Hi lostinfrance
Oh how i sympathise with you, I too had the mouth problems from hell during chemo,my onc always gave me Difflam mouth wash plus difflam throat spray , anti fungal lozengers, bongela,and sometimes Penicillin as i also used to suffer with throat infections . Like you i had good oral care but it didnt seem to help with the mouth problems, i think it is one of the worst SEs you can have on Chemo as you cant eat or drink anything without being in pain , in the end i found the only thing that helped was lots of ice lollys ,(use to sit up in bed at night sucking ice pops lol) its not funny is it.
Interesting links, id certainly give it a try if it helps ,good luck with it and realy hope you get some relief soon.
all the best Linda
Im just recovering from this. Total nightmare. I thought I had frostbite after eatting too many ice lollies! The first thing that helped me was ‘cymex’…such a relief when I put it on. I tried ‘bonjela’ type ointments which stung like crazy. Cymex was like putting a layer of skin on. Bliss! Then I also used vaseline. When it was almost better I used the bonjela which finshed off the healing process. Thank goodness. Hope this helps.x
Hooray…well not quite…big hugs I think more appropriate…I am just relieved I’m not the only sufferer!
Have spoken to chemo nurse who thinks the dose of docetaxel was too big for me and said I shouldn’t have a mouth like this…but none of them had heard of Caphosol and said go and buy some difflam from Boots!
Soooooo phoned Boots…yes I could order and buy Caphosol but would not arrive until after new year and would cost…50 quid!!!
Suggested I ask gp if I can have it on prescription, but only if on ‘list’
This seems bizarre as I can go and spend a fortune on stuff that i the bees knees or buy or have prescribed stuff that is ok but well…as the nurse put it!
I am also suffering from an extremely painful mouth which has developed over the last 3-4 days. I started AC on 23rd Dec and this is far more distressing than the problems I’ve had with nausea and a sensitive gag reflex.
It feels like my mouth is on fire and it’s mainly centred on either side of my tongue at the back. The rubbing of my tongue on my molars is excruciating and the whole thing is nothing short of miserable.
Like the rest of you I have good oral hygiene but I’ve had to give up on mouthwash because it burns so much, ditto for bonjela. OH bought a tube of anbesol because it’s supposed to have numbing effect and it works but only for an hour so. I’ve reapplied it so often that I’d used the tube up after one day.
Right now I would give anything to ease the discomfort, so I’m interested in suggestions that will help too.
So sorry to hear this Nymeria. Cymex was the only thing that helped me at first. My moth was sooo sore and my lips were swollen like a big fish! Cymex seemed to put a coating on it to help the healing, vaseline and then after a couple of days bonjela. You may need antobiotics from the doc. I hope you get some relief soon.x