Dry Mouth - Back with a Vengeance

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Still very early days post treatment (end of June 24) for me I know, but until the last week or so I'd found my mouth had really improved and was able to eat and drink almost close to normal - albeit spicy stuff was still very much off the menu.

However, over the past week or so it's like it's gone downhill really badly and mouth is as dry as it was months ago and eating most things is once again becoming a real chore.

Naturally, anxious me tells myself it's a sign that the cancer is on its way back although rational me tells me to remember that we should expect ups and downs as we continue on the road to full recovery.

The oral thrush I was told I had a few weeks ago hasn't really gone away and I'm still trying Nystan and Difflam for that but nothing seems to be improving that.

Guess what I'm asking, is this all still normal and just one of the troughs, hopefully soon to be followed by another peak? Or should I perhaps raise with the GP?

  • Hi, I too finished RT July this year and still suffer with dry mouth, washing down food with copious amount of water. Nystatin did nothing for my oral thrush I’ve had about 6 episodes of it now. FlGrinonazole clears for a spell but it keeps returning. Had swabs done but they say it’s just a side affect and looks like I’m plagued with it for now. Hoping you get sorted and I’m sure things will looGrinupGrinxx

  • The oral thrush I was told I had a few weeks ago hasn't really gone away and I'm still trying Nystan and Difflam for that but nothing seems to be improving that.

    Guess what I'm asking, is this all still normal and just one of the troughs, hopefully soon to be followed by another peak? Or should I perhaps raise with the GP?

    Our thrush which is complicated by a completely deranged microbiome does not respond to nystatin. You need Fluconazole and probably two weeks of it. 
    The fungus thrives in sugar so try to cut that out. If you do eat anything sweet make it part of a meal and then rinse your mouth out with salt/bicarb. Then eat a few spoonfuls of live unsweetened yoghurt. Make that part of your normal routine even when you are better and you might be surprised how well your mouth feels. 
    I found a chlorhexedine mouthwash last thing at night but a half hour after brushing with Duraphat ( sls and chlorhexidine don’t mix) 

    Try it? 

    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 Batwoman

    It is now 5 years since my last radiotherapy and I still suffer from a dry mouth. I also had oral thrush a few months ago and used Nystatin but it just didn't want to move. I asked about Fluconazole but my doctor did not want to prescribe it for me, something to do with potential side effects. I should have quizzed him more about it. I had the thrush for 3 months and it just wasn't moving and then my specialist dentist told me to use salt and bicarb as a mouthwash. Apparently it helps change the flora in the mouth or at least I think that is what she said. I used this for a couple of weeks along with the Nystatin and it cleared up the thrush. This along with scrupulous oral hygiene has stopped the thrush from returning. I also soak my dentures in bicarb for a short while every night. I take my dentures out after every meal and clean my mouth and what teeth I have left and rinse with the salt and bicarb.

    Try the bicarb and salt mouth wash along with the Nystatin and fingers crossed it will do the trick for you.

    Lyn

    Sophie66

  • Lyn, Thankyou will definitely give this a try xx

  • Thanks Dani,

    Spoke to the GPs today and they have prescribed me a couple of weeks worth of Fluconazole so hopefully that will make a difference Slight smile

    Honestly didn't know about oral thrush thriving with sugar so thinking that might be a big part of it where I'm concerned. Still very much feel like I'm on "high sugar and high carb" where possible so that won't be helping (especially the 5 or 6 cans of Irn Bru every day !!) so will definitely start making changes there.

    Cheers Slight smile

  • Still very much feel like I'm on "high sugar and high carb" where possible so that won't be helping (especially the 5 or 6 cans of Irn Bru every day !!) so will definitely start making changes there.

    Irn Bru normal and lite will wreck your teeth. Drink milk. 

    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 kick the irn bru in normal mouths it can rot your teeth we have to be super careful and scrupulous with oral hygiene. Milk or water I drink plain soda water or just/water. I’m at dentist every 3 mjnths having clean polish and fluoride varnish applied. Touch wood I e nit had any issues in 6.5 years. The sweet stuff will play havoc with thrush and teet(  sorry but its true. 

    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/

  • Started on a two week dose of Fluconazole capsules today, so hopefully that might at least improve things before Christmas.

    And never let it be said I don't take on advice....my first day in weeks where I didn't drink a single sip of Irn Bru Stuck out tongue

  • Well done baby steps one day at a time. Fingers x for thrush going I needed 2 x 2 week dose so keep  eye on it in build up to Christmas get snigger supply if needed. 

    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/

  • And never let it be said I don't take on advice....my first day in weeks where I didn't drink a single sip of Irn Bru

    Good on you.. you should be good for Christmas. Just rinse your mouth out after sweet stuff. I does get better once your mouth settles down.

    get snigger supply if needed. 

    This is one of Hazel's great mistypes........we all love her for them

    I think she means extra 

    Merry Christmas

    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