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

Hi All,

Just catching up. Thanks for the information. Its very helpful to see how different people are affected. He is going to ask for the swallowing study just to see what the cause of the problem is and whether there is anything else that can be done at this point.

Thanks everyone. Connie

my nameis alan Iam 6wks post rad, I had swallow test last week I can take small sips my muscles are weak ENT Fri, the and i I have therapy Tuesaday, Im just a rookie I have so many question. God Bless all of yall, and I hope your problems are resolved ALAN

Hi Alan, Welcome to the OCF.....Just wanted to encourage you to ask your questions, we are here to listen and help, if possible.....Carol

Thanks Carol, I have so many questions... How long will I have to go around with a box of kleenex, when will the mucocitis ease? I have a peg and have lost 70lbs(luckily, I"bulked up" as my wife says, prior to tx). I am very weak and really don't feel like participating in family activities. I missed my sons entire soccer season and now am missing basketball, when will I get some strength back and want to be part of the family again? I start speech/swollow therapy in 2 days because I aspirate when swollowing. I'm a little depressed, my wife wants me to see our family psychologist but I feel like I should be able to handle things myself. Thanks again for all of everyones input, kindness and caring. Alan

Hi Alan --

Six weeks' out is where my husband Barry is and he still has some mucositis, although it is getting better daily. He needs pain meds to eat, but these are also getting less necessary. He didn't lose as much weight as you did but he lost quite a bit and needs to get it back, which he won't be able to do until he can eat more food more easily. The swallowing evaulation (my husband had his last week) really helps get a handle on things; he aspirates some too and the therapist will design execerises for him to improve this.

However, what I wanted to say is that you are about where you might be expected to be at this point -- progress seems really slow and it gets discouraging but it will start to get better. For some this seems to happen very quickly, for others, a longer drag -- but persevere. Try to exercise some very day -- lots of studies find this helps reduce fatigue from cancer treatment -- even if at first it's only a short walk.

Best wishes, stick to it!
Gail

Hi,
Alen- You know about"good news-bad news" messages, right The good news is that you will get stronger and better everyday if you give yourself permission to rest and recuperate. The bad news is that it will probably take longer than you think it should. John fights fatique everyday and his mouth is still reacting to the radiation. But, he's feeling 75% better than he was a month ago-that's good news. Hug your kid[kids?],tell him how much you love him and that you have to rest to get well so you can cheer at his games again. Amy P.S. A good psychologist can be a real morale booster.

Hi Alan --

We went to see Barry's ENT surgeon yesterday -- she had HNC over 15 years ago and had radiation treatment, so knows where it's at! She did an endoscopic exam and positioned the monitor so Barry could see what his epiglottis (the flap that closes off your trachea from your pharynx when you swallow) was doing when he spoke, coughed, and swallowed. Right now it doesn't look as much inflamed as somewhat unresponsive to little bits of saliva starting to work their way down past it into his larynx -- at that point his voice would get a bit gravelly or bubbly -- she taught him the little "cough" needed to clear the saliva out and prevent it from being aspirated. (Nelie--I'll bet it's the same "cough" that your therapist showed you). He tried it several times and could see that the saliva was expelled back into the pharynx; very interesting!

What this showed us was that he has a ways to go before it all starts working "naturally" again. Our ENT emphasized that it would -- that he had to be patient and most importantly, practice swallowing and be aware of what was happening in the back of his mouth -- do the "cough" when he felt that he might be aspirating stuff. Be careful eating.

She also said, from personal experience so it meant a lot -- it can take a while for all this to heal, but it will --

Gail

Interesting Gail--I'm glad that the news was all good (probably is the same cough). I see my ENT in a few hours from now for a follow-up where I think he's going to either schedule me for or DO a FEEST swallowing test (I'm not exactly sure what it involves or if he has all the equipment in his office needed to do it). I'm hoping there's no surprising bad news and a little anxious over that, as I guess I will be for the next few years every time I see him.

Wish me luck.
Nelie

Gail thank you for posting about this frequently unnoticed dysphagia problem. I was 5 years out when I had an esophogram barium swallow study as a precursor to a hiatal hernia surgery. The study showed that with very thin viscous liquids I was aspirating some of it into my left lung with out even knowing it. As it turned out this condition, while not bad enough to be a risk for choking during swallowing, has given me chronic aspiration pneumonia, for which I have been on antibiotics several times. I am working with a GI doctor to write a section for the web site on it right now, but following Barry's issues with it allows us all to be aware of something that is so subtle that many may not know that they have this post treatment issue. Much of the problem is due to physical shape changes in the oral cavity (in the oropharynx), reduction in size of the epiglottis from radiation treatments, and reduced propreoception or a sense of feeling in the back of the throat also from radiation treatments.

Brian, that answers one question I've been wondering about--when I had my barium swallow, the Speech Pathologist said my epiglottis looked "stubby" and I wondered if radiation wearing away at it could have caused that. I looked at the video of me swallowing and I could see what he meant. Quite honestly, the epiglottis looks way too short to ever cover the trachea completely, even if it had been moving all the way down like it should have been when I swallowed. I guess there's nothing that can be done if that has happened? That's kind of disturbing to me right now since I want to beleive I can getr back to normal here.

I am in the process myself of determining what the options are including grafting. Mine is so small I can't believe that it is closing anything at all, but it is to a large extent. Will keep everyone here posted with what I find, and am sure we will hear more from Gail as well, as Barry sorts through the same issues.