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Update on Helen. HELP NEEDED PLEASE.

Forums General Melanoma Community Update on Helen. HELP NEEDED PLEASE.

  • Post
    vicuk
    Participant

    So Helen has had latest scan and the melanoma is back. She was diagnosed 2. 5 years ago and was lucky enough to get on GSK MEK trial straight away.  Initially, the mel was in her ovary, her pelvis and her lungs. The trial drugs started work straight away and got rid of everything although her ovary was removed. The mel is back in her pelvis but her lungs and everywhere else are clear. Dr. says next step is Yervoy. Advice needed please. What are success rates with Ipi and where could we turn to after? We are in U.K so understand things will be different. She's my best friend and only 32. Ideas, advice and anything else.

    Kind regards,

    Vic.

Viewing 8 reply threads
  • Replies
      Cooper
      Participant

      You might want to post at http://www.melanomaforum.org as there are a lot of patients from the UK there.

      Cooper
      Participant

      You might want to post at http://www.melanomaforum.org as there are a lot of patients from the UK there.

      Cooper
      Participant

      You might want to post at http://www.melanomaforum.org as there are a lot of patients from the UK there.

        G-Samsa
        Participant

        Yervoy is a very good treatment option, and depending on what's offered in your geography may be the best immediate  treatment. It has been known to produce deep and very durable responses to melanoma.  Trouble is,  it's greatest response is limited to a small subset of the population and the medical profession doesn't have a handle on who will benefit the most from this treatment (more genetic research may be needed).  It can also take time to kick-in, and if the disease is aggressive may not provide enough runway, or  use the time better spent on faster acting treatments.   The newest treatments (anti-PD1) appear to be faster acting and effective on a larger sector of the melanoma population, though the jury is still out on durability ( there are also fewer side effects than Yervoy).  The hitch (at least in the US) is that the new class of treatment has only been approved by FDA after a demonstrated failure of Yervoy.   That said,  there are ongoing trials with Anti-PD1 drugs, including ones that combine it with  Yervoy.   Latest data show  this combination to be the most inclusive, with very deep response.  In theory, immuno-therapies work anywhere in the body, though bones are particularly challenging ( my own disease has definite deep resistant roots in the bones despite what I would consider effective treatment elsewhere).  So, I would never wave anyone off Yervoy–it has truly been a life raft for so many, but it's not a bad idea to survey the landscape a bit in the UK, even to talk with a melanoma specialist there ( if your friend's MD isn't recognized as such). 

         

        G-Samsa
        Participant

        Yervoy is a very good treatment option, and depending on what's offered in your geography may be the best immediate  treatment. It has been known to produce deep and very durable responses to melanoma.  Trouble is,  it's greatest response is limited to a small subset of the population and the medical profession doesn't have a handle on who will benefit the most from this treatment (more genetic research may be needed).  It can also take time to kick-in, and if the disease is aggressive may not provide enough runway, or  use the time better spent on faster acting treatments.   The newest treatments (anti-PD1) appear to be faster acting and effective on a larger sector of the melanoma population, though the jury is still out on durability ( there are also fewer side effects than Yervoy).  The hitch (at least in the US) is that the new class of treatment has only been approved by FDA after a demonstrated failure of Yervoy.   That said,  there are ongoing trials with Anti-PD1 drugs, including ones that combine it with  Yervoy.   Latest data show  this combination to be the most inclusive, with very deep response.  In theory, immuno-therapies work anywhere in the body, though bones are particularly challenging ( my own disease has definite deep resistant roots in the bones despite what I would consider effective treatment elsewhere).  So, I would never wave anyone off Yervoy–it has truly been a life raft for so many, but it's not a bad idea to survey the landscape a bit in the UK, even to talk with a melanoma specialist there ( if your friend's MD isn't recognized as such). 

         

        G-Samsa
        Participant

        Yervoy is a very good treatment option, and depending on what's offered in your geography may be the best immediate  treatment. It has been known to produce deep and very durable responses to melanoma.  Trouble is,  it's greatest response is limited to a small subset of the population and the medical profession doesn't have a handle on who will benefit the most from this treatment (more genetic research may be needed).  It can also take time to kick-in, and if the disease is aggressive may not provide enough runway, or  use the time better spent on faster acting treatments.   The newest treatments (anti-PD1) appear to be faster acting and effective on a larger sector of the melanoma population, though the jury is still out on durability ( there are also fewer side effects than Yervoy).  The hitch (at least in the US) is that the new class of treatment has only been approved by FDA after a demonstrated failure of Yervoy.   That said,  there are ongoing trials with Anti-PD1 drugs, including ones that combine it with  Yervoy.   Latest data show  this combination to be the most inclusive, with very deep response.  In theory, immuno-therapies work anywhere in the body, though bones are particularly challenging ( my own disease has definite deep resistant roots in the bones despite what I would consider effective treatment elsewhere).  So, I would never wave anyone off Yervoy–it has truly been a life raft for so many, but it's not a bad idea to survey the landscape a bit in the UK, even to talk with a melanoma specialist there ( if your friend's MD isn't recognized as such). 

         

        Cooper
        Participant

        There was discussion about PD1 being available in UK in expanded access:  http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=35458

        Cooper
        Participant

        There was discussion about PD1 being available in UK in expanded access:  http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=35458

        Cooper
        Participant

        There was discussion about PD1 being available in UK in expanded access:  http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=35458

      Ginger8888
      Participant

      I finished Yervoy Aug 13 and scans were in Sept..I had two spots in my lungs and one in my neck, the ones in my lungs are GONE and the one in my neck is half it size..Scans again in Dec..I had little to no side effects, drink plenty of water..I also drank V-8 juice..Good luck!

      Ginger8888
      Participant

      I finished Yervoy Aug 13 and scans were in Sept..I had two spots in my lungs and one in my neck, the ones in my lungs are GONE and the one in my neck is half it size..Scans again in Dec..I had little to no side effects, drink plenty of water..I also drank V-8 juice..Good luck!

      Ginger8888
      Participant

      I finished Yervoy Aug 13 and scans were in Sept..I had two spots in my lungs and one in my neck, the ones in my lungs are GONE and the one in my neck is half it size..Scans again in Dec..I had little to no side effects, drink plenty of water..I also drank V-8 juice..Good luck!

      vicuk
      Participant

      Thankyou all very much.

      vicuk
      Participant

      Thankyou all very much.

      vicuk
      Participant

      Thankyou all very much.

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