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JudiAU

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      JudiAU
      Participant
        I had a lung biopsy to confirm type of cancer, although they thought it was likely melanoma. It hurt, more than I was prepared for. I took the rest of the day off. I may have had a bruise. I may have taken pain killer. I think my mom was still taking me to appointments then.
        JudiAU
        Participant
          Thanks this is really helpful.
          JudiAU
          Participant
            Vitiligo is thought to be a good sign but no, most people who are doing well on immunotherapy do not get it. Side effects do pop up late and after immunotherapy is complete but no I for one don’t have it.
            JudiAU
            Participant
              I would contact my oncogist and ask them to review the CT. They will have a sense on whether you should have a biopsy.
              JudiAU
              Participant
                I didn’t have genetic testing prior but a 2B usually involves a check of the lymph nodes. I never had genetic testing that early but I have no idea if that is the standard of care these days. Since it is your second melanoma maybe your doctor is being extra careful. Seems a reasonable approach.
                JudiAU
                Participant
                  Any chance you’ve had Covid? I’ve heard that description used many times. I now know so many weird and fascinating/icky facts about my body from being scanned so frequently.
                  JudiAU
                  Participant
                    Can you go to MD Anderson? I hear they have a very fine cancer department.
                    JudiAU
                    Participant
                      I am sorry she is in pain. I think it is pretty common to start drugs first and get them working in the body and then continue tumor removal and or radiation or all those things at the same time. Surgery and radiation can be layered on top of the immunotherapy when the tumor become painful. I’d think the drugs need a little more time to work.
                      JudiAU
                      Participant
                        I am really sorry to hear this. I think you need a melanoma specialist. Where geographically are you? We might need to make suggestions. There are quite a few trials that give access to the combo? IMHO a lot of surgeons are not great about follow up care. I’d guess you need to see an orthopedist to evaluate damage and do some physical therapy. Nerve damage can heal. Sometime PT can help you to learn to work around weaknesses.
                        JudiAU
                        Participant
                          In the US it is very common to treat side effects with steroids AND CONTINUE immunotherapy. It is a subject of some dispute but many cutting edge doctors consider it the best approach, sometimes layering radiation as well. Best
                          JudiAU
                          Participant
                            So this necrosis continues to expand but I do not have any symptoms so I am on nobody-is-really worried wait-and-see. Hopefully it will settle down. Ironic that I had a single radiation treatment to this area.
                            JudiAU
                            Participant
                              Ugh. I am sorry. Recovery stinks. And some things take longer to heal. And they hurt and itch and look wrong and have an emotional costs as well. Try and give yourself more time to process. It may help to go see a physical therapist who can help you move in a more comfortable way.
                              JudiAU
                              Participant
                                I’m think unfortunately the only thing you can do is wait for the biopsy. If it comes back bad, make sure you insist in a CT and brain MRI. I know this is frustrating.
                                JudiAU
                                Participant
                                  Wonderful. I love these LIVING stories.
                                  JudiAU
                                  Participant
                                    That is awful. I think you have to pressure them very hard to get appropriate pain relief.
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