Dry mouth, sore tongue

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Val has spoken with her ocon since having her CT Scan on 10th, but this time he didn't venture any opinion as to the results, only saying that he would wait for the Radiologist's report before letting her know. That said, she is currently suffering with a dry mouth. She was given a prescription of a mouthwash and Nystan for thrush but mouth feeling worse and feeling dizzy, so she's thinking of stopping her prescription until speaking with her oncon when he comes back with the results. I've seen you mention problems with a dry mouth previously, but can't find it - do you have any advice?

Of course, like everyone else, we looking for any good news, but one noticeable difference since her treatment is the location of her 'belly button' - before we had a cancer diagnosis, it was noticeably off-centre, it has now gone back to where it should be! Surely, it can't be that her tumour is reducing!!

We live in hope ;-)

Best Wishes, Ron and Val.

Mmum over 2 years ago

Hiya

Yeah dry mouth is a side effect of nivo, or ipi, or both. I haven't found anything that helps. I've tried:

Xylimelts (amazon 4 pack trial is £1)

Oralieve dry mouth relief gel

Glandosane synthetic saliva spray (prescription from Dr)

Dry mouth mouthwash - biotene or bioxtra are the main two

Salivix "sweets" for saliva stimulation or similar

This is what I posted when I was trialling the pharmacy which I suspect is what you remember seeing. When it started I was just so so so thirsty. I was drinking every 5 minutes and waking up in the night. It's calmed down now and I can manage up to about an hour without water. I just always have water with me now. Some dry foods are a real problem/challenge like buscuits, sandwiches, pastry and just forget crisps and nuts.

I got all my ideas from the head and neck group because they suffer big time with dry mouth due to radiotherapy. If you go to that link and put in "dry mouth" in the search box at the top you should be able to read all their experiences and remedies, although "wait-a-bit" is a frequent solution (for them)!

Bodger23 over 2 years ago in reply to Mmum

Thanks Mumm

you're so kind to take the time to offer the benefit of your own experience. With Val, just knowing that this is a common reaction to Ipi/Nivo is reassuring.

Best Wishes, Ron and Val.

hhist over 2 years ago

Hi Ron, sorry I got confused and thought Val was on Cabo?

Humidifiers overnight work great for a dry mouth/nose/throat too. Also Maalox swished around the mouth.

Bodger23 over 2 years ago in reply to hhist

Hello hhist

We'll give Maalox a try, thank you. After her previous CT scan, Val's oncon told her that her ipi/nivo treatment wasn't working and that he was going to put her on Cabo. The following morning, he phoned back and told her that he had made a mistake and that the radiologist had told him that her treatment WAS working. Such is life ;-)

He moved her on to Nivo ONLY, and Val had her latest CT scan on the 10th December, and we are waiting for the results. Mumm has been very helpful, also one of the moderators from MacMillan suggested salt water mouth rinses, which has helped a lot, so we will see how it goes.

Many Thanks Ron and Val.

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