Mouth ulcers.

[kimbo57]

Hi everyone. Can anyone give me some advice on mouth ulcers? I've had 5 Caelyx and been not too bad so far. A week after my last session, my mouth is now so full of ulcers and white spots, and is so sore and painful. I'm doing all the usual mouthwashes etc. But today i feel so poorly with the pain, so am seeking some advice from maybe someone who has experienced the same. The pain is in my neck, jaw, throat. I can hardly swallow and its making me feel so miserable. I've got the last Caelyx in 2 weeks time(hopefully), but now scared incase another dose makes it all even worse. So I'm even considering refusing any more treatment. Has anyone had the same and how long did it take for it all to calm down? xx

[Lyndy]

Hello, have you reported it to your chemo team? I suspect you may need antibiotics or at least more time for your system to recover before the next chemo. Tell them how badly it is affecting you because it can be easy to dismiss the misery involved. The good news is that the membrane in your mouth recovers quickly…so don’t suffer in silence! xx

[kimbo57 in reply to Lyndy]

Thankyou. Yes, my specialist nurse knows and told me to keep doing mouthwashes etc. I'm so miserable today and have spent most of the day on the bed in tears. xx

[JustKBO]

Ooooh! I feel your pain. I suffered dreadfully. Know understands unless they’ve experienced it. Caphosal is amazing. It’s expensive and GPS reluctant to prescribe. It’s colourless and tasteless but balances all the stuff in your mouth so the ulcers stay away. Along with that Difflam, Anbesol and salt water gargles. I hope they go soon.

[kimbo57 in reply to JustKBO]

Thankyou ☹️😭

[ElayneZ]

I was on Carbo&Caelyx - and I too did the recommended mouth washes but truly what helped - within a day - was a prescription for lozenges - 10mg Troche - aka Mycelex. Hope you feel better soon!!

[kimbo57 in reply to ElayneZ]

Thankyou for that. Where did you get them from?

[ElayneZ in reply to kimbo57]

Pharmacy - My dr gave me a prescription.

[Bettyxxx]

Hi thereI found it was my toothpaste that seemed to aggravate my mouth and it continued after chemo finished I stopped using any whitening ones and it helped and for me the mouthwash made it worse. I used manuka honey the strong expensive one and made a drink with a bit of lemon twice daily and that really helped me

Good luck

Diane

[27-359]

I don't know what mouthwash you have tried, but I found Corsodyl to be good.

Jenny

[TarbonNZ]

Hi. I am currently on Caelyx, and have been having mouth problems. After the second treatment, (3 weeks ago), I had 5 ulcers in my mouth, and esophagitis. The pain was unreal in my mouth, and excrutiating pain when swallowing, so I feel your pain. I was prescribed an anaesthetic mouth wash to wash around my mouth, gargle and swallow. This lasted 2 hours, enabling me to eat. I also eliminated any acid type foods, and finally purchased a bottle of manuka mouthwash, which has worked for me before. I should have got this prior to starting, as I was warned about the ulcers. I find the Manuka works better than the salt/baking soda combo. I now only have the final remains of the worst one, which is under my tongue.

[Realistic]

Hi l was exactly the same with my chemo my mouth was raw with ulcers Christie's gave meCorsodyl mouthwash l also gargled with salt water not nice but it did the trick but it is extremely uncomfortable l had it quite a few times throughout my chemo. Hopefully try that if you havent already, and l would agree with the others tell your chemo nurse they can usually give you what you need to take home after your session but don't suffer in silence there is a treatment and it does seem a common side effect. Sending love SheilaFxxx

[Mumsie13]

I was on carbo/ caelyx last year. Halfway through treatment I developed mouth ulcers. I felt pretty rough; I lost my appetite (difficult to eat anyway), felt tireder than usual and had a persistent low grade headache. I phoned the Chemo Rapid Response department for some advice as I was starting to get a little worried. They did their triage thing and then asked me to come in to department. I was not expecting that, at best just some helpful advice. They did blood tests and discovered I had seriously low magnesium caused, they think, by the chemo. I don't really know what I said that started ringing bells but I am so glad I called them. They were able to treat a side effect that might have gone undetected as my hospital does not automatically check for magnesium levels with the electrolytes. I had a magnesium infusion (or two) immediately and felt lots better. They prescribed some mouth wash that I had never heard of but the ulcers disappeared pretty quickly once I started magnesium treatment. The point of my rather meandering tale (sorry) is that if you are at all concerned you could ring your hospitals Chemo Rapid Response,if you have one. They are there to advise and treat the side effects of chemo and that includes mouth infections. They are concerned about any infections that you might have whilst on chemo. They'd rather people called for help than let things slide. That's what they are there for. Jackie

[Cheryl4677]

My toothpaste aggravated my mouth ulcers and I was prescribed a high-fluoride toothpaste by my dentist called Durophat. This seems to work betterthan Difflam too. Watch that any commercial brand mouthwash is alcohol free. I think people who haven’t experienced are not aware how unwell it can make you feel. The local chemist assistant kept advising me on all sorts of gels but when the ulcers are so far back in your mouth and throat talking, swallowing, eating and drinking are so painful. A good steamy shower used to help me get going in the morning.Cheryl.

[Gardengirl60x]

Hi it was just the same for me when I was on caelyx so I know what you are going through. I used difflam mouthwash and difflam spray which I kept with me at all times for when I was out and about. At night I also applied Iglu soothing gel and this also gave me some welcomed relief. Hope it improves soon. Kath xx

[K95m]

Hi kimbo I’m on a Parp inhibitor (3 years today in fact ! ). Which was giving me mouth ulcers and gum issues. I’ve changed my toothpaste to a Paraben, mineral oil and SLS free one.

I’m using Dr. organic which is available from H&B but there are different ones out there. It has really helped and I haven’t had one mouth ulcer since the switch.

Corsydil mouthwash is also good.

Good luck

[Elsp1925]

Hi, sorry to read you’re in pain. My dentist recommended Gengigel to me and it really helped, it coats the mouth and gums. Best wishes.

[thejoannabell]

I had to discontinue Caelyx after two treatments due to severe mouth/throat ulcers as well as skin issues. I had to get IV fluids because I was barely able to even drink water. The mouth issues cleared up in about a week, but the skin peeling and blistering dragged on a bit longer. It seemed like nothing really helped with the mouth pain, it was truly miserable as you say. I hope yours gets better soon!

[Leniko]

Mouth ulcers are horrible and painful. I used glyoxide to make mine feel better. Wondering if probiotics may help…..Your Onco should be consulted. Good luck.