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.
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.
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.
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.
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…
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…
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).
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
