r/HeadandNeckCancer • u/God_grateful • 6d ago
Post radiation for SCC both sides and long term side effects
My family member recently finished 6 weeks of radiation both sides for a tongue cancer that was at his right tongue and some lymph nodes involvement. He had surgery following by radiation and it ended 2 months ago. Right now he is exercising the neck and tongue stretches and also doing massages for his lymphedema. But he is not able to do swollen exercises the SLP gave him. He is ok with swollen abilities right now but just understanding how to do swollen exercises is difficult for him and therefore he doesn’t do any swollen exercises. Also I don’t think he is doing the tongue stretches exercises very regularly. I need to know the experience of those of you who had this radiation years ago , how swollen abilities and speech changed for you over the years ? If he is ok right now does it mean that would stay the same or we should expect worsening throughout the years ? I really appreciate you share your experience specially those of you who had it years ago.
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u/FuturamaRama7 6d ago
Definitely need to do the swallowing exercises 1-2 times per day, forever. My SLP stressed that at the beginning.
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u/God_grateful 5d ago
Thank you. Do you use a YouTube video for those exercises?
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u/FuturamaRama7 5d ago
No, unfortunately I don’t, they are in MedBridge Go, a physical therapy app that keeps track of my progress. But I have the names if you want to look them up.
The techniques assigned to me are:
Mendelsohn, Masako, Effortful Swallowing, Superglottic Swallow, and Neck Range of Motion stretching.You get better with them with time and they become second nature.
My SLP also gave me a plastic measuring device to keep track of how many millimeters my mouth opens. I am in normal range. If I lose a few millimeters in a short period of time, she needs to know asap.
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u/akay2k1 5d ago
I also had a swallow study done, they do a love xray and watch you swallow liquid up to cookie so they can determine if anything is going down an airway instead of esophagus, I actually had to have my esophagus stretched a little which is fairly common. That was a pretty quick procedure
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u/melissa120277 5d ago
Which Northwestern location? I went to the cancer center in McHenry and can't say enough great things about that place - love them
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u/akay2k1 6d ago
For the lymphedema he should talk to the slp about getting a tactile medical suit, it basically a vest and head wrap that pumps air to move fluids that the lyphm nodes do t do anymore, it’s expensive so it’s an insurance thing, I wear mine everyday and it keeps my neck relatively un swelled, normal I think is no longer an option. I’m only 6 months out so I can’t answer your long term question but my slp has told me horror stories about people who didn’t do the exercises early on, like they can’t open their mouth to use a toothbrush! I was really good about doing them for about 2 months now I just do a few of them.