Stage 4 Kidney Cancer, Combination Therapy-Nivolumab and Cabozantinib

Thank you for this. I met with the registrar last Friday. The brain (I had a craniotomy last November) is stable, a representative nodule on the lung had shrunk, as had the kidney tumor. So that was all very positive and the immunotherapy will continue, maybe into a second year. Eight sessions are already planned for this year. Like you I have similar sid3 effects. The itching/rash drives me wild sometimes, despite daily intensive moisturising. Diarrhoea is not too bad at present, seems to be transforming to constipation. Sore mouth likewise is a bit of an issue along with the headaches after the craniotomy. The registrar thinks I am coping well with toxicity levels. I will have my next scans CT and MRI in July with follow up at the end of that month. I hope the good news continues and also that your own treatment goes well. Take care.

Hi FNC 

I've been reading your story today, prompted by Carlo .  I'm struck by how similar our stories are.  I had a kidney removed in 2018, complete with 15cm growth.  All seemed clear until 2022, when a tumour was found in my brain.  I also got a 4 year prognosis (scary to be entering my last year of that timeframe.)

I've been on Nivolumab and now on Cabozantinib.  I am also on thyroxin.  Generally, I suffer from the same side effects.  

Bizarrely, I find that the best way to get energy is to go for a walk.  It's always hard to get going, but I feel better for it.  Diarrhea continues to be my main issue.  I can control it a bit by watching what I eat.  Eating out has consequences!  My love of a cooked breakfast has had to go. Porridge is a good option.  And my taste has changed, spice burns my mouth.  But most disappointing is that I no longer enjoy wine.

The cabozantinib has had the best results so far, with some good reductions in the size of my brain tumour.  More scan results next week.  As long as it is working, the side effects are manageable.

Hi  im glad the treatment seems to be having a positive effect. Can I ask how the brain tumour was found? I have scans but they only scan from the neck down. I had radical right nephrectomy June 2023 and left adrenalectomy Feb 2025 and rexent scan was clear. 

Hi Doris1984 

My scans were also from the neck down.

I contacted the doctor because I was feeling dizzy.  Various things were tried but had no effect.  It was 18 months later that I finally saw a doctor in person and a brain scan was organised.  It was added to an existing appointment, so the scan just took two minutes longer.

I'm told that metastasis in the brain is very unusual, so such scans are not standard.

It's good that your scans are clear. Long may that continue.

Aw bless you. Thanks for the quick reply. Trying to keep positive but thoughts take over sometimes. I have to be pleased that at the moment i seem to be free of the dreaded C . Good luck to you x

Hi, thanks for getting in touch and sharing your similar symptoms, for me diarrhoea is still the worst side effect with lack of energy some days. I’m experimenting with no dairy for a couple of weeks to see if that helps with the diarrhoea. Occasionally I too feel dizzy or light headed bUt have always put that down to the known side effects to the cancer combination therapy treatment. Wishing you all the best. Frank

I am expecting the results of a lung biopsy on Tuesday but this combined therapy has already been mentioned by my oncologist. Me being me had to go away and read up as much as I could about this and quite frankly it left me horrified. I had a radical nephrectomy in June 23 followed by a year of Pembro, with minimal side effects. Now have multiple nodules in both lungs but overall feel so well. The thought of experiencing what seems to be debilitating side effects for the rest of my, most likely shortened, life has made me seriously consider not having the treatment. A terrible thought for such a normally positive person. However reading all your positivity has really made me reconsider that. Thank you.

Hi. I also have nodules but on my thyroid which may have been from immunotherapy and they have told me nothing to worry about  maybe the same for your nodules too. The worse thing is to read too much but i also did. This page is better as you can get encouraging.messages from others in the same position. Mine was grade 3.and also recently had remaining adrenal gland out due to spread but it has gone for now. Even  if it does return i try to take comfort from others on here who have been living with it for a few years and still going strong. Take care

Hello LelyD, if it’s any help the combination therapy has worked very well for me, side effects aside. Genuinely most of the time I’m leading a normal life, cycling, gardening, looking after grand children and going on holiday etc. Cutting out dairy appears to work for me and reduces the incidence of diarrhoea. Combination therapy started working very quickly for me with noticeable reductions in Timor sizes after 3 cycles. For the last two scans the cancer in my lung is now described as barely visible and lymph nodes are normal and ther is no progression of my cancer. My original prognosis in 2023 was 4 years but as things stand I’m looking to be around fora lot longer. I hope you continue to feel well and make whatever decision is right for you. Frank