Dry Mouth / excessive thirst

Morning Peaceflower,

 I am on immunotherapy and chemo tablets, I started in May 2020 on Nivolumab infusion which I was on for five months, it actually shrunk my lung turmors but the kidney cancer was still growing, that’s when I went on the cabozantinib tablet in October 2020 which I was on for fifteen months before it spread to my liver, so now I am on three tablets a day which are targeted for my kidney and liver, I am due my three monthly scan in July to see if this new treatment is working fingers crossed, if you want to read my story if you click on to my picture I have not updated it yet with new treatment, but it does explain my journey.

sending hugs and best wishes to you Sandy x

Hi Sandra 

have read your full story.  So sorry to hear.  Mine too is Metastatic renal carcinoma ,Stage 4.  As mentioned previously it started in 2012, With removal of right kidney and huge tumour .  Had no symptoms whatsoever . Just happened to feel a slight bump on my stomach.  All ok. Felt fine . Had 6 monthly scans and was signed off after 4 years. Then routine X-ray on chest in Sept. 2020 showed lesion on my lung which was cancerous.  Cancer back after 8.5 years ??!!  Had keyhole surgery but it grew back 6 months later.  Very grateful to NHS for this treatment at my age.  It’s last chance for survival - hope few years . Lesion shrunk after 2 sessions of immunotherapy then stable at scan in Feb.  Next scan 6 weeks time.   
Take care and bug hugs to you.  

Update . . . . 

The constant excessive thirst has receded (yay!) but now I have a sticky mouth or dry lips.  A 10 minute conversation brings on the symptoms big time now and eating bread, crackers, cake and biscuits is a problem.  I'm struggling through a packet of choc biscuits right now so they can be finished.  But I'm having to clean my teeth and gums frequently after eating.  

I tried all these dry mouth relief products:  

Oralieve Dry mouth relief, moisturising mouth gel

Oracoat Xylimelts

BioXtra mouthwash for dry mouth

Glandosane spray

Salivix lozenges

I'm not convinced any of them are helping.  I'm still carrying water with me everywhere but taking the odd mouthful rather than the gulping quantities from before.  

I'm on the verge of stopping eating bread - it's not worth the effort!  Anyone got any tips to replace it with?  Or anyone else  taken this path?  

Hi Sandra 55. Have just clicked on your photo and read your journey. Bless.you. You really have been through a very harrowing time. I first got kidney cancer in 2005. Completely recovered for 17 years then debaulking surgery March this year followed by 5 radiotherapy sessions and now on a course of infusion  which I am struggling with. Ended up with ulcers which only allowed soft food etc as so painful to swallow. Also been in hospital for a week with diverticulitis but being discharged this morning. I wish everyone well and hopefully more quality time. Mine isn’t curable but will soldier on and try to be positive. Hugs to you all and take care xx

Hi Gooner, me just butting into everyone else's converstation. Can any of you guys give me a clue as to including a photo in your profile please. It seems rather a pleasant way to share eachother. However not everyone wants their pictures included.

I have noted how "our" community is suddenly quiet for a while and then bursts with views and activities and l think this is how our lives reflect what is happening with us and our families.

Personally l have gone backwsrds in my mobility and where, after GEM/CIS chemo finished in Jan '22, l was walking 4-5 miles a day.! I am now struggling to walk a mile or so. Does it get worse before it improves, is my question?

The other problem which l suppose is associated with my fatigue is water retention in legs. They literally ooze "watrr" after a long day. Just started diuretics about 5 days ago and hoping that work Ironically the DR says drink more watser with the tabs. So :- take the diuretics to wee more and get rid of excess water AND drink more water to help "get rid of the water'. A bit of an oxymoron the Good to be in touch again, Erchie, Goone, Mmum, Sandy, Peaceflower. Friends names off the top of my head. Apologies to you if l have missed your name. Love to you ALL. Adrian

Morning Mmum,

 I am really feeling for you right now I had too eat very soft food for a few months, I did find cutting the crusts of my bread and having a drink with my sandwich did help to swallow it, it did take a long time to eat, my mouth ulcers were a problem but that seems to have settled down now, I like you have had water, mouthwash and sprays to moisten my mouth I also had to change my bread I used to eat granary bread with seeds and crumpets, which I have trouble with so I  am eating soft rolls and white bread which I have not eaten for years, it has been four months now and I think it is getting better it seems to be at night my mouth is very dry so I have a drink of water to wet my mouth and than spit it out as I was on a fluid diet for two months because I was drinking too much and it was affecting my sodium level, but that is a whole new story I am not sure what you can change bread for as all bread products are very dry, I soak mine in soup, I hope it gets a bit better for you as it did stop me going out to eat as I don’t think they would of liked me spitting water into a glass like I did at home take care sending love and hugs to you Sandy xx

Morning Gooner,

So sorry to hear you have been in hospital again have they cleared you diverticulitis, how about your mouth ulcers did they help you with them, I think mine have cleared for now I am still eating soft foods but my dry mouth is getting better it only plays up during the night, so I get up and wash my mouth with water or mouth wash and spit it out, I had my scan Tuesday and my oncologist is phoning me on the 4th August I hope he has my results than but I won’t be holding my breath as it seems to take so long to get them, so I will be worrying until I get them hope everyone else is feeling and keeping well love and hugs Sandy xx

Hi Adrian,

 I know what you mean we seem to have quite spells and than we all start talking again, I do believe we are all thinking about all our friends on this site, I think we all need reassurance now and than I know life does get in the way, I am not sure about excise and walking at the moment I am having to walk with a walking stick so cannot walk every day like we use too as my arthritic knee is playing up, but we are still getting out I see my physio twice a month and have leg exercises to do, but I am still on treatment so not sure maybe someone else can help answer your question, I am not sure how to put pictures on I only did mine by accident not sure how I did it stay positive I am sending you hugs and love Sandy xx

Hi Sandra they decided not to operate so being sent home on yet more antibiotics. Unfortunately I missed another infusion session. My husband rang them to cancel then a chap from chemo came. Up looking for me. Ulcers are better and am able to eat but dreading next time because it caused me so much pain and discomfort. Wishing you all the best for the 4th august xx

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