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Tsvetochka

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      Tsvetochka
      Participant
        I am also in Eastern Europe. πŸ™‚ I had Keytruda for Stage 4, and it worked well. My side effects were tiredness, a little bit if a rash, and eventually colitis and weight loss. We stopped before I got to a full response because of the colitis, but the immunotherapy kept working, and I reached NED soon after.
          Tsvetochka
          Participant
            Also, here they had me stay in the hospital for observation with the first infusion, but after that I didn’t have to stay.
          Tsvetochka
          Participant
            I was Stage 4. They only offered me Keytruda from the start. There was some talk of maybe doing surgery later, but It turned out that Keytruda was enough. My last PET scan showed NED, nothing bad left in those lymph nodes. So, I’m glad there wasn’t any surgery done.
            Tsvetochka
            Participant
              I was so glad to read this. You and I haven’t interacted much, but I pray for you.
              Tsvetochka
              Participant
                Mine showed up on my hands first, after I finished treatment. I had 11 rounds of Keytruda, the last in January. Sometime in February-March I started noticing white patches on my hands. Then, as I’ve been in the sun a little (no burns, just a little exposures) I’ve gotten it on my neck and forehead. I’m wondering if it will go away, or this is my new look?

                Also, I’m seeing my first few gray hairs. But maybe that’s because I’ll be 40 soon? πŸ™‚

                Tsvetochka
                Participant
                  I stopped Keytruda in January. Side effects were getting bad, and there wasn’t much cancer left. It was still there, though. The immunotherapy in my system must have kept working, because the next PET scan in April showed NED.
                  Tsvetochka
                  Participant
                    Keytruda alone got rid of it by my adrenal gland (9 cm!), and in my side, breast, lungs, and lymph nodes. I’ve only recently gotten the all clear, so I don’t know how long this will last, if it will come back, but it seems to have worked really well.
                    Tsvetochka
                    Participant
                      Thanks. That helps. Even if I have permanently traded in my old cast iron stomach, it is worth it to be rid of the melanoma!

                      I won’t see my cancer doctors again until July, but I’m also curious about what they might say. If I don’t start feeling better soon, I might go back to the gastroenterologist they sent me to before. I would like to wait out quarantine first, though….

                      Tsvetochka
                      Participant
                        Thank you for sharing her story. It is encouraging.

                        I have also gone from Stage 4 to NED just recently, and I am really hoping to stay clear. Also unknown primary here. Also Keytruda.

                        Tsvetochka
                        Participant
                          This is completely unscientific, but I have decided that my lymph nodes swell and hurt when they’re working. I mean, when they’re “processing” the dead cancer. I haven’t had radiation, but after I finished immunotherapy, I still had some tumours left. PET scan showed that they were inactive, but still there. Then my lymph nodes started hurting. They hurt worse and worse for a few weeks…and then the tumours were gone!

                          I was very nervous for those weeks, because it seemed to be getting worse, not better. I also had one node there with melanoma, and that was the area that was hurting the worst. But it was all for good. πŸ™‚

                          Tsvetochka
                          Participant
                            Thank you so much for sharing! Your flowers are beautiful, and so is your example to us. Spring is also a big part of my melanoma journey so far, but you show me what to dream about going forward.
                            Tsvetochka
                            Participant
                              That’s great! I think I’m right behind you, too. My timeline wasn’t so complicated, but I went from Stage 4 to NED (still waiting for confirmation about that) in almost exactly one year.
                              Tsvetochka
                              Participant
                                I live in Eastern Europe. I do have basic government insurance, but it definitely doesn’t cover any of this. I can and do “shop around” for independent labs for most things, but there’s only one place that does PET scans in the country. I’d much rather just keep doing CT scans, because, like you said, they’re only a few minutes, in and out. PET scans are not.
                                Tsvetochka
                                Participant
                                  That’s another issue. They’re expensive, and we pay for them, not insurance. Plus, I have to travel a long way to get to where they’re done.
                                  Tsvetochka
                                  Participant
                                    Thank you. That’s exactly the kind of info I was looking for: “In summary, patients with metastatic melanoma who achieve a CR with anti–PD-1 therapy have excellent long-term outcomes that endure for years after treatment discontinuation in the majority of patients. However, relapses are possible.”
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