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Hair loss nilotinib

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I have been taking nilotinib since last July and by December had had a major molecular response, which is amazing. However, my hair is thinning quite badly. You can see my scalp very clearly in a number of places, which is making me rather self-conscious. Has anyone else experienced this and does anyone have any tips eg food supplements/ vitamins?  For people who’ve been on nilotinib for years, does this tend to get better or worse? Thanks, Sally

Hi Sally, this subject has been raised a few times on cml support, and quite simply, and not being unsympathetic to your situation, hair loss and changes in the hair in general are common side effects of taking Nilotinib.

Peter

Hi Sally,

I have also been taking Nilotinib for about the same timescale as yourself. I started to notice some hair loss around the turn of the year. Fortunately for myself, it has only affected my limbs so far but does seem to me working its way up. Once quite a hairy fellow, my legs are almost completely bald now. My hair now seems to have been replaced by spots. I feel like a teenager all over again.

Whilst I can't offer any advice on supplements, if I hear anything on the old grapevine I shall let you know. I can only hope for you that things start to improve. If you ever need a fresh ear to talk to, just drop me a message.

Jay.

Hi Sally,

I have also been taking Nilotinib for about the same timescale as yourself. I started to notice some hair loss around the turn of the year. Fortunately for myself, it has only affected my limbs so far but does seem to me working its way up. Once quite a hairy fellow, my legs are almost completely bald now. My hair now seems to have been replaced by spots. I feel like a teenager all over again.

Whilst I can't offer any advice on supplements, if I hear anything on the old grapevine I shall let you know. I can only hope for you that things start to improve. If you ever need a fresh ear to talk to, just drop me a message.

Jay.

Thanks Jay, that sounds identical to my experience except I wasn’t that hairy to start with (or at least not on my body!) I expect it’s really the least of my worries on a grand scale and I can always look at wig/ hair extension options in the future. In the meantime, I’ve stopped brushing my hair and wash it only once a week. I can see hair regrowth at the temples, which is positive. Best wishes, Sally