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.

nypara66 | @nypara66 | Aug 8 6:59am

In reply to @pattycz "I was diagnosed yesterday. I picked up the prescription for the dreaded Hydroxyurea 500 and was..." + (show)

Hang in there! Most patients start off with a higher dose that’s needed and they quickly adjust to what is right for you. I have PV and when taking it daily I had some issues. After about six months I’m down to 3X a week and am doing well. It takes time for your body to adjust. My platelets have been just under 500 now for a year and my doctor is fine with that. Give it some time and usually most do very well on this medication. It does its job for sure.

nohrt4me | @nohrt4me | Aug 8 8:40am

In reply to @pattycz "I was diagnosed yesterday. I picked up the prescription for the dreaded Hydroxyurea 500 and was..." + (show)

There are also anagrelide, Pegasys, and Jakafi. Anagrelide has been around a long time, but causes heart issues for some. Peg and Jakafi are newer, it generically available, and stilloff-label for ET, so really expensive and not always covered by insurance. Peg is interferon based and MAY sometimes lead to remission, but has more side effects than HU. Jakafi inhibits the gene that causes ET, but has not turned out to he the godsend everyone thought. Other similar drugs are being tinkered with, and something may come of those. I think it's now mostly used when HU fails.

pattycz | @pattycz | Aug 8 10:50am

In reply to @nohrt4me "There are also anagrelide, Pegasys, and Jakafi. Anagrelide has been around a long time, but causes..." + (show)

thank you kindly for the information. That is helpful

jacklyn | @jacklyn | Aug 8 11:06am

In reply to @loribmt "Hi @jacklyn Wow, I’m so happy to read that you’ve been feeling great since starting the..." + (show)

Hi Lori:
My oncologist is happy with my results. My hemoglobin is 11 went up my white count is now down to 6 and my platelets 98. I was concerned about my platelets coming down however she said she isn’t. She also said all my other blood work is good. She seems surprised. I asked if I could lower the dosage but she said no keep It the same. I am afraid my white count now will go too low. lol. Anyway I go again for another blood test 2 weeks. She is keeping a close watch on me.

Lori, Volunteer Mentor | @loribmt | Aug 8 4:36pm

In reply to @jacklyn "Hi Lori: My oncologist is happy with my results. My hemoglobin is 11 went up my..." + (show)

Hi Jacklyn. You have a great, attentive doctor and when the time is right she’ll reduce your level if necessary. The HU has been really successful in reducing the platelet level! Your WBC at 6 (6.000) is just fine. The norm for females is 4,500 to 11,000. So let her do the worrying for you. 😉
You can sleep peacefully tonight with this good news update!

pattycz | @pattycz | Aug 9 8:29am

In reply to @nypara66 "Hang in there! Most patients start off with a higher dose that’s needed and they quickly..." + (show)

Thank you kindly and best wishes to you

et1055 | @et1055 | Aug 9 11:48am

Hi
I have ET and Jak2 mutation.
I have been on HU for 3 weeks.
My platelets July 18 were 1129
Platelets Aug 1 were 993
I have felt very lightheaded with a fluid like swooshing sensation plus very tired.
The first two weeks the area around my lips were numb and tingly but that has mostly subsided.
I am going to stay on HU and hope my body adjusts and the other symptoms subside as well.
I have been on other chemo drugs for ovarian cancer— so HU seems easy compared to those!
I don’t like the idea of taking chemo pills either but I certainly don’t want a stroke🫤

jacklyn | @jacklyn | Aug 9 2:01pm

In reply to @loribmt "Hi Jacklyn. You have a great, attentive doctor and when the time is right she’ll reduce..." + (show)

Thanks Lori. I should know by now not to try and control everything in my life especially after I have turned it over to God. You can’t keep taking it back. lol
I also wanted to
Share with you that I am having a hard time going to The Oncology dept. this is the same place my husband ( David) where I took him for his treatments for 1-1/2 for stage 4 colon cancer. My dear David sadly passed away 8 yrs ago and being there has brought it all back to me. The treatments didn’t work for him. I am trying to look at it differently but it’s hard right now. Right after his passing I was diagnosed with MDS. Then my journey started. I never thought I would loose him first. He was 7 yrs younger and never sick. I was the one with breast cancer etc. He was always there for me. I still look for his car sometimes when I come out of Walmart. Still can’t believe it. Thanks for listening.

Lori, Volunteer Mentor | @loribmt | Aug 9 4:51pm

In reply to @jacklyn "Thanks Lori. I should know by now not to try and control everything in my life..." + (show)

Aw, Jacklyn, I’m so sorry for your loss of your husband and I can certainly understand the impact of returning to the same clinic where your husband had been treated. Situations like that can conjure up a lot of emotions, making it difficult to move along in your own journey. My father passed away in the hospital where I was admitted for 8 weeks. I couldn’t help but think of him during those weeks and long nights. But I also felt his energy there and his spirit of endurance from all the tough times I saw him perserve through adversity. So I really empathize with what you’re feeling every time you open those doors to enter the clinic.

Thank you for sharing this memory of your husband. How long were you married?

beebo | @beebo | Aug 9 11:55pm

In reply to @pattycz "I was diagnosed yesterday. I picked up the prescription for the dreaded Hydroxyurea 500 and was..." + (show)

I have been on it for about three years now. Currently taking 500mg 4x week. It resulted in my not needing a phlebotomy for more than one year as it seems to be keeping my #’s pretty stable. This treatment is for PV and so far I have not experienced any side effects.

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