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swissie

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      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

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      swissie
      Participant
      Its not possible to change after posting, right?
      I’m stage IIIb instead of II.

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      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!

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      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!

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      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!

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      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…

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      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…

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      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).

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      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

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      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

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      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

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      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

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      swissie
      Participant

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

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      swissie
      Participant

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

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      swissie
      Participant

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

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