Years later

FormerMember
FormerMember
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I had base of tongue cancer and finished chemotherapy and radiotherapy in May 2005. Then, nobody told me about the terrible repercussions on my teeth in later years and so far I have lost 3 bottom teeth at the front which just snapped off after being weakened by radiotherapy and I looked after mine religiously using duraphat 5000 toothpaste and tooth mousse hoping to hold off the inevitable.

The problem is that very little invasive dental work can be done as they are worried that infection could have extreme consequences, I have talked to the dentist about false teeth but they are reluctant (I currently have a partial denture) for the reason I have just outlined and the fact that my mouth is very dry and food sticks to my teeth and will be worse if I have full dentures.

I am due for my usual dilatation next week to ease my swallowing which I have every 18 months/2 years and wondered what experiences others have had in this regard.

  • Hi John.
    I guess if you had RT in 2005 you must have had much less targeted therapy than we get these days. You say your mouth is very dry. Mines not too bad

    I’m only three years on and I’m completely OCD over oral hygiene. I brush, use interdental brushes and floss before and after breakfast and after lunch and dinner. No snacking and no sugar unless part of a meal. At night I use the GCMI paste which is like the mousse but has added fluoride. I have had a couple of teeth chip but have had them restored really well and had one crowned. I visit the dentist every three months for a fluoride varnish. I chew gum to keep my mouth full if saliva. I can’t do any more but live in hope. 

    Dani 

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

    I BLOGGED MY TREATMENT 

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

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  • Hi Jihn have yiu tried a water based tooth pick ? I am 3.5 years post treatment and am also scrupulous with oral hygiene. I too have fluoride  varnish every 3 month and use interdental brushes along with duraphatb5000. I chew sugar free gum and at night/use xyimelts .Mynsakiva is around 95% of what it was. 
    Of course like Dani says  my treatment woukd have been much more targeted than yours was in 2005.  Good to hear 17 years later you’re still with us. 
    Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • FormerMember
    FormerMember in reply to RadioactiveRaz

    Thank you for your help, as I have a part denture now any gum I use sticks to my teeth badly. I like the sound of xylimelts and have not heard of them before so I have just ordered some from a website.

    do you know if you can buy them from a pharmacy as that might be easier in the future.

  • Hi John very occasionally my chemist stocks them but they are much more expensive than online. I find it’s best to look at several sites online as prices vary I use 1/2 of one at night time breaking it I half with a knife on the brown side a sharp bang with a knife tends to work best. Trust me I’ve tried various things ti break them including husbands dreammel  ! That didn’t work .I find 1/2 just right for me as my gums are fairly small.

    Hooe they work for you give them a few nights, intend to have a sip,of water popmone into gum and after about 10 seconds it’s stuck 

    Hazel

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Hi John

    I get mine from The Mouth Ulcer Shop and Dental Direct or from Amazon four packs at a time.I've linked the sites in red. I started off with two at night for around six months and I am down to one now. I suspect that will be a lifetime habit now. These should at least help keep your mouth moist at night. Quite a few people use them through the day too. I don't know how your salivary glands might react with so many years of scarring but maybe it might be worth exploring acupuncture. I have two posts in my blog at the bottom of this post.

    Our dental erosion due to lack of saliva occurs at the gum margin rather than occlusal surfaces. Is it worth asking your dentist to crown your remaining healthy teeth?

    Dani 

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

    I BLOGGED MY TREATMENT 

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

    Community Champion badge
  • Hi John

    My experience with my teeth after surgery and radiotherapy and my ongoing issues has taken a toll on my teeth too. I have an obturator -  so it is sort of a partial denture. The obturator can be a bit of a burden to the remaining upper teeth as they need to support the obturator. I do have plenty of saliva but food does stick to my teeth, so I am very conscious of this.

    So before cancer I had good strong teeth and very few fillings. I am 13 years on from initial treatment. I have lost two teeth so far after treatment, I lost 6 teeth due to hemi maxillectomy and anticipate l will  probably may lose more.  I use Duraphat toothpaste twice a day  with an electric toothbrush, mouth wash, floss or interdental brushes. I use a baby toothbrush and non prescription toothpaste for my in between cleans. I probably clean overall 4 times a day and on  some occasions more. I think I probably have over brushed on times in hindsight. Sometimes I just run my baby toothbrush over my teeth with just wetting the brush with water and no toothpaste for my in between cleans and floss. I use salt water gargle rinses as mouthwash or baking soda rinses just to vary things up. 

    I do now have  some gum recession - worse on my upper teeth where I have had treatment which worries me. Some of  my bottom teeth have some gum recession but are all stable and not in too bad condition. So like you I am trying to keep my teeth as long as possible. What I am doing is now as a conscious effort -  use my electric brush twice a day and reducing the time brushing making sure I am not applying too much pressure. Swish my teeth with water after eating and drinking when I can, or simply drink some water afterwards. Brush with my baby tooth brush in between cleans twice as a maximum per day and trying to remember not too brush too soon after eating.   I hope this delays things for me. I will carry on with varying my mouth washes and flossing or using interdental brushes as usual.

    This is what I am doing just to share on my personal situation.

    Best wishes

    Nicky

  • Oh cripes Dani.  I never realised and was never advised that the lack of saliva affects the gum margin rather than teeth.  That may explain why my hygienist and dentist have suddenly found the gums near the radiated site are receeding despite all my stringent dental care!  I've now started using a single tuft toothbrush in those areas along with all the other paraphernalia!

    Linda x

  • Joy
    Yes there are a few things we have to find out for ourselves. Nuts isn’t it! 
    More paraphernalia indeed. It’s like taking a baby out for the day 

    Dani 

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

    I BLOGGED MY TREATMENT 

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

    Community Champion badge
  • I have to start my routine half an hour earlier!

    Lx

  • FormerMember
    FormerMember in reply to LindaWT

    I don’t go anywhere without a toothpick in my pocket and because of my swallowing difficulties it takes a very long time to eat a meal, consequently I always end up eating a cold meal which is warm/hot when I start.

    After dilatation next Thursday I’m hoping this will ease off for a couple of months at least.