Greetings to all, I'm a long term oral cancer survivor. I was diagnosed in 1989 at age 39 with a squamous cell CA of my tongue. I had a right radical neck dissection at the time followed by 5000 rads of radiation. Now, after 33 years of cancer free life I am experiencing side effect of radiation. I have bad dysphagia and a narrowing of my vocal cords. I have lost around 25 pounds of weight over the last year. It's been a slow developing thing but now I am at the point of getting a PEG tube. This will happen of June 28. Hopefully, I'll be able to turn things around, put some weight on, and get some strength and stamina back. I would like to hear from anyone who has experienced long term radiation side effects. Best regards to all and good luck in your private struggles.

My worst issues developed 18 years out. All radiation induced. Dysphasia that put me on a PEG full time for everything. If you are getting one I can help you with some insights that made it bearable, and easier to deal with. That also includes a regime of blending real food in a Vitamix that allowed me to stay healthier, and gain weight. That takes a little nutritional education, but happy to help you find your way. Living on canned pharma food is not a long term solution you will find.

I also had terrible ORN which required the removal and rebuilding of the left side of my mandible. That was really a major deal and took three 9 hour surgeries last summer to finally accomplish. That creates other challenges. All this combined lead to a loss of speech that most people can’t understand. So much for decades of lecturing on viruses and cancers.
Take a look at the website in the complications of treatment area for dysautonomia. It’s an important read.

So please feel free to, with others here, ask me direct questions, if I can help you have an easier path than my own I will certainly try. By the way I have a little place in Santa Fe. I have lived there off and on in different homes, and I’m a native New Mexican.

Hello.
I experienced similar problems with brutal treatments..so fully understand, relate, and sympathize with you.
You will find this forum helpful and reassuring.
I don't have any words of wisdom..but do have a diet/feeding tube food supplement suggestion for those here who are retired and on a fixed budget.
Seven years ago l was using a feeding tube..and the cost of canned supplements was enormous, as it is essential to keep to the suggested 1500-2000 calorie intake to maintain your weight.
I recalled that years ago when my son had surgery on his jaw, and had to drink his meals....amongst other supplements, they suggested high calorie evaporated milk..
They also suggested high calorie condensed milk added to shakes and smoothies.
Walmart sells a large can for about $1.25...and contains close to 500 calories.
Granted evaporated milk may not be as nutritional as Boost or Ensure..protein content is probably lower....but when you have cancer and you are on a tight budget...every cent you save is good.