Hi, I had stage 4 tonsil base of tongue squamous cell cancer 17 years ago. I had neck dissection and edges were “dirty” so didn’t get all of it. Had chemo radiation. Got along pretty well-all teeth removed-dentures- then blessed to have fixed arches, have extreme ulcers in mouth, it was thought to be caused by poor fitting dentures but got even worse after real teeth. Had biopsy-extreme inflammation, DNA changes so tissue unable to produce ability to heal itself, due to late effects radiation. But I haven’t been able to swallow for over 3 years. Progressing worse. (I had gastric bypass 25 years ago so do not have a stomach, inability to absorb-no intrinsic factor) I asked to have a feeding tube 3 years ago, The WORTHLESS University of Iowa Hospital GE dept. refused to give me one, surgeon said would be to complicated and I would have too many post-op issues. (((((My husband is physician said no one should be turned away without trying to help in some way.)))) continued on for 2 more years, choking many times a day, trying to eat, throwing up from eating too much due to gastric bypass. Had swallow tests, several at different hospitals, all said silent aspiration and basically neck muscles paralysis due to radiation. I can not drink water from glass, some days can’t swallow spit—frightening— last summer 2024 was 90 pounds, I am 5’3” to the incompetent University of IOWA, back to GE department with my physician/surgeon husband with me. Agreed I need feeding tube, had to have appointment with surgeon, husband “Doc” and I went back and surgeon said he would not give me feeding tube I WAS TO THIN, I would have to have nasal gastric tube and gain 15 pounds first. By now I have autoimmune herpes in mouth , throat and esophagus. All my other local doctors, GP, Rheumatologist, and others said if a tube was put down my throat I would bleed to death due to ulcers. So a year later I am still here, was able to sit at home all winter and eat little things all day long and have gained 10 pounds, unbelievable all my labs are normal, not even anemia. (It totally broke my and Doc’s heart that we couldn’t go to our offices we created and ran together for 25 years, but God blessed us with perfect staff that also attended to doc’s emotions of not having me there for him. Cancer affects spouses so tragically. So finally may I ask, if you were able to hang through all this, the fibrosis you speak of could be causing some of my difficulty swallowing and especially my speech. People have a had time understanding some of my words. Doc does agree I am slurring more and I have noticed I can not open my mouth as large as I used too. We are rural Iowa, Basically University of Iowa ENT and GE departments see no reason to see me, I have wonderful local GP who also realizes University of Iowa is a death trap. Could you give me info on fibrosis. My husband can acquire any medical equipment thru his office. Thank you for letting me share this story. And you people out there who have been given a time limit-Don’t Pay Attention To Them. I was given 1 to 2 years at very most. And here I am 17 years later out working in my rose gardens. God Bless All of You…. Julie Hart

Yes please. I too am intereted.
Itbhas been 8 montjs post treatment and i am unable to eat a d awollow solid food. My speech is completely off. I do weekly Lymphatic massages with a therapist Md my own at home. However it does not seem to be getting better. ANY helpor advice will be amazing!
Thank.you.