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Edwin

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      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
              In your place I would consider completing all 4 ipi/nivo immunotherapy infusions, whatever the CAT scan shows.

              I also had melanoma in my bones. I had significant pain for several months. I began Keytruda immunotherapy in November 2015. Walking became very painful in February 2016. A March 2016 PET scan showed that Keytruda treatments had failed. I began ipi/nivo immunotherapy in April 2016 and had my next PET scan in August 2016. My bone pain disappeared around the time I received my 4th infusion of ipi/nivo.

              Edwin
              Participant
                I was scheduled for a PET scan in August 2021. Because I was exposed to a person who tested positive for covid, my PET scan was postponed for 2 weeks. It showed that I was still NED.

                I now normally have PET scans every 6 months. I would have had a PET scan in early March, but I will be traveling in March and April. So, my next PET scan will be in early May. That will be 8 months between PET scans.

                Edwin
                Participant
                  I received Keytruda immunotherapy from November 2015 to February 2016. In that February walking became very painful. A March PET scan showed melanoma in several of my bones. I was switched from Keytruda to ipi/nivo immunotherapy followed by nivo alone. My bone cancer disappeared.

                  So, another treatment can sometimes work, if Keytruda immunotherapy fails.

                  You can and should go through with the scans. A PET scan in painless. Your oncologist needs the information from your scans.

                  Edwin
                  Participant
                    After my 1st ipi/nivo infusion I lost too much weight. I met with my cancer center dietitian. I ate more calorie dense food. I switched from skim milk to whole milk. I ate as much ice cream as I liked. I ate more often. After 9 weeks I had regained enough weight to receive my 2nd ipi/nivo infusion.
                    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.

                          Edwin
                          Participant
                            I have been NED for over 2 years.
                            Edwin
                            Participant
                              You had mets in your rib cage and have pain in your pelvic bones and right shoulder. My March 2016 PET scan showed melanoma in my right shoulder, some ribs, some vertebrae, pelvis and both femurs. My cancer was too widespread to consider palliative radiation. For you a CAT scan might help determine whether to do palliative radiation and where to direct it.
                              Edwin
                              Participant
                                In September 2015 I had radiation to a rib with melanoma. At the time that rib was my only bone with evidence of cancer. I had less pain in that rib after the radiation. However, melanoma spread to several more of my bones by March 2016.
                                Edwin
                                Participant
                                  I cracked 2 ribs in 2 separate falls. One cracked rib was in the front of my chest and the other one was on the right side of my chest. I had pain in a rib in my back due to melanoma in that rib. The cracked ribs made breathing painful. I felt pain in the rib with cancer, when I reached down to my bicycle down tube sift levers.

                                  I don’t know why your ribs are protruding. Your doctors should be able to tell you why.

                                  Edwin
                                  Participant
                                    I had nausea and diarrhea.
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