Hi all, I have been put on hydroxycarbonide after having reactions to two other medications. I am finding that my hair has become really thin and comes quite a lot has anyone else had this experience and have any advice.
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Hello @Heathermargot
Thank you for taking time to send in your post to the forum
I’m sorry to learn about the reactions you have had to the two other medications you mention, it must be frustrating to have to change medication and try a third.
I have a very limited understanding of Hydroxycarbamide, only from what I have read myself, and please let me add as a forum support volunteer I am not medically qualified nor am I giving you any medical advice.
My understanding is Hydroxycarbamide can cause hair thinning or even hair loss, though it is usually mild or less common compared to traditional chemotherapy. I’ve read that people experience gradual hair thinning rather than total baldness, though complete hair loss can occasionally happen. Hair usually grows back after you finish treatment or if your doctor adjusts your dose, though the new hair might feel softer, curlier, or have a different colour.
If you haven’t already, Please may I encourage you to share your concerns with your medical experts who will be better placed to advise you.
If you prefer - please remember you can call us for free on [0808 2080 888](tel:0808 2080 888) (Option 1) to speak to one of our Support Service Nurses in confidence.
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Please feel free to let us know how you get on
Kind regards
Mike
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Hello there @Heathermargot, welcome back to the forum.
You know, sadly you’re not alone in tolerating hair loss with these treatments we take. I happen to take hydroxyurea for Polycythaemia vera ('PV'), but have not noticed hair loss (although I was already bald). I can appreciate how one’s appearance changing beyond your own control can feel destabilising to say the least.
There are other forum members who mentioned noticing hair loss from taking hydroxyurea and they were able to change medicines, although it sounds like you have tried 3 different types? Here is the Blood Cancer UK informant about Essential Thrombocythaemia ('ET') treatments for your reference: Essential thrombocythaemia (ET) treatment and side effects | Blood Cancer UK
Maybe have a look via the search box for others experiencing hair loss to see what options have been discussed. Here’s one very long thread with lots of great lived experiences of tolerating hair loss, including many wigs: Apheresis- what to wear?! - #185 by Ceri_BloodCancerUK
Here’s the great Blood Cancer UK information about hair loss: Hair loss | Blood Cancer UK
We forum members can’t offer medical advice but our lovely Blood Cancer UK nurses can, if you’d like to call them on 0808 2080 888.
Hope that helps a little @Heathermargot, I’m very sorry you’re going through this. Please keep us posted about how you get on.
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