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