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

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

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.

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.

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?

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.

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!

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.

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.

Hola, buen día. Si te sirve de algo tengo 41 años y tomo hidroxiurea hace 10 años.
Por el momento el cansancio y un leve caída del cabello son los únicos efectos secundarios q he experimentado.
Tengo trombocitosis escencial. Mis plaquetas estaban en 1 millón al inicio.

I was diagnosed with MDS/MPN-RS-T in 2018. I have three mutations -JAK2, SRFS2 and IDH1-R132H. My platelet count was 887 so I started taking 500mg HU. I have always had very large red blood cells and way too many immature white blood cells. In January of 2024 the MPN component mutated to PV so I go to Sloan for weekly labs and vampire treatments if my HCT number is >45. No major symptoms except fatigue. I am currently on 1500 mg HU daily. The HU doesn’t seem to bother me yet. I also have Chronic Sensorimotor Axonal Polyneuropathy which is kicking my ass. I have no feeling below my knees in both legs so I need a cane to get around and for balance. Not sure which is worse - the blood cancer or the polyneuropathy. Together, they really suck.