Clinical Trial Nivolumb

Hi Jjk17, are you going to start Nivo soon or have you already started?

Two years on treatment with nivolamab – optivo.  I had surgery at Mayo in Sept of 2015.  Nov. 2015 it spread – Stage 4.  I had 2 radiation treatments and 12 lymph nodes removed.  I came home to Sioux Falls to do the treatment here.  I feel good.  I don't really have bad days.  I'm a little tired but maybe that's just 63 years old.  My first two treatments I had Opdivo and Yervoy.  After the 2nd I had some diarrhea but not bad.  I lead a normal life.  I swim 3 days a week.  I walk my daughter's dog 3 times a week for 2 miles.  If I was you, try to be excited about the treatment.  You won't lose your hair.  Might get a little thin but might not be treatment – just getting older.  I don't have a port.  My life is very normal and great really.  I am very thankful for this drug.  I'm on my 51st treatment and cancer free for almost 2 years.  Deciding tomorrow whether or not to continue treatment.  Go full blast.  We are trailblazers!  

Many, many folks on this forum have taken both anti-PD-1 products, Nivolumab (opdivo) and Pembrolizumab (keytrua).  I took nivolumab for 2 1/2 years in an early clinical trial from 2010 to June 2013 after advancing to Stage IV with brain and lung mets.  I have had no further treatment and remain NED.

Here is a report I put together years ago regarding side effects:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html  

Hope that helps.  I wish you well.  celeste

What clinical trial are you asking about? You can read my posts on my clinical trial. I had 25 infusions of NIVO over a 50 week period. I am stage 3B and NED 2 years post op and one year after completing my treatment. Very minimal side effects. 

Hi JJK17, there are a lot of possible problems when taking Nivo, but for most the drug is well tolerated. I have been taken part of a trial (checkmate 067) since Jan. 2014 getting the drug every two weeks. Fatigue has been my constant friend during the trial, I also developed Vitiligo in several regions of my body. Lately I  have been having some sore joints, but this comes and goes. The best presentation that I have come across of possible side effects for Immunotherapy drugs in general is from Dr. Postow. Here is the link!!! http://learn.peerviewpress.com/p/index.html?collection=150204255-2-2&presentationid=p3&SpecialtyID=74&ProfessionID=12&Promocode=815#screen1

Currently being treated at Mayo with Keytruda.  Have just completed my 26th treatment and clear MRI scan of the brain.  In 3 weeks I go back for my Pet scan and if its again clear I will be done with the Keytruda.  Have  been NED since early this year but Drs. wanted to continue the Keytruda through the year.  Can't believe I am this far along and maybe feeling a little guilty that I am approaching a normal life again.  anyone else out there feeling these feelings as you get near the end of treatments.  Hoping for the Christmas present of a lifetime.   Good luck to all.  Beans