Mouth care recommendations?

Hi Trev

I was prescribed Biotene Mouthwash over 2 years ago when I first started my treatment and I still use it today, still on prescription. 

I was lucky and didn't suffer too badly with ulcers during treatment, just the odd one or two, but I did continue to get them for at least 2 years afterwards even when eating easy foods.   I can't recommend a product to use on them as I just left them to clear up on their own.  

If I eat anything too demanding I still get cuts and blood blisters to this day due to the sensitivity of my mouth and tongue and questionable saliva.  

Linda x

Hi All, thanks for the advice on this, mouth is good again  after a week on bioxtra and ora nurse! Thanks !

Just a quick query, i have over the last 4 or 5 weeks had an incredibly annoying tickly throat, together with runny nose when i eat.

I am guessing it is a combination of dry winter months with dry air (with central heating maxxed!) and increased sensitivity of my throat due to treatment.

I know a lot of the people here used humidifiers during and following treatment, i am just trying to find out how well they worked? and did anyone find a model that uses tap water and softens it?

Ive been searching for an hour or two now and they all seem to use distilled water which is an extra cost and hassle factor.

TrevW said:

I am guessing it is a combination of dry winter months with dry air (with central heating maxxed!) and increased sensitivity of my throat due to treatment.

Hi Trev. Yes tickle scratch throat is as you describe. Watch out for pollen season too.

AS for humidifiers I think only industrial sized ones run on tap water. I don't think the table top ones can cope with having to change filters every day to stop bacteria living on the residue that would be a hazard. I might be wrong.

As for runny nose, yes I had that for quite a while then it just stopped. My oncologist says it's common. He had no explanation why though 

Oooh blimey! I’ve been running my bedside one for a few months on tap water. I don’t remember anything in the instructions to say I shouldn’t, but then again my Cantonese is a little rusty these days! I’d better check it out.
Thanks for the heads up Dani

I don’t suppose there’s anything to worry about if you have really soft water?

Thanks both, i really appreciate it

I think i will just bite the bullet and buy some distilled water, the tickly throat and waking up with a sore and dry neck/throat is annoying enough to justify the cost.

Thanks again

Good idea Trev. I’ve not had an unbroken night’s sleep for weeks now, purely down to the rasping dry throat. The humidifier helps a bit, I think, but nothing else seems to.  Xylimelts were a waste of time for me (I’ve got a spare pack if anyone wants to try them. I’m happy to post them on rather than throw them away. Just pm me your address), Biotex, Biotene do nothing much. I’m just resigned now to waking up for a sip of water every 45 minutes or so and praying that my salivary glands recover even just a little bit in the future! Luckily I do get back to sleep easily and don’t have to worry about work or kids the next day. It must be a nightmare for young working mums especially. 

Just a quick comment on the xylimelts!

I had the same problem with them initially, they didnt help at all, what a waste of money i thought!

But i think it was because i wasnt producing any saliva at all. So i wasnt activating them

Now that i am producing 'some' saliva, but not enough they do work.

I think your treatment has recently finished? give it a couple of months and it does improve. My main complaint about xylimelts is the price, with my bioxtra, duraphat, xylimelts etc i seem to be spending a fortune on mouth care products.

Trev

BioXtra and Duraphat should be in prescription and you have an exemption from charges for five years. 

Thanks Trev. I’m buying Bioxtra too, but I have a friend who went through this recently and he’s passing me on old, but in date, Biotene etc.  Duraphat I have on prescription too, but am wary of the foaming agent (SLS) so only use that once a day. My neck nurse sent me free samples of Oralieve to try in between times. I’m not sure it’s ultra high fluoride though.

 
While here, I don’t know what people’s experience of Difflam is? Again, I’ve had some of the real McCoy from my friend but my doc gives me a non-brand alternative on prescription. It does the same job and looks exactly the same but I find it impossible to gargle with because it foams in my mouth and dribbles down my chin!  Difflam, however, doesn’t. I totally get why surgeries prescribe cheaper alternatives to protect their budgets, but this is one case where I don’t think the cheaper alternative does the job properly.