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Tongue cancer

Posted by jaybb1 @jaybb1, 2 days ago

In Nov 2025 I had tongue surgery for adencarcinoma of the Tongue. Three weeks ago completed 30 Radiation sessions. Tongue still hurts, but glad the feeding tube and trach have been out for months. Next week I will start Lymphedemia Therapy for neck (it hurts) and lower jaw. But I have slight pain, disconfort in upper chest and left shoulder that I attribute to Radiation Therapy. Who else experienced this.???

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sandy8043 | @sandy8043 | 18 hours ago
In reply to @sandy8043 "@jaybb1 here is the website for the face wrap. I use it with a "chip bag"..." + (show)
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@jaybb1 here is the website for the face wrap. I use it with a "chip bag" from my OT. Its a bag of foam rubber chips. Sounds weird but works great. I got my first one from my Mayo OT and it worked well. Since then I buy them directly from the company. The one they sell on Amazon is too hard to get on right.

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@sandy8043 Forgot to include the website! Sheesh!
https://www.designveronique.com/post-surgical/facial-wear/universal-facial-band/

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roblem | @roblem | 18 hours ago
In reply to @jaybb1 "@sandy8043 Thank you--Sandy. Now I know what to expect over the next 2 or 3 years...." + (show)
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@sandy8043 Thank you--Sandy. Now I know what to expect over the next 2 or 3 years. Still wondering if beyond neck--- Lymphedema can spead to upper chest area (but not shoulders) where I have disconfort and tightness. I was thinking that dry-mouth would correct itself over the next year or two, but that is to be seen. I was not aware of face compression wrap, will look into it

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Hi @jaybb1

Your upper chest having discomfort and tightness could be from aspirating on your own salvia, eating food or liquids. Sometimes you may not even know that it's happening. If you get CT scan with part of your surveillance after treatment, it should be able to detect it. Happened to me which turned into a low-grade aspiration pneumonia that I was walking around with for many months. I figured it out with my own research and got a referral from my ENT to see a pulmonologist who gave me an Aerobika Device as mucus was plugged up and this released it. Since then, it has reduced substantially and I even can take very deep breaths again without coughing or feeling that tightness.

God Bless

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sandy8043 | @sandy8043 | 17 hours ago
In reply to @roblem "Hi @jaybb1 Your upper chest having discomfort and tightness could be from aspirating on your own..." + (show)
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Hi @jaybb1

Your upper chest having discomfort and tightness could be from aspirating on your own salvia, eating food or liquids. Sometimes you may not even know that it's happening. If you get CT scan with part of your surveillance after treatment, it should be able to detect it. Happened to me which turned into a low-grade aspiration pneumonia that I was walking around with for many months. I figured it out with my own research and got a referral from my ENT to see a pulmonologist who gave me an Aerobika Device as mucus was plugged up and this released it. Since then, it has reduced substantially and I even can take very deep breaths again without coughing or feeling that tightness.

God Bless

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@roblem My chest tightness is as a result of lymphedema and radiation fibrosis. Self massage helps but its not as good as professional massage. I also use a lymphedema pump made by Tactile Medical. It includes a helmet/mask as well as a vest. Its wonderful for managing lymphedema. Very relaxing, too.
https://tactilemedical.com/our-lymphedema-solutions/for-head-and-neck/

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zenren14 | @zenren14 | 7 hours ago
In reply to @jaybb1 "@zenren14 You waited a year to start seeing a MLD specialist in HNC. Interesting. Did not..." + (show)
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@zenren14 You waited a year to start seeing a MLD specialist in HNC. Interesting. Did not know there is a MLD therapist dedicated to HNC. Tomorrow is will meet my therapist and see if she is MLD or mainly motion. And find out her experiences treating HNC. I am reading in some articles that therapy, MLD, should be done initially 3 to 5 times a week. I thought by talking to a few centers that it is 1x a week since that is what they do. Anyone going multiple times a week. ???Thank you everyone for responses

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@jaybb1
I used to get mld treatment weekly.
Now, it's once or twice a month.
Home maintenance is key.

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zenren14 | @zenren14 | 7 hours ago
In reply to @jaybb1 "@zenren14 Good feedback: swimming. I will need to go back to the "Y' and restart my..." + (show)
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@zenren14 Good feedback: swimming. I will need to go back to the "Y' and restart my swimming that I stopped several months ago.

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@jaybb1
I was stuck with a virus for a month so swimming was on hold.
Let's get back in the game, summer is around the corner.

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