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I have managed to solve the eating problem after treatment and do not need my PEG anymore,hurray! though the doctors want to keep it in until our next appointment in a few weeks time. Now I wonder about my sore mouth. I did not suffer from it much during treatment ,which ended on the 3rd of August, but I do now. It stings or burn every time I eat unless I have a lot of mild liquid with my food. The side of my face also feels numb and stiff, and I can't open my mouth as well as before... And what about the lack of saliva: does it come back after a while or not , for you all? I wonder how long that will last? What a list! Take care, everybody.
Hi Sandra, Well done for reaching that milestone. In my case both the sore mouth and the saliva are improving over time. My mouth is now only slightly sore and I finished my RT and chemo at the end of March. The saliva is also better although not back to normal. I have a numb face and the restricted mouth opening following my neck dissection bit that too is slowly getting easier. I hope thats a bit re-assuring !! All the best.
Hello Sandra. Well done on solving your eating problem, so here's to the PEG being removed soon ! Right, the sore mouth is most likely the late effects from the radiotherapy ( I developed mucositis ulceration which was quite painful ) however, if your mouth is dry then it can feel like it's burning. It's hard to say what it may be as everyone gets different reactions from the treatments and they can kick in at different times ....... some of mine were well after the RT finished.
My face / neck was stiff and numb ( still is to a point ) and opening your mouth should get better with time ...... try some gentle exercises. The saliva may come back, again with time - but it does depend on where the radiotherapy beams were aimed. In my case, it was the floor of my mouth and my neck that was the treatment field but I do have a little saliva again - although not enough to eat dry foods.
For a sore mouth I initially used Difflam rinse but now I find a wam mild salt rinse is soothing - you can also try soluble paracetamols as they coat the mouth better than the normal pills. Have a word with the doctor about it next time you go as they may suggest something for you to try - otherwise it's just a matter of time, I'm afraid. Keep your chin up, it does get better.
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Thank you Jon, as it IS reassuring. You ended your treatment 4 months before me, so I have to be patient... We have exactly the same side-effects so I will think of you , feeling a little less like like a freak! hopefully , you will always be ahead of me and soon free from all of them. You have given me hope, thank you again. Good luck
Thank you Joycee. All I need to know is that it does get better, and hopefully not in too long a time. I can do without painkillers, but just long for my normal self again, albeit somewhat altered, I know. Good luck, I know that you have had it tough.
Hi Joycee I also suffer from mucositis, and have done from the start. It is not too bad but still there and adds to the pain when I eat. How long did you have it for? Did it just go on its own? Thanks
Hello Sandra. I am sorry that you are also suffering from the mucositis as it can be very painful, I had it for a long time and to a degree I can still have a sore tongue even now after four years. In theory it should start to heal after the treatments are finished, but I got a particularly bad reaction to the radiation and had to be admitted to the hospital at the end of RT.
Please don't feel despondent though as it should start to get better, the time depends on how bad it affected you and how your own body copes with it all. There's not much can be done other than have good oral hygiene and use Difflam rinse if it is really sore ...... some people reckon Caphosol can help relieve the symptoms, but I didn't try it as it's very expensive. Don't forget the warm mild salt rinses as they can be soothing and cleansing, hope it feels better soon.
Thank you Joycee I have tried the warm salty water and it does help a lot. Take care xxx
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