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@lambo1

I have been on Hydroxyurea for 5.5 years with virtually no side effects (other than my hair has become curlier!). I started at 500 mg a day and now only taking this three times a week and my platelets are in the normal range. Within three months of being diagnosed with ET I was also diagnosed with CLL and breast cancer. An overwhelming time to say the least, but things are all stable for now. Skin cancer is also an issue for me, and we know the risk is increased by both the medication and having CLL. But I am active - so far, so good!

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Replies to "I have been on Hydroxyurea for 5.5 years with virtually no side effects (other than my..."

I’ve been on 1500 mg of hydrea daily for over 3 decades with minimal side effects and a stable platelet count for ET. Diagnosed when I was 20 and I just turned 56! I’m active and overall fairly healthy (except have strep throat now). I tend to pick up everything with this poor immune system… Anyway My doctor wants to switch me to interferon as he says hydrea for that long is not good. However my insurance doesn’t cover much of it. Monthly amount out of pocket is $2500, who can afford that. I’m not sure what to do. Looking for any suggestions. Thanks!!!

Welcome to Connect, @lambo1 You sure jumped in with both feet having all this medical excitement in a short amount of time. I’m happy to see everything is stable now and you’re doing so well.

Thank you for sharing your positive experience with Hydroxurea. Stories like yours can be so reassuring for anyone just starting hydroxy and feeling uncertain about what they’re facing with their new blood cancer diagnosis and having to start a treatment.

Do you take any medication for your CLL?

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!