Dry Mouth / excessive thirst

Hi Mmum,

 I like you have a dry mouth and my chemo team advised that I suck sugar free sweets and the GP gives me artificial saliva, when it was very bad I did have glasses of water and a bowl to swill around my mouth and spit it out, which was alright when I was at home but I have the sweets and saliva spray when out and about.

my dentist did say that without saliva there is a chance that the teeth can suffer with decay, so we must keep our mouths wet, mine was actually worse when I was on a fluid diet I was only aloud one and a half litres a day.

 I now also have a mouth wash which works at night keeping my mouth fresh and wet until I fall asleep, I don’t think people realise how uncomfortable it makes you, when you have to have others talk for you because your mouth is so dry, I hope you get some relief soon keep asking your GP and chemo team for help.

Sandy x

Hi,

I too am suffering with dry mouth and have the pastilles which are of limited benefit. Could you let us know which mouth wash you have and whether it;s a prescription one? Mmum - my spcialist nurses prescribed my pastilles for me - they are a bit easier to get hold of than the gp

Hi  

Yes my dentist sold the mouthwash to me it is Fluorigard by Colgate it is alcohol free and does not contain SLS same as the toothpaste he told me about as others containing SLS really upset my mouth and can sometimes burn the mouth where they are stronger, I also have mouthwash from my chemo team for mouth ulcers that is called Martapan oral solution 2mg/5ml it is Dexamethasone this one the hospital pharmacist provided but the others you can get from any chemist, I hope they help you both Sandy x

Hi - now have a prescription for Glandosane from my GP.  It's a saliva replacement thing.  Will update in due course!  

Hi Mmum,

Yes I have this replacement saliva, I have found it alright for a short while I use mine when I am out, I also carry a bit of water with me also just too put some fluid in my mouth, the problem I have is if I am talking that’s when my mouth gets dry, I hope it helps you keep us informed best of luck Sandy x

Hi I am really suffering with a very dry tongue. Having so much trouble just swallowing. Am using corsodyl and adult bonjela. Only eating soft food like mashed potatoes as everything else just so hard to swallow. The skin inside my mouth has split in two places so using bonjela there and mouthwash everywhere else. I hope that both of us get some relief soon. Regards Aileen xx

Hi Aileen,

Mine is getting a bit better I did have my tongue sticking to my teeth and mouth most uncomfortable, I have had mouthwash from the chemo team, the saliva spray from my GP and other bits from my dentist, the only problem now is I have a mouth ulcer which is my own fault because I bit my cheek while eating, my dentist told me it would take a lot longer to hear because of my medication, than my oncologist said I would have to stop treatment if it doesn’t heal, so I am eating only soft food like you as I don’t want to stop treatment again, is there anything your team can give you for your mouth and the swallowing, I know when you can’t swallow it does really frighten you and when you keep trying until your body does it for you what a relief, I hope we both get over this quickly and everyone else and enjoy life again.

love Sandy xx

Hi . I had the dry mouth , sore gums etc but seems to have settled . Used mouth washes, brushed teeth after each meal. Left side of throat was sore for months .  Saw GP to make sure there was no infection.  Was eventually told it was a side effect.  Had 6 week break from axtinib and after 3 days sore throat  disappeared and not back - restarted tablets a week ago.  Taste buds not good .  Has anyone experienced scalp dermatitis - another side effect,  mine started in March with severe itching and awful dandruff.  Putting beta cap lotion prescribed by GP and using TGel shampoo.  Not itching now but dandruff is very bad- like thick cradle cap - lots of clusters and patches.  Very embarrassing - if shake my head it’s like a snowstorm ! See GP tomorrow for check up.  

Hi Peaceflower,

 I am on Everolimus and Lenvatinib I do have dry mouth and very flaky skin but not on my head, I was on Cabozantinib and I lost my taste buds for two years, now with my new treatment they have come back, the only problem there is I am eating everything in sight, I hope your GP can help with dandruff I am using so much cream on my body I hope it will do some good as like you when I get undressed it is like a snow storm.

Take care Sandy x

Hi Sandra ,

is your treatment immunotherapy and how long have you been on it ?  I have been since Sept 2121.  Axitinib tablets daily and avulamab IV every two weeks.  Get extremely tired some days and need a nap most days!  Always have my daily walk - 30 mins and same round house and garden.  Keep active and socialise a lot which does help.

best wishes.