Weaning Myself off Nivo

Manufred Member Posts: 241 Member
edited September 2018 in Kidney Cancer #1

 After having been on combination immunotherapy (Ipi/Nivo) for three years, and having been NED at the last six of my regular three-monthly scans, I have decided to stop the treatment.  The medical team thinks it has done all it can for me, and my immune system should be able to do the job by itself from now on (if needed).  Furthermore, people going onto this therapy at present are only being given two years of it.

 So in one way I feel as though I am throwing away my security blanket, but on the other hand that I am taking another step forward in my fight with cancer.  I will continue to be monitored every three months as part of the trial protocol, but will no longer have to present at the chemo lounge every two weeks.

 I still find it a bit surreal to think I have actually gotten away with having mRCC, which in the past was usually a very sombre prognosis.  I am absolutely grateful to all the scientists who made this possible, together with all the various politicians, bureaucrats, drug companies, funding organisations and private donors who had the courage and vision to support scientific and medical research.  And the nurses, doctors and clinical staff who daily continue to be at the forefront of the still daunting battle for people’s lives.

 There is still a long way to go before we totally defeat cancer, and my own story may still have some further stages to it that I can only guess at, with no certainty of being permanently cured.  However I feel that I represent a real achievement by the medical community, and sincerely hope that more and more others will come to benefit from this progress as I have.

And it is somewhat ironic and very sad to be posting this after just learning of Abunai’s passing.  A bitter sweet moment.



  • MarkDavid18
    MarkDavid18 Member Posts: 61
    Congrats & Thank you!

    Congrats on reaching this milestone - WOW!!  What a great success story.  I wish you continued success.  I also wanted to thank you - your participation and contributions during the clinical trial phase helped to make this powerful and live saving combination a first line treatment for those newly diagnosed with mRCC.  My battle is still in the beginning stages but I am hopeful that one day I too can be NED because of IPI/NIVO. Good luck to you!

  • JoeyZ
    JoeyZ Member Posts: 210 Member
    That's great news, and I wish

    That's great news, and I wish you well in this leg of the journey. What a great inspiration your story is, and you give hope to others. All the best to you.

  • stub1969
    stub1969 Member Posts: 959 Member

    This is such great news!.  Enjoy being "med" free for a long, long time.

    Thanks for sharing,


  • Supersum
    Supersum Member Posts: 109 Member
    Quite a journey

    You've been on quite a journey now it's on to the next step. My oncologist told me a couple of weeks ago he was taking a responder off nivolumab after 3 years. All the best to you and let's hope your cohort are trailblazers for lots of others coming after you.

  • Manufred
    Manufred Member Posts: 241 Member
    All is relative

    I do feel a bit like a trail-blazer, but I am reminded that our own Fox was a trail blazer in the early Nivolumab trials about ten years ago.

    Every step helps.

    Thanks for your comments and keep well,


  • Jan4you
    Jan4you Member Posts: 1,330 Member
    WOW! What a journey! Science,

    WOW! What a journey! Science, medical teams and FAITH to keep on going! You're part of history!

    Thanks for sharing.

    Continued healing~

    Hugs, Jan

  • Allochka
    Allochka Member Posts: 1,021 Member
    What a news! Stage 4 to NED

    What a news! Stage 4 to NED and finishing medication! A real proof that cancer can be beaten, and it will be 100 % beaten in the future. It might take quite a time until we get there, but we will!

    So glad for you!

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    if I had a drum

    what a dude...

     I love it when people do this... you are truly amazing

    thank you for all you do

  • LMCRJB13
    LMCRJB13 Member Posts: 84
    Great news!

    Congratulations!  Your message offers optimism and hope to all of us!  Such great news.  Continued success to you!

  • Amy_Jo
    Amy_Jo Member Posts: 70 Member


    I am so thankful for you, you are definitely a trail Blazer I'm currently undergoing this treatment and so far it is working for me. You have offered your experience and advice concerning side effects. It's made life easier for me knowing you've been there. I'm so happy your results have been amazing.  

  • Angiebby75
    Angiebby75 Member Posts: 208 Member
    Congratulations, your words

    Congratulations, your words lift my spirit time. Thank you 

  • Manufred
    Manufred Member Posts: 241 Member
    Still good

    CT scan today, six months after stopping my fortnightly Nivo.  All clear.

    Sort of bitter-sweet feeling, with some of you going through tough times.

    Best Wishes to everyone here.


  • Allochka
    Allochka Member Posts: 1,021 Member
    So-so happy! Hugs and kisses,

    So-so happy! Hugs and kisses, let it continue for a long-ling time !!!

  • stub1969
    stub1969 Member Posts: 959 Member
    Awesome news, Fred

    This is great news, Fred.  Congratulations!


  • eug91
    eug91 Member Posts: 389 Member

    Congrats, Fred! 

  • BoondockSaint
    BoondockSaint Member Posts: 242 Member
    Congratulations Fred!!! Keep

    Congratulations Fred!!! Keep on keeping on!

  • Retcenturion
    Retcenturion Member Posts: 240 Member

    Great to hear. Sending back some positive thoughts for you and your loved ones.

  • Manufred
    Manufred Member Posts: 241 Member
    edited May 2019 #19
    And again.

    Hi, me back again.  Another 3-monthly CT scan this week, and again no signs of disease.  Bloods all good too.

    I still can't believe my luck to have had this degree of success so far, and part of me is half expecting all of this to turn negative, but meanwhile I will continue to reap the benfit of the hard work by all the scientist, clinicians and volunteers who have gotten the immuno-therapy story to where it is today.

    Best Wishes to all of you.


  • a_oaklee
    a_oaklee Member Posts: 566 Member
    I read your profile and I

    I read your profile and I think you have done very well.  You have such a great attitude, and I admire your bravery.  Sweet of you to mention all the people whom you appreciate along your treatment journey.  For my husband, who was diagnosed stage 4 in 2012, it came as a surprise to us that we were the ones that had to decide on what treatment path to take.  We had expected to be told what to do next.  It's hard to make these decisions as lay people.  My husband has been on Inlyta since 2013.  All of his scans are negative since.  He has chosen to continue taking the pills.  It's certainly easier than an infusion.  I think we are kindof afraid to stop.  Because of it being a fairly new medication in 2012 there is no data for long term use.  Docs dont really know what to tell us, as always.  It's our choice.  

    I wish you the very best, and congratulations!

  • Allochka
    Allochka Member Posts: 1,021 Member
    Unbelievable! Congratulations

    Unbelievable! Congratulations, and let the NED go on!