update on Chucks participation in the IPI + Anti Pd1 trial

AprilandChuck Member Posts: 110

Sorry I have sort of checked out lately..the Baby is home from college and everyone and their brother had an April or May birthday lol...


Chuck will receive third  Infusion of the combination...Tuesday normally it would be Monday however its Memorial Day..and its scan time..so those happen Thursday the 30th..we asked to hold the results till Monday because Thursday is our youngest daughters Birthday..and waiting for the results does not seem so bad now :D so far his side affects have been minimal...knocking on wood as I say that..he had a spot on the back of his neck that was never tested...but its now flat..we are taking this as a positive sign...he has had it so long..it never occured to us it could have been his first Met...and we now believe that it may have been the first outward sign of cancer he has had it 20 plus years...I have had a lot of thoughts on this..I am keeping them to myself because I am not a doctor..his energy level is a little lower than it was prior to cancer..but that means its still higher than half the populations lol..he gets tired easier and that aggravates him..he has allergies now and never had them in the past..and some minor skin irritation... his bp has remained fairly good as has his appetite...he remains extremely positive...having the baby home keeps him up beat..his kidney function has fluctuated however it remains in  acceptable ranges..I have touched base with someone else whose spouse is in the study a few weeks ahead of Chuck..he has hadhis scans...his results were better than expected after only 2 infusions...and his disease was more advanced than Chucks...our own Fox..put her on the sent of Anti Pd1 via another board.. I don't think he rearealizes he is fast becoming a legend in the small and terrified Advanced RCC community...

You all are always a comfort to us...I will try to do better updating..but know even when  I don't I am still checking in :D sending lots of hugggss and hope out to you all this Memorial Day Weekend be safe,,


  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Congratulations to you both and tell Chuck he's doing a good job of following in the footsteps of that old Legendary Fox!

  • alice124
    alice124 Member Posts: 896 Member
    Chuck's trial

    Sounds like all is going well and I'm happy for you and Chuck. Will be thinking positive scan results on Thursday.

    Just as a fyi, I touched base with a guy on the same trial (Nivolumab/Votrient) as John just this morning to see how he's doing. He's been on trial for 16 months. His response:

    "No active cancer as of November 2012 and NED in April 2013." 

    When I hear these reports, I really start thinking the common denominator here--Nivolumab--may actually be the magic bullet!!! I know Fox believes it.  Whatever is achieving the magic, let's get more of it!!!

    Hand squeezes to you and Chuck. . .