Immunotherapy

I was diagnosed with metastatic RCC spread to the lungs in Nov 2021.  My tumour was 59mm. I started immunotherapy (ipi/nivo) in Jan 2022 and a ModiFY trial (nivo + modi-1 anti cancer vaccine) in June 2023.

I stopped treatment in June 2024.  My tumour is now 23mm and no detectable lung mets.  

My blog is here.

Thank you for your positive reply! I hope my mum has the same response as you have x

I’m on targeted therapy Suninitib tablets with Metatastic nodules on my lungs which had grown to 10mm, after a year they are down to 3 mm and stable, Immunotherapy is the next stage if they start to grow again 

That’s really good. Glad it’s working for you. Hope my mum has the same response. Did you have your kidney removed and start the tablets or do you still have your kidney and they are treating both? 

I was diagnosed in Oct '24 and started on Nivo/Ipi in Jan'25. Had to stop treatment as I got massive reaction to the treatment with rash & itchy skin. Eventually got on top of it and treatment restarted in Apr '25 though just Nivo only. Still had varying degrees of being affected by side effects and treatment continued up to Oct '25 when there was a bigger flare up & treatment stopped again. Referred to dermatology and had biopsy done on my skin and have approved 12th May to see what /if anything can be done to help.

In the meantime it was agreed in Jan '26 that kidney could be removed so that was done on 19th Feb. 

Still got cancer in my lungs/lymph nodes so will be having CT scan & then F2F with consultant to discuss outcome of the scan and what happens going forwards.

Really pleased that your tumour has shown such brilliant shrinkage whilst you have been having treatment 

1. Take care and good luck for the future 

They removed my kidney in 2017 and said there was no spread with a 25% chance of it popping  up elsewhere which it did a year ago with 2 nodules on my lungs at 10mm they are now down to 3mm and stable but still on the tablets to keep it there

Good morning, Ariel. 

I have started immunotherapy (pembrolizumab)for precaution. So far treatment is going well. I have had minimal side effects so far. 

All the best, 

Jamie 

Hi Jamie, I was wondering how you are getting on with the pembrolizumab? I do hope it’s going well for you.  I have to decide whether to have it or not (if so I need to start within the next 2 weeks) and it’s hard to know what to do. I’m really worried about side effects as my kidney and adrenal function is already very low. Would be interested to hear your experience of it. 

Good morning, 

I have so far had very little side effects. I get some joint knee pain at times and fatigue. I get some cold hands normal a few hours after dose but gors away the following day. 

All my bloods so far have been fine and they give me a 24 helpline number to contact if I am worried about any physical symptoms. 

It a personal choice to start it or not. I went for it as I thought if side affects get to bad, I can always stop the treatment. 

There is a group i am part of Immunotherapy 1st one which we are all on immuntherapy. We share updates on how we are all getting on. 

Hope this helps, 

Best wishes,

Jamie 

Hi Ariel, my husband had a kidney removed in 2021, then his bladder & prostate in 2023. Late 2024 2 metastatic tumours were found in his lungs, 10mm & 20mm. After a course of chemo one tumour was no longer detectable, the other was 8mm. He was put on Avelumab immunotherapy every fortnight in April 2025 & is stable. His main side effect is itching & rash, but it’s kept under control with an antihistamine & occasional applications of steroid cream. He gets tired very easily but has a good quality of life.