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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!

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      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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          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.
              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.
                Cindy, sorry, not symptoms but side effects.
                  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!

                    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,


                    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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