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.

Lori, Volunteer Mentor | @loribmt | Oct 15, 2023

In reply to @licketysplit "Newly diagnosed with Chronic Lymphatic Leukemia, How careful do I have to be about infection? Do..." + (show)

Welcome to Connect @licketysplit. Chronic Lymphatic Leukemia or CLL is generally a slowly developing blood condition and you may not have symptoms for many years. However it is a type of cancer that attacks white blood cells, affecting your body’s ability to fight off infection. So it is always a good idea to take extra precautions to avoid exposure to illnesses, especially Covid, RSV, and the flu.

If you haven’t already it’s a really good idea to make sure your vaccinations are up to date.
I’m immunocompromised and always wear a mask when I’m in stores or areas where there are groups of people, in elevators, theaters, etc. Avoidance of exposure and frequent hand washing/hand sanitizers are really important.

Here are some links from trusted sources for you to read up on CLL. Knowledge is power but the sources can matter. Avoiding Dr Google is probably the best advice. ☺️

~CLL Can Leave You Immunocompromised. Here’s How to Manage
https://www.healthline.com/health/cll/cll-immunocompromised
~This is comprehensive guide to CLL from:
Verywellhealth.com
https://www.verywellhealth.com/chronic-lymphocytic-leukemia-7551732
~Living with CLL from Cllcancer.com
https://www.cllcancer.com/living-with-cll?segid=clldxpre1li&cid=ppc_ppd_cll_dsa_bing_01026&&msclkid=11a10aad0c1a1283b4aa6f8130ee9a9e&gclid=11a10aad0c1a1283b4aa6f8130ee9a9e&gclsrc=3p.ds
Were you having symptoms that led to your diagnosis or was this discovered with a routine exam? Has your doctor discussion treatment options or are you in an active surveillance stage?

jonisuealan | @jonisuealan | Oct 15, 2023

In reply to @treeore "Joni, do look into financial aide from the interferon producer itself. I could not justify the..." + (show)

Thanks for the info! I will look into that! Take care, Joni

treeore | @treeore | 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)

Joni, do look into financial aide from the interferon producer itself. I could not justify the enormous expense of Besremi as it would quickly gouge out my retirement savings. Even Medicare with plan D would be a dreadful cost though maybe this will change as the IRA rules start to take affect for Medicare drug plans in the next few years.) I applied and have at least been approved for the first three months. (They've implied I have to do some other application in January, which I dread.) The application process looked easy at first but actually was filled with frustrating pauses and roadblocks. It took months to adequately meet all the requirements of the body that makes the decision. Still, what an enormous help free treatment is. (During the process I suggested they do more of a prorated discount, which seems more fair, but the pharmaceutical rep said no, it's all or nothing financial aide.)

jonisuealan | @jonisuealan | Oct 15, 2023

In reply to @eileen11108 "You could try Anagrelide. It reduces platelets. If it is iexpensive on your insurance check Goodrx.com...." + (show)

Thank you!!

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?

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)

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.

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)

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!

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)

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

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)

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.

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)

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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