Sore mouth

[Elfed]

Can anyone who’s had mouth ulcers tell me how long they last, I’ve had them about 10 days and don’t seem to be getting any better, I’ve been using difflam 3 times a day.

Only got them after the 5th chemo of carbo/caylex

[Samjane]

I’ve been suffering badly too with them. Some huge ones on side of tongue! I asked hospital for something else and they gave me boxes of Gelclare (not sure of spelling sorry)! Ring and ask your nurses also a paste I ordered online which is fab. I will send details in morning xx

[Juleswhee]

Hi , mouth ulcers are a pain on Caelyx , the ones in the tongue are horrible . I was prescribed Benzydamine mouthwash. Xx

[Hidden]

Didn't get them, but used bicarbonate of soda to avoid them... and I did. Might help to soothe?

[Alifit]

I had mouth ulcers and a ghastly sore patch on my lip for the first three doses of Carbo/caelyx. I used all the mouth washes prescribed plus bicarbonate to clean my teeth and rinse my mouth. Try to find toothpaste which doesn’t contain something called SLS - I use either children’s toothpaste or one from my dentist called Curaprox. I treated the sore with Germolene. After my third chemo, as my neutrophils were really low - under 1.00, I was given a white blood cell booster called Neulasta to inject the day after chemo. This has resulted in much more energy, although it takes the full 4 weeks for my neutrophils to get back to normal. I think this has helped my sore mouth too - I tried mustard and Peppermint Fisherman’s Friends this week (not at the same time!), neither of which I could tolerate before, and the went down a treat - no pain in tongue!! It might be worth asking about Neulasta, but you’ll only get it if your neutrophils are really low.

Good luck, I hope you can resolve this ghastly side effect.

Best wishes, Ali x

[Carpag]

First of all I would recommend using a toothpaste which doesn't contain SLS available from Health stores and then gargle with aspirin which helps with the soreness. There is also Raspberry Mucilage which is available on prescription. Although I recently finished Caelyx/Carbo I didn't suffer other than the odd small ulcer which quickly cleared. Hope this helps

[Hidden]

Hi Elfed. I had shocking ulcers with carbo/caelyx. As Jane above, I had a monster on the side of my tongue plus others and needed all my food to be blended down. For my 3rd chemo infusion, my onc reduced the caelyx by 10%. I still had ulcers but they were tolerable after that - no blending. Best wishes. Pauline.

[tara108]

Hi. I gargled with bi carb and salt 6 times a day. I tried everything else but the only thing that got rid of my mouth ulcers was something from chemist called Orabase. Not sure if they have that in UK but must have something similar. Hope you are out of pain soon. Hugs from Australia

[Hidden]

Mouth ulcers are common with Chemo. So difflam can be useful as can salt and water rinses or Corsodyl. Ring your Unit or mention next time you are in because they will be able to recommend something depending on how bad they are. Avoid spicy foods and tomatoes meantime, all the best

[kat98116]

Chemo delays the healing process, and that's why they last so long once they are formed. Here's what worked for me while on Caylex:

1. Squiggle toothpaste - rec. my a dental hygenist and the only thing that didn't burn. Get on Amazon.

2. Frequent rinsing with bicarb/salt rinse. I learned to be fastidious about brushing and rinsing after EVERY morsel I ate.

3. Dabbing on magic mouthwash on the sores. I couldn't tolerate the whole mouth numbness so only used where I needed it.

4. Ultimately needed a dose reduction (20%) of the caylex.

5. Tylenol and/or ibuprofen for pain when needed.

Wishing you the best. I know firsthand how much this hurts!

[Elfed]

Thanks everyone for your suggestions, I think they are just starting to ease today, just in time to start again with chemo next week 😏 x