Hello everyone.
I was diagnosed in December 2021 and have been on nilotinib ever since. After 2 months, I started losing my hair, and this has continued slowly but surely ever since. It’s now at the point where I am finding it extremely distressing. (I’m a 34 year old female FYI). I think about it all day every day, I cry constantly, I don’t want to leave the house or see anyone. The thought that this might be forever as I’ll need to stay on the treatment is making me not want to carry on.
I am responding to the nilotinib but slowly. My consultant is very open to changing medication if I can’t cope with the side effects. Is there any hope of my hair growing back on a different TKI? I would love to hear anyone’s experiences. I thought that after a year I would be getting used to life with CML, but I truly feel at rock bottom. Thank you.
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Hair loss on nilotinib
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Hi Parmaviolet,
I was diagnosed in December 2021 too and have been on nilotinib since then. About hair losing I think is the same problem for all on Nilotinib, (more stressful situation for women). You could search discussions about hair losing in previous thread and experiences from patients been long time on nilotinib.For men I don't think that we will see any change but women after some months and taking supplements, collagen or later with lower dose will see results.
I am 35 years old and fortunately I am responding quickly to nilotinib.In Last BCR-ABL (September) I was undetectable.I had also many side effects at first and again during summer period. The worst thing is the three hour" fasting window "that I can't get used but as I see nilotinib working on me I wouldn't risk to change it. I wish you see soon quicker response and better mood. All we have some low days but I feel better reading positive news about tfr and people who live years off TKIs.!!
Regards,
Savvas
So sorry to hear you have such a distressing side effect from nilotinib. This is a well documented side effect of Tasigna - see this forum thread from 2019.
As your doctor is open to changing your TKI due to your slow response to nilotinib and this particular side effect, it would be worthwhile having a further discussion with him/her about the other TKIs available to you especially to improve your response. All TKIs have side effects but it may well be that another TKI would not affect your hair growth as much as nilotinib. Some people have seen improvements in side effects after dose reduction, but given you do not seem to have an optimal response (?) it may be better to change your TKI rather than reduce the dose at this stage.
You could also consider adding collagen to your daily diet... it is a very useful supplement for improving hair/skin/joints etc.
Sandy