oral shingles?

DrMary Member Posts: 531 Member
About 3 months out from the end of treatment and it really feels like we're sliding back downhill. After Doug had his neck dissection, he started having trouble eating again. First, it was just the jaw and ear pain from the operation, but then he started having mucositis-like symptoms in his mouth, mostly where the gums, tongue and back of the mouth meet. Cold food and drink made the pain worse, rather than better.

The ENT put him back on nystatin, which didn't do much. The ENT and the dentist say they really can't see any sores there. I can see a few very small lesions, like flat pimples.

Since Doug had an outbreak of shingles on his jaw and cheek a few months back, I'm wondering if the current pain is caused by oral shingles. The pain seems really bad (I think we have established that his pain tolerance is quite high, and this pain brings him close to tears). He is losing weight again and we are both depressed about the pain - he's taking pain pills, which help some at night at least.

Anyone ever run into this?


  • adventurebob
    adventurebob Member Posts: 691
    Hi Dr. Mary,

    That really sounds like mucositis more than oral shingles which would be pretty inflamed and obvious. Mucositis can hurt like hell. Going back to the basics for mucositis during treatment could be helpful. You know; Caphosol or magic mouthwash rinses regularly throughout the day, room temp liquid calories to manage the cachexia, appropriate pain meds and talk to the center psychologist about depression management. Really giving the cachexia a lot of attention will support the other symptoms best. Sorry for Doug's pain and your concern. Hit it fast and hard with all those tools and keep Doug out on the ice.

  • JUDYV5
    JUDYV5 Member Posts: 392
    I have started using a product called S.T37. A friend suggested it for the mouth sores. They use it at St.Jude. It seems to help. - Judy