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Nivolumab side effects, efficacy

Posts: 13
Joined: Jun 2013

My wife recently started on a clinical trial with nivolumab.  So thankful and excited about the trial but I wanted to solicit the experience of others.   My town main questions are:

1) What side effects have you experienced?

2) What was the time course of being on the drug?  When was the first scan?  Did your scan show tumor shringage vs stable vs growth? 


Frank302's picture
Posts: 71
Joined: Feb 2013

Side effects for me have been extremely minimal . Maybe a little tiredness and some dry skin . That has been it.

I've been on the drug for a little over two years . I had my thirty sixth infusion last Thursday .

First scan at six weeks following first infusion . Every six weeks after that for the first year of treatment . Now every twelve weeks .

First two scans showed tumor growth . The next two showed shrinkage . The next scan showed no signs of cancer and and all scans since have been clear .

I'm glad your wife got into a trial and I hope she has great results .

foxhd's picture
Posts: 3183
Joined: Oct 2011

None. Maybe some lazy days. Maybe drier skin than usual. It is extremely easy. Just show up. For the 18 months I was on it, I jogged, lifted weights, golfed, and rode my bike every week. I rode back and forth for half of my infusions. I had mentioned in the past that I felt guilty because it was so easy with such good results.

johns son
Posts: 12
Joined: Jan 2014

Just wondering, what it would take to get on this wonder drug. Everything i read is so positive. I'm going to ask Dr  Fishman , when we go back to Moffit. Can you get on this drug from a  Dr. in a different country? Thanks for the help.  Good luck to all!

Darron's picture
Posts: 308
Joined: Jun 2013

My trial was combination Nivolumab-Sutent. All of my side effects were from the Sutent. 

Started In Feb 2013 with 3.6 cm tumor in left adrenal gland, meta to lungs. 6 week scan showed 10% enlargement, but inner part of tumor showed signs of cell death (or necrosis). Mets lighteNed on1st scan and disappeared completely by 18 weeks (I think).

scans ever 6 weeks until 6 months in, then every 12 weeks. Last scan on Jan 2, 2014 showed NED.

read my bio for a little more info. I believe new arms if the trail are re-opening for enrollment in late January- February.

New arm with Ipilumimab in RCC. It was very successful on melanoma.


one putt
Posts: 72
Joined: Sep 2012

I'm in a nivolumab / votrient trial with limited and very low impact side effects. Difficult to say which drug may cause them.  I was scanned after 6 weeks with  with a 33% initial reduction. I have tolerated the drugs extremely well and remain in  this trial since May 12,2012. I'm currently  at 60% reduction and  my dr says l can remain in the trial as long as I have a durable response.

GSRon's picture
Posts: 1304
Joined: Jan 2013

Sure sounds like a winner to me..!


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