Need to stop immunotherapy. What now ?

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Good morning, 

My husband was diagnosed in June with stage 4 kidney cancer that had spread to his spine and pelvis and also a separate lung cancer. He was started on immunotherapy, ipilimumab and nivolumab, he had two treatments with of the two drugs but unfortunately developed some side effects. He had a horrid chest infection, then developed a type of arthritis which gave him horrendous joint pain, his liver function was affected and also his thyroid. His immunotherapy was stopped and he was given steroids which helped massively. When things had settled down the doctors decided he could start the immunotherapy again but is now only on one drug, the ipilimumab. He has also had two infusions of the one drug and also a bone strengthening drug, Zometa and all appeared fine until he got diarrhoea quite badly. We thought this was a one off but on Friday he had a huge attack of diarrhoea, vomiting and stomach cramps. He was advised to come to our local hospital and has now been diagnosed with Colitis, again caused by the immunotherapy. The doctor has now said they think the immunotherapy will have to stop as it’s triggering these potentially dangerous side effects. My question is where do we go from here. I think we had both really pinned our hopes on the immunotherapy and feel that we have no idea what they will do now. The immunotherapy had been working all the tumours had shrunk so it’s just devastating that this has to now be stopped. My husband has been amazingly strong through all of this but now he is starting to wonder what next as it really seems to be two steps forward, three back. We had even began to talk about him going back to work as he felt so well. 

I’m sure this is the same for many people but we really just need a break and some positivity as we are both struggling.

Thank you x

  • Another immunotherapy drug perhaps?  I am on ipi/nivo and if that didn't work for me, my onco has another immuno drug lined up, in the TKI group.  There are loads of immunotherapy drugs.  They're not all the same.  So one might be tolerated better than others.  

    BTW it's a bit strange that they restarted on the ipi, not the nivo.  Because the nivo is the mainstay of the ipi/nivo as the ipi is just used for cycle 1-4.  You could ask why?  And why not try nivo on it's own?

  • Hi Mmum, 

    Thanks for your reply. I may have the drug wrong, it could be he’s continuing on Nivo, I will check with the doctor and ask about a different drug.

    Thanks again. 

    • Hi I was diagnosed stage 4 September 2020. Had a kidney removed then immunotherapy. This stopped after about 5 or 6 months and since then I've taken two types of TKI drugs. Cabozantinib first and for last 16 months - with a 2 month break for an operation - Lenvatinib and Everolimus. The break didn't help as tumours spread and grew but surprisingly after returning to the Lenvatinib and Everolimus there was a positive response. I'm accepting that treatment options are getting a bit limited for me now 8but the TKI drugs have done a good job for nearly 3 years so stay positive and I hope that there are further options for your husband after the immunotherapy.
  • Hi Andy I hope you don’t mind me asking . Was you stage 4 when they removed your kidney or was that stage given after a later ct scan . It’s just I have read my ct scan and I know mine has spread pre treatment so I wondered if they would still bother . It is a large tumour . I do hope to have it out and a similar success story to your self 

  • Hi Kyle , just so you know that sometimes they will take kidney out if you are stage 4 . They will shrink your other tumours first and then remove the primary one . Every case is different of course . I believe your appointment is today so no doubt all will become clear then . Good luck 

  • Thanks phill :) yes it was today I feel slightly better now . It’s crazy seeing the ct image it was huge . I will be going to guys hospital and probably having open surgery but I’m happy with whatever . Just waiting now to see if they want a biopsy etc . 

  • Ye mine was about your size too . I had appointment today . Oncologist making it clear that there are great treatments available regardless of what stage you are . 

  • Good , I’m sure it will be positive. It’s great they are taking your kidney out , that’s great news . 

  • Yes :) well hopefully I guess that’s on the guys team . But that is there plan as of now . Which I fully support . If it’s immunotherapy first then so be it I just want to get started either way asap