Had avastin added to my carbo/taxol regime two weeks a go. For the last 10 days I ha ve had a painful, sore burning mouth and ulcers on my tongue. I’ve been using the mouthwashes from the hospital, which haven’t really helped but sting a lot! Anyone else suffer with this and how long does it last?
This is my 4th cycle but 1st following my surgery on 23rd December and first with avastin
Thank you any advice appreciated
I’d definitely speak to your triage team or doctor if you can to see if they can help - that sounds very unpleasant! When I had Avastin with Carbo/Taxol I found it made me hoarse for about a week l, but on its own it doesn’t have the same effect at all - so hopefully when you get to Avastin only (assuming that’s the plan) it might not have the same effect on you.
Thank you xI did phone them and after 7 hours in the day clinic came home with the mouthwashes, really don’t want to do that again x
I have 2 more cycles with the 3 drugs and then on to avastin on its own, so hopefully it might lessen.
Thanks so much for answering xx
Hi I have suffered from mouth ulcers for years even before chemo. I exhausted all over the counter meds and none seemed to help. There was one that I found which helped which is a paste called orabase. I did get it on prescription from my dentist but not sure if you can buy it now. I know your ulcers are caused by the drugs but also try and avoid toothpaste that contains sodium Laurel sulphate. There are some but can’t think off the top of my head which. Sensodyne maybe as that is what the dentist gave me samples of. Other than than difflam mouthwash. Hope this helps. Oh and just to give you a laugh. I started getting mouth ulcers as a teenager- real whoppers. The dentist told my mum it was adolescence and I would grow out of it. I’m 56 now!!!!
😀I am finding the mouthwashes very strong, the antiseptic one stings so much it makes my eyes water! I’ll check the toothpaste though.Thankyou x
Difflam isn’t too bad. It’s on prescription though. I find it milder than the others. Love Angela x
Angela I can buy it over the counter at boots . X
That’s great. I hope you find it more comfortable than the others. Difflam was recommended by my CSN So can’t be bad - good luck
Love Angela x
I know how painful can be. My oncology nurses recommend rinsing with bicarb of soda in water at least 4 times a day. I hope this helps!
Thank you xI’m having a day off and just using coconut and then rinsing with salt water - much less stingy and no tears😬
The salt water will act as antiseptic and keep infections away so maybe stick with this regime of it's working for you.x
Your team sbould give you in addition to precription mouth wash a pill to help w the sores. I didnt have this when i was on that protocol but was encouraged to use mouthwash anyway. I did have dry mouth and swollen tongue . Hope the docs can help you stay strong this is a good protocol hugs from france
Thank you xI will ask them next week on my phone consultation x
I have a problem normally with sore mouth, and cannot use most mouthwashes without feeling like someone is running a flamethrower round my mouth, so I'd highly recommend the bicarbonate of soda and salt in warm water mixture instead of the painful mouthwashes - half a teaspoon of bicarb, a quarter teaspoon of salt in a large mug, top up with hot/warm water, wait for it to cool. Use as often as necessary, much, much less painful and quite effective, I got the 'recipe' from an Australian chemotherapy website.
If toothpaste burns (which I always find it does) there's one called Oranurse unflavoured Toothpaste 1450 (available on Amazon) with no mint, otherwise Sensodyne Whitening Repair and Protect for sensitive teeth has no SLS and is the mildest minty toothpaste, doesn't burn my mouth like anything minty usually does. Sensodyne does other ones for sensitive mouth, but they are all much more minty than the one I mentioned.
Miriam
Thank you xI’m going to try it for a few days, much less painful!
Hi Artyrose. There is a prescription called Magic mouthwash. it is a compound of A few ingredients, one of which is Lidocaine to numb. Maybe your Doctor can prescribe? Worth a try. I also rinse my mouth with a combo of water, peroxide and baking powder a few times a day. Good luck, Nadie
Kids fruit flavored toothpaste might be an option. I also chewed fruit flavored gum to reduce the dry mouth feeling. All the best! Deb in Colorado
I love in France and here they routinely prescribe bicarbonate mouthwash to prevent mouth ulcers.
If you google bicarbonate mouthwashes there are lots of recipes.
Good luck
I was ok with Avastin with carbo apart from squeaky voice.However now Iam having Avastin on it's own I have had a continually sore tongue. GP gave me a cream they use for oral thrush which does ease it. Use it after I clean teeth with a childs toothbrush and a mouthwash off the shelf. Listerine do a milder one that doesn't sting so much. Have 10 more Avastin to go. Hope you find something to relieve your discomfort.x
Yes, it’s mainly my tongue now, constant burning sensation!Is it canestan or daktacort?
Daktarin-miconazole. Have also found that it is aggravated by sweet or salty food. It so horrible for you. With the original mouthwash I would use it but ,have water on stand by to alleviate the sting. Hope it improves for you.x
Thank you xIt has eased a bit as is now just the tongue, but most foods still sting! I will get some x
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