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I finished 30 days of radiation on Jan. 31, 2023, which followed the excision (Nov. 1, 2022) of a squamous cell carcinoma from my left retromolar trigone. I have almost no taste at all, and my saliva flow has pretty much halted. On top of those setbacks, I'm experiencing trismus, which further complicates the eating process. For the latter, I am seeing a therapist, which has helped marginally but not all that much. I can't help wondering what the chances are that taste and saliva flow will someday return and that the trismus will improve to the point that I can eat somewhat normally.


Donald F Amerman Jr
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Well Welcome to the club! Yes, radiation certainly is havoc to your eating. We all have different experiences, I lost my taste for many months, but it did come back. I still don't like hot food. But mu taste came back! Fir saliva, all I remember was the first time I could spit, I was elated. I doid get most of my saliva back. I still us biotene and gum. I am "fair" in that department. Trismuis is a toughie! I can only get maybe two fingers wide, tough at the dentist!!. A therapist rx'ed me a OraStretch, it woirks but It is a continual problem.

Hope this helps~


steve
72 yo
SCC 2009
Radiation/Chemo, clear 2010
Active triathlete
NPO and bad voice after 12 years
But doing great
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Back in 2010 during and after radiation it was all liquid for several months, mostly commercially available formulas, I did find that “instant breakfast” was well tolerated.

These days Aldi has a store brand meal replacement that’s decent.
Taste ultimately came back and I had several good years, spicy stuff still hurt, but, life was good.

Go liquid for awhile, at least it’s going to sustain you.

Use lots of biotene, the lack of saliva can be very hard on your teeth. Bottle of biotene was in my pocket for several years, now since I lost mu tongue this go round I have an over abundance of saliva and can’t spit worth a darn anymore.

The worst part of that summer was my sense of smell was great, I worked at a world renowned theme park and the restaurant aromas would drive me crazy on nights I was working audience control directing people to their buses.

With a handle of ManateeDon you may be aquatinted with said theme park as we may well be in same part of the country.
Good luck, this will pass in time!


1st time around was 2010, Sqamous Cell Carcinoma. Radiation, chemo, surgery: Radical neck dissection.
Cancer free until 2021.
This time around, started 2021, tumors on tongue.
May 2021 partial glossectomy, October ‘21 removal of a few more recurring on tongue.
February til May 2022 immunotherapy....no improvement
July 2022, total glossectomy, living the new normal.
PET February’23 another SCC on neck....next surgery April ‘23, see where it goes from here.
Still fighting.
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Many thanks, Sutlerjim, for the story of your experiences and what you learned from them. I was virtually all-liquid till about a month ago. Therapist for trismus suggested I add some foods that have to be chewed in order to reinvigorate scarred jaw tissue causing this condition. But virtually nothing tastes good, if at all. I think I'll go back to high-calorie Ensure and exercise my jaw muscles some other way than chewing. Once again, thanks for taking the time to share. BTW, I Llive in Bradenton, county seat of Manatee County, FL.


Donald F Amerman Jr
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You are welcome, we’re darn near neighbors...Sebring myself.

Good luck, things will get better. Keep a sense of humor about it.

Feel free to send private message if you need any other local help.

I’m, recovering from having my 4th surgery since May of ‘21, tumor removed from my neck on Monday.


1st time around was 2010, Sqamous Cell Carcinoma. Radiation, chemo, surgery: Radical neck dissection.
Cancer free until 2021.
This time around, started 2021, tumors on tongue.
May 2021 partial glossectomy, October ‘21 removal of a few more recurring on tongue.
February til May 2022 immunotherapy....no improvement
July 2022, total glossectomy, living the new normal.
PET February’23 another SCC on neck....next surgery April ‘23, see where it goes from here.
Still fighting.
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I just had a PET scan on Tuesday, the first since the conclusion of radiation. I'm kinda on pins and needles waiting to hear the results. As a teenager, I went to Sebring for the races once but haven't been back in a very long time. Although I was born in NJ, we moved to Florida when I was 15 because my Mom's whole family was down here. After college I went back to the NJ-NY-PA area in search of better paying jobs in journalism, but I've been full time back down here since 2014.


Donald F Amerman Jr
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Good luck with the scan!

I was part time at track for awhile, but my inability to speak after tongue removal has curtailed that for awhile.
Hard to make radio calls when no one understands you.

Hoping to return to flagging the turns after I get my dentures and the palatal drop prosthetic and some speech therapy.

As soon as I get cleared for some more strenuous stuff I may try to go back the grocery store a day or so a week, stocking shelves and lifting milk crates in the dairy department should help with my physical recovery. Really need to get back to doing something that brings in a bit more than social security alone.

Here’s to better health for us all moving forward.


1st time around was 2010, Sqamous Cell Carcinoma. Radiation, chemo, surgery: Radical neck dissection.
Cancer free until 2021.
This time around, started 2021, tumors on tongue.
May 2021 partial glossectomy, October ‘21 removal of a few more recurring on tongue.
February til May 2022 immunotherapy....no improvement
July 2022, total glossectomy, living the new normal.
PET February’23 another SCC on neck....next surgery April ‘23, see where it goes from here.
Still fighting.

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