head and neck radiation for oral cancer - how to eat when food is blah (no taste)

[Karo]

i am almost halfway through radiation therapy for oral cancer. my taste buds have all but diminished and i am having a big issue with managing to eat food that is devoid of taste. this combined with a dry mouth - moistened only with strands of gluggy saliva makes mastication difficult. food textures add to the level of difficulty i experience. when it's time to eat i tend to postpone and postpone as i know that whatever i conjure up as a possibiity will fall way short and i'll be disappointed yet again. i am very nervous as my weight is tending in a downward direction and that is not acceptable. i am hitting a brick wall around this issue in spite of being aware of the smoothie, sutagen, fruit and milk suppplements ethos. anybody out there have any good tricks to help me breakdown my brick wall. i have to admit that some of it is attitudinal. one good thing i discovered this morning is that set jelly can be added to a smoothie to give it some small semblance of flavour.

[Rodney]

Hi karo when I was having treatment and could not swallow I hit the dairy section of the supermarket so I had lots of yogurts and thick puddings like Milo etc . I also had stewed fruits not that I think it was healthy it was the the only thing that I could swallow . I really was not to keen on the sustagen stuff but found adding ice cream and a topping it was okay ..... Feel for you as it's a real challenge but you will get there ,,,,,,,,

[Rodney]

Hi karo when I was having treatment and could not swallow I hit the dairy section of the supermarket so I had lots of yogurts and thick puddings like Milo etc . I also had stewed fruits not that I think it was healthy it was the the only thing that I could swallow . I really was not to keen on the sustagen stuff but found adding ice cream and a topping it was okay ..... Feel for you as it's a real challenge but you will get there ,,,,,,,,

[Jules2]

Hi Karo I looked on eating as part of my job in this process. It still wasn't easy but I basically broke down the process and took out the bits where I could be responsible and in control of what was happening to me. Food was one of those things aswell as self care of my mouth and skin etc.... I made it my job to eat 3 times a day at least and just focussed on things that I could get down rather than taste. It isn't all that much fun but at least I didn't lose too much weight. I found eggs to be good aswell as pasta in soups. I would make savoury omelettes with some vegetables in it, plus yoghurts etc.. as Rodney has stated. Soups are another good thing also. Julie

[#5]

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[debstar]

Hi Karo, my name is Deb, I'm so sorry to hear that things are not going well with your treatment, it something I'm about to experience with my fiancée, as he is about to go through radiation therapy starting with the planning session on Tuesday, he wanted me to ask you a couple of questions if you don't mind..its all beginning to be very real to him right now and today is a bit of a struggle.. he says that the questions he has are silly but, I think if you feel it you need to say it and so I said I would ask you, firstly, what did you have to wear? T is very worried that what ever he wears will rub on his scar which is still quite tender, do you get hot? or is it cold in there? also .. what did it feel like? and ... at what stage did you start to get sore? .. and are you tired all the time or just after the treatments? ... did you still work during the treatments? he wants to ask this as his job is very physical (he is a powder coater and it requires lifting and bending etc.) so he is worried that he will be tired and not able to work.. he has sick pay so its not a drama but as I said he is getting quite fretful today. I would understand if you don't want to answer, some things are personal and I understand if you don't feel like sharing. but like every one else on this site, we are just trying to do our best to understand this madness that has been thrust upon us.. I wish you well for the remainder of your treatments, and I know we will be thinking of you as we embark on our journey .. best wishes and our kindest regards, Deb and T

[Rodney]

Hi Deb and T I have had two rounds of radiation treatment for head and neck cancer, it might help T understand what happens at planning if he is having radiotherapy on the throat/neck they normally fit you with a mask so that they can align the treatment , when you first start there is no pain , it depends on how long the treatment and the strength of the beams but I found the first two weeks where not a problem it was after that I started having trouble with eating and my neck was starting to blister, you can only use sorbelene cream but the nurses can give you soaks before and after treatment but it's important that you let the staff know how you are going. I was okay to work but during the last weeks took the time off as it was better for me , T doctor should be able to work out the work plan , as for getting tired this occurred later as well so I had naps in the afternoon , as I planned my treatment for first thing in the morning I would go to bed early, the staff will give you tips about mouth washes etc , and he should see the dietian for help to , as it's important that he keeps his weight up. During the treatment I just heard the machine clicking noise and each session does not last long it's more getting the positioning right for the best treatment. Hoe this helps T if he or you have more questions I am happy to share , best wishes Rod

[Jules2]

Hi Deb and T I will give you some of how I found treatment. Firstly, no question is silly ... if ya dont know you dont know and you find out. 🙂 None of us knew beforehand and I wish I had found this site a little earlier than I did. Wear whatever is comfy and easy to get on and off, you will wear a gown during treatment. We were given a cubicle to get changed in and then we waited in a separate section to the main waiting room and then would get taken into the treatment room. I suffered from the cold during treatment, I had chemo first and think that impacted on that - plus I had lost a reasonable amount of weight by that stage. Nothing drastic and I just always made sure I had a jacket (think layering). I never used to feel all that much during treatment. Mainly you can hear the machine whirring a little as it turns and at times my tongue would feel quite burnt after treatment. This is when I would go straight to the little hospital shop and buy an icecream. Plus I would always carry cold water with me and made sure I drank plenty after treatment. I did get tired and didn't work during treatment, however, I was a country patient so distance impacted on that. Doubt that i would have worked anyway as I was quite affected by the treatment. Not everyone is the same and some people manage to work or at least return to work as soon as treatment is finished. Some tips would be .... treat oral hygiene/care highly and start it right from the beginning. Aloe vera and honey can be your friends as they are both natural treatments that help the skin heal. I started oral hygiene from the start and made sure I did the salt water and bi carb rinses regularly during the day, plus I used honey and aloe vera on my skin "before" it became bad. Prevention is good ... also think ahead re food and how you can deal with the different stages. Stay in close contact with your cancer nurse or radiation nurse - they are invaluable and can offer all sorts of solutions and advise during treatment. Ok, all the best to you both and please feel free to email me through here if I can help further. Once you get started it isn't so scary, just the thought of it all is the hardest part. Julie ps ... make up litre bottles of saline solution and keep in the fridge and do saline soaks after treatment - helped with keeping my skin ok for treatment. 🙂

[CJF]

Hi Deb and T, I wish I had found this site before I had treatment for my tongue and neck cancers. Like you I was very bewildered by the whole process and found that any little thing that gave me a sense of control was important. Here's a bit about my experience. I asked for a tour of the treatment rooms and was shown the whole process from beginning to end before my first treatment. It demystified it for me. Over the course of the treatment my nurse gave me cream for the burns - as specified by my doctor. Different doctors have their preference but I must say that over the course of my 7&1/2 week treatment my neck did not burn too badly. I wore soft scarves and low cut tops to keep the area from being rubbed. After the treatment the area is still very tender for 2 -3 months and I used aloe vera which helped immensely. I also drankaloe vera juice after the treatment. In terms of burning inside the mouth and throat, I drank lots of soda water and the doctor gave me liquid painkillers. The radiotherapy changed the consistency of the saliva during treatment. I found that the bubbles helped to break it down so I could swallow. The radiotherapy also affect my remaining taste buds and I had a lemony metallic taste for much of the time. This made me feel quite ill but once I mentioned this to the nurses and the dieticians they gave me medication for the nausea. I lost a lot of weight but I looked at eating as my job - I could control that. I found soft foods like ice-cream, mashed potato etc impossible to eat - largely due to my changed tongue. Contrary to most people I found that harder foods like toast and dry biscuits, chewed and quickly with a mouthful of water much easier to get down. I also found the taste of bananas quite pleasing. I ate lots of tofu and I drank the horrid Sustagen. During the treatment I didn't work at all. I had the neck dissection and had to wait 6 weeks for the skin to be flexible enough for the mask to be fitted and treatment to start. I probably could have worked during the first few weeks of treatment but by the 4th week I was basically sleeping all day except for treatments. Everyone is different and my tiredness was probably exacerbated by the two surgeries I had had just prior. I guess the main piece of advice I would give is that you should communicate with your doctors and nurses. The are wonderful people and will do everything to make you feel as well as possible during your treatment. I hope this helps. I'll be thinking of you during your treatment.

[#10]

I suggest considering protein powder a few times a day.