Starting Nivolumab (Opdivo) as chemo-radiation didn't work

Hi all

My diagnosis was T4NOMO Squamous cell OC.  Started chemo-radiation in December, finished February.  Recent scans show the tumour has grown again and they are starting me on immunotherapy.

Has anyone Else been on this treatment? What side effects did you have?  Did the treatment work?  I've been told this is probably the last treatment I can have so pinning my hopes on it.



  • Mellabs

    I'm sorry to learn that your tumour has grown again. This must have been quite disappointing and stressful.

    I wish you all the best and that your new treatment helps you. 

    My thoughts are with you 

  • Hi Mel

    I have been through FLOT, surgery and more FLOT and was cancer free for about 2 years but a CT scan for something else showed my cancer had returned and spread. Now stage 4. I was on chemotherapy and then immunotherapy as I had the right proteins on the cells to allow it. Since then I started having a bad reaction to the chemo drug so now on tablet chemo and immunotherapy. As for side effects from that I have felt nothing, goes in like water and no after effects. So far tumors have not spread further and shrunk. It isn't a cure but it can be a delay. I'm coming to the end of the planned 8 treatments next week but if CT is good it's just going to continue along as it can. Keep.your chin up, they are still offering options, you must stay positive. I know my time may be limited but I don't worry, I told them I don't need a life expectancy prediction, I will know myself. Why worry about something you can't control, it only makes you feel worse. Take each day as a new opportunity and live life.

    • Hi Mel I was also offered Nivolumab and for the first 11 months it’s worked very well, however be very careful not to ignore any side effects I was side effect free fir 10 months then without warning I started to suffer with diarrhoea which in turn very quickly in my case turned into colitis I am not trying to put you off the treatment as it works wonders but it can turn in your healthy tissue so be alert never ignore a symptom call your team, i as I type this am in a hospital bed having had emergency surgery brought about by the colitis and sepsis’s complications I now have a stoma and a long recovery road, so yes absolutely take the treatment but be acutely aware of side affects sorry this seams a negative tail it’s not it’s only cautionary my situation was extreme and unique but if it can happen to me then it can happen to anyone just be vigilant and you will be okay 
  • Thank you for your reply Graeme.  It is good to go in with my eyes wide open so I really do appreciate your comments. 

    I will most certainly look out for it, especially as I am on a feeding tube and have swung from diahoreah to constipation regularly and have only had my bowels settle down in the last three months or so.  Did your symptoms improve with immunotherapy? I am constantly coughing now and quite breathless.  Is yours Squamous cell as well?  Sorry for all the questions but I've been feeling pretty lousy the last few weeks and desperate for this to work.

    I hope you feel better soon and make a good recovery from your set back.

    Take care x

  • Hi I am over 2 yeas from my surgery which was very successful I can eat normally now you wouldn’t know I ever had a problem except I need to sleep at elevated position but that’s easy so as far as the surgery is concerned and by the looks of things your also post op on a feeding tube? It’s also easy it will come out you will feel better trust me as I said take all the treatment offered but be vigilant 

  • I couldn't have surgery as it was too advanced and too high up my oesophagus.  I only had chemo-radiation which was effective to begin with but as soon as its stopped it continued growing.

    But I will take comfort in your experience.  Any improvement to my current condition  will be fantastic. I can't wait to get started.

    Thanks Graeme

  • No mine was at the junction of the stomach have you had surgery or not? If not absolutely take the immunotherapy drug but monitor your bowel movements if they change call your MDT  i if your on morphine it can cause constipation so don’t worry,I unfortunately am classified as terminal but my secondary cancers are in my bones and lung now but all small and stable hope that helps 

  • Ok well your T4N0M0 so it’ hasn’t spread so there’s a good chance if like me you respond well I am stable with some reduction in areas so good luck I hope you respond well 

  • No it hasn't spread thankfully but I was already stage 4 at diagnosis so they ruled out surgery.  Rhe chemo-radiation pushed it back a little but I've been waiting 8 months for the latest results, knowing all the while it's spreading up my neck. And now I'm starting immunotherapy.  Hopefully it's not too late and I'll see some quick results. 

    Good to hear your secondary are small and stable.  Will you get back on immunotherapy when you're released from hospital? Or is it too risky?

  • Don’t know yet it’s to son but they mght aler my dese but. I would need carful observation but my immune system has learned what to look for so it still works to some degree even after treatment ends