Hi Kezza, 

I'm sorry that your husband's cancer has spread but we'll have our fingers crossed that the next treatment is more successful. We have some information about the side effects of nivolumab just here but I'm sure some of our members will pop by soon to share their experience and advice.

Our cancer nurses are available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m if you'd like to speak with them about this as well.

Best wishes to you both,

Steph, Cancer Chat Moderator

Hi,hubby was on nivolumab he has kidney cancer stage 4 the major side effect he had was high temp dont be afraid to contact your immunotherapy team for even the slightest change in him (once i noticed he had very jerky movements turns out it was high potassium levels the clinic sorted it out) he was on it for 4 months, he did loose a lot of weight but the tumors in his lungs did shrink slightly, he now been put on Pazopanib (votrient) immunotherapy tablets since February 2020 (did effect his thyroid gland but 2 thyroxine tablets a day and that was cured) he has improved better than he has been for over a year, taking less painkillers, eating,drinking I have to pinch myself to take in how good he is now.

I know that the treatment is to slow down the spread of the cancer not to clear it, he had a ct scan on the 23rd of June we are due to have the result on the 21st of July no rush as he is having a good quality of life, never give up enjoy each day, and if one immunotherapy treatment doesnt work there are always others, best of luck filling in the diary it is helpfull when you look back take care.

oh thankyou so much for replying that sounds very positive im hoping richard has good results from the immunotherapy too and we can enjoy making memories with our baby girl x

Enjoy the good times, I would stress if you notice anything no matter how small check with the clinic, the sooner they know the sooner it is sorted out, best of luck you will have dark days but I can honestly say the last 4-5 months have been great x

Hi Kezza

Hope you and your husband are well. I was wondering how he is getting on with the immunotherapy?

I ask because my husband has advanced stomach cancer and immunotherapy ( probabaly Nivomulab or Pembrolizumab) may be his last chance. We are having to look at it as a private option because he has poor kidney function and therefore does not meet the criteria for either any trials or treament with the NHS. I ma interested to hear that your husband was having therapy due to kidney cancer and so i am thinking that having kidney problems doesnt seem in your case to have prevented him from having immunotherapy? My husband has stage 4 kidney disease and so his gfr wavers around 25. Id be really grateful for any infromation you might be able to share.

Best wishes

Hi, hubby diagnosed in May 2019 with advanced kidney cancer had kidney removed June 2019 been on pazopanib 800mg a day since February 2020 very few side effects kidney function slightly low I was told it was because he had only one kidney. last scan showed that the treatment has stopped working and his next treatment is Cabozantinib should start next Tuesday

 Hope this helps feel free to ask me anything x

Hi thanks for your speedy reply. Thats really useful thankyou. I wonder if they changed him from Nivolumab to the next therapy he recevied due to some of the kidney related issues you describe such as high potassium levels. But interesting that they were happy to give nivolumab a try with just one kidney. we are beng told  that my husband cant have it becasue his kidney function needs to be at 40gfr ( under Nice guidance) so would be interested to know what your husbands level is if you know? no worries if not i think what you describe will help me to reseach a little further.... and the other drugs you mentions. thanks for any info you can share.... its a tumultous journey isnt it and takes a major effort to keep on top of the treatment regimeand often having to push for the right care. it sounds like you haae a good team that is willinging to keep trying and working with you though.

best wishes

Hi Farmerjoe22, I don't know his kidney function levels (but will ask on next meeting) I know he can't

have the dye when he has a ct scan as it can damage his healthy kidney, I just hope on Tuesday that he can start the new treatment will let you know

Keep safe 

Hi there

thankyou thats all really helpful. look forward to hearing from you again and best wishes wth everything

Well today hubby starts the Cabozantinib (cabometyx) 40mg after seeing the specialist on Tuesday they needed to check his bloods before he could start and the hospital pharmacy delivered them  today so take it that all blood levels were ok,  he is going to have radiotherapy on his hip next Wednesday  to try and shrink or slow the growth down there.

I'm hoping that he doesn't get any new side effects, as I have got anti sickness tablets, anti diarrhoea, cream for feet, lactulose for constipation, and allergy cream for any rashes ‍♀️

I'll keep you up dated just take one day at a time.,we are all doing our best to care for our loved one