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

I am 72, have ET with JAK2, and been on Droxia for 10 years. My dosage has been increased recently to 800mg per day while my platelet count remains in the low 600s. As the Droxia increases, the anxiety does as well. The idea of chemo pills being in my system for 10 years is frightening. I have been frantically trying to find alternatives including diet; supplements; integrative medicine; etc. Yesterday my Hematologist/Oncologist mentioned two other drugs, both with bad side effects. Just when I felt I was out of hope and resources, I read your post this a.m. and feel so much better. I continue to find this site encouraging and appreciate all the comments by Lori. Thank you all for keeping the faith and sharing your experiences. It helps so much.....

Are you able to take a low dose aspirin a day?

I have been on Hydroxyurea 500 daily for one month, following month went to 5 days a week and now am on 3 days a week. It has moved from 890 platelets at the start of this year and it is now 386 as of last week. But with this reduction on platelets, it has also lowered my hemoglobin, white blood cells as well as red blood cells and my fingernails have become blackish, darker, hence the reason for reducing the dosage as shown here above.

I was diagnosed yesterday. I picked up the prescription for the dreaded Hydroxyurea 500 and was hesitant to take it. I do not want the clots and
I don’t want to wait. I have read on another blog that the side effect vary
from person to person. If I don’t try it I think I will regret it. This is the
only medication for ET for now. I took my first dose today and I’m still here.
Fear is a force that keeps you from making a move. Best wishes.

I was on hydroxyurea (Hydrea) for 7 years for Essential Thrombocythemia (aka way too many platelets) prior to my stem cell transplant 5 months ago. I felt totally normal on my daily maintenance dose and lived my life normally for those years while on the medication.
Hope you continue to do well. Lynn

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.