• May be stopping treatment

    Asked by SandiA on Friday, September 23, 2016

    May be stopping treatment

    Hi, I have been on nivolumab for about a year and a half. All in all it has been a positive experience. The results were great and side effect mild until the last couple of months of treatments. I had some major joint pain and ended up with an auto immune reaction. I had to stop treatment. It looks like I may not resume treatment. We are not sure my body can handle it. My last several scans have been good just a few small nodes noted in about 5 places. So here is the scary part. No treatment just wait and watch. Of course it is not a final decision I have time to make the decision and of course it can be changed at any time. Just wanted to hear from others who have stopped treatment and taken the wait watch and see approach. Any advise you can give me would be appreciated. Hard to switch gears and little scared right now. Thanks!

    9 Answers from the Community

    9 answers
    • StrongSteph's Avatar
      StrongSteph

      pickpeachescat has some awesome advice, she has been fighting hArD for a long time and is still here to spread HOPE!! I remember stopping treatment and missed the security of seeing a doctor every week. I am 5 years NED from stage IV.

      over 3 years ago
    • Terri's Avatar
      Terri

      I am on watch and wait for Stage 4 melanoma. You get nervous but it's actually nice to have a break and be "normal" for a while!

      over 3 years ago
    • SandiA's Avatar
      SandiA

      Thank you all very much. You give me so much hope. I go back on October 12th. I am dealing with major side effects from tapering off steroids. The hope is on the 12th I will be feeling better and we will make some major decisions at that time. But now I have a lot more hope than I had before.

      over 3 years ago

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