Immunotherapy Continued

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Hi everyone. Looking for some experience and advice from other immunotherapy patients.

6.3 cm Renal tumour on Lower Pole three Mets on left lung largest being 1.8 cm. Four months on combination immunotherapy ipilimumab and nivolumab renal tumour down to 3.9cm two mets gone on lung remaining met is 5mm. I was very happy with this progress but three months further on just nivolumab and recent scan showed no further changes.

No further Mets detected but should I be disappointed in this because the remaining lesion on the lung has not disappeared.

The oncologist said this is still a good outcome but I was hoping the Nivo would have continued progress.

We are proceeding with nephrectomy now and at least a further 12 months on Nivo.

Has the Nivo continued to do its job or has it stopped working? Any comments or experiences welcome. Good luck to you all

  • I found out I have clear cell renal lung cancer a few weeks back and its incurable......im devastated.  Im having immunotherapy to try and help slow progress.  I'm 44 two kids 17 and 14 and a beautiful wife that I'm not ready to leave. I've had one lot of immunotherapy to try and slow progression but I can feel that my lungs are not absorbing what I'm inhaling im so scared.

  • I'm so sorry to hear this I know how scary this can be. I find Solace in reconnecting with my family and friends and I've connected with other cancer sufferers which I've found a great help.

    Nothing anyone can say will make your journey easier. We all have limited time on this planet some of us less than others. The thing I've learnt from other cancer sufferers is just do the best you can every day. Wishing you all the best

  • Hi Theo

    My oncologist told me it is normal for the ipi/nivo combination to have great results, with shrinkage of the tumours, but for it then to 'plateau', with no, or only slight shrinkage after that. The treatment continues to work, and keep the tumours stable.

    I'm not sure why the tumours don't continue to shrink at the rate they did to start with. It does sound like your treatment has been really successful! Try not to be disheartened with your results so far....your cancer has now become stable enough for surgery to go ahead!

    The Nivolumab treatment continues to work, even after you stop having it, so it will still be doing it's job!

    Candysmum

  • Thanks so much for this Candysmum

  • Hi Theo,

    I started on Ipil/nivo  &  nivo afterwards, I had a nephrectomy 3 years ago but they found 5 mets in my lung hence the immunotherapy, mine have disappeared over time & I have been on nivo for over 2 years now with no signs of cancer so far ,so keep with it as it looks to have stabilised your mets

  • Great News Phil. Gives me hope. Thanks

  • HI Phil, do you know what your Leibovich score was initially? Just interested as mine is 6 and therefore quite high risk of spread/recurrence, although my tumour was 'only' about 6cm. Thanks!

  • Hi, ive just read your profile, you are doing well . I’m just about to have a 14 cm tumour and kidney removed . Do you remember what stage and grade you were after kidney removal ? 

  • Hi, it's only stage 1 because of the size and they seem to be more concerned with the Leibovich score than other staging as such - this shows how abnormal the cells are and therefore higher risk of spread/recurrence. My score is 6 which is referred to as intermediate in some places, high in others. They don't actually know if there is anything 'floating around' or not - there is no way of telling - but I opted to go for follow up treatment because if there is anything, it decreases the risk a bit and I want to do anything that might help.

  • Hi Starlady,

    I don’t remember being given that score