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
  • Hi Phil 

     

    Glad to here you are doing well.

    very similar treatment etc to you, although mine was throat cancer, and also ended up getting neck insection to remove around 13 lymphnodes.

    9months since last Radiotherapy, saliva still only making about 5-10%, so taste buds are still pretty useless too.

    Admit not had any thick saliva,,,,TBH I just have bottle water with me at all times, only take water, or tea,coffee ( but use a whitener as opposed to milk) Dairy seems to leave a skin in my mouth. 
    admit it's hard to retrain yourself on the basics of eating and drinking....Am using opportunity to eat and drink more healthy than ever, and look after myself, i feel I owe that to the health professionals and for the people who are not so lucky.

     

    Good luck with your recovery

     

    bobby

Reply
  • Hi Phil 

     

    Glad to here you are doing well.

    very similar treatment etc to you, although mine was throat cancer, and also ended up getting neck insection to remove around 13 lymphnodes.

    9months since last Radiotherapy, saliva still only making about 5-10%, so taste buds are still pretty useless too.

    Admit not had any thick saliva,,,,TBH I just have bottle water with me at all times, only take water, or tea,coffee ( but use a whitener as opposed to milk) Dairy seems to leave a skin in my mouth. 
    admit it's hard to retrain yourself on the basics of eating and drinking....Am using opportunity to eat and drink more healthy than ever, and look after myself, i feel I owe that to the health professionals and for the people who are not so lucky.

     

    Good luck with your recovery

     

    bobby

Children
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