Connect
← Return to Late effect stage 4 tonsil & tongue cancer 18 years ago
Discussion
Late effect stage 4 tonsil & tongue cancer 18 years ago
Head & Neck Cancer | Last Active: Apr 19 8:06pm | Replies (6)Comment receiving replies
That's a lot of suffering for one person @mrsfootdoc. You are blessed to have a positive attitude and the strength to help yourself. My oral ulcers were only during and immediately after the radiation/chemo period. I also used lidocaine gel as well as magic mouthwash for comfort. In 12 years I have not had these symptoms recur but radiation was aimed at the base of skull under my ear, not my throat. A few questions for you: Are you regularly seeing a radiation oncology team member since they have the most experience in dealing with these symptoms? Have you been checked for an oral fungal infection? What does your PCP say about a feeding tube? Have you had speech therapy to try to regain any swallowing function? My suggestions are to ask your PCP about Gabapentin for nerve pain and a saliva substitute. If your salivary glands cannot produce saliva any more then perhaps you will get some healing of ulcers with a saliva substitute. I have not used one (yet) but survive my dry mouth with Biotene gel and spray and Xylimelts at night. Staying well hydrated with water and electrolytes thru the day is very important too. If this is the best that your medical team can do, I might be asking for a referral to get some more opinions on what might help.
Replies to "That's a lot of suffering for one person @mrsfootdoc. You are blessed to have a positive..."
Connect
Thank you for listening, I have not seen oncology for 16 years. I have had every possible swallowing test available, several different times at different hospitals or clinics. I do have silent aspiration. I also had a menography ? Large, long tube done throat with sensors on it to assess is they can push water I drank down. No activity, paralyzed throat. If food gets in there I can’t push it down. I know different ways to turn my head to help but still involves a lot of choking , throwing up. .. I am able to “huff” what I call it and blow price of food out.
My husband and I went back last year to see if I could possibly get feeding tube. This time the excuse was I was “to thin “ I would have to gain 15 or 20 pounds before they would attempt it. Again Doc-my husband- and I and my PCP agreed that university of Iowa doesn’t really care. Basically again go off and die. Went to ENT2 years ago, he said nothing could be done to help mouth ulcers. Radiation had destroyed all my mucus membranes, also mentioned radiation changes DNA in areas, nothing can be done except for lidocaine. Tried to get into a neurologist to have him check brain scan, lots of memory and dizziness, again was told this could have been affected by radiation so close to brain tissue. He didn’t want to see me told me to go back to ENT. I am just really just giving up. My husband and I ran his podiatry practice, two different offices, for 26 years. We never once turned anyone away for any reason. He at one point was taking care of 9 different nursing homes, in a rural area with some hour away because no other Dr wanted to help them.We treated elderly patients in their home when long term patients and couldn’t get out. I am just whining now but to have did everything possible in our lives for others and then me not being able to get help is despicable. I have no shame in my heart, we did not treat our patients like this. I am just grateful there are people like you out there who understand. And to all the frightened patients who have been given a time limit. I was told surgeons could not get all of cancer tissue. They gave me 1 year time limit. Don’t live your life waiting for something that was told to you would happen. Just live you life happy!
Thank you for listening to me. Julie Hart