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johnco, unfortunately there continues to be an unmet need for OM treatment. I'm sure your doctor is doing his best in managing your treatment. The key with OM is that you need to keep your mouth clean in order to keep the bacterial load down as the chemo and rt have destroyed your mucosa (which had previously fought off bacteria). The dead skin in your mouth are the pseudomembrane tissue that forms when there is a bacterial invasion or sore. There have been several studies involving wide spectrum antibiotic swish and spit solutions but none of them seemed to be successful. The old "miracle mouthwash" solutions, baking soda/water and even peroxide with baking soda will most likely be perscribed but as you've experienced not that significant. I'd try to stay away from any alcohol or any smoke as this could exacerbate the cancer, always keep your doctor informed about what you do. I'm surprised though that they haven't offered you more pain management, some patients took Actiq (fentanyl), there's even a newer formula called Fentora, a quick disolving tablet between the cheek and gum. Its hard to give any sort of advice, when your doc is responsible for you. Also look in clinicaltrials.gov to see if there's any clinical study going on for OM pain, I'll look as well and shoot you a PM if I see anything. Your descriptions are horrifying and we can only imagine the suffering you're experiencing. You're on our list of people who we'll pray for... Also, for nutrition, you can always get a peg tube and put down some Boost or some other nutiritional drink. Remember, keep your mouth clean.
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