemia (CMML)..." + (show)
@cblowers1

I have skin only Langerhans cell histiocytosis (LCH), a rare blood disease, chronic myelomonocytic leukemia (CMML) (an MDS/MPN crossover), and immune thrombocytopenia (ITP). These three rare blood diseases may be related, but it is not known because of a lack of research in rare diseases.
Diagnosed with the painful skin lesions off LCH in 2016, I tried many topical treatments and brachytherapy (radiation) without relief.
After a CBC in 2019 showed a platelets count dangerously low at 2, a bone marrow biopsy showed a diagnosis of CMML. My team of hematologists, and a cutaneous oncologist, decided to try hydroxyurea, often used for LCH and forCMML. It has been a miracle for me. I have had occasional headaches that are gone by 10 or 11am and a weight gain of 8-9 lbs. This is a small price to pay for the relief to the painful skin lesions and stability of my blood counts!
This is a very old medication, from the 1960s, that is commonly used very long term for Sickle cell disease in young people and usually with minimal side effects. If it is beneficial for our chronic blood diseases, we can be grateful. I understand that a few people have side effects that may be serious, but it is generally well tolerated and certainly proven!

Jump to this post

Hi there: can I ask how old you are and what dosage you are taking. I have been diagnosed with CMML and I am 76 and my doctor put me on hydroxy 2(500)mg after my white cell count was 50. After the first week my count came down to 24. Second week it came down to 14. My oncologist couldn’t believe my blood tests and how good everything was. It has been 3 weeks now and I go for blood work tomorrow. I went on vacation. I have never felt better since being on this drug. I hope they lower the dosage.
I have more energy now than before. I did read the life span of someone with CMML is 20-30 months. How long have you had CMML.

REPLY
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