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I’m still NED! Treatment Stopped!
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I’m still NED! Treatment Stopped!

› Forums › General Melanoma Community › I’m still NED! Treatment Stopped!

  • Post
    • January 12, 2020 at 4:18 am
    Sharon93065
    Participant
      In a nutshell, diagnosed 4/17, 3 treatments of Opdivo/Yervoy starting May 2016. Then stopped due to high liver numbers.

      Jan 2017 to Jan 2019 every 2 weeks Opdivo infusions with Petscans every 3 months, bloodwork every 2 weeks. Newest Petscan
      showed still no tumors. So Dr stopped Opdivo. He said that I am one of 3 of his patients that hit the 2 year mark NED. I also
      met another patient at Kaiser with a different doctor that is also NED and treatments stopped. We were all Stage 4 Metastatic Melanoma.
      PTL!
      So now I might be around awhile I need to start dealing with cholesterol, and normal regular life stuff. Arthritis.
      Before it was “why buy new shoes, I won’t be here next year to wear them?”
      I would like to thank other patients for all your support and advise. Bubbles, Ed Williams, the two Jenny’s and others.
      I still have to take 125 of thyroid meds daily and have fatigue. A little brain fatigue. But I’ve had 5 brain MRI’s in the 3 years, and very high doses of
      Prednisone for 4 months to bring my liver numbers in balance.e before starting the opdivo maintenance.
      Sharon, Simi Valley, CA
      Dr. Wang, Kaiser, Woodland Hills, CA

    Viewing 3 reply threads
    • Replies
        • January 12, 2020 at 4:23 am
        Sharon93065
        Participant
          It started out looking like lunch cancer, tumors in chest, armpit, groin, lump on back etc.
          There is hope!
            • January 12, 2020 at 4:37 am
            JudiAU
            Participant
              Oh that is so wonderful— buy the shoes!
              • January 13, 2020 at 10:02 pm
              jbronicki
              Participant
                That is wonderful news, we will always celebrate NED around here! I agree with Judi, it is shoe shopping time. Congratulations, Jackie
              • January 14, 2020 at 2:35 am
              Bubbles
              Participant
                Congratulations, Sharon! That is wonderful news!

                I understand the difficulty “looking forward” or dealing with mundane health “care” when dealing with melanoma!!! Here are a couple of posts you may find in accord with your sentiments ~

                This one from September 2010, when I was post SRS to a brain met and s/p surgical removal of the right upper lobe of my lung which both took place in April – but with NO access to any other treatment as I did not find my phase 1 nivo trial until December of that year: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2010/09/looking-forward.html

                This one is from 2016, 3 years after completing my trial and remaining NED for melanoma and deciding – yeah, well – I probably SHOULD check my lipids and such at a REGULAR doctor’s visit: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=lipid

                Good luck! Enjoy those shoes! celeste

                • January 15, 2020 at 3:48 am
                MikeInAK
                Participant
                  That’s great news Sharon! One year of bi-weekly Opdivo treatments with blood tests day before was very wearing, I’m impressed you went through 2 years, good for you sticking with it!

                  Hope you find some awesome shoes!

                  • January 15, 2020 at 3:48 am
                  MikeInAK
                  Participant
                    That’s great news Sharon! One year of bi-weekly Opdivo treatments with blood tests day before was very wearing, I’m impressed you went through 2 years, good for you sticking with it!

                    Hope you find some awesome shoes!

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