My husband is now about 5-1/2 months out from the end of radiation treatment. Mouth sores are gone, swelling in neck from MRND/radiation is gone (returns occasionally), dry mouth is not too bad these days. He is eating about any kind of moist foods and often without a lot of gravy, sauce, etc.

However, swallowing issues remain. He says that during end of radiation, he could drink liquids but he gulped. Then that improved so that he could drink continuously with no problem. However, with solids, he often feels like the food is getting stuck on its way down. It seems to get worse as he eats more of his meal - and he often gives up when he is near the end. Sometimes it doesn't happen, but it generally does, and gets worse with amount of eating he does in a session.

I'm assuming all kinds of things can cause this - lack of saliva, constriction of the esophagus, weak muscles?, the BOT surgery he had. Does this happen to most H&N patients? Does it go away on its own with time? He has never been offered a swallowing analysis - should he ask for one?

(It doesn't seem like the BOT surgery probably caused it because he had no problem with swallowing after he recovered from surgery and before radiation. It happened post radiation.)

Connie

Connie, Having just gone for my swallowing test, I am wishing I had gone much earlier.

It seems that radiation, for me, has had a direct effect on the muscles that got the worst of it--my jaw is tight, and I am using the therabite (and some jaw massage that the speech therapist showed me yesterday) to address that, and the muscles that control the throat around the epiglottis (which are right next to the BOT-which I know they radiated really thoruoghly in my case too) are apparently even tighter and that is why I'm having issues swallowing anything solid (and actually issues dirnking as well--though I have learned to compensate by double-swallowing when I sip somehting). For me too, the surgery doesn't explain it, I was eating almost whatever I wanted after surgery but before radiation.

The speech therapist seemed to think eventually, with exercises, I can stretch those muscles out and back to being normal enough to eat solid food but I wish I'd been doing those exercises a few months ago since my impression is the longer there is stiffening from rad, the harder it gets to use the muscle all the way again. I also know that my jaw didn't start getting as stiff as it is now until maybe two months post-rad, so it seems this sort of thing can sneak up on you after rad.

In short, I would say he should ask for a swallowing test as soon as possible.

Nelie

Nelie, thanks. After hearing this, he plans to call to schedule an appointment next week. Since his dr. at the CCC didn't talk to him about doing a swallowing test, he just thought it was something that would get better over time. However, many of the other issues that would affect eating have healed for him but the swallowing problem remains, so he is getting concerned.

I hope you start to see an improvement with the exercises you've been given. Did your doctor recommend this test to you - or did you ask on your own?

Connie

I also remember the changes radiation made. For me I just kept at it. I remember the same situations that you describe. I would just get frustrated & give up towards the end of a meal & feel exhausted. I have realized over time that I gulp now more than swallow & seem to belch more because of it! Oh well, whatever it takes. Swallow therapy may be in order, but for me I just keep trying. I have found that in general I eat more healthy foods; fresh fruits like melons, papaya goes down sooo smooth & no burning. Stuff like that, tomatoes too with almost everything. I don't even try to eat cold cereal at all anymore. You almost have to choose new favorite foods that you like & that are easy to swallow. Adapt & be happy. Erik

Connie,

I had been thinking about asking but had been hoping of I kept pushing myself to eat more I would just recover the ability to swallow right on my own. But I had a regular follow-up exam with my medical oncologist and when I mentioned how much trouble I was having, they decided they should refer me for a swallowing exam.

As I said, I am having more trouble than your husband--tight now, I'm completely incapable of getting anything solid down (even diced peaches) without it going down "the wrong way" or getting stuck on this little spot where my epiglottis tilts up--so maybe your husbadn will benefot less from the test. But it can't hurt to see what a speech pathologist would say.

Hi guys, If it helps I still have trouble swallowing my pills and some solid foods. I stick
to mainly soft foods and find that helps including
Icecream. That is after 15 years of being cancer
free.
Cathy

For what it's worth, I had some significant swallowing problems post-Tx, and continue to have difficulty with some things, but the swallowing study was very helpful in speeding up the improvements.
I believe I would have gotten there myself, if only out of stubborn refusal to give up, but the therapist gave me a series of exercises to perform several times a day that really helped to move things along.
I would strongly encourage you to get the study done.
It will allow you to get a good look at what physically is causing the problems, and either have the appropriate procedure performed to correct it, or get the physical therapy needed to help improve.

Good Health

Chuck

I am printing the above for John, who is 3 1/2 mo out from rad tx.and having some problems. Thanks for sharing.Amy

Hello Connie,

I have swallowing issues from the get go. I can drink smoothies without much of a problem. The malt texture seems to slide down easier than solids. I drink alot of water during my meals but it is frustating. I have to take small bites and chew like hell. It also takes me alot longer to eat than a normal person.
I think this is something I will have to live with for the rest of my life. I had the swallow test and it showed no blockage. The tumor that has returned is contributing to my problem. I'm considering having a PEG tube installed again.
My normal weight is 145 and I've been holding at 126 for the last four weeks.

All my Best,

Danny Boy

Hi Connie,

I am 10 and a hlf months removed from rad. 9 from surgery. I had my ENT appointment last week and the MD said the swelling had finally totally subsided. He doesnpt need to see me for 4 months now. I still have problems with things getting caught in th eback of my throat. I use water when I eat. I notice small improvements every week. It takes a while to get the saliva flowing again.

Steve