Tips on dry mouth from tongue based cancer after treatment

Hi All

I had tongue based cancer which had spread to lymph nodes on right hand side of neck, caused by HPV virus. I had a 6 week course of Chemo and Radiotherpahy which finished 18th Dec. I had a food peg fitted which I hated, but ultimately saved my life and removed last week of March.I am in recovery now and doing well. I was always into keep fit, so my focus has been getting my fitness back, I believe all helps mentally with how I feel.  However my mouth feels like I have permanently swallowed sea-water as a result of what saliva I have being very thick and salty. My mouth is very dry and also has a numb like sensation as though you have eaten something hot, hard to describe. Food is 25% enjoyable, 75% functional as lack of saliva means I find it very hard to chew some foods they just dry up into a sticky mush in my mouth,  I appreciate this is a waiting game over next year or so to see if or how much of my saliva returns as this treatment can destroy your saliva glands and each person is different. Any tips from anyone who has experienced this appreciated, and also if you did get your saliva returning to a greater degree. I have tried Biotene, Artifical Saliva all of which do not really do that much, I also realise I am very lucky to be at the stage I am compared to others with this diagnosis. 

Parents
  • Hello Phil. 

    I'm glad to hear that you're recovering well from your treatment. It sounds like you've got a really positive mindset to dealing with things and that's great. 

    We've quite a number of members here on the forum who have been through treatment for oral cancers and I'd suggest in the first instance having a look for posts by [@RadioactiveRaz]‍ , [@Taff123]‍ and [@Anchor1707]‍ . You'll also find in their posts links to blogs that they have written about their journeys and I'm sure you may pick up some hints and tips if you have a read through those posts and blogs. 

    It may also be worth giving our team of nurses a call. It may be that they're able to offer some additional support and advice as well. They're available Monday to Friday from 9 am to 5 pm on 0808 800 4040.

    I wish you well for your continued recovery! 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

Reply
  • Hello Phil. 

    I'm glad to hear that you're recovering well from your treatment. It sounds like you've got a really positive mindset to dealing with things and that's great. 

    We've quite a number of members here on the forum who have been through treatment for oral cancers and I'd suggest in the first instance having a look for posts by [@RadioactiveRaz]‍ , [@Taff123]‍ and [@Anchor1707]‍ . You'll also find in their posts links to blogs that they have written about their journeys and I'm sure you may pick up some hints and tips if you have a read through those posts and blogs. 

    It may also be worth giving our team of nurses a call. It may be that they're able to offer some additional support and advice as well. They're available Monday to Friday from 9 am to 5 pm on 0808 800 4040.

    I wish you well for your continued recovery! 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

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