Are there ways to help me swallow better?

Posted by mark1961 @mark1961, May 3, 2023

Hi I'm here to try and get some kind of help with my eating, since i don't make saliva it hurts for me to eat much. How do you all do this? Everything I eat makes my mouth dry and food to. I Have To take a sip of water then chew and swallow with a drink of liquid ori can't swallow. Any help will be so appreciated

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

Speech and swallow folks in an oncology context maybe, but my suggestion was before reading the diagnosis.

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Hi Mark. Out of frustration I made a list of foods I could tolerate including liquid foods such as milkshakes, Ensure, cooked and buttered vegetables, noodles, etc. Eggs were easy. Rice with milk and cinnamon was another.
It takes a while to find what works and even longer to understand what you can eat while traveling but eventually you can developer quite a list. I even discovered new foods such as frozen dinners.
I regained about 1/3 of my saliva after perhaps six months to a year, more years later but never back to normal. I tell people to eat a whole pie if you like. Our days of eating right no longer exist until you can figure things out.
The dry mouth stuck closed in the middle of the night and waking up choking in need of water, I can’t say is rare or fun but by the time you get used to it, it gets better. Are you finding it hard to sleep?

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@hrhwilliam

Hi Mark. Out of frustration I made a list of foods I could tolerate including liquid foods such as milkshakes, Ensure, cooked and buttered vegetables, noodles, etc. Eggs were easy. Rice with milk and cinnamon was another.
It takes a while to find what works and even longer to understand what you can eat while traveling but eventually you can developer quite a list. I even discovered new foods such as frozen dinners.
I regained about 1/3 of my saliva after perhaps six months to a year, more years later but never back to normal. I tell people to eat a whole pie if you like. Our days of eating right no longer exist until you can figure things out.
The dry mouth stuck closed in the middle of the night and waking up choking in need of water, I can’t say is rare or fun but by the time you get used to it, it gets better. Are you finding it hard to sleep?

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Thank you so much for the information it will help. I sleep ok just wake in the morning with very dry mouth

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Mark, Is swallowing getting a little better? A lot of butter on the bread helps but bread, rice, dry meats are all problems for us. Hopefully you are getting better at eating.

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There is meditation that can help with saliva production. You didn’t mention what Dx and treatment you had.

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Hi Mark
It’s been three years now and I still have issues. My wife actually ate my food in the hospital after the 5th day just so I could get my “get out of jail card” Bread is still hard & as you well know you need to have water to wash almost everything down. I tried all the things the Dr & the speech therapist recommended without much luck just trial and error. I’ve needed to deal with it twice.
HPV stage 4 left me without both tonsils, back of tongue & a 4 cm tumor in the back of my throat removed. I had to learn how to swallow, dry mouth, lymphedema and everything else under the sun.
1st year pet scan good. 2nd year pet scan showed that my friend’s back! This time it was 6 weeks of chemo, radiation and the lack of food again.
You learn what you can and can’t eat, what fills you up and what causes you to cough for hours. Oysters & sashimi have worked well for me, with lots of mayo and lettuce I can get a sandwich down but plain old bread & butter no way, not unless it’s toasted full of butter add honey and you don’t mind coughing on the crumbs oh & don’t forget the water.
Looks like I might be onto round 3 with a biopsy in the next few weeks based on my most recent pet scan.
I believe in my Dr and USC I just think it’s bad luck. So good luck with the bread! If I can help with any other questions you may have I unfortunately have plenty of 1st hand experience & would be glad to answer any questions you may have.

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Hi Mark, I don't have your problem, but my sister-in-law does, and it has been 4 years for her, gradually getting a bit better with the dry mouth after Rad and chemo.

Her diet was breakfast eggs, mostly scrambled with added milk. Softened cereal if needed with milk, no toast.
Other foods for lunch were Homemade vegetable soups, Lots of stews with plenty of vegetables plenty of stock in the stew. You get the idea, what you have to look out for is your swallow mechanism, which may atrophy, stiffen if you don't keep swallowing. It may be hard, but you have gone through the worst by now anyway and I am sure you can get through this.
Find the things you like to eat and can tolerate, it makes the whole thing a bit more pleasant.
Good Luck with it.

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@mojo244

Hey Mark,
I’m 6.5 years out from treatments.
As for saliva, I have none and appears that I never will.
I have tried prescription, mouth rinse, 3M spray, Xylitol and none help and also creates a gummy like substance to my mouth.
I drink water all day long and carry a water with me while outside.
I have a hard time carrying on conversations due to the extreme dryness.
I brush my teeth several times per day and also apply prescription fluoride toothpaste at least 3 times per day.
Eating bread was completely out of my diet up until about a year ago.
Bread is still extremely difficult but small bites can be washed down with liquid.
But actually, I wish I would have left bread right out of my diet because we don’t need it and it seems to make my joints ache.
I was only able to eat oatmeal for the first year but I survived.
As far as speech therapy, I found it to be a waste of time and money!
Just remember that everyone responds differently and you may start eating soon!
Best wishes

MOJO

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I am seeing a speech therapist to help with my speaking and eating. She is so concerned at me that she found a prosthesis dentist that will
Make a Palatal Augmentation Prothesis for me to help increase swallow efficiency. I haven’t gone yet but it’s worth trying. I’m on a feeding tube almost 2 years. Oral cancer

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@covidstinks2023

God bless you! Just a thought, ok? Have you been treated for dry mouth? A lot of medication can cause this. Also, have you seen a gastroenterologist to see if your esophagus needs dilaton? It's a simple procedure and it helps tremendously if food will not go down. I had it done and it did wonders for me. If I'm off base with your problem, I apologize.

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My Uncle Greg has been battling throat cancer for 8 yrs. He has recently been in the hospital he couldn't swallow, so sore all the way from left side of throat, ear. He is currently in the hospital. They found out he has a ulcer in his throat, causing all the pain and not being able to swallow. They started oxygen chamber treatments, he started having a hard time breathing. So he has opted out of the oxygen treatment. They ended up having to do a tracheatomy to help him be able to breath. Any suggestions on what could help him would be greatly appreciated 🙏 Thankyou all so much.
The Pendletons

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@pendletons1

My Uncle Greg has been battling throat cancer for 8 yrs. He has recently been in the hospital he couldn't swallow, so sore all the way from left side of throat, ear. He is currently in the hospital. They found out he has a ulcer in his throat, causing all the pain and not being able to swallow. They started oxygen chamber treatments, he started having a hard time breathing. So he has opted out of the oxygen treatment. They ended up having to do a tracheatomy to help him be able to breath. Any suggestions on what could help him would be greatly appreciated 🙏 Thankyou all so much.
The Pendletons

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I am so sorry. I can't imagine how painful this must be. I don't have any suggestions, but, I sure do have a lot of prayers right now for Your Uncle Greg & the Pendletons. Hugs & Prayers.....

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