Inability to swallow and never ending foamy saliva

It took me about 3-4 weeks after tor surgery to really be able to eat real food. I used the peg tube until then. Then started chemo and radiation at 5 weeks post surgery.

I was diagnosed with HPV16+ OSCC in March 2023. I had TORS robotic surgery April 2023. I had a right neck dissection with all lymph nodes removed and TORS surgery to remove primary tumor of 3cm at base of tongue. . All margins clear. I completed 30 rounds of Proton Radiation. The biggest issue I had was dysphagia and Not being about to swallow (eat or drink) for about two weeks after surgery. I understand He is doing mouth, tongue and swallowing exercises? If you have a Speech therapist they can help you with this? I think the chin into my chest and HARD swallow helped me initially get a few things down and then It got easier to swallow. I had alot of mucous/saliva where you feel like you are almost drowning and It was hard to eat and drink for a month or so. Then Started with soft foods and Boost drinks. Soup, eggs, bananas, etc. You actually "forget" how to swallow once you go awhile without doing it. He will need to force himself and work hard at it . Good luck!

Thank you for your comments. His surgery was Jan 25 so it's gone way longer than that. He also has non stop mucous and foamy saliva he can't swallow. This leads to almost non stop coughing episodes. We are thinking about seeking out a regular ENT to help us sort it out as our surgical oncologist seems to have no suggestions. It's at the point where he is so depressed and overwhelmed he doesn't know who to ask or where to turn for help. I have not found anyone who had this problem for this long.

<p>Need something to cut film of foamy mucous in throat.</p><p>My husband had TORS surgery for throat cancer on January 25. He still has a PEG tube but is trying to re-learn how to swallow. Big problem is constant film of foamy mucous that causes terrible lengthy coughing fits. It just doesn't go away. He is miserable from the pain of coughing...his throat, ribs, etc.</p>

Unfortunately we are not seeing any solutions for you here. When recovering in hospital after surgery where a trach has been introduced, a lot of moisture is presented to help cut down on the thick mucus in the throat. The thick mucus as I understand it is the body’s way of fighting off infections while one heals.
I would think however that your general practitioner would have a solution as well. That or an ENT. No one should be subject to coughing for days as your husband has.

Thank you for your response. His surgery involved taking out both tonsils as well as throat tissue and some from base of tongue plus right lymph nodes. So i understand that there will be mucous to ward off infection. But its been 2 months and this cough is what is so debilitating.
Maybe worse than not being able to swallow since it interferes with his swallowing exercises.
And no one on his medical team seems to have an answer. His ENT isn't even responding so tomorrow we will get a message to his PCP about seeing him as well as a new ENT. His surgeon is a Head and Throat cancer surgeon but has offered little in the way of answers and practices mostly out of a city 3 hours away. He's in our town once or twice a month.
It was our choice to go with him but inbhindsight might have done things differently.
But like so many, we we overwhelmed and felt time was critical. We need someone local. May also email nurse navigator to enlist her help. Sad that patients have to resort to researching answers to problems someone in the medical profession should know.

Hello @phyllisg I hope you are able to find another doctor with some helpful suggestions. There is a nationwide support group for head and neck cancer patients called SPOHNC that you will find online. They have some cookbooks and literature and I am looking at their book of products and suggestions. I will list some of these in case you haven't tried it. A cool mist humidifier right beside bed or chair to increase moisture in the air. Gargle or rinse mouth with warm water with a little salt several times a day. Naturade Herbal EXPEC with guaifenesin helps relieve mucus buildup and clear excess mucus. Papaya or fresh pineapple juice mixed with seltzer to thin saliva. Don't use that with open mouth sores. Xylimelt tablets to stick to your gum.....I live on these every night to prevent dry mouth. Smartmouth Dry mouth rehydrating Oral Rinse. SalivaMAX prescription only. Salagen, Salivea,Oasis,Moisyn....these are all oral moisturising products. I haven't had experience with any of these except the Biotene products and Xylimelts. I am not sure if he would benefit from a saliva substitute or just moisturizing his mouth,as that would help to reduce the dryness which may reduce saliva production in response to dryness. I would keep looking until you find the doctor with an answer for you. Can you utilize your nurse navigator? I have found them to be so very helpful.

Thank you!! I have tried some of these but will look into others. Will also check that network. I have not tried nurse navigator but thank you for the reminder! She has been helpful in the past!

Hello,
So yes that’s common and I too suffered from both issues and yet still at over 7 years out from stage IV treatments the mucus is still a problem.

I was prescribed medication to produce saliva but it didn’t work for me. Also the following was recommended but none of them worked for me; mucinex, biotene, xylitol (xylimelt), nonalcohol mouthwash. Though they failed for me they may work for your husband.

I found that first thing in the morning and several times throughout the day I run hot water, as hot as I can stand. I swish and spit several times. Once my mouth is clear I take small sips and hack it up and out.
Sometimes this takes several rounds but it works!

I then brush my teeth and then brush again with prescription fluoride toothpaste and leave it dry for 1/2 hour ish.

The cough; I was coughing like a fool and then one of my nurses said, let me get you a prescription for Teslon Pearl…what a relief!!!

It took me nearly a year to eat oatmeal so be patient but at least try to keep drinking fluids…I was unable due to choking!

Hope this helps

MOJO

Thank you so much. Never heard of that med for coughing but will definitely ask about it! Hopefully it is something that could be put through the tube. The dr thinks it may be reflux causing the cough, but he's never had reflux. Course, he never had cancer before either. My husband can't swallow enough to drink yet, even after 2 months, but he continues with the excercises. He could feed himself via the tube but with the constant hacking cough, it takes 3 hands so someone can pinch the tube to prevent the gastric geyser from the syringe!
Your comments at least give me some hope that at some point he will be able to swallow and eat again! Thank you and take care of yourself!