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Jumping in to Ipi/Nivo at Mayo Clinic in Jacksonville!
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Jumping in to Ipi/Nivo at Mayo Clinic in Jacksonville!

› Forums › General Melanoma Community › Jumping in to Ipi/Nivo at Mayo Clinic in Jacksonville!

  • Post
    • August 13, 2020 at 6:40 pm
    sing123
    Participant
      Can anyone share insight either about potential toxicity from the combo treatment or about getting treatment at Mayo? Or stories of success!

      I finished radiation to the mets in my brain a little over a month ago and have been off the last reduced amount of (reduced a while back to 2 mg and then 1 mg) Dexamentasone more than a week ago.

      Thanks so much again to those of you who’ve steered me towards this treatment. Very grateful.

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    • Replies
        • August 13, 2020 at 10:45 pm
        Edwin
        Participant
          I was very sick beginning a few days after my first ipi/nivo infusion, but this immunotherapy made the melanoma in my bones disappear. Contact your Mayo Clinic oncologist office promptly, if you have a worrying side effect.
            • August 14, 2020 at 11:28 am
            Johnjk04
            Participant
              Cindy, congratulations on completing the radiation. Now a series of Ippi/Nivo and you’ll be all set. In 2012, I had melanoma in the brain, a lot of my organs and the spinal cord. Craniotomy, Gamma Knifes and the Ippi/Nivo trial were my treatment path. Eight years later still NED. Completely agree with Edwin, if you have a suspect symptom, report it to your oncologist. They will know how to rectify the problem. Cindy, you got this, as they will say in the a Derby next month, you are in the home stretch.
              • August 14, 2020 at 12:10 pm
              Johnjk04
              Participant
                Cindy, sorry, not symptoms but side effects.
                • August 15, 2020 at 3:13 am
                sing123
                Participant
                  John, as always, thank you so much for your encouragement! And inspiring experience. You are one of the posters who steered me toward the combo.

                  Best to you!

                  • August 15, 2020 at 3:16 am
                  sing123
                  Participant
                    Edwin, thank you so much. I will definitely promptly reach out to Mayo if I feel any side effect. And wow, so glad to hear that the combo got rid of your bone cancer.

                    Best to you,

                    Cindy

                  • August 24, 2020 at 6:01 pm
                  Sharon93065
                  Participant
                    Re: Stage 4 Starting IPI/NIVO Sharon93065 – (8/24/2020 – 1:56pm)
                    I have not been on this forum in months. I will say this is the place to get the help from others that have gone on before us.
                    2017 stage 4 metastatic melanoma. Received 3 of 4 Opdivo/Yervoy. Then high liver numbers. After 4 months of Prednisone I was
                    put on Opdivo maintenance for 24 months. Petscans every 3 months. Tumors in lung, groin, armpit, back etc. Gone! Started shrinking right away.
                    Then after 2 years we stopped treatments. As he did with other patients like me. Supposed to have petscans every 3 months. Had one 2 days after after
                    7 months. We kept me out of driving all the way to Kaiser Woodland Hills because of virus. Phone appt Wed to verify results. I asked how other patients
                    were doing, he said there were 5 like me and the beast did not come back. I still have to take 125 mg of thyroid every day.
                    In the beginning treatment gave me rashes. So treat with eczema cream. Also take Benadryl at night for them. I still have fatigue. But I’m retired.
                    So this treatment works! Oh also get brain MRI’s to make sure not spread to brain it does I read in 60% but he said radiation would zap that if that happens.
                    Stay positive! Immunotherapy and prayer heals!
                    Sharon, Simi Valley
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