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

Thank you for such a great article. You are right. I am tolerating hydroxy and have more energy than I have had in a long time. I also had to get off my Symbicort inhaler that my pulmonologist put me on when I was hospitalized last December for pneumonia. He agreed with my oncologist that I should come off of it. I ended up having anxiety the first week of my vacation and found out it was a side effect coming off Symbicort. Happy that is done and my breathing is fine. I mean I get out of breath at times but I am 76.
I will let you know my results today. There were a lot of sick looking people in the Oncology ward this morning. I said a prayer for all of us. I am blessed so far. Talk to you soon Lori. Thanks again.

I've been on HU for 3 1/2 years now.......first year my gut had to get use to HU, but now ok........I was more frightened of stroke or heart attack than HU, but that's me, everyone finds their own path.

Hi @jacklyn Wow, I’m so happy to read that you’ve been feeling great since starting the hydroxy and had a great vacation with your son! I remember you being so worried the first time we talked about starting the hydroxy. So glad this is working out for you. ☺️

I’d like to encourage you not to get so focused on life span for someone with CMML. Just live life without an end date! Or as I like to say, Live like they left the gate open! LOL.

According to an article from Penn Medicine, “Many chronic myelomonocytic leukemia (CMML) continue to live full lives after their diagnosis and are minimally affected by their disease.” Here’s the full article. https://www.pennmedicine.org/cancer/types-of-cancer/leukemia/types-of-leukemia/chronic-myelomonocytic-leukemia

Good luck on your blood work tomorrow! Let me know what you find out, ok?

I developed a very high fever, shakes and chills came with it. It was scary. Tried hydroxy 3 times and every time the same thing even with a low dose like 200 mg. Be aware of that. I won’t take it anymore. Do you take aspirin or some kind of a blood thinner? That , supposedly , helps with clots.
Some doctors do not start treating the high level of platelets till they reach a million, which what I had to start with .

I have been in hydroxy for 6 weeks now. I take 2(500mg) a day. I was diagnosed MDS (low risk) 8 yrs ago.(Wait and watch approach). all of a sudden my routine every 3 month blood test came back with my white cell count at 50. I had a bone marrow biopsy done and I was diagnosed with CMML borderline AML. Not good. One week later my oncologist put me on 2(500mg) hydroxy and my count went down to 24 and then the next week to 14. My oncologist also couldn’t believe how good all my blood test results came back. So she let me go on vacation for 3 weeks. I never felt better. I go for a blood test tomorrow. Saying my
Prayers all is well. Also if so I hope to reduce the dosage and see. I was the same scared lady who looked up the info on the drug and panicked. But if I were you I would ignore that and give it a try. Also Lori on this chat group gave me a lot of confidence. She knows a lot about blood cancers and helps everyone out with reliable information. We are blessed to have her.

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.

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

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.