1. < Head & Neck Cancer

Difficulty swallowing liquids

Posted by steve55 @steve55, Nov 22, 2024

I’m 69 and about 22 years out from throat cancer. I was treated with three rounds of chemo and 6 weeks radiation. My swallowing issues have developed in the last 4-5 years, fortunately prior to that I had little problems.
I have not seen many posts on swallowing liquid which I find difficult. I also have problems swallowing food which there are many post on . Most of my liquids are swallowed when eating, at that time water goes down easier.
Does anyone deal with similar issues?

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steve55 | @steve55 | Nov 27, 2024
In reply to @josk "Hi Steve ... even in my case - going back to 14-15 yrs - there was..." + (show)
@josk

Hi Steve ... even in my case - going back to 14-15 yrs - there was not much emphasis placed on how important and/or critical it is to do exercises to the mouth and jaw. Since I was able to eat, swallow, drink, and talk (except for hearing) just like prior to treatment - I did not place much emphasis and importance on the exercises (and I was not aware at all of the late effects of radiation on HNC survivors).
Agree - a lot of advancements in medicine now, but believe there is nothing yet to stop or delay the late effects of radiation - except EXERCISES !
A promise to myself - like you - I exercise daily - about 10 - 15 mins. This is to avoid and/or keep at bay having a feeding tube inserted in me for intake of nutrition (per my oncologist in PMCC - he has patients who needs a feeding tube inserted due to swallowing issues).
For info - I live on my own, and am usually on my own when driving - thus I try to stretch my jaw and open wide my mouth -- when and if I remember !!
Take care !!

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To Josh and everyone else who weighed in, thanks for the input and suggestions. My first time posting a question but not my last. This is a great support group. Happy Thanksgiving to all even though it’s a holiday mostly about eating.

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rosie100 | @rosie100 | Nov 29, 2024
In reply to @josk "I am 71, and 18 years out of nasopharyngeal carcinoma IV. Was ok after radiation and..." + (show)
@josk

I am 71, and 18 years out of nasopharyngeal carcinoma IV. Was ok after radiation and chemo treatment. Four years ago - mid 2020 - I started having difficulties in speech and in swallowing as well. Diagnosed with dysphagia (swallowing issue) and dysarthria (speech issue) - told that these issues are the late effects of radiation - especially to survivors of head and neck cancer.
Yes - I require liquid with my food, and food have to be in small bite sizes - soft and 'mushy', also liquid or water is hard to go down - had to tilt my head a little for the liquid to go down well so that it does not come out through my nose. Drooling also comes into place, and numbness in the lower mouth/jaw area.
Am learning to adapt to this change in lifestyle (with these invisible disabilities, it restricts me mingling and socialising with families and friends and in public places).
After 4 years - am still learning and adapting to be 'ok' in living with these disabilities!
It's tough!

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I think I will be having these issues also. Still having infusion therapy every couple weeks. Will have pet CT scan in couple weeks. Cancer on tongue was almost gone the last one. Still on feeding tube. I guess I want to be all better too fast and have to be more patient. It seems like so much work and I get very frustrated. I have lived with my son who still has a son living at home and s daughter a junior in college. I will be 76 Dec 15th, lucky to still be alive and thanks to my oncologist and team. I need some advice just starting this healing process. I see this recovering brakes time and patience! Prayers appreciated.

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1 reply
sandy8043 | @sandy8043 | Nov 29, 2024
In reply to @mikecarroll1937 "Hi y’all, Holy Moly, I’m only 6 months post 35 radiation treatments and 6 chemotherapy. Doing..." + (show)
@mikecarroll1937

Hi y’all, Holy Moly, I’m only 6 months post 35 radiation treatments and 6 chemotherapy. Doing so well I stopped my exercises. Since reading all of your posts I’m going to make the swallowing and jaw exercises a part of my daily routine again in case late side affects occur. Thanks for sharing.

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Ditto. I'm 10months post radiation and chemo for tongue cancer. Had a recent swallow study and was told I'm doing good. I am restarting today. I did not even think about the years ahead. I thought I was recovered and that's that. Back to the exercises.

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steve55 | @steve55 | Nov 30, 2024
In reply to @rosie100 "I think I will be having these issues also. Still having infusion therapy every couple weeks...." + (show)
@rosie100

I think I will be having these issues also. Still having infusion therapy every couple weeks. Will have pet CT scan in couple weeks. Cancer on tongue was almost gone the last one. Still on feeding tube. I guess I want to be all better too fast and have to be more patient. It seems like so much work and I get very frustrated. I have lived with my son who still has a son living at home and s daughter a junior in college. I will be 76 Dec 15th, lucky to still be alive and thanks to my oncologist and team. I need some advice just starting this healing process. I see this recovering brakes time and patience! Prayers appreciated.

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Rosie
The treatments take time and the healing will take time as well. You need to accept that reality. Your body is going through a lot and it will take time to heal. As you recover try not to compare on a day to day basis, instead try comparing it month by month. This way you will notice change and hopefully reduce the frustration on a daily basis.
For me it took about 6-8 months to feel almost normal again, It all varies though.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 5, 2024
In reply to @cmickelson15 "Yes thin liquids are more challenging for me than the foods I eat. I also find..." + (show)
@cmickelson15

Yes thin liquids are more challenging for me than the foods I eat. I also find thin liquids easier to consume with food. You can find swallowing exercises online. My trick to sticking with the exercises is that I always do a set when watching a sporting event on TV. It’s become a habit that way. You can tie it to any other consistent thing you do such as commuting daily on a bus, watching your first tv show of the night, etc. most exercises can be paired with eating or drinking something as well.

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@cmickelson15, such wise advice to attach a new behavior to an existing habit, like doing swallowing exercise while watching a sporting event on TV. Also gives you a medically sound reason to watch sports on TV, right. 😉 (Just kidding.) It really is a good way to create a new habit and to remember to do it.

May I ask what type of cancer you had? Did you also have to manage mucus?

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cmickelson15 | @cmickelson15 | Dec 14, 2024

I have (had? I don't know when I can actually say "had") HPV type 33 tonsil cancer. T1N0. I had a lot of mucus for about three weeks post-surgery but not after that. I also had a feeding tube and, due to bleed complications, a tracheotomy during that time frame. So the mucus was rough. I didn't do anything proactive to manage it; I just waited it out. And, honestly, I avoided emotional conversations because I didn't want to cry and create more mucus.

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