Difficulty swallowing liquids

I will be 2 years post treatment in April 2025 from head and neck cancer. It’s very encouraging to see posts from so many long term survivors. My care team did mention long term effects and hearing these stories makes me want to restart the swallowing exercises even though I only have a little trouble now. Besides the swallowing I was told that carotid stenosis could be a long term problem as well. Im planning on being alive long enough to have to deal with these issues.

Mavis,
I lived on Kate Farms standard 1.4 formula for five months through my feeding tube. Maintained weight and nutritional needs and never any digestive issues. Now that the tube has been removed I supplement what little food I can eat with the Kate Farms nutrition shake which so far has provided the same great results. pics attached

I strongly recommend sticking with the exercises. When you’re doing well they are difficult to commit to. Keep in mind you are exercising for the future. My problems did not begin to develop until 15 years after my treatment.

I also have used Kate Farms and have avoided a feeding tube. I am lactose intolerant so need plant based nutritional drink, and supplement it with orgain which is not quite as nutritional but gives options. Sometimes I mix them, adding various elements to smoothies, such as maple syrup, flaxseed etc. I use an ice cream machine which cools my mouth as well. 2 years out from radiation and have swollen burning lips and haven't read about anyone having that issue.

Hi Steve .. my swallowing and speech (dysphagia and dysarthria) & also with severe neck fibrosis did not or was not evident until 15 years ago. And, because after the treatment and recovered - I had no issues with swallowing (except that I had to have liquid to help in taking the food down), and or speech.
Now - I wish I had done my dysphagia exercises back when I had finished treatment. Now I can only do my best with daily exercises - and hope to prevent late effects from getting worse!

I go back over 20 years when treated and at that point nobody spoke about swallowing exercises. That said, there are a lot of advancements in medicine since then. I’m curious, do you do your exercises once a day or more? I do once a day and considering adding to that.

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 !!

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.

Similar to mikecarroll I'm five months post treatment 35 radialtion and 6 chemo and stopped doing the exercises but thanks to all these posts I will resume and try and commit to doing them long term. I appreciate all the comments, this forum is very helpful.

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.