Sores on torso and arms after multi-year use of Xalkori (crizotinib)?

@dedehans, I'm tagging a few other members like @2onlow8 @shaila1902 @peachie @velmaforever @hlolson who have experience with Xalkori (crizotinib) and may have some thoughts on this late appearing side effect.

Have you found any relief yet?

Hi! I was on Xalkori for only 4 weeks when I experienced Grade 4 hepatotoxicity, so I was switched to a different TKI. I haven’t personally experienced any of those side effects but I have read about others who had experienced rash like that and found relief with topical cortisone cream(consult with your doctor).

Hi! I would highly recommend joining facebook group Ros1ders. They have so much information and recommendations.

Hello @dedehans, People on other targeted therapies can develop rashes or sores even after years of treatment too. It's so strange. I've heard that some can find relief through a steroid cream. How are you feeling? Were you able to find something that provided some relief?

Not really yet. It comes and goes. I find that my lovely hot showers can make the itching spots increase . I have tried the steroid cream (triamincinolone acetonide ) and a lotion (ammonium lactate 12%) and I just itch more.Going to the dermatologist this week for annual skin check so will see if she has any suggestions to offer.

I have only been on Xalkori one year now. The only time I had a skin issue was an allergic reaction to an oral antibiotic I was on. Is it possible you are having an allergic reaction to something else? I understand how miserable your condition can be. As stated before, join the Ros1ders on Facebook there is wealth of information to side effects and treatments. I wish you well, and congratulations on your 8 years of success.

Hoping that you find some relief, and soon!

Thank you for your response. No, no new drugs or anything. I did join Ros1ders and check it from time to time. I do see doctors tomorrow so will ask....

Hi, there. I have ROS1 as well, but am on Repotrectinib (just started in Feb). Although I'm not having any side effects like what you describe, I DO have a preexisting skin condition with random itchy spots, and I was prescribed Clobetasol Propionate 0.05% and it works like a charm - every time. I suggest maybe you mention this ointment to your derm to see if they might either give you a sample to try, or perhaps they can prescribe it so you can try it for a couple weeks. Best of luck! ♥️

Thank you! I will ask my dermatologist about Clobetasol propionate in an hour or two and will report back. Appreciate you all.