Hi. My name is Lisa, and I am new to the board. My husband was diagnosed in April 2002 with Stage 3 Tonsil Cancer. He was given weekly chemotherapy and twice daily radiation treatments for seven weeks. (I thought the treatments were going to kill him.) He had a peg placed, but lost over 70 lbs. His cancer is in remission, but after finishing treatments nearly 5 months ago, he still cannot eat solid foods. His peg was removed 2 weeks ago, before testing was done to determine his swallowing problems because of bacterial and digestive problems. After his test today, he was told his epiglottis has stuck in the open position. He takes BOOST PLUS by mouth enought to sustain himself, but he keeps losing weight and fears that he will never eat solid foods again. The doctor, after the barium swallow test, gave him some vocal excercises to do and talked to him about pnuemonia risks. Has anyone else expereinced this? The mental and physical effects of not being able to eat are hard for both of us, and we are in need of help. Any other information that you may have would help us tremendously. Thanks and blessings to you all.

My husband too had been diagnosed with back of tongue cancer in April, finished treatment in early June and is still on the PEG. His tumor was between the epiglottis and the vallicula, and his swallowing is very compromised. He cannot really drink Boost yet.

He has sought treatment with an ENT/swallowing specialist in Yale/New Haven, Dr. Clarence Sasaki, whose swallowing therapist recently recommended the use of electric stimulation to the swallowing muscles. Dr. Daphne Bascom at University Hospitals in Cleveland was our contact. In Cleveland, there is research being done about the use of electric stimulation to assist swallowing. It has just received FDA approval, and its benefits to stroke victims and dysphagia victims has been very good. It is not known if it radically improves head and neck cancel patients, however.

My husband will start therapy on Jan. 6, for 10 straight days. I will post the results here, if in fact it does help. Clinicians will be trained on this equipment and it should be more widely available by the end of 2003.

Also, Brian Hill, the moderator on this board, had the PEG for a long time, but now has resumed a pretty normal diet. According to our doctors, it depends on where the cancer was, how much scar tissue has developed, and if in fact fibrosis has set in as a result of the scar tissue. It seems that it is a case by case situation.

Good luck in your research.

hi,

i have a similar situation and am now 14 months since end of chemo&radiation. For 10 months i had professional eating school. Re-training my tounge and throat has been a slow process but things seem to be still improving. The latest thing is strengthing the E to open/close. Presently, its excercise and eating.

Teacher told me to do excercises to strengthen neck mussles. Basically i lay on my back then lift and bend my head to view my feet. It starts with 3 reps of lift and hold for 1 minute - with one minute rest periods. Then i do 30 reps with no holding or rest periods. My neck it getting stronger and the opening/closing is improving. Supposed to do this three times per day - but i only do it once a day.

Eating also excercises these mussles... like others i've found canned peaches to be a very good food source. additionally cream of potato soup is good. later i graduated to dinty moore beef stew.. other foods also work, but what i am looking for is a moist food that is slippery and pliable. i have used these to help 'streach' what seems to be the constricted region.

i also drank shakes for weeks! they are great because i gradually increased the gulp volume and frequency of gulping. The shakes are Ensure Plus, yogart and jelly for 550 cal/12 oz, or add a package of Scanshake (From Giant groceries, or a breakfast shake thing) to get 1000 cal/12 oz. After getting good with shakes, i trained with thinner liquids.

presently, i think it is the neck excercises that are strengthing and helping to lift the adams apple that are most effective.

i hope we'll see additional comments on techniques that can help us.

for me 12 months seems like a very long time, but when i look back at the gradual progress, i am very happy.

cu,
larryb

Thanks for your helpful post, Larry. It is great that you are improving so much, and I am sure this information will be of use to many people. Keep us posted on your progress.

Joanna

I did not look under this section heading when I posted a similar question about the epiglottis under the Treatment section.( My husband John has a the same type of swallowing difficulty) Iastrega, please let us know if there is any improvmentin you husban's condition. John is going to Moffitt Clinic for another opinion. I am going to keep looking for anything that will help--here or in Europe. With the internet medical advances are at our fingertips.
Keep in touch please.
Meredith

I have a list of swallowing exercises that was given me by the swallow therapists at MD Anderson. I do them, but not as diligently as prescribed...After reading these posts, I guess I had better take the exercises more seriously if I ever want to eat solid foods again.

Danny G.