Help with severe 'Dry Mouth' after upper-body radiotherapy

4 replies
22 subscribers
140 views

Hi everyone,

About three years ago I was diagnosed with Non-Hodgkin Lymphoma, and have undergone radiotherapy over the three years, and chemotherapy this year. About two months ago I was told that the cancer is terminal, and that I probably only had a few weeks to live.

About nine weeks ago I had 10 days of radiotherapy, targeted at my upper body, to help me swallow and breath more easily. Unfortunately the radiotherapy left me with terrible mouth problems. Some of them have thankfully improved over the nine weeks, but unfortunately the Dry Mouth hasn't, and has gradually got worse.

I have not been able to eat solids for at least nine weeks, and I currently have a Complan milk shake every day, and a Fortisip drink. Neither of which I enjoy, and I can't fully taste them. I supplement my food intake with cuppa soups with the vegetables and croutons strained and thrown away. Once or twice a week I have a tin of tomato soup in a mug so that I can drink it.

I have been prescribed Oralieve Moisturising Mouth Spray, which burns my mouth. And Oralieve Moisturising Mouth Gel, which I use, but does not help with the problem, and just seems to coat my gums, inner cheeks, tongue etc.

I was recommended to get some sugar free chewing gum to help stimulate saliva, but spearmint and peppermint chewing gum just burns my mouth. Fruit flavoured gum just seems to react with my mouth, to the point that it breaks up and loses its consistency. I was prescribed some Salivix Dry mouth relief pastilles, but they don't help much, and seem to have become less effective than when I was first prescribed them.

I suffer from the Dry Mouth 24 hours a day, with no respite from anything that I'm taking to try and ease it. It's a living hell, and I now wonder if having the radiotherapy on my upper body was worth having. If I knew what the outcome would be with Dry Mouth, I may well have considered refusing it.

Anyway, the situation is now what it is, and I'm now reaching out to the people on this forum to ask if you can, based on experience, suggest anything that might give me a bit of relief from the acute Dry Mouth situation.

Thank You.

Pepperpot 1 day ago

Hi, I'm afraid I don't have your experience re treatment and Cancer.But I'm sure you checked out Macmillan's own guidance on dry mouth following Radiotherapy.Have you tried the ice cubes? Or the rubbing Olive oil on your teeth and gums? Both sound like they might help.Im so sorry you're having such a difficult time...thinking of you x

Minmax 1 day ago

Hi Pub spy Something I would recommend it getting a blender like a ninja or stick blender , I had base of tongue cancer and had chemo and radio and couldn't eat and eventually had to have food through a tube in my nose , A very simple thing to make is 2 bananas blue berries , mango , milk , dates , ice-cream , I have this or similar most morning and its kept me alive for years. I had a major problems with spittle so it goes from one extreme to another one. You just have to try and adapt as best as possible , Small changes can make a massive difference , All the Best Minmax

PubSpy151f03 1 day ago in reply to Minmax

Thank you very much for the suggestion. Unfortunately at the moment my mouth rejects blended foods. I can only swallow liquids. I will keep it in mind for a future date if there is any improvement, but I'm begining to loose hope.

PubSpy151f03 13 hours ago in reply to Pepperpot

Thank you for your message.

Yes, I've checked out McMillan's guidance many times, and I spoke to the McMillan nurse yesterday. Not tried ice cubes, but I drink chiled water all-day. It has no effect on my dry mouth, but keeps me hydrated. I've not rubbed olive oil on my teeth and gums, so that is something to try.