John just had a swallowing study done because he cannot swallow without difficulty. He was through with radiation in September of 2002 and had a radical neck discetion in October. Unfortunately, there has been a significant reduction in the size of his epiglottis due to the radiation. The therapist said that therapy would no longer be helpful. She said his two choices were to either continue to eat through the peg tube or to eat by mouth with a swallow, cough, swallow method to attempt to keep the esophagus clear. Has anyone heard of any reconstructive type surgery or anything else??

Thanks Meredit

Hello Meredith,
Sounds like John has the same problem that I have when swallowing. There is no pain associated with swallowing, the food just gets stuck. I will be seeing my surgeon on Thursday about having my esaphogus dilated with a balloon. He will be giving me more details on the procedure. He did state that he has had very good success with that type of procedure and it takes less than an hour to perform. I will let you know how it goes. I have had a peg tube since 1/25/02.
Victor

Hi Meredith:
I will be having a swallow study this Thurs., Jan. 16th. I will ask the doctors there, they strictly deal with head and neck cancer patients. What kind of therapy was John having?? Anything else they have tried?? In case the doctors want to know I will be able to let them know. Hope I can find something new!!

Mike D.

Like some of you, I too have difficulty swallowing anything thicker than broth..and it is not painful, but food just gets stuck in my throat. I will return for another swallow study on Jan. 30th, but noone at M.D.Anderson has discussed any procedures to improve the situation. My radiation treatments ended in Sep.2002 and I am getting a little frustrated by my slow progress.
I will watch the board to follow the progress of those of you who wrote in.
Best of luck,

Danny G.

Thanks for all the response. John's food does not get stuck, his epiglottis does not close over his air passage and bits of food go down there. If he does not cough it out, it continues to his lungs. The therapist was not encouraging saying that his epiglottis has been greatly reduced by the radiation (his tumor was at the base of the tongue and just above the epiglottis) and he will never regain his ablility to swallow without a possibility of aspiration. We are not ready to give up and would go anywhere for swallowing therapy or whatever it takes.
John had stage III-IV with 7 weeks of radiation and chemo followed by a radical neck. The biopsy of the radical neck came back negative.
John has fairly good saliva, little taste and this persistant swallowing problem. His radiation and chemo ended Sept. 2002-surgery Oct 2002.

Meredith,

As I read your two emails it dawned on me that you were talking about things the therapist told you.

I don't know who it would be from specifically, maybe you ENT could refer you, but I would definitely get a secong opinion. From looking at the posts it sounds as if there may be other options.

Wish you luck.
Take care,
Dinah

Meredith,
I wrote about food getting stuck in my throat, but my tumor was also on my epiglotis and its function and size has been affected by the radiation as well. The only thing that I swallow are liquids, but I also have a problem with aspiration. I have to clear my throat as I go but seem to be able most of the times to keep the liquid out of my airway with the throat clearing. Occasionally it does get in there and I have to cough it out.

Best of luck...I look forward to hearing about your husband's progress.

Danny G.

Dinah and Danny,

Thanks for the response. We called our Oncologist ( who is the most interested member of our team) and she is sending us for a second opinion.
Danny are you doing therapy now? Please keep us up with your progress and we will let you know if anything seems to help.
I am only a caregiver--you guys and gals in the field have the courage and my respect.
Meredith

Oh Meredith,

My "hot button" - there is no such thing as ONLY a caregiver. I have said and will say again many times; I believe caregivers have a harder road than the patients.

Many people do go through this and other illnesses without a caregiver or support ...those are the really tough people. We who have support and caregivers have an extra edge in healing and doing our best to recover. That edge is:
Caregiver and the constant strength they exhibit. And the "stuff" you have to put up with..

I always wanted to be as strong as my caregiver (Mike) thought I was. And if I got too in the dumps I knew it would get to him. What a great way to support each other. I think we tried to stay strong for each other.

Hope you guys get the swallow issue resolved. Keep us posted.

Take care,
Dinah

Meredith,
No,I am not doing any therapy now. When I did my first barium swallow months ago they gave me a list of exercises and I do try and perfom some of them every day...but I am not as diligent as they suggest. I cannot really believe that sticking out my tongue, yawning, going from low pitch to high pitch sounds, etc. could really make that much difference. Up to now, my radiation oncologist, after scoping me, has told me that I am still not healed at the spot on the epiglotis where the tumor used to be...so I assume I need to do some more healing and allow the swelling to go down to achieve better swallowing.
I have been finished with radiation since labor day and I must admit, I am getting a little frustrated by my lack of progress. When I see both the doctor and do another swallow on Jan 30 I plan to discuss the situation in detail.
Thanks for the info. and support,
Danny G.