RCC spread to lungs and lymph nodes

Good afternoon, Animallover64. 

Firstly welcome to the forum and I hope you find it very supportive. I am Jamie one of the online Community Champions. My own kidney cancer journey is in my profile. 

I am sorry to hear about your dad and having stage 4 kidney cancer which has spread. I have read a lot of positive outcomes on here, from others who have had this spread to lungs and lymph nodes too. Just because it spread dont always mean its not manageable and with treatment can help to control symptoms. 

I have also started immunotherapy, and I would say try not to worry to much when his clinical team mention all the possible side effects. They have to tell him so he is informed, but it dont mean he will get all of them or he might not get any at all. Its all very individual. I had my second dose last Saturday. So far, I have fatigue, cold hands and feet at times. All depends on which treamtnent his clinical team decided is the best option for him. They will know more once they fully review his scans and discuss his case in a MDT meeting. 

Its a good idea to get his legal stuff sorted (even before serious illness) and LPAs can be done online through the gov.uk website. You can also give our helpline a call who can also offer you more advice and support. It is hard doing this on your own being a only child, but there is lot a support out there. 

https://www.macmillan.org.uk/cancer-information-and-support/treatment/if-you-have-an-advanced-cancer/advance-care-planning/power-of-attorney 

I have included our information on kidney cancer here. Just click on the link below. It explains things more easier to understand becasue often medical reviews can get over whelming and DR google is negative at times. 

https://www.macmillan.org.uk/cancer-information-and-support/kidney-cancer  

I hope this helps, and I am sure other will soon come along and offer their support to. 

Please let me know if you need further support or just a chat. We are all here to support you. 

Best wishes,

Jamie 

Hiya Jamie, 

I did read your profile earlier so thank you for replying. As much as it’s unpleasant it’s comforting to know there’s others going through this too. 

It’s also comforting to hear that not all the side effects actually happen - it hadn’t really occurred to me that might be the case. We suspect it’ll be ipiluumab and nivolumab as the immunotherapy offered. 

I also gave the helpline a ring earlier and the woman was incredibly helpful. 

My Dad certainly hasn’t led a healthy lifestyle by any means - enjoys the pub and fast food, and was on the very larger side. He’s lost 30kg since this started in Nov. 

If anyone has had the above drug for immuno and can advise what side effects they’ve had, I’d be really appreciative. 

Thank you 

Happy to help anytime. I think if you add a question in the treatment and dignosis part in the kidney cancer forum, specifically asking your question about your dad's potential treatment. I am sure someone will have been on it for treatment and can offer more advice aroind their side effects or what to possibly expect. 

Take care and please send your dad our well wishes too. 

Jamie 

Hi

My husband has been having immunotherapy he started in November last year on both of those drugs... he has had 4 cycles and is now on ipiluumab on a monthly cycle... his tumours were showing as smaller in his first follow up scan in January... he has his next one later this month. 

His worse side effect was significant itching and a light rash on his arms - which they prescribed cream and antihistamines. Other than maybe a bit more tired than usual nothing else at this point.  Bloods showed a slight liver issue but this has been monitored and managed mainly by diet. We were also told all the possible side effects so anticipated the worst...

Hope this helps a little.. take care

Thank you. This is very helpful. 

Animallover64 said:

If anyone has had the above drug for immuno and can advise what side effects they’ve had, I’d be really appreciative. 

Hi - I was on ipi-nivo from Jan 2022 until June 2024.  I was lucky, I had annoying niggly side effects and an adverse event due to too good a reaction to the drug.  My kidney function is now like that of an 80 year old.  

I know it's scary reading the drug info, but you won't get all the side effects, just the odd one maybe.  All the ones I got (dry eyes, itching, dry mouth, nasal congestion, kidney function eGFR decrease) were not mentioned in the possible side effects - they were too rare to meet the threshold for inclusion.  

I'm categorised as a good responder.  My lung mets are undetectable, and the kidney tumour went from 59 to 23 mm.  

Thanks Mumm. I was hoping you would pop along and offer your lovely supoort too. 

Thank you  

Hi. My mum has been diagnosed with a 7cm tumour on her left kidney, some involvement of the lymph nodes and a 10mm nodule on her lung. She had a biopsy on her lung today and she next has an appointment in a couple of weeks with the oncologist. I’m so scared they will say they can’t do anything. I’m trying to stay positive but it’s really hard. Hope your dad will be ok x

Hi Ariel, 

I’m sorry to hear about your Mum. Finding out it’s there and has spread is really scary - it was only a couple of weeks ago we found out and it’s a lot to take in. 

My Dad has around 75% of kidney as cancer and the one on his lung grew from 15cm to 20cm within a month or so. That said, I went with him to the oncologist appt this week and feel so much better for speaking to the consultant myself to ask questions. 

My Dad started treatment yesterday he’s having immunotherapy with two types of drugs for 12 weeks then do more scans to see if it’s worked. There are lots of treatment options out there, I was also really scared but going to the appointment and asking questions really helped me. Sending you so much love x x 

Thank you for your reply. It gives me hope that they will be able to do something for my mum as they have your dad. Her next appointment is for the results of her biopsy she had today and hopefully a treatment plan. I want to be there with her but it just really scares me in case say they can’t do anything x