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swissie
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swissie

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      • February 13, 2020 at 9:45 am
      swissie
      Participant
        Also not 15 years, but 10!.
        Melanoma in 2008, Stage IIIB in 2009.
        Double blind trial with ipi in 2009 – 2010.
        After unblinding last year i found out i was on the placebo – part.

        So stage IIIB WITHOUT treatment since 2009

        • February 12, 2020 at 10:21 am
        swissie
        Participant
          Its not possible to change after posting, right?
          I’m stage IIIb instead of II.
          • April 14, 2016 at 9:20 am
          swissie
          Participant

            I had a knee operation on the same leg as my melanoma and lymph-dissection (I'm stage IIIb).

            For me there was no option not to do an operation (I tore my ACL, PCL, MCL and meniscus). I was a bit scared of lymph oedema, so had some additional lymph massage and held my leg up on a regular basis.
            Luckily it all worked out for me.

            Good luck!

            • April 14, 2016 at 9:20 am
            swissie
            Participant

              I had a knee operation on the same leg as my melanoma and lymph-dissection (I'm stage IIIb).

              For me there was no option not to do an operation (I tore my ACL, PCL, MCL and meniscus). I was a bit scared of lymph oedema, so had some additional lymph massage and held my leg up on a regular basis.
              Luckily it all worked out for me.

              Good luck!

              • April 14, 2016 at 9:20 am
              swissie
              Participant

                I had a knee operation on the same leg as my melanoma and lymph-dissection (I'm stage IIIb).

                For me there was no option not to do an operation (I tore my ACL, PCL, MCL and meniscus). I was a bit scared of lymph oedema, so had some additional lymph massage and held my leg up on a regular basis.
                Luckily it all worked out for me.

                Good luck!

                • December 3, 2015 at 12:20 pm
                swissie
                Participant

                  Hi Michele,

                  I wa one of the participants of the original trial with stage III, with the 10mg. At that moment (2008) there was no other option except from interferon, so I participated.

                  It was a double blind with 50% getting the ipi and the other 50% getting a placebo.
                  At the beginning I did have the idea I received the actual medication (rash, tiredness, headaches) but off course I was not sure.

                  I had a colitis after my 4th infusion and I can tell you, in my case it was very, very obvious it was colitis and nothing else. I have never felt anything like that. Can't really explain anymore, but when I was laying on the floor next to the toilet I knew this was not a normal stomach problem.
                  I received steroids and it was gone within a couple of hours.

                  Wish all of you all the best.
                  I am one of the lucky 50% in the 5 years survival statistics, not sure if that's due to ipi, but I'm still here so who cares…

                  • December 3, 2015 at 12:20 pm
                  swissie
                  Participant

                    Hi Michele,

                    I wa one of the participants of the original trial with stage III, with the 10mg. At that moment (2008) there was no other option except from interferon, so I participated.

                    It was a double blind with 50% getting the ipi and the other 50% getting a placebo.
                    At the beginning I did have the idea I received the actual medication (rash, tiredness, headaches) but off course I was not sure.

                    I had a colitis after my 4th infusion and I can tell you, in my case it was very, very obvious it was colitis and nothing else. I have never felt anything like that. Can't really explain anymore, but when I was laying on the floor next to the toilet I knew this was not a normal stomach problem.
                    I received steroids and it was gone within a couple of hours.

                    Wish all of you all the best.
                    I am one of the lucky 50% in the 5 years survival statistics, not sure if that's due to ipi, but I'm still here so who cares…

                    • February 20, 2020 at 3:56 pm
                    swissie
                    Participant
                      It was the EORTC 18071.
                      Double blind 10 mg/kg ipi or placebo. I started it in 2009.
                      I’m one if the lucky 31% recurrence free after 7 years (it’s even 10 now).
                      • February 20, 2020 at 1:50 pm
                      swissie
                      Participant
                        Thanks for your reply Melanie.
                        Yes I am trying to keep busy, which is some days just easier than others. Luckily I am super busy at work, so that keeps my mind off things.
                        And I like to help my friend, which takes my mind of my own problems. It’s just those moments in between that sometimes make it difficult.
                        And you are right, i updated my history. Yes, I am officially untreated (they unblinded the trial last year)

                        My last mole removal was in 2015, my last scan in 2016. I am glad to say the whole melanoma was not always on my mind. Until last year I was under the impression I had received ipi.
                        Its scary to be back in the waiting game

                        • December 8, 2015 at 5:50 am
                        swissie
                        Participant

                          Interesting that your oncologist is not a believer in scans as the primary means of detecting a recurrence.
                          What does he suggest?

                          Thanks,
                          Sabine

                          • December 8, 2015 at 5:50 am
                          swissie
                          Participant

                            Interesting that your oncologist is not a believer in scans as the primary means of detecting a recurrence.
                            What does he suggest?

                            Thanks,
                            Sabine

                            • December 8, 2015 at 5:50 am
                            swissie
                            Participant

                              Interesting that your oncologist is not a believer in scans as the primary means of detecting a recurrence.
                              What does he suggest?

                              Thanks,
                              Sabine

                              • December 3, 2015 at 3:54 pm
                              swissie
                              Participant

                                It is cured by steroids. In my case within a couple of hours!

                                • December 3, 2015 at 3:54 pm
                                swissie
                                Participant

                                  It is cured by steroids. In my case within a couple of hours!

                                  • December 3, 2015 at 3:54 pm
                                  swissie
                                  Participant

                                    It is cured by steroids. In my case within a couple of hours!

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