Glossectomy, neck dissection and RT updates

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Hi everyone,

I just wanted to open this thread to post a few updates on my father in law's progress.

As a quick summary, he had a partial glossectomy in July 2023, followed by a partial neck dissection in December 2023 (2 lymph nodes had cancer, with extra capsular spread).

He had a tooth out in preparation for 33 RT sessions in Leeds in mid January 2024. After the tooth came out he got mouth thrush. He's been having tablets for it, but it's still there...

RT started last week and, as expected, he's been doing well. Still managing to get out on daily walks, including an 8 mile one at the weekend!

Will keep updating here roughly every week, in case it's useful for anyone going through a similar path.

  • Thanks Isabel I wish your father well and speed through his treatment. If you put a quick resumé of your dad’s history in your  profile it will help folk new to this understand what’s happening without searching your previous posts 

    Best Wishes. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • Hi Isabel. Leeds cancer centre was mine as well. The staff like  all our fab nhs staff do their best. Great re 8 mile   walk. 
    re thrush I needed 2-3 courses of flucozonole tablet's before mine cleared up 

    thank you for updates they really  y help the ones who will follow. 


    hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Thanks for the suggestion, I've added the text now Thumbsup

  • Nice to know you were at Leeds too!

    He sked about mouth on Monday and junior doctor said it looked fine. However, he still thinks thrush is there and after a nurse looked at he's been given another prescription. Will find out what, apparently not flucozonole.

  • I've added the text now

    Thanks xx

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • 10 sessions done and here's a quick update:

    First check up with oncologist after treatment started, all OK, she doesn't think there's thrush. Consensus seems to be that the weird feeling in his tongue (numbness, tingling) is due to nerves recovering after glossectomy. He's now having Gelclair and Antacid + Oxetacaine to try to help.

    Can't seen to close his lips completely, so is being a bit of a messy drinker.

    A bit of sensitivity to heat on the inside of his top lip.

    Some loss of appetite, but still eating his usual quantities.

  • Keep going Isabel's Dad...Hugs

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • 15 sessions done, and, as expected, things have deteriorated.

    He is now describing his mouth as a "warzone" due to all the ulcers. His tongue is quite swollen, so talking is difficult, tiring and painful.

    He is on very soft, practically liquid diet now, not tolerating hot or cold drinks. Taste has gone. Fortunately weight is stable.

    Managed up to this point with paracetamol only, now has been moved to paracetamol + codeine. 

    Can't tolerate flouride mouthwash anymore, but is still using high flouride toothpaste.

    He is on salty water, dispersable aspirin, gelclair and Antacid + Oxetacaine. 

    Any ideas on what might help with tongue inflammation? 

    For mouth pain, the dispersable aspirin seems to be the most effective, but not fully. Antacid + Oxetacaine not particularly effective. Was told he should take it 20 minutes before eating. Should he leave it in his mouth as long as possible? More or less time before eating? Any other topical anesthetics that might help?

  • For mouth pain, the dispersable aspirin seems to be the most effective, but not fully. Antacid + Oxetacaine not particularly effective. Was told he should take it 20 minutes before eating. Should he leave it in his mouth as long as possible? More or less time before eating? Any other topical anesthetics that might help?

    I can’t help much except to say I was on morphine by the time paracetamol didn’t help. Mouth preps were the same but added Caphosol which is just protective not analgesic. 
    A week later I was tube fed. Couldn’t be doing with fighting pain to eat. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • Thank you Dani, will look into Caphosol. 

    He is very reluctant to even discuss morphine (he doesn't want to feel "dopy" and wants to continue driving) or feeding tube (not sure why, perhaps an ego thing?).

    But maybe as time goes by...