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Tips on dry mouth from tongue based cancer after treatment

Phil.
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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
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    Hi Phil I am almost 3 years post radiotherapy for tonsil cancer with several affected lymph nodes. The thick saliva does eventually decrease but dry mouth is still with me especially at night time .i chew sugar free gum most of the day make sure  it’s  xyitol as the sweetener at night time I use 1/2 an xyimelt popped in just before I drop off to sleep. These yiu have to buy. But I use a bottle a week if bioxtra mouth wash on prescription. Try to drink at least 2-3 litres of water a day. It does improve for at least 9 months it’s a case of eat to live as opposed to live to eat. I have a blog with tips and my experiences it may help 

    www.radioactiveraz.wordpress.com 

    food does become pleasurable just takes time. Spicy food I fear I will never manage but hey it’s worth it.

    Bread does get better as well

    Hazel x 

  • Offline in reply to RadioactiveRaz

    Hi Hazel

    Thank you for your reply. In many ways I consider myself lucky so far. I am able to eat a variety of foods as long as with a sauce or gravy, i think because I am feeling so good physically, my fitness and strength are coming back,   I had hoped mouth would feel a bit better than it does.

    i can eat bread just had some peanut butter, but it is an effort. I am just determined to try and eat what I used too.

    It is just this awful salty, dry numbness I have all the time, however much water I drink, which means food is more functional. As long as I know some hope this is not forever I can deal with it.

    Thanks

    Phil x 

     

     

     

     

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  • Offline in reply to RadioactiveRaz

    Hi Hazel

    Thank you for your reply. In many ways I consider myself lucky so far. I am able to eat a variety of foods as long as with a sauce or gravy, i think because I am feeling so good physically, my fitness and strength are coming back,   I had hoped mouth would feel a bit better than it does.

    i can eat bread just had some peanut butter, but it is an effort. I am just determined to try and eat what I used too.

    It is just this awful salty, dry numbness I have all the time, however much water I drink, which means food is more functional. As long as I know some hope this is not forever I can deal with it.

    Thanks

    Phil x 

     

     

     

     

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