My husband has had a complete stricture for 2.5 years. After being told that there was no hope for him to ever swallow (including MD Anderson) I found a doctor here in Tampa that does a procedure called Lumen Restoration. The Dr. has performed this procedure on my husband and after the 2nd attempt he was successful. That was in April. My husband is now eating everything, albeit chewed up very well and with many sips of water, but he is swallowing. His cancer was stageIV SCC base of tongue w/mets to lymphs. He did not have any surgery, just aggresive chemo & radiation. Part of the reason he developed the stricture was being told "not to swallow if it hurts too much. Just use suction and the feeding tube and the swallowing will get better." Please please, please, know Dan would probably not have developed a complete stricture had he kept swallowing. After learning all of this, Dan's oncologist stresses to all of his H&N patients to swallow something, anything during their course of treatment. Hope this helps someone.

My husband's ENT had a head/neck cancer herself as a young woman and had aggressive radiation treatment at Hopkins. That was about 15 or more years ago, she is fine now though has some trismus and had to have some jaw reconstruction as the radiation of the day was not very precise.

They did not have PEGs in those days so it was "swallow or die" -- she gargled liquid lidocaine and swallowed, albeit with tears (she says).

When she diagnosed Barry's cancer, she was extremely insistent that -- no matter what the other doctors might say -- he MUST swallow throughout as she was currently monitoring patents treated elsewhere who could not (in her words) "swallow their own spit" two years out. These words hit home, Barry figured if this woman could get through this as a college student, he could as well. Of course he had the benefit of better pain meds and he did get a PEG as a safety precaution (though he ended up not using it).

The folks at Hopkins sent him for a swallowing evaluation 6 weeks after end of treatment and it did reveal problems, despite his swallowing all the way through. They gave him exercises to do to strengthen his lingual muscles etc. and he did them religiously, in fact still does them a few times a week to avoid fibrosis.

I was interested that the doctors and nurses at Hopkins are insistent that the patient continue to swallow and will get on their case (as nicely as possible, of course) if they do not. The speech/swallowing therapist said that they were getting lots of strictures before they started being more proactive on this issue.

Gail

Gail,

What type of exercises did they give gime to strengthen his muscles?

I can readily identify with Gail's description of the doctor who was treated over 15 years ago. As another veteran of that era, I can attest that radiation was indeed a "swallow or die" situation, with pain medications that did little to alleviate the problem. There were many times that my husband got to hear me scream at the top of my lungs as I tried to get soft food and/or liquids down, because I knew I had nutrition goals that were being monitored pretty closely by my oncology team.

While it was terribly painful for a good many weeks, the upside was that I was able to work my way back to normal eating within a few months, and have had minimal swallowing issues ever since. Before long, I was back to the opposite problem -- controlling my intake to avoid putting on too much weight!

Cathy

Yeah for Hopkins!!!! Yeah for your ENT!!! You have no idea how lucky Gail Mac's husband and Cathy G. you are! I am glad that there are advocates out telling our loved ones THEY HAVE TO SWALLOW! Dan does his mouth opening exercises frequently and doesn't do his swallowing exercises as much as he should although he is eating everything and the doc said that was good exercise too.
We too got on our oncology and ENT group and they are making sure they tell their patients to swallow. I know this for sure because I work in the recovery room and have been told by the family members that they were told about my husband and they are making sure to have their family member swallow.

Tim,
I too had swallowing studies done at the start of treatment, and about six weeks after.
The exercises for each person were based on a detailed analysis of thier swallowing function.
My test involved a barium swallow study with several liquids of different thicknesses, and finally a cookie (a lorna doon) coated with barium solution the thickness of pudding, all recorded at high speed and analyzed by the speech and swallowing therapist. The exercises not only helped with swalllowing function. Some were meant to help prevent aspiration of liquids into the lungs, which is a fairly common problem which can lead to aspiration pnuemonia.
As with Gail's husband Barry, I was encouraged throughout treatment to swallow. I am convinced that I would have recovered to where I am now without the intervention of the speech and swallowing therapy, but it would have taken considerably longer than it did. It was an extremely valuable part of the program at the University of Chicago.
I would strongly encourage those in treatment to continue swallowing something every day, and to ask about a swallowing study after some recovery time.

Good Health,

Chuck

Gail, I too was one that could not swallow my own spit and needed liquid morhine by tube to control the pain. I forget how long I had my peg in but over time I forget what I went thru. Now looking back I had a hickman line in my chest which is 3 ports (plastic tubing about 1 foot each dangling from my chest) a peg tube dangling one foot from my stomach and a port a cath up near my shoulder to treat my cancers.Swallowing and jaw pain did not seem important at the time. I honestly do not think I would have survived without a feeding tube. But I understand what jennifer is trying to convey. Maybe I would have done better with some swallowing therapies, although if my memory serves me correctly I don"t think I could have swallowed so close after treatment.
Ladies to review the bidding Yes that is 4 things one ft. long dangling from body not 5--- you have me confused with my good friend Tim Stoj who is Happily married.

This is my first time to survivor/patient forums. I have recently started radiation therapy for a second occurance of squamous cell carcinoma on my tongue and the lining of my teeth. My first occurance was 4 1/2 years ago. I had a third of my tongue removed with the tumor and neck dissection. The cancer had not gone into the lymph nodes so I did not have any further treatment. Now they have determined radiation. I had two surgeries this summer for dysplasia but cancer appeared in a biopsy in Nov. After having two teeth removed I started the radiation. I have finished day 7 of a 39 treatment schedule and I already have loss of taste, mouth sores, thick muscositis and tiredness. I have slept most of this day. Any suggestions for the mouth sores. My Dr. has me doing mouth rinses 4 times a day of 50 oz. of warm water, 1/2 tsp of salt and soda. Can't seem to do all 50 oz. I am lucky to do half that. Will this get worse during the treatment? I am really scared. Much more so than the first time when I believed that they "got it all." I found new doctors after this summer and like this new team. Dr. keeps telling me that they found it early, Stage 1 and contained but the treatment seems just as aggressive as if in later stages. Eating is also an issue. It all seems so bleak.

Hi BB,

I see this is your first post. Welcome !! Some how you ended up on someones post.

If you go down to introduce your self. You will get a better response to your situation.

Yes, Baking Soda & Salt will be your best friend for a few months. I did mouth routine 3 X a day.

There are many here that can help you or give you a few ideas. So once again Welcome

Take Care,
Diane