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hair thinning - nilotinib

Hi all

I have been on nilotinib since CML diagnosis 3 months ago. I tolerate it very well and apart from a few days of bone pain at the beginning , I have no major side effects. However, my hair has become very thin and I find this quite upsetting. My hair has always been fine but never so bad, particularly on the top of my head. My consultant has given me iron tablets - I was very anemic at diagnosis with low level of stored iron. She thinks that, although my HB is now normal, my iron reserve may have been further depleted. I hope it will help because I really don't like to take them- 3 times a day with food (but no tea, milk or eggs) plus nilotinib twice a day on an empty stomach.......it's all getting a bit too much.
I heard of Nioxin hair products specially designed for thinning hair due to chemotherapy and I was thinking of trying it - has anyone used it and if so what did you think of it? Some of the side effects are supposed to go away after a few months - could this be true for my hair as well?
Thanks for any advice

Luisa

Hello,

I'm sorry to hear you're having these problems. From my experience of 30+ months of tasigna, I find all the side effects to be cyclical. Some months my skin is better than others, sometimes my facial and head hair feels really fine and others it feels very coarse. I found my side effects have continued to settle down to the point that you'd have to look very carefully at my skin to notice anything unusual.

I hope your side effects calm down and follow the same pattern as mine.

Best wishes

Chris

Hi Chris,

Thanks, that was what I was hoping to hear. I have been on nilotinib for only 3 months (although it feels like a lifetime already!)so I should really expect some side effects - I just thought I was going to be lucky because nothing happened in the first few weeks (apart from some dramatic improvement in my blood test). I suppose I should be pleased that at least I don't feel sick or have some of the other more serious side effects.
I had a bone marrow aspirate last week and I am waiting for the first PCR results after diagnosis (the 3 months milestone)
If it's good, then dry, flaky skin and thin hair is a small price to pay.

Thanks again and all the best

Luisa

Hi Luisa,
I am interested that your stored iron levels are low.... you might be interested to read an article (link below) which gives an an easy to understand overview of iron levels, what is normal range and if low what the best kinds of supplementation are.

http://articles.mercola.com/sites/articles/archive/2009/07/14/Little-Kno...

If you do not like taking the supplemental iron your doctor has prescribed then maybe you should ask for a copy of your ferritin level- and if this is lower than normal - anything between 20-80 ng per ml, ideal range is 40-60 ng per ml.

So below 20 means your iron levels are also low and you should either eat good quality red meat or take a supplement until your level increases (above 80, you have an iron surplus which is not ideal and might cause problems.

So listen to your body and ask for your ferritin level so you can assess what you should do.

Regarding thinning hair- this can be due to lots of things and maybe it is linked in some to TKI therapy but it might be a good idea to ask for a thyroid hormone level test. I noticed my hair changed in quality and thickness some years after transplant, but since using magnesium (I know I sound like a broken record) my hair thickness texture etc. has significantly improved. See link in previous post to nutritional magnesium association for more info on how low magnesium levels affect general health.

Best wishes,
Sandy