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A mixed bag…..
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A mixed bag…..

› Forums › General Melanoma Community › A mixed bag…..

  • Post
    • December 18, 2018 at 7:07 pm
    MarkR
    Participant

      So quick history – completed 4 rounds of Ipi/Nivo but then suffered enlarged pituitary and liver problems that took 4 months to resolve and have not moved on to Opdivo maintenance.  1st scan showed about 15-20% reduction but scan results today showed stable since last scan.  While I wasn’t expecting much of a reduction I was hoping for a bit so am a little disappointed.   Options now seems to be:

      –  Surgery but complications with nerves could result in mobility loss in my left hand

      –  Radiation that would stop the option of further surgery

      – Leave it alone and hope it remains stable and forget about it; or

      – Maybe restart Nivo but there are worries about side effects again

      Is anyone out there living with stable disease and how is it going for you…?

      Thanks

      Mark

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    • Replies
        • December 19, 2018 at 3:07 am
        Ridingaroundwith27Jennifers
        Participant

          Hi Mark,

          I went back on nivo after complications from the ipi/nivo combo.  I only had two combo infusions.  I've been OK on the nivo alone for over a year.  I was worried about repeat side effects and my oncologist said about 50% of people have them.  The other thing she said was that there was no way to tell who would be in that 50%.  

          Everyone is different and every situation is so different that it is really hard to give you any advice other than don't let fear make the decision for you.  Weigh your options and talk them through with your doctors and then  choose your path.

          Good wishes to you.

          Jennifer

           

          • December 19, 2018 at 7:40 am
          GeoTony
          Participant

            Hi Mark

            I only managed 3 out of the 4 double rounds, replaced the third with steroids, probably 30% reduction over that time. I'll have been on Nivo maintenance for 2 years next March, stable, nothing changed from scan to scan until 6 months ago when a lung tumour (2.5cmx3cm) disappeared, I'd been struggling with breath when exercising for a couple of months prior to that, and getting scared. But it turned out to be good news, now I'm back to stable again, had a PET scan last week, just waiting for the results. I'd love to move onto NED, but I'll take stable, life goes on, you've just got to stay healthy and live life to the full.

              • December 20, 2018 at 9:53 pm
              MarkR
              Participant

                Thanks both – that’s encouraging to hear.  I’m trying to get my head around living with the lump moving forward and guess if I’m lucky a few more stable scan results will my fears.  I don’t think it helps that I’m being scanned after 8 weeks to ensure it’s stable and not growing again.  Hopefully all will be well moving forward

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