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Weaning Myself off Nivo

Manufred's picture
Manufred
Posts: 215
Joined: May 2017

 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's picture
MarkDavid18
Posts: 57
Joined: May 2018

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's picture
JoeyZ
Posts: 190
Joined: Mar 2018

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's picture
stub1969
Posts: 756
Joined: Jul 2016

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

Thanks for sharing,

Stub

Supersum's picture
Supersum
Posts: 102
Joined: Aug 2017

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's picture
Manufred
Posts: 215
Joined: May 2017

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,

Fred

Jan4you's picture
Jan4you
Posts: 1305
Joined: Oct 2013

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's picture
Allochka
Posts: 837
Joined: Nov 2014

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
Posts: 472
Joined: Aug 2017

what a dude...

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

thank you for all you do

LMCRJB13's picture
LMCRJB13
Posts: 82
Joined: Oct 2017

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

Amy_Jo's picture
Amy_Jo
Posts: 69
Joined: Apr 2018

Fred

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's picture
Angiebby75
Posts: 177
Joined: Aug 2017

Congratulations, your words lift my spirit time. Thank you 

Manufred's picture
Manufred
Posts: 215
Joined: May 2017

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.

Fred 

Allochka's picture
Allochka
Posts: 837
Joined: Nov 2014

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

stub1969's picture
stub1969
Posts: 756
Joined: Jul 2016

This is great news, Fred.  Congratulations!

Stub

eug91's picture
eug91
Posts: 99
Joined: Jan 2019

Congrats, Fred! 

BoondockSaint's picture
BoondockSaint
Posts: 236
Joined: Mar 2017

Congratulations Fred!!! Keep on keeping on!

Retcenturion's picture
Retcenturion
Posts: 240
Joined: Mar 2017

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

Manufred's picture
Manufred
Posts: 215
Joined: May 2017

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.

Fred 

a_oaklee
Posts: 414
Joined: Nov 2013

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's picture
Allochka
Posts: 837
Joined: Nov 2014

Unbelievable! Congratulations, and let the NED go on!

Mighty Frog's picture
Mighty Frog
Posts: 125
Joined: Jul 2017

Manufred! Congratulation! Is dam good to hear this!!! Keep it up! 

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