Does anyone know if there’s ANYTHING else I can try for my poor mouth?
It is soooo sore: coldsores, tongue raw around the edges with ulcers at the back and aching so badly, gums swollen and peeling. I don’t seem to have thrush.
I’ve got a soft toothbrush and am using my toddler’s toothpaste as ours is agony, but haven’t been able to floss for a couple of weeks now which feels horrible. And I’m using Clairgel before bed and Difflam after breakfast/lunch/dinner (ouch).
Last cycle it was quite bad and onc just shrugged (sympathetically) and asked if I was up to another session!! So I guess I have to live with it?
Hi
Have you thought to contact Macmillan. I know this sounds a bit drastic but when my dad had cancer he lost weight because he wasn’t eating and the local hospice, which is funded partly by macmillan used some gel which they put on a cotton bud and wiped round his mouth. It made it bearable for him to eat, drink and talk. Sorry, but have no idea what it was but it worked like magic, as it soothed his mouth enough for him to eat and enjoy talking etc again.
Ali.
x
My mouth was awful after last chemo. I named my ulcers australia, Asia and Africa, they were so large. My onc wanted to give me lidocaine lolly pops this time, but the pharmacy didn’t have them so I got lidocaine ointment. I haven’t used it yet but am hoping it works. Good luck. Debx
The best treatment for mouth ulcers is pure pineapple juice. Asda sell it but make sure you get the pure one. There is an enzyme in pineapple which cures ulcers. Swish a few mouthfuls around your mouth 4 times a day. You can of course drink it if you wish. If you are still having chemo it is best to take some iced lollies with you and suck them during the treatment. I took them in a wide mouthed flask and they stayed frozen for long enough.
I got some ‘difflam’ oral rinse from my chemo team and also some ‘gelclair’ sachets to rub on the inside of my mouth. I think these can come from your gp too, but if in doubt speak to your chemo team, and don’t suffer in silence!
Hi Jane,
I cant suggest anything new I’m afraid, just to offer a few words of hope. I had a horrible mouth after chemo 1 and 2, completely ulcerated all over. Its been (almost) completely fine ever since- I’m a week past chemo 5.
I’ve lost track of where you are with your chemo but don’t get too despairing thinking the mouth will get worse and worse with each one this is not necessarily so.
You have my sympathy its horrid.
Naomi
Jane, when I had my first chemo a couple of weeks ago I was given a mouth wash called Chlorhexidine Gluconate, and also something called Nystan which you put in your mouth, swish around for a bit and swallow. I’ve been using these regularly and haven’t had any mouth problems as yet. That’s not to say I won’t at some point of course but they do seem to be working at the moment.
Hope you can find something to help you.
Amanda
I sucked ice cubes during chemo and had ok results - still got all the taste disturbance and sensitive tongue - but nowhere near as bad as your se’s. Hope things improve for you soon x
Hi Jane,
I do sympathise as I had terrible mouth ulcers after my first and second chemo, if fact the 3rd was postponed because of it, the onc wasn’t happy to give me chemo till they had healed up.
I tried everything but found difflam good, before eating and brushing teeth-makes it a bit more bearable. Also got hold of some toothpaste called Squiggle enamel saver, recommended on this site, costs about £6 and got it online, cant remember name of company sorry but you could google it, that was brilliant and it lasted me till way after I finished chemo. Something called Frador {red stuff you apply with a cotton bud} if v effective for healing them but be warned it really stings! Can buy at chemist.
Good luck xx
I really feel for you because before chemo I used to suffer from mouth ulcers all the time. Like Amanda I use Chlorhexidine Gluconate mouthwash (about 3 times per day) and although I have had a very woolly mouth and everything tastes like cardboard for 10 days after chemo I haven’t had one ulcer, touching wood as I speak!. I also brush my teeth about four times a day too. I gargle with aspirin too as I tend to feel sore further down my throat/neck about 7 days after chemo.
Before my chemo started my Onc told me that if I ever suffer with mouth ulcers really bad they would give me a gel to put in my mouth before next chemo to prevent any mouth ulcers coming up.
Hope you can get something sorted for next chemo. Do you just have one more AC to do? and when is your baby due?
Hiya,
Your dentist may be able to help too. I know a few of us who started in June our dentists painted stuff inside our mouths. Mine also told me to use flouride chewing gum as he said alot of the mouth problems are because the production of saliva is reduced and so the dry mouth causes alot of the other mouth problems to take hold. He said when I had the dry mouth I should chew chewing gum for at least 15 mins every hour - hour and a half. With the sickness from my first FEC I couldn’t bear to chew gum. I got a very dry mouth and soon afterwards the soreness and ulcers. Second time around they got the sickness under control and I used the chewing gum and had only one ulcer the whole time which went as soon as I used Corsodyl mouthwash (don’t use it when you brush your teeth though must be at a different time).Not sure if the difference was from the chewing gum or the lack of throwing up. That said the chewing gum did make my mouth feel much more comfortable.
Sorry to hear you are suffering so much with this - a sore mouth certainly is a miserable side effect, as if you didn’t have enough to cope with.
I always had an ice-lolly while having my chemo, my chemo unit provided them. I also, like Jo, used chewing gum, not to help a sore mouth, but to get rid of the horrible taste I always had in my mouth, though it may well have also stopped me from suffering from mouth ulcers too much. I also used an alcohol-free mouth wash for the majority of the time, apart from when my mouth was sore and then I used the Difflam mouthwash I was given by the chemo unit.
Hope you find something that works and that it improves for you soon.