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

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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 25 days 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 24 days 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 24 days 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 24 days 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.

Mmum 21 days ago

I am so sorry to read your story. I had a dry mouth after an adverse reaction to my immunotherapy. I managed it for a while, and became inseparable from my water bottle. But as the weeks went on I got very frustrated with it and tried all the items you mentioned, and more.

As head and neck people get this as a side effect from their RT treatment, I was frequently camped in their group reading their stories. There is stronger medication available to them, and as you've had the radiotherapy I would think your team might be able to provide something stronger than what you've tried over-the-counter?

Oralieve,Savilix, etc are just off-the-shelf medication and I'm not sure whether they helped me or not. The best remedy for me was Xylimelts, a "disc" (tablet-like) you placed on your cheek, and it relieved the dry mouth, stimulate saliva production etc. Got that one from the Head and Neck people. I definitely wrote on here somewhere, all the things I tried. Can't find it, now. But none were game changing. I'll have a search and see if I can find it once I've posted this.

Mine went away or improved, either through time, or through a trial vaccine (Modi-1) I went on. But it was months.

Mmum 21 days ago in reply to Mmum

Found some stuff that jogged my memory, Biotene mouth wash or Oral 7 mouth spray.

THis is the blog I was looking for Incessant Thirst

PubSpy151f03 21 days ago in reply to Mmum

Thank you very much for your reply to my post, and for suggesting Xylimelts. I'll mention it to my McMillan Nurse tomorrow, and ask if she can get a prescripion from the doctor.

PubSpy151f03 21 days ago in reply to Mmum

Thank you very much for the further suggestions. Again, I'll have a word with my MacMillan Nurse tomorrow.

Gilpat 20 days ago

Hi PubSpy, sorry to read about your problems though they should be temporary albeit long-winded. As Mmum indicated, I also encourage you to visit the head and neck group where nearly everyone has similar experience and will be able to help you. I had saliva problems after 33 RT sessions to my larynx but mine was a thick saliva problem that went away eventually. You can get loads of calories into your body with liquids. I was advised to drink coke, coffee with sugar etc. If you are having serious weight loss issues, you would have to consider having a PEG tube inserted to get you through. It will get better though you might not be able to appreciate that now. All the best

Patrick xx

PubSpy151f03 19 days ago in reply to Gilpat

Thank you very much for your supportive and encouraging comments.

I have certainly lost weight, but I try and force a Complan and Fortisip down me on a daily basis to ensure I get some calories into my body.

I did join the head and neck group when I joined this group.