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Severe long term side effects from head and neck radiation
Hi. I am new to this group and desperately trying to find help for my sister. She received radiation for tongue cancer about 9-10 years ago. In the last 4 years or so she has developed debilitating side effects, so bad that she has no quality of life. I’m trying to find help for her. Nothing the doctors or pain clinics have done has helped and she is in very bad shape. She lives in Germany so I can’t be there with her and am trying to research ways to help. Can anyone direct me or give me some advice?
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@linda90
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@omaest Hola @omaest , es cierto lo mío es dé lengua pero parece ser que hay coincidencia en cuanto al tratamiento en mi caso también sufrí unas dosis altísimas por recidiva al poco tiempo dé comenzar el tratamiento me aplicaban dos sesiones al día una por la mañana y otra por la tardé con un intervalo dé ocho horas entre ambas y además me dieron tres sesiones dé quimioterapia o sea para un elefante y la verdad que estuve tres meses bastante mal tomando alimentos líquidos hasta que con la mejoría posterior a los tres meses ya empecé con purés dé todo tipo dé alimentos, es cierto qué las secuelas qué deja la radio y la quimio son tremendas sea el tipo que sea el cáncer en la boca.
Pero tenemos que ser lo suficientemente fuertes para poder seguir en la brecha, me dijo un conocido en la consulta del oncólogo que él cáncer es una enfermedad asesina pero que él tratamiento también. Así qué amigo no nos queda más remedio que aguantar y apechar con lo qué nos ha tocado.
Qué té valla todo bien.
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2 Reactions@omaest Gracias lo mismo té deseo.
No nos queda más remedio qué seguir viviendo con está losa pesada. Cuidate
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3 Reactions@kmlnj I should have said the longterm side effects of the radiation are on going. As my doctor said
"radiation is the gift rhat keeps on giving."
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1 Reaction@kmlnj, Yes you'll get your weight back and maybe then some. My radiation treatments were way back in 2003, it took awhile but within the first 5 years of recovery I gradually gained all the weight lost and then some. It wasn't until 2022 that I lost almost 30 lbs. in a very short time. Overtime the long term effects had caused loss of teeth, difficulty in swallowing because of increasing size of the radiation scar tissue (similar to a burn) and other factors like aspirating. I was not getting proper nutrition with the things that I could eat and swallow. So, now I am on a feeding tube which has given me better nutrition and increased energy. I am maintaining the weight but not gaining. Take care!
@linda90 hola @linda90 . En tú caso no sé qué tipo dé cáncer has sufrido ( si es que lo has sufrido) pero mí experiencia fue qué durante él tratamiento y posteriormente durante unos meses bajé de peso debido a que no podía comer en condiciones por los efectos secundarios de la radioterapia y alternativamente con la quimioterapia debido a un cáncer dé lengua, pero sí en tu caso puedes comer normalmente seguro qué después del tratamiento irás cogiendo peso poco a poco así que té recomiendo tengas paciencia.
Yo volví ha mí peso habitual pasado unos meses ( 6 u 8 ) así qué paciencia.
Saludos y que todo té vaya muy bien
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@linda90 Hi, one thing that helped me was eating a lot of cream. It is easy to swallow, it can be a topper for many foods, delicious and very fattening! If you have a problem with mucus, it might create more...but it seems everything in life is a tradeoff...unfortunately. Best wishes to you in 2026 and always.
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1 Reaction@linda90 , I am 13 years post radiation/chemo with metastatic SCC. Last metastasis was in 2020. I try daily to gain weight but no success. I am 15 lbs lighter than before the diagnosis. Keep exercising to maintain your strength and consume as much protein as you can for healing. I used a lot of yogurt, cottage cheese and half + half in smoothies to get more calories and protein. Just do your best and if you can maintain your weight that may be the best that you can do.
@sepdvm metastatic is another thing that can pop up again? But why is the weight not going up?
Yes, metastatic SCC is a more serious issue, though a newer Immunotherapy drug has cleared my most recent met. I wish I could answer why no weight gain. Perhaps all the stress on our bodies from cancer and treatments plus age related muscle loss makes weight gain difficult. I have resigned myself to just maintaining where I am and being satisfied with that.