?? for long term IPI responders
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?? for long term IPI responders

› Forums › General Melanoma Community › ?? for long term IPI responders

  • Post
    • July 19, 2016 at 10:43 am
    Jewel
    Participant

    Hi there,

       My husband has been lucky enough to have responded to IPI this far. We will be having scans again in a few

    weeks that if hopefully NED will put him at the 2 yr mark. My ? is those of you who have responded long term

    were you on the 3mg or 10mg dose? Thanks for taking the time to reply.

    Jewel

Viewing 11 reply threads
  • Replies
      • July 19, 2016 at 2:23 pm
      JoshF
      Participant

      Hi Jewel-

      I had complete response but unfortunately lasted about a year or so. 2 years is a good mark but for more info I would check Bubbles (Celeste) blog, she has ton of info on this. I can tell you that all the melanoma specialists I've seen have told me that each year is crucial and after 3years the chances of recurrence go way down. Many of the onc's I saw were suprised I recurred even after a year. Praying for nothing but the best!!!

      Josh

      • July 19, 2016 at 2:23 pm
      JoshF
      Participant

      Hi Jewel-

      I had complete response but unfortunately lasted about a year or so. 2 years is a good mark but for more info I would check Bubbles (Celeste) blog, she has ton of info on this. I can tell you that all the melanoma specialists I've seen have told me that each year is crucial and after 3years the chances of recurrence go way down. Many of the onc's I saw were suprised I recurred even after a year. Praying for nothing but the best!!!

      Josh

      • July 19, 2016 at 2:23 pm
      JoshF
      Participant

      Hi Jewel-

      I had complete response but unfortunately lasted about a year or so. 2 years is a good mark but for more info I would check Bubbles (Celeste) blog, she has ton of info on this. I can tell you that all the melanoma specialists I've seen have told me that each year is crucial and after 3years the chances of recurrence go way down. Many of the onc's I saw were suprised I recurred even after a year. Praying for nothing but the best!!!

      Josh

        • July 19, 2016 at 3:49 pm
        Lee Parlier
        Participant

        Glad to hear your success Josh. I am currently receiving yervoy 10 mg. What mg were you? How were the overall side effects? Best of luck!!!

        • July 19, 2016 at 3:49 pm
        Lee Parlier
        Participant

        Glad to hear your success Josh. I am currently receiving yervoy 10 mg. What mg were you? How were the overall side effects? Best of luck!!!

        • July 19, 2016 at 3:49 pm
        Lee Parlier
        Participant

        Glad to hear your success Josh. I am currently receiving yervoy 10 mg. What mg were you? How were the overall side effects? Best of luck!!!

        • July 19, 2016 at 4:25 pm
        JoshF
        Participant

        Lee-

        I did the 3mg. Ipi for adjuvant wasn't approved when I first did it. I'm hoping to have some success with ipi the 2nd go around…wishing you the best!

        • July 19, 2016 at 4:25 pm
        JoshF
        Participant

        Lee-

        I did the 3mg. Ipi for adjuvant wasn't approved when I first did it. I'm hoping to have some success with ipi the 2nd go around…wishing you the best!

        • July 19, 2016 at 4:25 pm
        JoshF
        Participant

        Lee-

        I did the 3mg. Ipi for adjuvant wasn't approved when I first did it. I'm hoping to have some success with ipi the 2nd go around…wishing you the best!

        • July 19, 2016 at 8:34 pm
        Lee Parlier
        Participant

        Thanks..you too

        • July 19, 2016 at 8:34 pm
        Lee Parlier
        Participant

        Thanks..you too

        • July 19, 2016 at 8:34 pm
        Lee Parlier
        Participant

        Thanks..you too

      • July 19, 2016 at 10:10 pm
      MoiraM
      Participant

      I am not yet a long-term responder.

      I was on 3mg/kg Ipi, four infusions, no maintence treatments. This is the standard Ipi treatmnt in the UK. I am a complete responder with tumour shrinkage and I am NED by CT scan for one year. Like others, I have been told that I need to get to the 3 year mark without a reoccurence before my response would be considered long-term.

      My next scan is in a month's time.

      • July 19, 2016 at 10:10 pm
      MoiraM
      Participant

      I am not yet a long-term responder.

      I was on 3mg/kg Ipi, four infusions, no maintence treatments. This is the standard Ipi treatmnt in the UK. I am a complete responder with tumour shrinkage and I am NED by CT scan for one year. Like others, I have been told that I need to get to the 3 year mark without a reoccurence before my response would be considered long-term.

      My next scan is in a month's time.

      • July 19, 2016 at 10:10 pm
      MoiraM
      Participant

      I am not yet a long-term responder.

      I was on 3mg/kg Ipi, four infusions, no maintence treatments. This is the standard Ipi treatmnt in the UK. I am a complete responder with tumour shrinkage and I am NED by CT scan for one year. Like others, I have been told that I need to get to the 3 year mark without a reoccurence before my response would be considered long-term.

      My next scan is in a month's time.

      • July 21, 2016 at 4:30 am
      WITom
      Participant

      I am a complete responder who was on 10 mg for total of 6 infusions – had to stop after 6th secondary to severe colitis, now 5+ yrs since start of ipi RX and 3.5 yrs NED – I pray your husbands upcoming scans continue to show NED status!

      Tom

       

      • July 21, 2016 at 4:30 am
      WITom
      Participant

      I am a complete responder who was on 10 mg for total of 6 infusions – had to stop after 6th secondary to severe colitis, now 5+ yrs since start of ipi RX and 3.5 yrs NED – I pray your husbands upcoming scans continue to show NED status!

      Tom

       

      • July 21, 2016 at 4:30 am
      WITom
      Participant

      I am a complete responder who was on 10 mg for total of 6 infusions – had to stop after 6th secondary to severe colitis, now 5+ yrs since start of ipi RX and 3.5 yrs NED – I pray your husbands upcoming scans continue to show NED status!

      Tom

       

      • July 22, 2016 at 3:56 am
      Rocco
      Participant

      Hi Jewel,

      I had four doses of 10MG back in late 2008.  Have been NED since early 2009.  Now get scanned annually, but have had no other treatments since Ipi.  Any side effects cleared up in 2010.    Hope this helps.

      -Rocco

      Stage IV in 2005, NED since 2009, IPI responder

        • August 5, 2016 at 1:18 pm
        LizaC
        Participant
        Hi Rocca,
        My partner is stage IV, braf positive. Shes been on brafi and Keytruda, Responded to both, brafi for 12 mths, keytruda for 3 months, Keytruda saved her life until she gor resistant. She is now battling this horrible diease and will be starting IPI nextcweek. As you are an IPI responder, I was wondering what your braf status is and tumour burden pre IPI. Thank you, Liza.
        • August 5, 2016 at 1:18 pm
        LizaC
        Participant
        Hi Rocca,
        My partner is stage IV, braf positive. Shes been on brafi and Keytruda, Responded to both, brafi for 12 mths, keytruda for 3 months, Keytruda saved her life until she gor resistant. She is now battling this horrible diease and will be starting IPI nextcweek. As you are an IPI responder, I was wondering what your braf status is and tumour burden pre IPI. Thank you, Liza.
        • August 5, 2016 at 1:18 pm
        LizaC
        Participant
        Hi Rocca,
        My partner is stage IV, braf positive. Shes been on brafi and Keytruda, Responded to both, brafi for 12 mths, keytruda for 3 months, Keytruda saved her life until she gor resistant. She is now battling this horrible diease and will be starting IPI nextcweek. As you are an IPI responder, I was wondering what your braf status is and tumour burden pre IPI. Thank you, Liza.
      • July 22, 2016 at 3:56 am
      Rocco
      Participant

      Hi Jewel,

      I had four doses of 10MG back in late 2008.  Have been NED since early 2009.  Now get scanned annually, but have had no other treatments since Ipi.  Any side effects cleared up in 2010.    Hope this helps.

      -Rocco

      Stage IV in 2005, NED since 2009, IPI responder

      • July 22, 2016 at 3:56 am
      Rocco
      Participant

      Hi Jewel,

      I had four doses of 10MG back in late 2008.  Have been NED since early 2009.  Now get scanned annually, but have had no other treatments since Ipi.  Any side effects cleared up in 2010.    Hope this helps.

      -Rocco

      Stage IV in 2005, NED since 2009, IPI responder

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