Need to stop immunotherapy. What now ?

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Good Morning, 

My husband was diagnosed in June with a 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 of the two drugs but unfortunately had some side effects. He had a horrid chest infection, then developed some 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 settled the doctors decided he could start the immunotherapy again but is now only on the one drug, Ipilimumab. He has two infusions of this one drug and also a bone strengthening drug, Zometa and all appeared fine until he got diarrhoea quite badly, we thought it was just a one off but on Friday he had a huge attack of diarrhoea, vomiting and stomach cramps. He was advised to come into our local hospital and he has been diagnosed with Colitis, again caused by the immunotherapy. The doctors have now said they think this treatment will have to stop as it’s triggering these potentially dangerous side effects. My question is where do they go from here. I think we had both really pinned our hopes on this immunotherapy and feel now that we have no idea what they 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 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 talking about him going back to work as he was feeling 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

  • Good morning  and I am so sorry to read about how things are going with your husbands treatment…… this is a very stressful and challenging time for you all.

    I have a completely different (incurable) cancer so have nothing to bring that will help answer the What now? question although over my 24 years living with and being treated for my condition, when things became challenging at times all we had was hope.

    This is a general Cancer Treatment discussion group so you may not pick up the group of people who have walked this specific journey…… but let’s see who is looking in.

    To spread your serch for answers you may want to post this post in the dedicated Kidney cancer support group that I do see you have already joined and posted in before.

    You may also want to join the Lung Cancer support group as well.

    We also have our cancer nurse team in our Ask an Expert section but do allow a few working days for a reply.

    ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hello, I’m currently in a similar position with my husband.  Immunotherapy has just stopped as after 17treatments  then signa of progression. But side affects have started, not good.   When he is fit again the consult days he can go back onto chemo with an additional drug adding which begins na with the letter B.  But he has to get better first. 

  • Hi, Thank you for your reply, I hope your husband, and you are doing ok. My husband only managed 2 treatments with the two drugs and then, I think, 3 of a single drug. Sadly after every treatment the side effects reappeared. The good news is that all the growths in his spine appear to have gone so a decision has been made to now remove the primary source, his kidney. We are just waiting on a date for that, then once he has recovered from that they may look at some radiotherapy for his separate lung cancer. I am amazed by all the amazing treatments they now have and I thank the lord we have such an amazing hospital with a fabulous oncology department so close. Wishing you and your husband all the best x