Dry mouth

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Hello,

im new to this group and finding it very difficult to navigate.

I have an I extremely dry mouth and am getting more depressed by the day as I’m finding it impossible to eat anything.

Can anyone give me any advice please as I’m at my wits end. 

  • I’ve popped a reply into your other post asking the same. 
    It does get better. 
    On the subject of low saliva and dental decay. You are at risk of caries so make sure you keep up with Duraphat and have a fluoride varnish at the dentists every three months. 

    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

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  • Thank you very much for your reply. I’m 12 weeks after treatment for need snd have been pain free for a good few weeks now. I really want to eat to gain some of the weight I’ve lost but it’s so fShrugtrating not being able to as no saliva ( and 5 less teeth ).  It’s very reassuring to know it gets better though so thanks for that. My oncologist said the same yesterday but it’s a long road isnShrugit. My chewing gum arrived from Amazon earlier and am currently chewing and it is helping with my dry mouth. Haven’t had a sip of water in over an hour. Just gotta be patient I guess. It’ll be baShrugto the supplement drinks for me I think. Shrug♂️

  • I’ve also got a dental appointment next month snd am using the Duraphat toothpaste. Will be asking her about a bridge / dentures snd the flouride application. ThumbsupThumbsup

  • It’s very reassuring to know it gets better

    It does. We do have to be patient. 12 weeks is still early but having gone through awful treatment we are impatient to get away from it all. The RT does a lot of damage and some of that is permanent but we can do a lot to recover a good deal of the saliva. I love "Jerry the cat" made me smile as I'm a great cat lover (cat less at present) but follow Larry on T w I t t e r Wink

    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 Jerry

    Plenty of hydration helps...I used ...and still use.....Biotene Gel, get it on prescription, keep tubes by bedside and in car.

    Eating becomes a problem for most of us...do you have a PEG tube?

    Tough treatment but things will improve 

    Peter

  • Hi Peter,

    Thanks for replying.

    im now 13 weeks post treatment. I’m off all meds and am pain free. Can swallow with no difficulty. I did have a tube down my nose until 6 weeks ago but could manage to drink my supplement drinks orally so had the tube taken out. Am back eating weetabix for breakfast, a small snack in the afternoon but it’s dinner time I’m struggling, purely because I have no saliva to break the food down. I keep my mouth hydrated as best I can during the day with water, chewing gum and oralieve spray and gel but eating any kind of food with little to no saliva is impossible. I’m having a few mouthfuls then I give up and have a supplement drink instead. It’s so frustrating as I want to eat to put some weight back on. It’s driving me mad worrying about the calories I need to consume daily. 

    Lee.

  • Hi Lee

    I finished treatment in June 2023.....September before I was eating small meals....supplemented with  Ensure 2cal.....washed down meals with Guinness alcohol free (extra calories)...October I was eating fish and chips....loads of water and Guinness AF with it...now have a healthy BMI (lost 16 kgs during CRT)...enjoy pizzas and chippy food....but still need plenty of liquids to help them down.

    Takes time for improvement.

    Peter

  • Hi Peter, 

    Thats reassuring to know. I understand it’s a long road but feel like I’m ready to eat now but cannot because of saliva. I can eat certain wet foods or foods with gravy but it’s so repetitive. Luckily I have the supplement drinks and Ensure drinks to fall back on. I think I’m trying to run before I can walk. Will just need to be more patient and give it time but was hoping to be off the suppleShrugt drinks as they’re all I’ve had for the past few months and was just looking for ideas as to what foods might be easy for me to eat. Every meal time ends in disappointment unfortunately. I’ve goShrugfrom 90kg’s to 77.6kgs snd just want to build myself back up. Too soon I guess.

    Lee

  • Forgot to mention I had my first beer yesterday in 22 weeks. What a feeling. I was overcome as I wasn’t sure how I’d be with it. Glad to say it was amazing. Thumbsup

  • Brilliant

    I found a beer with decent a calorie content that I really enjoy....St Peter's Without.

    Great to have some pleasure after the gruelling treatment.