This is my first post here, although I have been lurking since I was diagnosed. I am almost 3 months out from 35 rad treatments for SCC HPV+ of my tongue. I did not have chemo, as I was stage 1. Now, I am MISERABLE! I am in so much more pain now than I was during treatment. I am losing my mind, and was hoping you guys could give me some advice or direction.
About a month ago, my tongue started developing new ulcers and hurting more. My ear started hurting, and after a visit with the ENT he said it was referred pain from my tongue. By the end of that week my neck was swollen and painful to the touch, I couldn’t eat, I couldn’t talk, and it hurt just to swallow my own spit. Long story short, I was told I had a staph infection in my neck. I was on Augmentin for 17 days. My neck swelling reduced but the tongue ulcers grew together, and some kind of white covering has been taking over the area. The ENT says it’s a scab, and that scabs look very different in your mouth, but is still concerned by the way it is growing. They said I need a biopsy, but plan to wait until after my PET scan results. I am now on Doxycycline for another 10 days.
My scan is in 2 days, but the reading of results will be the next week. I don’t think I can make it that long!! I am in so much pain!! I don’t understand why we need to wait an extra week to do a biopsy. I was told not to take Advil anymore because it can create ulcers, but Advil was the only thing helping my inflammation! Tylenol and Tramadol don’t do anything to touch the pain. The other opioids make me vomit. I have been using so much viscous lidocaine and magic mouthwash that I’ve also been throwing up from swallowing so much. And of course the vomit hurts my mouth more. I also just feel really unwell, and my neck hurts. I use all my strength to just take my dog outside, and then I just lay in bed. I feel like I have been going to all of my different doctors ( oncologist, radiation oncologist, ENT, a second ENT, the hospital, urgent care) and nobody is actually helping me.
Has anyone had this kind of issue after treatment?? I don’t know what to do anymore, and I’m at the end of my rope. I feel so desperate for help. Does anyone have any advice? I don’t think I can make it one more week like this.