Stage 4 kidney cancer

Hi Dolly.

I was diagnosed on the 9th of January. Scheduled to start immunotherapy on the 7th of April, three months later. Didn't actually start until the 28th of April due to blood pressure issues. I would advise your husband to visit his GP and get his blood pressure under control now so that there are no hold ups.

Kidney cancer is slow growing. Mine had probably been going for 10 years or more before i had any symptoms.

Immunotherapy is working for me. Some side effects. Occasional nausea. I sleep well though. Haven't had diarrhea at all. As I say my single worst issue was my blood pressure so please make sure your husband gets that sorted out now.

Wishing you both all the best.

Vicki x

Thank you for taking time to comment I really appreciate it we was told my husband probably had his tumour 5-10 years and didn’t know could I ask how you are now ? Are you able to do day to day things my husband has not been able to do as much as before I’m just scared I don’t know what to expect I think I might wake up and everything has got worse or he gets really sick quick or how much time we have left it’s like your on a tight rope balancing I can’t imagine how you feel it’s such a terrible thing the incurable bit makes it’s difficult as well did they say that to you if you don’t want to say anything I  understand i hope your as well as can be and thanks again 

I don't have as much energy as I used to but that might be partly old age. I can walk, do housework and gardening with no issues but everybody is different.

Many people on here have incurable cancer but the thing to remember is that incurable does not mean untreatable. There is a forum on here for incurable cancer that you might want to look at.

As for how much time you have left, nobody knows that anyway regardless of their health. Try to take it one day at a time and make the best of it. I find that I enjoy the little things. The snowfall a few days ago looked beautiful on the hills. We have a blue sky and sun today so now the floods have retreated we'll take a walk by the river.

Maybe your husband could speak to his oncology team about his worries which will help set his mind at rest. It does get easier with time.

Vicki x

I'm stage 4 RCC.  Had immunotherapy for 2.5 years with good results.  It's my 4 year anniversary on Monday :-).  I was also on the ModiFY (Modi-1 vaccine) trial.  What trial are you on?

I did not have bad side effects.  But I did have immune related adverse events which are rare, but are associated with better treatment outcomes.  Eg I had too much inflammation in my kidneys causing impairment.   

You can read my blog here.

Wow that’s great thank you for telling me my husband is starting lion trial next Friday and also nivolumab and lpilimumab immunotherapy he’s not been right well very tired can’t do as much now and I’m scared not knowing what’s going to happen he’s had bad inflammation they originally thought it was a infection but it’s the tumour his bloods are very bad as well 

I just feel hopeless I don’t know to to turn to or what to expect I’m a person who prepares for everything but I can’t for this and I don’t no what to do I know every one is different and how they react to treatment is as well I keep reading stuff I don’t think is doing me any good we have 4 children youngest is 13 and it’s difficult what to say to her 

thank you for reaching out I really appreciate it

Hi Dolly, I was diagnosed with stage 4 kidney cancer early in 2025 and have been on Pembrolizimub immunotherapy and Axitinib chemo tablets since the end of March. I have had a few side effects from my treatment, but to be honest, these do not affect me day-to-day in the way the cancer was when I was first diagnosed. The main side effects I have are raised blood pressure, an underactive thyroid and a slightly temperamental digestive system. I'm not sure which are from which treatment. Early on in the treatment I suffered badly from broken finger nails, but the oncology nurses recommended Polybalm, which has fixed that.

Hi there, your post has resonated so much with me Dolly I wanted to reach out. This is my first Macmillan post, I only joined the forums today. My husband was diagnosed with stage 4 renal cancer, 13cm tumour on his kidney, which has spread to his lungs (30+ tumours), completely unexpectedly as he seemed a perfectly healthy 46 year old. We found out the week before Christmas and his first immunotherapy session is tomorrow morning (if his blood pressure isn't too high). 

I too am really struggling with this sudden diagnosis and all the whatifs, what our future holds and why on earth this has happened to him. I'm sorry if this sounds weird but I'm really thankful there are other people out there like me going through this, all my friends and family are terribly upset and want to help but they don't really understand what it's like to have your future ripped away from you and suddenly live in this scary world where everything is so out of your control and all you can do is hope and pray the treatment somehow works and buys you more precious time. 

Thank you for the other commentators on this post too, it's been helpful to understand some of the side effects of Nivomulab, and also how slow growing RCC is, that's made me feel slightly less guilty for not picking up on the signs sooner - if he had it for 5-10 years with no symptoms I guess it would have been impossible to know earlier (which is something that has really been playing on my mind quite a lot). He only got diagnosed as he had a suspected hydrocele in November, which the oncologist subsequently told us was actually a side effect of the cancer (and the hydrocele disappeared within days so my husband wasn't actually going to follow to with the GP until they insisted)!