Hi.
About three years ago I was dignosed with Non-Hodgkinsons 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 suppliment my food intake with cuppa soups with the vegetables and crutons 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 recomended to get some sugar free chewing gum to help stimulate sylava, 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 efeective 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.
Hi PubSpy151f03 and a very warm welcome to the Macmillan Community but sorry to hear about your diagnosis and the challenges you are dealing with.
I have lived with and been treated for my 2 rare types of T-Cell Non Hodgkin’s Lymphomas for over 25 years …… but I have not had these problems.
I could only imagine that navigating a palliative journey can be such a stressful and challenging time but getting support from people who have walked or are walking the ‘exact same' journey can help a lot.
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated…..
Living with incurable cancer - incurable patients only
…….. support group.
This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with the group please click on the link above……. and once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
Hi PubSpy151f03
Dry mouth is a side effect of radiotherapy to the head and neck leading to destruction of the submandibular salivary glands. It’s a problem many of my fellow patients in the heaf and neck forum face daily. You seem to have tried everything. Ask your doctor whether pilocarpine might give you some relief. It stimulates salivary production and is used off label for cancer. Best of luck.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
