Wow, finally got my first treatment of nivolumab plus ipilimumab


Just got back from Longbeach VA center and they confirmed that my cancer tumor in my kidney is RCC and not urethelial. They also did a biopsy on a tumor in my lung that magically apperared....7CM. Two days later I finaly got my treatment started and they decided not to have me take the sutent that has been sitting in my medicine cabinet and go with nivo/ ipili. I am really happy about that as I feel no side effects...not even sleepy! I guess I am going to take this for 3 months or so and test to see if it is working. I believe nephrectamy may happen if this stuff is shrinking the tumors...the kidney one is 10CM. Has anyone have any input on this combination of immunotheropy? Seems pretty good from what I have read. Thanks everyone,




  • Deanie0916
    Deanie0916 Member Posts: 618 Member

    I'm glad they got a firm diagnosis for you. I don't have any experience with this just wanted to let you know I'm thinking of you sending good thoughts your way!

  • misterace
    misterace Member Posts: 37 Member
    Glad you are getting treatment

    Make sure you Join the SmartPatients kidney cancer forum as well. 

    They know SO MUCH over there about all of the meds and can help you along your journey. 


    Wishing you the best and praying you beat this!

  • Allochka
    Allochka Member Posts: 1,064 Member
    edited September 2020 #4



    Just wanted to wish you luck with your treatment! Recently one Stage 4 member checked in after long absence. She is NED now due to treatment! Medicine works wonders these days!

  • Vegas Tommy
    Vegas Tommy Member Posts: 11
    Have you noticed any changes since the start of ipi / novi

    The biggest change I have noticed is the smell of my urine. Prior to treatment it was really stinky and the smell is more normal. The urine foam is more compact, the clots that pass look lighter in color and less intact. Clots that pass no longer hurt or cause blockage. Has anyone else noticed anything like this? Thanks!