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.

@nohrt4me

The world is full of people who think they have outsmarted cancer. Folks might want to read about Jessie "Boss Lee" Ward. She was sure everybody on chemo was a dupe, too.

Jump to this post

@nohrt4me - I really don’t think this is a discussion about “outsmarting cancer” - at least, that’s not the way I’ve ever thought about it. To me, it’s all about keeping an open mind and finding the best possible approach to help our bodies heal and become healthier. We’re all different and we need to choose the path that’s best for us as individuals. I’ve had many family members and work colleagues go through chemo treatment over the years, none of which I would ever consider to be “dupes”. They just chose the path that they felt was right for themselves at that time. For myself, I choose a more wholistic approach to my health and tend to shy away from pharmaceuticals as much as possible. But that’s just the path that I’ve chosen for myself. I wish you the very best with your chosen path.

REPLY
@eddb

Sure @nohrt4me, but the study specifically mentions the affects of inhibiting/reducing platelet aggregation in humans. The way I see it, in my situation (platelet counts of a million or so), my best options are to slow down platelet production and/or make them less sticky. And fortunately, I happen to like mushrooms!

Jump to this post

The world is full of people who think they have outsmarted cancer. Folks might want to read about Jessie "Boss Lee" Ward. She was sure everybody on chemo was a dupe, too.

REPLY

This is in response to @eddb I have been taking this medication since 2014. I have had no side effects. Please take the meds but continue to a find a good hemotologist/ oncologist. They put me on a daily baby asprin daily. This is to help with the potential clots. I don't know if you will have any side effects or not but you need to try it so you know. There are other drugs they can use as well. Good luck...

REPLY

Thanks for posting. Very informative and I am currently eating many of the fruits and vegetables in this study. I notice when I am eating healthy my body and mind reflect the wellness.
We are what we eat, especially with the correlation studies supporting evidence surrounding ET and high cholesterol.
I am exploring all of my options to minimize this mysterious/uncurable disease, including a full commitment to different forms of exercise on a daily basis.

REPLY

Sure @nohrt4me, but the study specifically mentions the affects of inhibiting/reducing platelet aggregation in humans. The way I see it, in my situation (platelet counts of a million or so), my best options are to slow down platelet production and/or make them less sticky. And fortunately, I happen to like mushrooms!

REPLY

This study is geared toward those with cardiovascular disease, not blood cancers. These are completely different diseases.

REPLY
@nohrt4me

Lots of things affect platelet counts in normal people: stress, food, medication, etc.

ET is a different animal. Your driver mutation is a glitch that tells your body to replicate a certain type of cell (or cells) like crazy. Your bone marrow produces megakaryocytes with abnormal nuclei--basically, big dumb platelet-making cells that don't work right.

It's not just the platelet levels that need to be addressed with ET, but that the platelets themselves may be "stickier" in people with certain ET mutations, which is why doctors put everybody on baby aspirin, even if they don't yet need to address the platelet levels.

Dietary changes can reduce overall stroke risks, especially if they are coupled with exercises that work circulation. Dietary changes can also help with fatigue and brain fog.

If you have credible evidence (double-blind research) that your dietary changes control ET, please post it.

Cognitive dysfunction is not a symptom of ET, so not sure why Lion's Mane mushrooms were suggested. Please post credible studies that show this is effective for anything besides making money off desperate people.

Jump to this post

REPLY

Lots of things affect platelet counts in normal people: stress, food, medication, etc.

ET is a different animal. Your driver mutation is a glitch that tells your body to replicate a certain type of cell (or cells) like crazy. Your bone marrow produces megakaryocytes with abnormal nuclei--basically, big dumb platelet-making cells that don't work right.

It's not just the platelet levels that need to be addressed with ET, but that the platelets themselves may be "stickier" in people with certain ET mutations, which is why doctors put everybody on baby aspirin, even if they don't yet need to address the platelet levels.

Dietary changes can reduce overall stroke risks, especially if they are coupled with exercises that work circulation. Dietary changes can also help with fatigue and brain fog.

If you have credible evidence (double-blind research) that your dietary changes control ET, please post it.

Cognitive dysfunction is not a symptom of ET, so not sure why Lion's Mane mushrooms were suggested. Please post credible studies that show this is effective for anything besides making money off desperate people.

REPLY
@christinele

What kinds of food did you remove? Thank you

Jump to this post

All dark leafy greens, meats that are designated "loin." When you research "foods that increase platelet count," you'll be amazed what's listed.

REPLY
@phyl59

Diet plays a huge part in keeping platelets within the Normal range 300-450. Once I identified what foods that increased platelet counts, and removed them from my diet, my count finally dropped to "normal" levels. And I noticed that for me, carbs increase my count too. For brain fog, I take Lion's Mane mushroom capsules once a day. Made a world of difference in my cognitive ability.

Jump to this post

What kinds of food did you remove? Thank you

REPLY
Please sign in or register to post a reply.