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Opdivo – Stable
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Opdivo – Stable

› Forums › General Melanoma Community › Opdivo – Stable

  • Post
    • February 21, 2017 at 1:20 pm
    Coneflowers
    Participant
      My daughter who is a child has now been on Opdivo for over a year. She has been stable for almost a year!! Which is so great! Just wondering if there is anyone out there that has moved on from stable to NED? I have read a few stories, and I know everyone is different… I of course also worry that it will stop working. Her case is extremely rare and no one really knows what to expect.

      Thanks!

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    • Replies
        • February 21, 2017 at 7:24 pm
        blessd4x
        Participant

          So good to hear about your baby doing well on Opdivo!  My husband, stage IV, was on it and has been NED for almost a year. God bless!

          R

            • February 22, 2017 at 2:43 pm
            Coneflowers
            Participant
              Thank you! That is wonderful!!
            • February 21, 2017 at 8:07 pm
            AshleyS
            Participant

              I was on Yervoy/Opdivo starting in March 2015. I received 3 doses but couldn't have the fourth dose due to side effects. In May 2015 scans showed my disease disappeared on my spine, all of my subcutaneous mets were gone, and the tumors on my liver were reduced by 95%. I started Opdivo mono therapy in June. In August 2015 I was stable. In November 2015 I received NED status and am still in that category! (Fingers crossed….I have scans in 2 weeks.)

              I hope that gives you some hope!

              Ashley

                • February 22, 2017 at 2:45 pm
                Coneflowers
                Participant
                  Thank you Ashley for sharing! So glad you are doing good, I’m sure your scans will be perfect!
                • February 21, 2017 at 9:06 pm
                ed williams
                Participant

                  Hi Coneflowers, this is one of the issue many of us are facing especially when the remaining tumor is not in a location  accessible to surgery. I have had stable scans for just over three years now with no change in the size of the tumor after an initial shrinkage, considered a partial responder in the study of Ipi/nivo checkmate 067. I have heard some Oncology speak about removing tumors and only finding them full of T-cell and not cancer. They show up on scans but there may not be any activity!!!! It is still early days for some of the questions that we have about long term use of the drugs and what the outcomes will be for partial responders. Best Wishes for you and your child!!!Ed

                    • February 22, 2017 at 3:33 pm
                    Coneflowers
                    Participant
                      Thank you so much Ed for replying. My daughter has many tumors inside. She also has one in her tibia bone. When we found out she was stage 4, it had a fracture in it. It has healed while on the Opdivo. She runs around on it like there is nothing there. Such a blessing!! It seems everyone has a different opinion as what to do with her treatment. Which makes it even harder. We are pretty sure she is the first baby to ever get Opdivo. She has done really well with it, you would not know she has all of this going on. I am so glad you are doing well, and thank you for sharing your story. It gives me hope!
                      • February 23, 2017 at 6:13 pm
                      Mat
                      Participant

                        Further to Ed's post, consider a PET scan at some point (keeping in mind radiation given her age).  This will show metabolic activity (if any).  In other words, it is possible that what shows up on the CT scan is dead tumor.  "No uptake" on a PET scan would not confirm this definitively, but would be a good indication.  Again, given her age, not sure I'd be clamoring for scans.

                        • February 24, 2017 at 8:47 am
                        Coneflowers
                        Participant
                          Thank you Mat for replying! She has had a PET scan each time along with MRI’s
                          Which I do not like, but her doctor feels important given melanoma’s nature and her amount of disease. Her PET scans have shown a little less activity each time, in almost all of her spots. A lymph node has bounced back and forth. She also has a skin tumor that has gotten alot flatter and a small hard spot in it, but shows up the same size on scans. Which really does not make sense to me…any thoughts in that? Not sure if that is bad or good. Thank you!
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