My friend, Val, will be starting 6 weeks of radiation for cancer of the tongue. He was told that there'd be no big problems, but that he'd lose his sense of tast for about a year. I'm concerned that he'll become disinterested in eating. Does anyone have any tips on what he might find tempting to eat or what I can do to help him in the weeks to come? Also, I'm a bit afraid to ask, is the loss of taste the only problem he'll have? Thank you for your info and good luck to you and your loved ones. Ellen

Ellen,

Welcome to this site -- I'm sorry you have to be here, but you should be able to find a lot of useful information for your friend.

It would help us to have a bit of background on his case, so we can try to be as responsive as possible. There are people on this forum who have had various types and stages of oral cancer, which can significantly affect the course of treatment and the way the individual handles it.

Is he being treated at a major, comprehensive cancer center? What have the doctors told him about the stage of his tumor? What types of tests have they done so far, and have they talked about a possible need for surgery at some point, or just radiation?

Radiation to the head/neck area generally causes loss of taste for some period of time, but it also causes other effects that range in severity from one patient to another. These effects typically don't hit all at once, but build over time with additional doses. They include dry mouth, burning on the skin (similar to sunburn) as well as within the mouth, possible swallowing problems, potential long-term dental complications, and the risk of infection. I know this sounds unpleasant (and it generally is), but if it's the recommended treatment, it's best that he be prepared up front. Many people on this forum have been through it and can provide advice and support. Also, in many cases, the doctors will recommend the use of a feeding tube, because if eating becomes a serious problem, the tube may be the best way to get the nutrition he will need.

If you haven't checked around elsewhere on this site, I would suggest that you do that, as well as logging onto this forum regularly. There is a great deal of helpful material, as well as links to other cancer-related resources.

Please feel free to come back with your questions, and we'll try to help as much as we can.

Cathy

Dear Ellen
Val is about to start a regimen that will knock the socks off him...he needs to bulk up as much as he can right now . Is he just having radiation or chemo also?
He is lucky to have a friend who cares .
Keep in touch, read previous posts ,there is lots of information you can use on here.
Take care
Marica

Dear Ellen:
Val has a long journey ahead. 1st Either consult with a Gastro Doc or go ahead and schedule a PEG
TUBE installation. He will eventually lose the ability to eat by mouth. This may come soon or late into treatment, but it will come. It is also common to lose function of the epiglotis and you aspirate food or liquid, this is BAD and can cause pheumonia, the bad kind.
I consulted a Gastoenterologist early into treatment and when I needed the PEG it was done within 24 hours and my nutrician did not suffer. I have recently been put back on my PEG due to the aspiration factor and I am 7 months out of treatment.
Darrell

Thank you all for your replies. Val is very private and doesn't even want anyone here to know that he has to go through this. He seems so upbeat to me that I'm guessing he doesn't know what's coming. We live in a small mountain town of 14,000. There is no big cancer treatment center here. The Dr. seems to have given Val the impression that this is "no big deal". He's aware of the sun-burned feeling, and the possible dental complications, but hasn't mentioned anything else.

Val had something removed from his tongue about a month ago that obviously tested cancerous. He's going to have radiation only and apparently it will be from his tongue, through his lower jaw, and possibly down into his neck. He has to have some kind of mask made to hold his head completely still during the process. Then apparently they will lift the front of his tongue and just radiate the lower portion, way back in his throat. That's all I know.

It all seemed too harmless to be true, that's why I visited this site. Hopefully, I, and all of you, can be helpful to Val. He already battled back from kidney failure about 4 months ago. He's a dear, sweet man who's already had his share of problems. Whatever I can do to help ....

Thanks so much, Ellen

Ellen, Welcome to the site. Sorry you needed to find us, but hopefully we can help your friend Val. I would suggest strongly that Val get himself to a cancer center right away. Generally, you only get one chance to defeat this disease and if you don't get it all the first time, because it is such an aggressive disease, it will exact a nasty penalty. Val should seek the best possible treatment he can at a center that treats hundreds of patients like him every year. Please urge him to seek expert opinions and treatments at a major cancer center. That is the best thing you can do to help him defeat this disease.

Ellen,

Some people like KirkGeorgia have sailed through the treatment while working and maintaining some sense of normalcy in their lives. I feel like a big baby telling my story after knowing his. I did not thing the radiation was as tough as what my wife thinks it was . I went back to work a couple of weeks after treatment ended because I felt the worse was over. I later found out that radiation was the gift that keeps on giving. I had so many side effects and the doctors acted like I was nuts bringing them up and blaming it on chemo and radiation. Almost all of them have now gone away so I know it was what I thought.

Your friend Val has a rough road ahead. You could do best by sending him to this site and reading some of the things people go through by clicking on the treatment links on the main entry page. He may or may not experience the same things as everybody else did and he may not want to know. If he won't check it out, you should so you can better help him manuever through the things that will happen during and after treatment.

Kirk, I have never said this but you are one of my heros. I am sure it was rougher than you portray but I am still amazed at how well you did!

Ed

Ellen,
We live in a small mountain town in Colorado, also. My husband completed radiation about a year and a half ago. Email me if you want - I'm curious if your friend is receiving treatment at the same facility as my husband.

Anita

Hi Ellen, Please keep in mind that some of us went through treatment without major problems (major is relative) Each person is affected by radiation differently, Val might get by without the worst side effects.