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Skin Infections whilst on Nilotinib

Hi there,
I hope someone can help? My husband was diagnosed with CML in June 2012 and since August of that year he has been on Nilotinib (Tasignia).
Since he started taking the Nilotinib he has had constant skin infections, some of them very nasty fungal infections. It resulted in him not being able to leave the house last year for 6 weeks as covered most of his body and was in a lot of pain. It looked a lot like shingles but swabs came back as fungal.
He has had infections of the skin in different places of the body, sometimes very painful and as a result he has to take other recommended medication, so often feels he is always popping pills.
We have tried everything we can at home to limit his infections i.e changing his towels every day, I constantly clean everything but it seems to have no effect.
The team treating him at the hospital do not think there could be a link with the Nilotinib and the skin infections as not a known side effect they say. Although I have now insisted they look into it as it is a misery for him and also he never had any problem before he was on these drugs.

Just so I know we are not going crazy in thinking there could possibly be a link I would really appreciate to know if anyone else has had anything similar?

Kindest Regards

Stephanie

Hi Stephanie,

I am sorry to hear your husband is suffering so badly. Skin rash is a known side effect of TKI therapies including nilotinib. You do not say which kind of fungal infection the hospital identified and I assume they were able to treat that particular infection with anti-fungals? However, if he is still suffering I think you are right to insist that they investigate further.
If his PCR test results show a good response then it may be possible to take a (very) short break from therapy to see if his skin reaction clears- then you would be more certain about its cause fungal or a side effect of nilotinib. It may well be that he is intolerant to this particular TKI and depending on access in your region, a change to one of the other drugs might solve the problem... but first you have to identify what is actually causing it.

I hope this is of some help,

Sandy

Hi Sandy,

Thanks so much for your response. It is reassuring to know that we aren't on the wrong track to think that the drugs could possibly be effecting Ian.

His PCR is below 0.1 and very gradually reducing further.

The skin infection he currently has is 'streptococcus agalactiae (GBS)and they have given him a penicillin based drug to deal with that as the original drug the GP wanted him to take conflicted with the Nilotinib and he was told by the hospital to not take it.

The other infections have ranged from the typical athletes foot to exotically named fungal type infections which I would need to go back and look through his records to list. The infections have occurred under the arms, neck, legs, chest and groin area. You name it has been infected. A type of steroid cream has been used before with antihistamines for some of the infections, the anti-fungal creams they originally wanted him to use he couldn't because again conflicted with the Nilotinib.

It will be interesting to see what the GP will next recommend as the hospital is saying Ian should see a Dermatologist as they are still keen to keep him on the drugs. It really helps to know that they may possibly suggest a holiday from the drugs and that this is not unheard of so I feel a lot more reassured having read your post.

Stephanie

Hello Stephanie, Sorry your husband has skin problems on Nilotinib, I have terrible issues. My treatment centre is Kings College hospital London, and they are on top of the issues, and I regularly see the dermatologist in the skin clinic. The two Drs work together on the issues.
I have a special shower/bath gel, shampoo, creams to put on everyday and others to use when there are the inevitable flare ups. I have cut as much sugar out of my diet as is possible, its so hidden in some foods. Also find that stress really brings on a flare-up. I try not to take any other drug, but some times I just have to.

I know there are other CMLers at Kings having similar issues.

Perhaps a referral to the dermatology dept. at the hospital treating your husbands CML would help? There are so many drugs we can't take in combination with Nilotinib I prefer to see the specialist that knows the OK list. The don't take list is very long! I think there are about 800 drugs we can't take as they interact with Tasigna!!

By the way its 13years this month since I started on Gleevec. My latest PCR was a big fat undetectable – my first. I've taken all TKI's and had problems, but not such good results as I have on Nilotinib. I waited a long long time for this Zero but wow it feels good to get there.

We early CMLers all went through such battles to get treatment. Now the politics and funding of NHS is on the move again – will it ever be OK?

Pennie

Hi Pennie, sorry to hear you too are having skin/rash problems from nilotinib- but glad to hear your pcr is undetectable- that is worth celebrating. Now you have so many zeros, could you try to reduce the dose to half (like DESTINY trial protocol for the first 12 mths) maybe it would be worth you trying to see if the skin side effects diminish?

Sandy

Hi Pennie

Thank you so much for taking the time to respond to me and for sharing your experience. I too am very sorry to hear that you have suffered with the skin problems.

We are trying to get an appointment for my husband this week with the GP to get a referral to the dermatology department....if we can get through on the phone.

Hopefully an appointment will be available soon for him as he is going through another bad bought and the drugs he has been given to sort are not working and making him feel ill also. It gives us reassurance to know that we are not alone, so thank you.

It is very upsetting to see him have to go through this after all he has had to deal with. It will be three years since his diagnosis, but although it has been struggle we have had lots of positives, such as the arrival of our first child, a son in 2013 (although he decided to arrive two months early - more grey hairs to add to the collection), we do count ourselves as very lucky.

I am very pleased regarding your brilliant PCR results, it is so good to see and long may it continue.

I am hopeful that the politics and funding will not interfere with the care we are all receiving but I can't help but feel we are just a number on a someone's spread-sheet.

Wishing you well.

Stephanie