I was diagnosed with CML in June 2017, and started Nilotinib on the 7 July. So far treatment appears to be going well and I am suffering minor side effects (tiredness and intermittent muscle aches), however I have noticed that my hair has suddenly started thinning quite dramatically. I'm assuming this is quite normal as I was warned right from the start that it might happen. My concern is that it keeps thinning but doesn't grow back, all the information I have read regarding hair loss states it grows back once the treatment stops, but CML treatment won't stop it's life long. Any experiences and/or advice please? Many thanks - Julie
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Nilotinib and hair loss
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On 600mg Tasigna my hair stopped growing but did not appear to be thinning. When I reduced my dose to 450 mg and then later to 300 mg, the hair started growing again on my head, but not my legs. I just reduced dose again to 150 mg but too early to tell if hair growth will be affected
Hi,
this is a known side effect, but I have found side effects to be cyclical - some months my hair is thicker than others. I went to half dose recently (300mg/day) after a long and sustained response. My hair (head and body) has thickened and is close to pre-diagnosis.
you may well find it settles down in time.
best wishes
Chris