Ipi/Nivo starting treatment

  • 7 replies
  • 50 subscribers
  • 1214 views

Hi, 

my wife has stage 4 metastatic melanoma and has been on Debrafenib and trematenib since January which has been fantastic 
sadly we have just found out it is now stopping working and two brain tumours have appeared

Doctor is now starting her on immunotherapy course of Ipi/Nivo tomorrow initially 4 cycles every three weeks 

we’ve had a meeting to discuss possible side effects and how effective the treatment might be.

can anyone on here share your experiences and what we might have to expect/look out for?

  • Hi Ken

    I am in a similar situation to your wife, having been on the Dab/Tram and about to start the Ipi/Nivo next week so thought I would add my request to yours for personal experiences. One can read all the information sheets in the world but there's nothing quite like lived experience.

    Good luck to your wife.

  • Hi Emgie

    welcome along. Let’s hope the Ipi/Nivo does its job and that the side effects are minimal 

    best wishes for your wife also

    Ken

  • Hi Ken 10, I have even referred to neurology for Immu. Treatment. Was wondering g how your wife was getting on and any side effects. Ta Nigel

  • Hi Emgie, I have even referred to neurology for Immu. Treatment. Was wondering g how you are getting on and any side effects. Ta Nigel

  • Hi, I was also diagnosed with stage 4 melanoma  June 2022 and started ipi/novi July 2022, initially I had itchy skin and rash after treatment,  I only had 2 doses of the immunotherapy as it flared my ulcerative colitis so bad  it put me in hospital for 3 weeks so immunotherapy was paused and I was given a rescue drug for my stomach, I'm currently still having the rescue drug by infusion,

    I saw my consultant December after having an xray to see what was happening with the cancer, The xray showed there is no longer any evidence of disease and the immunotherapy has worked, 

    Side effects to immunotherapy can affect everyone differently,  Hope your wife is ok on treatment and gets the best results x wishing her all the best, 

  • Hi all. I had my first infusion of Ipi/Nivo in December. It gave me Immunotherapy Related Colitis and further infusions were suspended until they could reduce the inflammation of the colon. I just got home from my second stay in hospital tonight, this one for six nights with high doses of steroids. It seems to be under control now but the consultant will not continue with the Ipi/Nivo due to my reaction to it. The lesions in my liver have grown while all this has been happening. I have to wean off the steroids now over the next few weeks then start on targeted drugs to try and slow the growth of the cancer. The consultant is not optimistic that they will work because the Dab/Tram did not work for me either. I am delighted to hear that it worked so well for you though Puppy Love, that's amazing news.

  • Hi Ken Sorry to hear about your wife, I was diagnosed with stage 4D cancer in Jan this year. I recieved the duo ippi and Nivo treatment, about 2 weeks later I had back pain and high temp and found my liver was being attacked by my immune system. After a week in the Christie I am now being managed off the steroids and hopefully will be going on to just the Nivo drug in about a weeks time. The news I was given is that sometime when the body overeacts its a good sign that it has attacked the cancer. I Have a scan next week to see if it's worked.I would say you have to give it a try and don't be too worried about the side effects, they might not even happen. Good look to you both going forward.Regards Greg