Dry Mouth / excessive thirst

Thank you sturit 69

Hi there

I have had the dry mouth and incessant thirst which also  linked in  with a sore tongue.  I too was eating soft food and drinking copious amounts of iced water.  My feet were also terribly cracked and sore. I talked to my consultant about it and he reduced my Axitinib from 7mg twice daily down to 3mg for two weeks then up to 5mg where i think he will keep me apparently without effecting my treatment as  I was stable with few side effects at that level before. 
Now after a month on 5mg twice daily my feet are so much better and though still thirsty it’s not as intense and my mouth is no longer dry and sore. I was also put on a high dose of vitamineB6 (Pyradoxine 150mg three times a day) apparently this can help and I do believe it has done. .

It was interesting to read how we seem to pop in and out of the group and yes I am guilty if that too, I think I try to get on with things and then something happens or I read something and just need to catch up with and talk to folk in the same boat that really understand.

big hugs to you all and ….well hope your weekend is as good as it can be.

take care,

squidgy hugs (Trish)

Hi squirt hug. Unfortunately like you I am suffering from terrible dry mouth and incessant dry mouth. I also  have really dry and cracked skin. Being diabetic is obviously a real concern when your feet get damaged, I also have a terrible sore on top of my foot which is being treated With antibiotics, I was discharged from hospital on 29th july recovering from diverticulitis.

On 4th august had outpatient appointment with oncologist. I had a fall on 2nd and 3rd August. My sore foot just gave way. The consultant decided I needed to come off my cancer drugs Apaxaban 5mg and AXITINIB 5mg both twice daily for a month. He did a few tests and decided I needed to be admitted again for observation. To be honest my confidence is shot and I don’t feel safe at home.

the hospital have given me nystan for my dry mouth which has helped a bit. I will mention the pyradoxine to my doctor tomorrow. Hugs to you and thanks for helpful advice  

Hello .. I have had cracked heels too. Been to chiropodist .  Had a break from treatment for 2 weeks then back on for 2 weeks when  Covid set in so off all treatment and to anti viral drugs for 5 days .  Am in Axitinab 2mg twice daily . Lowest dose as I react badly, also on immunotherapy- Avelimab - every 2 weeks. Met with oncologist on 1st Aug. Started me back on tablets but not immunotherapy  .  Had CT scan on 6th.  See oncologist on 15th for results.  Discussing options whether to continue with both or stop tablets which are causing awful scalp dermatitis as well.  Using all the recommended stuff for sensitive scalp and skin.  I have advanced secondary renal cancer which has gone to my lung.  Had kidney and tumour removed in 2012.  Returned to my lung Sept, 2020. Has keyhole surgery but the nodules grew back so on immunotherapy and tablets.  Not a cure . But keeps it stable hopefully.  
Take care.  Love and hugs. 

Jeanne 

Hi Gooner, oh you are going through a tough time and so hard when your home doesn’t feel safe. Maybe you could ask for an OT assessment to see what adaptions/ aids could be put in to help you and rebuild your confidence. Also mention the vitamine B6  I did however mis quoted the dosage…its 100mg three times a day …it really seems to have helped me.

Hope things take a turn for the better for you .

take care xxx

Hi Peaceflower, so it’s scanxiety time for you waiting for the CT results it’s very hard and your brain does somersaults over thinking things, my next CT is in September, it doesn’t seem to get any easier . I hope the consultant gives you a smoother pathway. I am on fortnightly Avelumap and twice daily Axitinib 5mg with monthly Denusomap injections 

Did you find the chiropodist a help? I have been thinking about it now the soreness has got better as still left with dry skin. 

Hey ho we are travelling a road that no one ever wants to travel but at least we aren’t alone.

Take care, big hugs

Trish xx

 No not easy road . Lots of hills and bumps .  Scan in November showed the nodule had shrunk to half size. 8 weeks after treatment started. Feb scan showed it was stable.  See what happens on 15th when see consultant.  Back on immunotherapy ??  Do you have bad side effects from axitinib . Since restarting on Tuesday , after 4 week break , side effects restarted. Awful mucus, taste gone , one sided sore throat. Scalp dermatitis ongoing. Yes, chiropodist got rid of very dry cracked heels and rough skin. He was v careful as am immunosuppressant.  Gave me a tip: before going to bed : smother heels in Vaseline , wrap in cling film , and put a pair of socks on - not tried but maybe tonight. Softens skin apparently. 
Good to chat . Take care. Big hugs. 
Jeanne xx

Before the reduction I had  side effects , sore tongue, sore mouth , rash,  sore cracked feet , muscle and joint pain. All seem to be subsiding now except for the hip pain …..just on 5mg not the 7mg now. Though I have just started with an itchy scalp so going to soak my hair and scalp in coconut oil . I was a bit like a hamster on a tread mill just keeping on going till the consultant called stop and have a reduction.
Ha ha I have tried the cling film and Vaseline with some spa socks on over the top ….it was fine to start off with but later in the night the cling film slipped down and I was flopping my socks around with this slimy clingfilmy thing in front of my toes …..so yes it can work so long as you do a better job than I did in securing the cling film round your foot . I now smother my feet in foot cream and put on some spa socks as they seem to stay on better in the night.

I might try the chiropodist now but before my feet looked like they had been attacked with a stanly knife and were so sore that anyone could look but never ever  touch .  I have gone through just about every foot cream that there is , the best were, Vaseline for that instant effect and over night soaking , for day time use and to stop slip sliding everywhere I have been using   Udderly Smooth and O’Keefe’s foot cream. (flip flops and Vaseline = A&E  !)  .

i found that children’s tooth paste helped with my sore mouth and is less claggy than our usual one so helped with the mucus oh  and lots of iced water  with a touch of fresh lemon if you can tolerate it.

My  main problem at the moment is hip pain and it’s getting me down as have gone from walking long distance to hobbling short distances but at least I’m here to do a wobbly hobble. 

Take care and hope all goes as well as possible with your results.

big hugs

Trish.  Xx

I had those side effects too and wobbly at times and seeing black spots, awful stomach cramps too.  reduced from 10 mg to 6mg after 7 weeks, Now on 4mg since March ….then the scalp thing started . My main discomfort now.  Oncologist given me options now - am on tablets only at mo. Can stop these. Continue with both or just immunotherapy . It’s Stage 4 advanced cancer. 
is your hip pain side effects, I have joint pains but walk every day for 30 mins.  Now I have ache left side of neck!! Don’t know if it’s posture related,  am tempted to see osteopath but may wait for scan results.  She’s v good, diagnosed my fibromyalgia 3 years ago ago as GP kept saying it was arthritis,  I was in agony.  Suggested I have blood tests for it  and  bingo she was right! Take steroids for it. 
Love 

Jeanne

Hello Trish. I had my first treatment cycle on 27th July 2022. Up until then I had been feeling pretty normal, although according to the CT scan I'm a very sick Man.

I was further made aware of that when on two occasions I gushed a tsunami of blood when having a pee. I feel for you Trish with the horrible list of side effects you've had to cope with. I'm just starting out on my treatment journey so still not sure what I'm in for with side effects in the long term.

I've had nighttime dry mouth since before I started treatment and am in the habit of keeping a drink beside the bed. After the treatment I lost my appetite, lost weight, got hives, couldn't sleep at night and lost the will to get out of bed in the morning. Loadsa depression!

My partner and children were very concerned. My partner suggested an anti histamine for the hives and hey presto! The hives started calming down the next day. I got some of my energy back by guzzling Lucozade and drinking Complain. My daughter visited today and we had a really good day doing the shops and practicing golf with plastic balls in my back garden. So starting to live a little again.

Got a fridge full of Lucozade now and my second cycle of treatment is on 19th August 2022. Side effects so far are manageable. I hope it continues like this. I sincerely hope you find some relief from your's Trish. Good Luck and Best Wishes XX