CLL Support Association
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Sore mouth and tongue

Diagnosed CLL 2009 then needed the full chemo FCR 2010. Hospitalised twice afterwards with a chest fungal infection but since then,3 years + down the line, my bloods have been satisfactory.My Haematologist even put me on 6 month visits this April !

Good news but over 3 months ago i started with a sore mouth and tongue and asked my dentist to check it out on a routine visit,she could not see any dental problem and suggested a certain mouthwash and see my GP if it continued ,as maybe an infection.

It did continue and felt worse,affecting my eating and drinking so went to GP. Two visits later,2doctors and the problem continues.They could not see an obvious problem but prescribed NYSTAN oral drops with a painkilling mouthwash.

My next consultant visit is 4 weeks away.Anybody else had this problem so long after chemo ?

14 Replies

Sorry to hear about your sore mouth problem. I can't say I've had this however I was warned about mouth problems at the start of my FCR. The team said if you do get problems rinse out with a saline solution, it is good. Don't use commercial mouth washes as they are strong and will take away the coating. I subsequently tested this and you can sure tell the difference after using them - surfaces seem almost 'dry' after using a mouthwash.

Sorry I cant help more, rob


thanks for your reply Oleboyredw.Never would have thought of that but eating even soft food and warm liquids is very painful.Will give saline a go as soon as i can .thanks again


NP, sorry cant remember the mix, but I'm sure your team could answer.



Hi ,

My wife Jan has had sore mouth , on and off over the last few years.

We put it down to low ig levels and also neuts low.

Do you receive ivig?

Jan receives them every three weeks and it seems to help.

Ig's are your first protection from infection.

Also its best to get a prescribed mouth wash. Its called BMX mouth wash here in Ireland.

This mouth wash would give relief as the over the counter mouth washes were no help.

I hope you get sorted.


1 like

Michael thanks for responding.Never heard of that treatment or Ivig itself but seeing my consultant in eariy October so will mention to her. thanks again Bob


Hi. I've found natural yogurt to be good. I have a similar history to you- FDR and Retux 3 years ago . Bloods still good now and on 6 monthly checks also. Life is good!!!


Hi Donegal

We are in Dublin and Jans doc is Patrick Thornton in The Hermitage and Beaumont hospital.

Good to hear you are doing well



Hi Michael. What part of Ireland are you in or which hospital does Jan attend?



Jan always knows one of them is low when she gets mouth sores.

Her ig levels are very low since dx.

Brian Koffman has a lot of information on his blog.

I hope it improves soon.



I found brushing my teeth with bi-carbonate of soda helps. Also my CLL nurse at the hospital reckoned that patients who ate fresh pineapple (liquidised presumably) had much less mouth soreness than patients who didn't. Pineapple and bananas contain high potassium so maybe it's that that makes a difference. Having a sore mouth is one of those niggly CLL chronic symptoms that grind you down.


thanks Molly its certainly grinding me down after several months and 4 years from chemo.Thought i was doing well considering !

thankyou also to Donegal for responding



I had a friend a few years ago who suffered mucositis during treatment for a rare stomach cancer. She claimed relief from Camomile Tea. I believe she said there was a difference in the kind of camomile used but since I never had the problem and due to the lapse in time, I have have forgotten the details.



I started to get some mouth sores during and after FRP treatment a year ago. For me, glutamine powder worked well and prevented any more problems. Could be worth a try as it's OTC at many health stores or online.

Hope you get better... those sores are no fun!


thanks to all for your comments and suggestions.regards Bob


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