Severe long term side effects from head and neck radiation

I've not had inflammation of the esophagus but problems with scar tissue left by radiation. This effected the area where the esophagus and wind pipe meet and causes aspiration which opens up threat of aspiration pneumonia, that I experienced 3 times in 2 years. Also, the dry mouth issues and other radiation side effects over time made chewing and swallowing difficult with constant coughing. So my esophagus was not really functioning. Now I have a permanent G- tube and am getting all of my nutrients and medication through the tube. I would recommend discussing the possibilities of either a PEG tube which is installed endoscopically or a G-tube which is done with general surgery with your Doctor. One way or another the tube feeding goes directly into the stomach. Because of this I am healthier than I have been in years. Wishing your son well!

@jubilta77 thanks so much for sharing your experience with me!

@omaest té ha pasado lo mismo que a mí pues después dé la cirugía dé cáncer dé lengua y posterior tratamiento dé radioterapia hace pronto 16 años estaba muy ilusionado pues podía comer dé todo pero dieta blanda, después dé un par dé años ya tuve que empezar a triturar los alimentos para poderlos tragar pero bueno me fui adaptando poco a poco y cómo podía comer dé todo pues lo llevaba bastante bien el problema empezó a surgir a partir dé hace 5 años pues me detectaron una neumonía por aspiración y la cosa sé empezó a complicar pues ya no era capaz dé tragar y me tenían qué hacer una intervención para implantarme una sonda gastrointestinal para poder alimentarme, sé me volvió a caer el mundo encima por ésta nueva sorpresa. Sin embargo después dé llevar dos años con ésta nueva forma dé alimentarme tengo qué decir que aún siendo un engorro tener qué estar cada tres horas más o menos inyectandome él batido y entré media agua para estar bien hidratado al menos estoy mejor dé cómo estaba anteriormente por no poder tragar, qué dicho sea dé paseo me produjo una importante desnutrición pues perdí bastante kilos ( pesaba 48 kilos) hoy ya peso 62 con lo qué me encuentro mucho mejor. Éso sí la fibrosis sigue avanzando y la boca cada vez sé me está cerrando más hasta él punto qué ya solo la habro un centímetro y medio por lo qué no sé que es lo que me pasará en un futuro con este problema.
Por lo qué té ruego qué sí tienes alguna información al respecto me la hagas llegar.
Gracias y un saludo.

@jubilta77 Thank you for sharing your experiences. One problem I am having is to gain weight I am currently at 104 lbs. and have not been able to gain for about 5 months although I am maintaining this weight and I feel very healthy. My nutrition formula is Jevity 1.2 that I take 4 times a day with water before and after each feeding. Each feeding is 270 ml of Jevity and 120 ml of water. What nutritional shake are you on? I still have coffee in the morning, although most of it is coughed back up. I sometimes have a vodka martini in the evening, it seems to clear mucus that has gathered, but makes my dry mouth worse. I have been noticing that recently it has been more difficult for me to enunciate clearly. My speech therapist as given me tongue and jaw exercises to help and or to slow the fibrosis down. One other thing, do you have any problems with the area around the tube. My initial surgery was not done very well and it took a long time to heal. Finally in April 2025 another surgeon was able to repair the damage and replace the tube with a larger one. It has now healed but at times I still get leakage and my skin is burned, When this happens I use Coloplast and it really helps. I hope I have been able to help in some way. Our conditions are different and yet the same. Take care.

@omaest Hola dé nuevo @omaest .
Agradezco me hayas respondido a mi comentario. Comentarte qué la marca dé batidos qué él endocrino me está recetando es NUTRISENS tdiet energy normopreico hipercalórico dé un laboratorio español, búscalo en internet, la dosis que tomo es dé 250 ml cinco veces al día y la verdad es qué cómo te dije he puesto 14 kilos en un año y medio más o menos pues yo pesa después dé salir del hospital 48 kilos y me siento bastante bien. Por otro lado la verdad es qué el cuello lo tengo bastante delgado y con señales claras dé la intervención pero dé momento no tengo dolor en el ni por dentro. En cuanto a poder tragar me es imposible ni siquiera líquidos pero veo que tú sí que puedes tomar café y a lo mejor hasta algún zumo dé lo cual me alegro a mí me encantaría poder tomarme un cafelito por las mañanas y por las tardes. Él próximo mes dé marzo voy al otorrino y veré si hay alguna forma dé poder absorber algún líquido, por otro lado decirte qué a mí también me mandaron a un fisioterapeuta y me estuvieron masajes en los maseteros y la mandíbula inferior pero no ha habido ninguna mejoría también fui a una logopeda y foniatría, lo mismo nada dé nada.
Sí me gustaría saber cuánto tiempo llevás tú operado y si tú problema era dé cáncer dé lengua lado derecho o izquierdo da igual o si era en la base dé la lengua y el estadio, el mío era estadio cuatro lado derecho longitudinal , pues creo qué no son iguales nuestros problemas aunque las secuelas y efectos secundarios sean muy parecidos.
Una cosa qué sé me pasaba, con los cinco batidos qué me tomo al día ingiero 1250 ml equivalente a 2000 kcalorias quizás por eso estoy recuperando bien el peso acercándose al qué tenía hace cinco años.
Bueno amigo deseo qué vaya todo bien y contestame a lo qué té he comentado más arriba.
Un saludo.

Our circumstances are different because my cancer was Stage 4 tonsil cancer. A tumor in the right tonsil. The treatment was huge doses of chemotherapy and 37 days of radiation. I did not have any surgery. The damage I am dealing with was caused by the radiation because it stays with you forever and continues to be active. My cancer was in 2003, more than 20 years ago but the side effects of the radiation have been numerous. I have lost all but three of my molars and on the right side a lot of jaw bone tissue was damaged, my thyroid and saliva glands were damaged and I have nerve damage in my neck and down my right arm. Difficulty eating started with the loss of my molars and lack of saliva so I couldn't chew foods enough to be able to swallow them. It wasn't long until the only thing I could eat was very soft foods and energy drinks. Then aspiration increased dramatically over the past 5 years. My immune system is weak and I must be very careful not to develop the flu or any other respiratory diseases/allergies, etc. Before getting the tube I had been hospitalized 3 times in 2 years for aspiration pneumonia. Dry mouth is also a severe problem and my teeth will probably be damaged because of that. My day to day life is pretty good but I can no longer do a lot of the activities I used to. Cancer is a mean disease but sometimes I think the treatment is mean too! But without the treatment I would not be here today. Wishing you well - Take care.

Types of Radiation & Retention:
External Beam Radiation Therapy: The machine sends beams through your body; once it's off, no radiation remains in you.
Diagnostic Imaging (X-rays, CTs, MRIs): No radiation stays in your body at all after the scan.
Nuclear Medicine Imaging: A tracer is used, but it's eliminated by the body within days to weeks, depending on the isotope.
Internal Radiation Therapy (Brachytherapy):
Temporary Implants: Sources are placed for minutes to days and removed, making you radiation-free afterward.
Permanent Implants (e.g., Seeds): These stay in the body forever but become non-radioactive after several weeks or months as their radiation "burns out," with little to no risk to others.
Systemic Radiation (Radioactive Drugs): Drugs travel through the body and are excreted, though they can make you radioactive for a short period.

Responding to a comment above that radiation stays in your body.

@kmlnj

I think you misread the comment. It stated the side effects from having the radiation which can be ongoing and forever unfortunately becoming the gift that keeps on giving in a not so good way.

@omaest I’m struggling with my weight gain as well. My last radiation was in October 2025 and up until today I only added 5kg. I just want to ask if I will ever get my usual weight back

@roblem
Thanks. I had 35 radiation treatments. I had to Google the comment.
Glad to know I am not radiating radiation. 🙂