My husband had stage 4 tongue cancer with surgery to remove the left half of his tongue down to the base in November of 2008. He also had a graft of tissue and arteries from his arm to rebuild the tongue. He had chemo and 39 radiation treatments which have left him with no saliva, little taste and limited feeling in his mouth. He has not really eaten much solid food in the past 2 years, drinking mostly protein shakes and juicing. He says the food doesn't taste like much, it is difficult to move around in his mouth, he has to drink water or other liquid to wash the food down, and he often discovers food in the corners of his mouth that he didn't swallow. He lost 80 pounds from the onset of the cancer through treatment and has to consume over 2000 calories just to maintain his present weight. That would be difficult to do because eating solid food takes so much time and effort, consequently he finds it much easier just to drink his meals. I can't imagine him living for the rest of his life avoiding solid food. Any suggestions would be greatly appreciated.

Hi Joann,

I can only partially relate to your husband's situation. I didn't have surgery so kept all of my tongue (my tumour was on my tonsil). I had 33 radiations (I cancelled the last two due to very bad reaction to chemo/pain meds/steroids or just the whole thing), and three sessions of Cisplatin. Your husband lost half his tongue and I also don't know which chemo he had.

In my case, 9 months since treatment my saliva is slowly coming back (but they tell me it will never be what it was before treatment), I can taste again quite well, and I'm back on solid foods.

I do tend to gravitate towards certain food that are easier to eat; salads (with cheese and/or a bit of meat for protein), oatmeal, toast with plenty of butter and jam, spaghetti, fruits. I, too, find food in the corners of my mouth, and I attribute that to the low saliva levels, but certainly your husband may have additional trouble with his half-reconstructed tongue (I can only guess).

I can only suggest encouraging him to try some of the foods I've listed above, but I would not be surprised, based on your description, if he simply doesn't find it worth the work and trouble, considering he can't really taste the food anyway. I remember when my taste buds were on strike, I found it very challenging to eat. I was surprised by how important taste was to wanting to eat (I thought if I was hungry I'd want to eat, but at least part of wanting to eat must be based in the pleasure/experience of taste). I'm still drawn to stronger flavours, I guess wanting more bang for the buck, as it were.

I don't know if any of that will be helpful. If he's content on his liquid diet, maybe it's not worth worrying too much about?

Good luck

-Seth

Hello Joann:
I, too, had, and still have, a hard time swallowing (after 3 years), and after my feeding tube was removed, lived mostly on liquids because they were easier to get down, and I couldn't taste anything either. I found the Carnation Instant Breakfast VHC (Very high calorie), 8.45 fl oz, 560 calories, to be the easiest to drink. I still tried to eat solids, although nothing tasted like it was supposed to. I still have taste problems, but force myself to eat solids. I discovered if I cut up sweet onions and ate them along with whatever I was trying to swallow, it was easier to go down. Not sure why, except maybe the onions slid stuff down. Also, the onion taste hid the nasty sweet mucus taste I still have. Maybe you can get your husband to just try something, with the onion idea included, and see what happens. I discovered, for some reason, Boston Market chicken pot pies, when overcooked and the dough is crusty, will go down quite well with the onion mixed in. This probably sounds gross to you, unless you're an onion lover which I am not, but it's worth a try. We're all different, so what works for one may or may not work for the other. Tell hubby that we are all here to help each other and learn from others experiences. I hope he at least tries some of the ideas others have given him, and think he is so blessed to have you as his caregiver. Prayers heading your way.
julieann

Hi Seth, Thank you so much for your reply to my post. It was my first so it is nice to see people responding right away. My husband also had cisplatin chemo, 7 sessions. I appreciate your suggestions and will give them some thought. I go back and forth thinking it doesn't really matter what he eats as long as he has energy, which he certainly does. I just can't imagine him living for the remainder of what I expect will be a long life, without eating food. I am always cognizant of what he is dealing with and don't want to be a nag. Joann

Julieann, thanks so much for your response to my post. I am excited to see people responding so quickly. You gave me some very helpful suggestions and I will definitely give some of them a try. He says, as you do, that he does not have the desire to eat and is actually seldom hungry. He is really a good sport about it but I do expect him to live a long life now that he is cancer free and can't imagine him not eating solid food. He is happy and healthy so I guess that is the most important thing. Thanks again. Joann

joann

Well, worst case scenario, your husband can indeed live without solid food indefinitely. At least that's what the doctors are all telling me. When you mentioned his difficulty with food not going down and remaining in the mouth, I wondered if he has had a Modified Barium Swallow test (MBS). His doctor can order one and it's administered by a speech therapist in the radiology lab. It highlights any difficulties in swallowing and then the therapist can give him exercises to improve.
While I failed all my MBS, it sounds like your husband might only get a D or C grade and could easily get up to an A or B with therapy. He may not have any issues at all in swallowing, just tired of cardboard taste, but it can't hurt and only help him. Finally, I am amazed at how stubborn your husband must be as I am so sick and tired after two years of a feeding tube of not eating solid food that I would gladly eat cardboard now
Best Wishes
Charm

Here is a list of easy to eat foods that may be helpful.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621

Wow, that is a tough one. I don't know what it is like to deal with the tongue issue. Mine was the roof of my mouth. I didn't have one which made swallowing anything a little more difficult. They actually rebuilt mine so now things are easier to swallow but I have no desire to. And most things don't even smell good which doesn't help the desire part. I am not able to even try solid foods as I have to upper teeth and some things are not appetizing pureed. ;-) I have only tried a hand full of things in about two years as well. I have bad dry mouth and when I do try things I have to drink a lot of water to help get it all down. I think to some degree it is just going to take a while and as long as he is trying and drinking the shakes, that's pretty good. He has not given up. Keep your head up and this to shall pass.

I had tongue surgery in September 2010. I have the same problems ...I can chew a few foodsif they are cut real small and still have trouble moving the food to the back of the throat. It ishard to eat with other people as it takes me so long ..so I eventually give up and make a shake. I also can eat things like snack cakes, cookies, cakes and breads because they are soft and smoosh up well to be swallowed, unfortunatly I am diabetic so I get a double whamy!! --Does your husband use protein powder? I find that helps with the energy factor. He just has to keep trying ..yes, I have to admit it that life will never be the same again ...I too would like to hear from others who ar struggling with these issues!!

Laureanne, I sent you a long reply to your PM. You will improve. It takes lots of time. Try working with a physical or speech therapist to help you with your tongue mobility. Im sorry you are struggling but you really are a very very fortunate person! Here is the list of easy to eat foods which may be helpful with trying to keep to a diabetic diet.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621

Joann, one suggestion I haven't seen here is to try Megestrol for appetite stimulation. Here's a link:

http://en.wikipedia.org/wiki/Megestrol

It helped my father when he had no appetite years ago, and is now very effectively helping my landlady with same during her chemo for breast cancer.

All the other thoughts our friends have added are good ones. I had swallowing problems too, for months, and had the tests, speech therapy, throat dilations, etc. Eventually things returned to more or less normal.

My thoughts are with you and your husband.

David 2

Hey Joann and Laureanne,
I agree with Charm - an MBS (modified barium swallow study) and a referral to an SLP is a great place to start. Speech Therapy can offer an exercise plan much like Physical Therapy to improve your range of motion and sensation to make chewing and swallowing much easier. There are also several ways to compensate for the impairments that result from surgery and chemo-rad effects.

Has anyone else had a problem with "first bite syndrome"?? I have alot of cranio facial nerve damage. I am trying to eat soft foods even tho' it is very difficult and it sends the right side of my face into a spasm that makes me cry out in pain.(Kinda like if you bite ito a very sour lemon.) The tail of the parotid gland was removed and this may have alot to do with it. It's not only the first bite sometimes,even drinking liquids triggers it. I was wondering if there was something to do at home to help get over this.

Charm, Thanks for your reply. My husband never had a feeding tube and has been sustaining on protein drinks and juicing for 2 years now. He has had a swallow test and actually has no trouble swallowing except that his epiglottis has been partially fried by the radiation and he can occasionally aspirate if he is not careful. He spent many weeks in therapy to help with the extreme swelling in his neck and throat area and that has now come back close to normal. He can eat but chooses not to due to the lack of taste and he can consume so many more calories at a faster rate drinking than when he tries to eat.

Glad to hear you say he can sustain on liquids. Guess we will just keep chipping away at the eating process a little at a time.

Thanks David, I will check into the Megestrol. Glad to hear your ability to eat and swallow is near normal. I am waiting for the day my husband has a real desire for solid food.

Laureanne, Sounds like you have gone through a great ordeal as well, your surgery sounds quite similar to my husband's. So nice to be past those days and only have this to struggle with. My husband makes shakes with Ensure, muscle milk, bananas, and ice cream every day. I juice fruits and veggies mostly every day. He did not like the grainy effect of protein powder so we have not been using it. Thanks so much for your response. Best of luck to you.

JoAnn

I use a Vitamix blender to totally pulverize the dinners my wife cooks each night. Throw in three cups of water and 90 seconds later, everything goes nicely down my feeding tube via a syringe. A couple of tablespoons of flax seed oil boosts the calories twice a week. I get a burp "taste" and it's not bad. We can even do Chinese and pizza take out this way, and recapture the old days.
For my wife and I , there is a big psychological boost to be able to "eat" the same foods together. I now look forward to dinner each night at home. An unexpected bonus was an article I wrote about it got published in the paper plus a slightly longer version will be published by Vitamix as one of their winners of their "Inspiration" contest in a coffee table book. Nice validation as I contemplate a future with no articulate oral voice.
Everybody's different and maybe he won't want to do it on a daily basis, but you can tell your husband it works for me.
Keep the faith
charm

Way to go Charm!!

Charm, you are - as always - an inspiration for all of us.

And Joann - things really take time. Even now nearly 2 years out of treatment my throat is still tight, I keep water handy for just about every bite and usually take one liquid meal a day. Patience is the name of the game.

D2

Greetings. male, 45, 35 year survivor. I had a tumorectomy of my left soft palate, 85 RADS (the measurement at that time) of beta and gamma over a 6 week period, and 2 years of chemo to include Vincristin, Adriomycin, Dactinomysin and Cytoxan. I have virtually no taste and every time i swallow i aspirate food which often also goes into my nasopharynx (and rots sometims giving me intermittent dragon breath, LOL)
few things i have found. Dairy is very good for protein and ease of eating. i put beef stew in a blender sometimes, which is not bad, but usually eat normal foods of ANY type, but it is not interesting to me, so provided i have enough calories and basic nutrients, i just eat anything that catches my eye or looks easy to swallow. chow mein is good, omelettes that are wet, thick and gooey (refried beans, oatmeal, etc.)
perhaps your husband would be able to taste citrus or more sour things. I find if i drink wine with a meal, it helps stuff go down and lets me have some taste.
I will often add oil (corn, saffola, peanut) to foods to make them slick and to add calories, at 120 cal per Tablespoon. I also often add metamucil to thicken things if they need more bulk. you may notice a trend of stuff that sounds pretty vile, but i think we measure the utility of food more than the palatability, yes?
I had an inch of my carotid replaced after 8 TIAs, due to 97% blockage, secondary to the radiation stenosis in 1997 and in 2002 polyps removed from my vocal folds, caused by the oropharyngeal tube in the 97 surgery, then in 2004 a very unsuccessful crycopharyngotomy to try to open my throat and as a result my swallowing in accomplished mostly by neck manipulation and head tilting. My epiglottis is half gone and fairly paralyzed
as is my lower lip and jaw, in other words, eating is something i do, like shaving or carrying out the garbage. I eat cause i have to to do the things i want to.
i have people email me and text me reminding me to eat, cause i will forget for days, heehee. but truly, it is all good. I have not felt hungry in 35 years and dont really remember how things taste, so i dont think much about it except when i am choking or spontaneously vomiting.... pretty entertaining, certainly.. :o)

alright im done prattling on, but best of luck, and remember... It is always good, even when it is not. :o)

side note: Cannabis can be very effective in improving appetite. Dont know your state law, but if you can, give that a try. i cant cause i have a federal job, but im told it works WONDERS.

peace

That is a hard thing to accept-that life will not be the same. smelling and tasting food is so basic a part of life. I am hoping th e zinc will do something to regenerate the taste buds.

Chris, be careful with the zinc. Years ago my father killed off his taste buds overdoing zinc lozenges in a hope that they would fend off the common cold. All things in moderation. Also, I don't *think* many people on here lose their sense of smell; only taste (I certainly never lost my sense of smell).

Kathi G, your "first bite" problem sounds very difficult! I've had primarily radiation and chemo, with only a very limited neck dissection (basically a biopsy that confirmed no residual cancer - yay) but at about a year from radiation/chemo treatment I'm staring to have neck muscle spasms. I suspect it's a side-effect of the radiation, but I've not had opportunity yet to ask my oncologist. Could that be what you're experiencing? I've been told conversationally that it may go away in time.

http://oralcancersupport.org/forums...at&Number=131209&nt=2&page=1

Good luck!

Lots of inspiring stories on this thread. I'm fortunate in that my taste is 90% returned, I can swallow pretty normally, I can handle *some* spice, and my dry mouth is gradually improving (although will probably never approach normal, whatever that is).

Cheers from London

-Seth