Hello,
I am new to this board, but am looking for answers. My father recently was diagnosed and went through radiation and 2 different chemo treatments over the course of 6 weeks to treat tongue cancer which had advanced to several of his lymph nodes in his neck. His treatment was extreme with radiation every day for 6 weeks, along with the 2 chemos every week. So far, it appears that this was effective, and there's no cancer (right now) in his body. He also recently had a neck dissection to remove the lymph nodes.

Emotionally, he's doing better than when he was going through all the treatments, but physically he's lost almost 40 pounds and is having a very difficult time eating again. He has a stomach tube and used it while going through the treatments, but now he has to really get most of his nutrition through the mouth, as the doctors want to remove the tube. Everything he eats he can't taste, at all. He hates eating. He says it starts out o.k., like the first 2 bites he can handle, but then he has this horrible taste in his mouth that just gets worse with every bite. He has hardly any saliva, due to the radiation, so getting the foods down is difficult and sometimes everything sticks in his mouth and he has to scrape it out. He's so frustrated and i hate to see him like this. He was never a large man, but enjoyed the social aspects of food, and now he dreads eating and doesn't want others to be around him when he has to do it, cause it's such a chore.

Today he tried to have some soup and he was forcing himself to eat just a little bowl, but then he ended up throwing it up. I was wondering if anyone out there could help me with some eating advice. He's 71 years old and hasn't joined any sort of support group in our area. He also doesn't own a computer, so doesn't have access to online support groups. I was trying to think of some other options, food-wise, that he could try, like protein shakes, cause then at least he could slurp it down fast and he wouldn't have to agonize over every mouthful. He does take about 2 to 3 Ensure Plus' a day. Has anyone ever had this experience with the awful taste in the mouth?

His treatments finished about 3 months ago. We really thought he'd be back to eating normal again by now. His doctors haven't been of much help at all with the post recovery. I guess they figure he should be happy cause, so far, it appears the cancer is no longer there. Life is so different for him now though, and he's searching for answers.

Any suggestions would be sooo much appreciated.

Thanks! Rebecca

This message has been edited. Last edited by: Dr Vinod K Joshi,

hi rebecca
its early days yet for eating for your dad.i finished all my treatments 16 months ago and was in the same situation as your dad is now.i dont think they should be thinking of removing his tube at this early stage,i am still using mine.this is what i can manage to eat 16 months out..... 1 slice bread and butter with 1 slice of corned beef......1 tin of soup a day plus my feed through the tube at night.infact reading about your dad has made me realise just how far i have come.its still too early for him to be eating and i too felt it was such a chore and i also had to scrape the food out of my mouth.it takes a long time to eat normally and the radiotheraphy does a lot of damage to the mouth and throat area.i still cannot tolerate anything with pepper or spices in,it burns like billyo.i think you should get him to tell the drs the trouble he is having with eating and i'm sure they will want him to keep his feeding tube.all the best love shirl xxx

Hi Rebecca,

I can't give you any advice as I am only just over 3 weeks post treatment - I just wanted to say to you that I have accepted my life is never going to be the same again. I have 5 ensures a day plus something called pro-shot to up my calories to 2000 to aid my recovery. The pro-shot is a high calorie concoction.

I hope your Dad turns a corner soon.

Love Chloex

Hi Rebecca,

Sorry about your Dad. I am afraid it could be more than a year before eating somewhat normally. I am 4 years from treatment, and can eat fairly normally, though smaller portions and longer eating times. I also didn't like to eat in front of others, though that isn't a problem now. I only had radiation, so I don't know if the chemo is affecting his taste.

Anyway, here are some suggestions that worked for me. Does he have a blender? He can puree just about anything, and drink it, or heat for soup. Make sure he keeps drinking the ensure or boost. I make a drink of boost, yogurt, fruit, flax seed, plus I throw in some vitamins I can't swallow. He should be taking a multi vitamin. It will be easier for him to eat slippery things, like veggies in butter, marinated mushrooms, peppers, etc. (if he can handle vinegar) Salads were one of the first things I could eat, though easy on the vinegar. You will find experimenting with different foods is the way to go. Fried or scrambled eggs and yogurt are another option. Mainly I was on liquids and soft foods, soups for about 2 years. His saliva will get better, but may never be normal. His taste will definitely come back, salt was the first thing I could taste. He might want to try a meat tomato sauce without the pasta. Though he needs to keep trying, because he will be able to eat it at some point. Acidic and spicy foods probably won't work for him. Some acidic fruits can be made palatable with sugar. For meats, try meatloaf; I was also able to eat rare steak cut up fine, with au jus. When he tries bread dipping it in au jus or some other liquid will help. Chicken can be cooked in sauce, like chicken cacciatore (sp??) Get him to cut his food very fine and take much smaller bites than he would normally. Sometimes I found washing it down with water or milk helped. Instead of 2 or 3 meals, he should get used to eating more often during the day, smaller portions. Smaller portions will also help with the gag reflex. Cooked cereals like oats might work; cold cereals with lots of milk, and some fruit cut in worked for me.

Try to keep his spirits up; this too will pass. If he likes to read or watch TV, eat while doing these; it takes your mind off what you are eating. If I think of anything else, I will post again. If you need some recipes to get you started, I make a mean onion soup!!

Good luck,
Teri

For what ever reason I didn't have a tube and lost 80 lbs through it all (radiation).. it was difficult to eat after I started to heal up, but it was easily 5 months before real food came in to play... since everyone has a different story,... I thought I'd share mine... I lived off of Ensures (two - four a day) and it took 30 minutes to get one down..... sometimes it wouldn't stay down.....so you're dad and I have a bit of the same story....even water felt like it had bones in it... take it slow and go for the liquid nurishment drinks.... it sustained me until better days came.

I would stay away from any spices, food with "edges" until his throat is back to feeling like more solid stuff.

best wishes

bob

Hi Rebecca

I hope your dad's doing well.

I didn't have rt or chemo, but my tongue was pretty torn up for a while after my hemiglossectomy and resection. After my nasogastric tube was removed (oh, happy day!) my diet consisted of Ensure and Boost (2 or 3 at each "meal"), a lot of soy milk, hot cereal (a cup each of soy milk and water to 1/3 cup of the cereal--makes it drinkably thin) and baby food. I also found it helpful to add liquid vitamins to my alleged food. I also found it helpful to drink a lot of water when I ate.

How are you holding up?


Julia