Afinitor and sores

Mzmerz
Mzmerz Member Posts: 1,054

Hello. It's been a good long while since I posted. I'm soon to be on my 8th year, which is really unbelievable to me. I am fairly stable and just have enough changes on my scans to have my doctor change my treatment. I am currently on Afinitor, Faslodex (EVIL NEEDLES) and Xgeva. My problem is with the Afinitor. I was on 10 mg but my mouth sores were insane. The dex mouthwash did nothing. The magic mouthwash was, well, far from magical. I have always been hard to get numb at the dentist, so I assume that is part of my problem. I was on it for about 2 months, I guess, when I started to develop lumps in my groin, right where the elastic of your underwear hits. The next month, the lumps turned into sores with thick pus. It is really embarrassing to have to take pictures of this area to send to your doctor. Some of the sores were deep through the skin, it's hard to explain, but it was gross and smelly. We were set to go on our 30th anniversary cruise with these sores and wearing underwear is painful. They gave me antibiotics to take and we went to Alaska as planned. The antibiotics worked, but as soon as I restarted the Afinitor, this time 5mg, all the sores came right back. They sometimes appear in my nose and around my lips. I just had another break from the meds, which I do when either sore site becomes too much to handle. My doc is having me take the 5 mg every other day, but I'm on my 3rd "day" and it's all back. I never had mouth sores on any other medication until this point, which I find interesting. They are also on my scalp. It hurts to be touched.

I guess my question is - does anyone else have sores besides their mouth with this medication? My doc has not had anyone else with this "down there" complication.

I'm sorry if this is too long or TMI.



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