Severe long term side effects from head and neck radiation

@linda90 I had my last radiation and chemo in September. I still have severe mouth pain and dry mouth. No Idea how long I have to deal with it. One Dr told me it could be permanent. In that case it looks like another feeding tube is in the near future

@56tburd
Pues me alegro qué lleves él problema con ésa actitud tan positiva yo también me esfuerzo lo máximo para llevarlo lo mejor posible.
Una pregunta: a tí también té han tenido que implantar una sonda por el vientre para poder alimentarte a base dé batidos normo proteicos y calóricos? Y cuanto tiempo llevas (sí es qué té lo han puesto) pues me gustaría saber sí se produce algún efecto secundario por el lugar donde sé instala la sonda, a mí me lo han implantando hace un año y cuatro meses y todavía tengo qué usar gasas y apósitos, dime también sí puedes beber líquidos por boca. Es cierto qué hace 15 o 20 años sé tenía muy poco conocimiento en este tipo de cáncer en la lengua y especialista había pocos y no muy buenos pero a día dé hoy está todo igual qué antes no sé ha avanzado nada en está enfermedad.
Otra pregunta, posterior al tratamiento podías comer más o menos normal o té pasaba como a mí qué ya me tuve qué alimentar a base dé comida triturada.
Gracias por tu comprensión y atención prestada

@jubilta77 My cancer was Stage 4 tonsil cancer over 20 years ago. Through the years I have had a lot of the expected long term effects of the radiation. The scar fibrosis has caused swallowing issues and as of July 2024 I have had a G-tube in my stomach. Before the tube eating gradually got harder and harder until crushed food, mashed potatoes, and smoothies wouldn't go down without the fear of aspiration. I had aspiration pneumonia 3 times in two years. I will have the tube for the rest of my life. I still have coffee with ice cream in it every morning and a little bit of vodka over ice in the evening but other than that all of my nutrition comes through the tube. I am on a formula, Jevity 1.2. I am maintaining my weight and have more energy. At first I had issues with the healing around the tube but that has cleared up and now things are going well. Take care and I encourage you to do your best at keeping a positive outlook on life.

Our similarities are many but I cannot drink all liquids. I do not drink any shakes. In fact much of my morning coffee is coughed back up - but it does one thing and that is get rid of some of the mucus build up over night. I am careful as I swallow so that I do not aspirate . I take one small sip at a time. In the evening if I have a cocktail (vodka over ice) I take even smaller sips. In July of 2024 I had a G-tube inserted in my stomach because no matter what I could eat it wasn't enough and I was starving myself. For awhile I was able to eat some mashed and soft foods along with the liquid formula through the tube. But soon it became apparent that food was not going down my esophagus and I was coughing almost everything I had put in my mouth back up. So now I am taking all my nutrition through the tube and the only thing going into my mouth is the coffee in the morning and the cocktail sometimes in the evening, My tube feedings are 4 times a day 4 hours apart. The only thing that goes into the tube is my formula, Jevity 1.2 and my medications. All of my medications are either in liquid form or crushed and put in water so they can be administered through the tube. My husband helps me fill the syringes and attach them to the tube. I have added a photo of my meds and one of the tube.

@omaest pues estamos los dos poco más o menos,
Hay solo cinco años dé diferencia y qué yo tenía 62 años cuando me operaron pero el resto es muy similar. Él batido qué yo tomo sé llama Tdiet y es dé la firma nutrisen té adjunto una foto para qué lo veas me tomo 1250 mililitros al día en cinco tomas dé 250 mililitros

@omaest pues estamos los dos poco más o menos,
Hay solo cinco años dé diferencia y qué yo tenía 62 años cuando me operaron pero el resto es muy similar. Él batido qué yo tomo sé llama Tdiet y es dé la firma nutrisen té adjunto una foto para qué lo veas me tomo 1250 mililitros al día en cinco tomas dé 250 mililitros

Our similarities are many but I cannot drink all liquids. I do not drink any shakes. In fact much of my morning coffee is coughed back up - but it does one thing and that is get rid of some of the mucus build up over night. I am careful as I swallow so that I do not aspirate . I take one small sip at a time. In the evening if I have a cocktail (vodka over ice) I take even smaller sips. In July of 2024 I had a G-tube inserted in my stomach because no matter what I could eat it wasn't enough and I was starving myself. For awhile I was able to eat some mashed and soft foods along with the liquid formula through the tube. But soon it became apparent that food was not going down my esophagus and I was coughing almost everything I had put in my mouth back up. So now I am taking all my nutrition through the tube and the only thing going into my mouth is the coffee in the morning and the cocktail sometimes in the evening, My tube feedings are 4 times a day 4 hours apart. The only thing that goes into the tube is my formula, Jevity 1.2 and my medications. All of my medications are either in liquid form or crushed and put in water so they can be administered through the tube. My husband helps me fill the syringes and attach them to the tube. I have added a photo of my meds and one of the tube.

@jubilta77 Hello again. I get 1440 ml of Jevity 1,2 in the 4 daily doses. I would like to gain some weight but so far my doctor thinks I'm doing okay. I would like to see a dietician to see if they can increase the amount of Jevity I take daily. Thank you for sharing your information.

Hi @roadtecguy,

Not sure what kind of cancer you had but I had 35 rounds (7 weeks) of Photon radiation for a total of 70Gy (Gray) and 3 rounds (211mg each) for a total of 633 mgs of Cisplatin chemo for tonsil cancer back in 2008 but no surgery and I did research then and found in an England Journal of Medicine that honey could help soothe the throat pain from the mouth sores/ulcers you will get. I did shots of real honey not the ones you find in your local grocery store which most all are synthetic and don’t have the same benefits. It definitely took some of the edge off for me. This honey is often quite thick so dilution with some warm water or tea would enable it to coat and soothe the throat.

I would only use MANUKA honey (it’s from New Zealand) which you can find on Amazon that scores at least UMF 15+ and MGO rating of 500+ are considered potent enough for medicinal use- UMF ranges from 10 to 25, the higher the rating, the more potent the benefits are, and of course, the more expensive, the honey. Also, the higher the rating the thinner the honey and better tasting- I use UMF 18+ and 700+ even now for many health benefits it offers and my most recent cancer treatments I received. In addition, I heard very good things about Red Light therapy, which uses infrared light from a wand in the throat has worked well for many. Someone also said MuGard is proven to reduce mouth and throat soreness associated with oral mucositis (OM).

To help with the brutal dry mouth and after my research I tried ELECTRICAL STIMULATION ACUPUNCTURE in 2015 which ironically was just being offered at my cancer clinic for head & neck cancer patients. I was tested to get a baseline and retested after 8-10 appts. and had great results. Never needed to go back and has been a non-issue even with only one working salivatory gland, and I don't have to carry a water bottle with me either to this very day. Since then, I believe there are other additional avenues like sprays to help with that. I also slept with a Humidifier on my end table to make sure there was the most moisture possible in my bedroom to help with sleep.

I got this from my other cancer group SPOHNC and it mentioned AQUAx2 which is a clinical research study for people with moderate/ severe dry mouth (xerostomia) caused by radiation therapy purpose is to assess the efficacy and safety of "gene transfer" study drug called AAV2-hAQP1.

In addition, I didn't have this available to me but others on this support group site have mentioned “Xylimelts Stick-On Melts” you can buy off Amazon and the box of 40 was less that 10 bucks. People say they really work, and they sleep through the night. And their daytime dryness is much better also. You should research using for extended period of time effects. Also, Biotene spray is effective long time after 2 or 3 sprays! And more recently there is a Aquoral Protective Oral Spray- Dry Mouth Relief which is more than temporary relief of dry mouth. Or a prescription of Cevimeline.

God speed,

Rob