Nivolumab keeping my cancer stable

  • 6 replies
  • 49 subscribers

I had a fairly difficult year last year as my previous treatment slowly lost control of my cancer which slowly spread to several more places.  As I have capillery renal cell cancer I know that this is a more aggressive and rare type of cancer.  As my consultant stated at the start of my treatment this is a bit harder to treat as not so much research has been done on it as yet. 

I have now been on the Immunetherapy drug Nivolumab for 6 six months and is seems to be keeping my cancer stable and even reduced some of the cancer in my shoulder blade.  The treatment has caused some inflammation in my lungs which has improved from the scan I had in November to the one I have just had in February.  Another side effect is a nasty rash on my arms and chest but with the cream prescribed by my doctors it has stopped itching.

I take each day as it comes and feel a bit more hopeful with this treatment.

Take care


  • Nice to hear good news from the rare cancers.  I'm pleased Nivo is doing its stuff. Long may it continue. 

  • Thanks for replying.  I have been on this site since 2021 and have had a few set backs but hoping 2024 will be a better year.  Hope that everything goes well for you. Reading other peoples stories gives me hope for the future.

    Take care


  • You have done great Betty , well done . What did they stage your cancer on diagnosis as it seems gross haematuria mostly seems to put you right into stage 4 .

  • To start with my Consultant said my tumour was a T1b as 6cms. However after my operation my biopsy results were T1b type 2 papillary renal cell carcinoma grade 4. Quite an aggressive cancer but I'm not ready to give up yet.  Lots of new treatments are coming out all the time.

    I'm sorry you feel so anxious but quite normal. Everyvtime I go for scan results I get very anxious as always prepare for the worst. 

    I did have some counselling for awhile which gave me some coping strategies. Listening to music helps me a lot. 

    Hopefully when you do go for your results next week the results won't be as bad as you are expecting. Take care and know that we will be thinking of you.


  • Hi Betty123

    I was on Novilumab for just over a year. It stabilised my cancer, and this has continued, even though I stopped having the drug last August. I have regular scans to monitor the situation. So far so good! Hope it continues to work for you too.


  • Thanks for replying. Been for treatment today & my cancer unit that I go to is extending its hours as they have so many patients needing treatment. We are lucky that we have more treatments available now so there is more hope for the future. Take care and though I read you have stopped treatment, hoping you get many more days to enjoy your life.

    Heart️ Betty