<p>Very interested in hearing from anyone whose spouse is a head and neck cancer survivor. H was diagnosed with Stage IV squamous cell carcinoma in '96; had surgery and radiation; now is “in the clear” but choking on food is a constant issue (radiation level destroyed all salivary function which is necessary to digest and swallow food). It isn’t that frequent, but the kids (now 18 and 15) knew from an early age to call 911 if Dad couldn’t speak/breathe (I work full time/breadwinner). </p>
<p>I make dinner every night (on the idea that family dinners are good) but H eats apart because if anyone asks him a question, he will choke on response while eating. I try to make healthy dinners (low fat) but H needs sauce/moisture to limit the choking.</p>
<p>So here’s my question (and thanks in advance for support and sympathy – CC people are a good group with all too many people touched by cancer) – is anyone a physician or head and neck cancer survivor who can tell me if this is just part of our new normal? I know H can see his oncologist, but right now, our night will be filled with fear – “is it back? Is this it?” Every sore throat, he turns to me at 2 am and says “make sure (D) has a nice wedding.” </p>
<p>Also – any tips on limiting the choking? I thought a citrus salsa would be a good side dish (low fat, high in Vit C) but then he said the acidity made everything worse. What’s a low fat moisture rich sauce he can have on the side to make eating easier? Can he ever join in the family discussion without choking?</p>
<p>When he was originally diagnosed, I got all these pamphets about support groups for spouses at Sloan Kettering. I couldn’t make the meetings (after work – kids were 4 and 9 mos) but I’d also be interested in hearing from other spouses if they found comfort and strength from those kind of groups.</p>
<p>Not a head and neck expert by any stretch but a physician here.</p>
<p>Suggest you have him evaluated by a speech therapist. They can assess his oropharyngeal function and help him minimize choking risks and help you help him.</p>
<p>Support groups are always good. Can’t recommend them enough. Not only can you find all kinds of stuff that worked for other people but its so comforting to know that you are not alone.</p>
<p>I work with hospitalized patients, and would say you need a good session or two, and evaluation, with a speech therapist specializing in swallowing issues. Typically chin tuck with swallowing helps the area enlarge and facilitates safe swallowing. But his anatomy obviously was changed by the surgery, and you need more individualized recommendations. </p>
<p>This has been your norm for 14 or so years? While working full time? I’m impressed. You’ve got physical issues, psychological issues, one playing off the other. Support groups ideally could help you sort out some of this as well as help you feel less alone with these details. All groups are different, and it depends on the members and dynamic in your particular area.</p>
<p>I’m sorry to read your post. I don’t know how my experience difffers because you are dealing with cancer issues, but my mom has had issues with her swallowing for many years. Last week, she was in the hospital for aspiration pneumonia. She has an i-a-tal hernia (spelling?) and takes reflex. Since she’s quite elderly, the food often gets caught in the layers of her throat, or her ensophagus fills up with gas.</p>
<p>Two years ago, she had a “peg”, which provided liquid nourishment through a tube directly into her stomach.
She’s a real foodie, and eventually it came out. She now starts every lunch or dinner with a soup, and sticks to very soft food dinners, like mashed potatoes, creamed spinach, applesauce, etc. For breakfast, she starts with Ensure.</p>
<p>To us, her burps and reflex issues are more disturbing than the fact that she requires a separate menu. She too can’t talk when eating, and there has been plenty of times when this is a problem. She loves to sit around and talk. One way we help her, especially helpful when she needs more saliva, is to have gum nearby. Other times, a bowl of ice cream does the trick to get the foods down.</p>
<p>ETA: yes, I also suggest your DH have a swallowing eval. They’ll explain thick and thin liquids and how he should tuck his chin when he swallows. etc. Very helpful, and a nearby hospital can recommend someone. For further insights, you can have a barium screening done. They’ll take x-rays of his swallowing to determine where problems lie.</p>
<p>So sorry for these issues you have to deal with. The “make sure D has nice wedding” comment is so touching.</p>
<p>I have an idea for a moist sauce on the side for him. I have been using a wonderful Greek yogurt in my cooking as a sauce. It’s Greek Gods honey yogurt, that is the regular, more fattening kind, and there is also a low-fat honey-orange flavor. I just stir in into lots of things and it makes the best creamy sauce. You don’t taste the honey. I put in main dishes, soups, over fish (add some pesto and capers). It seems to be good on everything I’ve tried it on! It’s made in the Seattle area but my D can get it in Iowa too.</p>
<p>classof2015: my mom loves to eat salads. That’s her lunch most days. I think she enjoys the chewing. She’ll add cottage cheese, tomatoes, and use tons of salad dressing. Actually, she likes to add olive oil Plus a creamy salad dressing, like bleu cheese or ranch. She finds things like vinegar hurts her throat, so I’d imagine citrus salsa would really burn. She is more sensitive about spices too, and i know to stay away from acidic spices in particular. You mentioned you’re trying lots of lowfat meals. I have found that fats are much less problem, and more satifying. I don’t worry, since she needs to eat less overall.</p>
<p>Class of 2015 – My FIL had Parkinson’s, and had major swallowing/choking issues associated with that. Our hospital’s rehab unit had a swallowing specialist (who I think was an Occupational Therapist) who worked with him over the course of four or five sessions. We had to get some thickeners for some liquids – strangely enough (to me) that was easier for him than thinner liquids. </p>
<p>One other thought: When my dad had swallowing issues after a neck cancer, he was prescribed an anti-anxiety drug that really helped him a lot – he seemed to not worry so much that he might choke, and the actual number of episodes of choking also decreased. Just a thought…</p>
<p>You might check to see if there is a yahoo group for this, hearing everyone’s anecdotes over a long time period really helped our family both with efficiently asking the doctor questions and with all sorts of ideas to modify daily activities to minimize certain health complications</p>
<p>See an ear, nose and throat specialist. At the very least, you husband needs a cine-esophagram, an x-ray video study showing how he swallows liquids and solids. Choking can indicate aspiration, food or liquid going into the lungs. Aspiration can cause pneumonia.</p>
<p>Once a diagnosis is made, interventions can be planned.</p>
<p>Thank you all SO much – this is exactly what I was hoping for – real, specific ideas, from physicians and people who’ve gone through this. I never thought of having his swallowing patterns evaluated – that is such a good idea. And the yogurt sauce sounds perfect – not too tart or creamy. And I will check into some local support groups. I always think H is the one who needs the care, but as great lakes mom noticed, my stress has been through the roof for almost all this time, so maybe I can pick up some tips on how to deal with that too. I really really appreciate all your comments and the time you all took to respond.</p>
<p>I am not directing this toward the OP’s husband, but I did want to add that I know a situation where a man had Parkinson’s, as arabrab’s FIL. He was having trouble swallowing and he dismissed the symptoms as part of his Parkinson’s disease. The situation kept getting worse and he stopped eating solid foods. It was at that point that he finally made an appointment with his neurologist. He never made it to that appointment because he stopped drinking liquids. At that point his wife brought him to the ER. It turned out that he had esophogeal cancer.</p>
<p>Right – and with head and neck pt’s, the cancer often goes there, or lungs (where has 2 spots from a recent CT scan that we’re monitoring). Just something to keep an eye on.</p>