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Edwin

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      Edwin
      Participant
        After my first infusion of Opdivo and Yervoy in 2016 for melanoma in several bones, I was very ill with very bad diarrhea and lost too much weight. I was given Opdivo only while I recovered. I received my 2nd infusion of Opdivo and Yervoy 9 weeks after my first. For my 2nd, 3rd and 4th infusion of Opdivo and Yervoy my dose of Yervoy was cut to 50% of my 1st dose. I felt much better with the 2nd, 3rd and 4th Opdivo and Yervoy immunotherapy. I received immunotherapy for 4 years 6 months. My most recents PET scans have shown no cancer.
        Edwin
        Participant
          After my first opdivo and yervoy immunotherapy for stage 4 melanoma 8 years ago, I could not concentrate enough to read. After a month or two, I could read again. There was melanoma in several of my bones, but none in my brain.
          Edwin
          Participant
            I received immunotherapy for melanoma in several bones. After cancer disappeared from my bones, a PET scan showed cancer in a lymph node. My oncologist sent me to talk with a surgeon, who said that surgery would not help. I was still receiving opdivo immunotherapy. I received radiation to that lymph node. This combination of radiation and immunotherapy seemed to work; the cancer disappeared.

            In September 2015 I received radiation to a rib with melanoma. That helped reduce the pain, but melanoma spread to several more bones. I began receiving immunotherapy in November 2015. I hope today the practice would be to start immunotherapy with or before radiation.

            Edwin
            Participant
              After my first infusion of opdivo and yervoy in 2016, I had very bad diarrhea and lost 11 lbs. 9 weeks later I had regained most of the lost weight and received my 2nd dose of opdivo and yervoy. My doctor reduced the dose of yervoy by 50%. I had much less side effects with my 2nd and 3rd opdivo and yervoy infusions.
              Edwin
              Participant
                My aunt Ruth had melanoma on a toe. At that time surgery was the only effective treatment for melanoma. Today we have immunotherapy.
                Edwin
                Participant
                  I had melanoma in several bones. After ipi/nivo immunotherapy followed by nivo alone, my bone cancer disappeared. Then cancer was found in a lymph node under my left jaw. My doctors decided that surgery would probably not help. I had radiation to that lymph node and continued nivo immunotherapy. Now PET scans show no evidence of melanoma.
                  Edwin
                  Participant
                    “58% SR after vervoy + opvido regime after 5 years.” Years ago I saw a similar 5 year SR with Vervoy and opvido as the initial treatment for people with stage 4 melanoma. People with stage 3 should do better.
                    Edwin
                    Participant
                      I hope your melanoma never comes back. I had skin melanoma in several bones and received several PET scans and one brain MRI. I received immunotherapy and my melanoma is gone. I now have a PET scan yearly. You might ask about a brain MRI, PET scans and immunotherapy.
                      Edwin
                      Participant
                        I received Zometa for perhaps 2 years while receiving immunotherapy for stage 4 melanoma. I did not ask for it. My oncologist chose it. I did not notice any problem with it. My oncologist stopped giving Zometa to me, when my bones healed and she decided its risks exceeded its benefits.
                        Edwin
                        Participant
                          Does anyone know how private replies are supposed to work on this forum? Who should be able to see a private reply?
                          Edwin
                          Participant
                            In 2015 my oncologist told me that chemotherapy does not work for melanoma, but immunotherapy sometimes works. I had bone cancer ( melanoma in my bones ).
                            Edwin
                            Participant
                              I received my 18th PET scan on May 8, 2023. I get a PET scan once a year now and see my oncologist every 6 months. She has been my oncologist since September 2014. I was diagnosed with stage 4 melanoma in August 2015. I received immunotherapy and radiation.
                              Edwin
                              Participant
                                I was NED 3 years after my 1st treatment and 2 1/2 years after beginning ipi/nivo immunotherapy. My 1st PET scan after completing 4 ipi/nivo infusions showed great improvement. Subsequent PET scans showed bone mets becoming less and less active. The melanoma met under my jaw became more active until treated by radiation.
                                Edwin
                                Participant
                                  I was not in a clinical trial. The FDA approved ipi/nivo immunotherapy as treatment for stage 4 melanoma a few months before I began this treatment.

                                  In 2016 immunotherapy drug makers recommended continuing immunotherapy for stage 4 melanoma until disease progression or unacceptable side effects. My oncologist following the advice of Dr Weber stopped my immunotherapy when I had been NED for 2 years.

                                  My bone pain became a little less painful two months after I began ipi/nivo treatment.

                                  Between August 2015 and August 2016 I expected to die within a year.

                                  Edwin
                                  Participant
                                    My 4th and last infusion of ipi/nivo was in July 2016. I received infusions of nivo from August 2016 until May 2020. I was tired for a couple days after an infusion of nivo. My 1st infusion of ipi/nivo gave me very bad diarrhea. I lost too much weight and had to wait 9 weeks for my 2nd infusion of ipi/nivo. I returned to work part time about 2 months after beginning ipi/nivo immunotherapy. I was well enough in October 2016 to take a 3 week vacation in Australia.

                                    In May 2018 I received radiation to a cancerous lymph node under my jaw. This was to treat the cancer. I had no pain due to this melanoma met. My health care team decided that radiation had a better chance of working than surgery would.

                                    I retired 4 years ago. I am 78 years old. Last summer I ran 8 miles or bicycled 24 miles on most days. I shoveled snow yesterday afternoon and this morning.

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