What I learned at 15 mo f/u of Nivo trial…
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What I learned at 15 mo f/u of Nivo trial…

› Forums › General Melanoma Community › What I learned at 15 mo f/u of Nivo trial…

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      • September 21, 2014 at 1:58 am
      Bubbles
      Participant

      Don't know how that posted anon!!! love, c

      • September 21, 2014 at 1:58 am
      Bubbles
      Participant

      Don't know how that posted anon!!! love, c

      • September 21, 2014 at 1:58 am
      Bubbles
      Participant

      Don't know how that posted anon!!! love, c

      • September 21, 2014 at 2:46 am
      BrianP
      Participant

      Great post Celeste!  It was almost like I was going through the TSA checkpoint and sitting in the waiting room with you.  Looking forward to the future immune memory discussion.

      Did you see the video that Brent posted in my Nivo/ODO combo thread?  Dr. Weber sure is high on the Ipi/nivo concurrent combo in the adjuvant setting.

        • September 21, 2014 at 2:48 am
        BrianP
        Participant

        That should be pembro/IDO thread.  Time for bed!

        • September 21, 2014 at 7:57 pm
        Bubbles
        Participant

        Yes, I saw that.  Weber does think that since that combo has been so effective for non-resected melanoma patients…it holds real promise for preventing additional disease in NED patients…and as my post noted…is opening 1,500 more slots!!!  Pretty awesome!  c

        PS..glad you were able to travel with me!!  Hee hee!

        • September 21, 2014 at 7:57 pm
        Bubbles
        Participant

        Yes, I saw that.  Weber does think that since that combo has been so effective for non-resected melanoma patients…it holds real promise for preventing additional disease in NED patients…and as my post noted…is opening 1,500 more slots!!!  Pretty awesome!  c

        PS..glad you were able to travel with me!!  Hee hee!

        • September 21, 2014 at 7:57 pm
        Bubbles
        Participant

        Yes, I saw that.  Weber does think that since that combo has been so effective for non-resected melanoma patients…it holds real promise for preventing additional disease in NED patients…and as my post noted…is opening 1,500 more slots!!!  Pretty awesome!  c

        PS..glad you were able to travel with me!!  Hee hee!

        • September 21, 2014 at 2:48 am
        BrianP
        Participant

        That should be pembro/IDO thread.  Time for bed!

        • September 21, 2014 at 2:48 am
        BrianP
        Participant

        That should be pembro/IDO thread.  Time for bed!

      • September 21, 2014 at 2:46 am
      BrianP
      Participant

      Great post Celeste!  It was almost like I was going through the TSA checkpoint and sitting in the waiting room with you.  Looking forward to the future immune memory discussion.

      Did you see the video that Brent posted in my Nivo/ODO combo thread?  Dr. Weber sure is high on the Ipi/nivo concurrent combo in the adjuvant setting.

      • September 21, 2014 at 2:46 am
      BrianP
      Participant

      Great post Celeste!  It was almost like I was going through the TSA checkpoint and sitting in the waiting room with you.  Looking forward to the future immune memory discussion.

      Did you see the video that Brent posted in my Nivo/ODO combo thread?  Dr. Weber sure is high on the Ipi/nivo concurrent combo in the adjuvant setting.

      • September 21, 2014 at 10:42 pm
      ksg1111@sbcglobal.net
      Participant

      Hi, Sounds great. Do you know if the trial might be open for those who were are NED but were in a different trial ior location? Is it just for those in your Moffitt trial? The NIH listing seems to exclude former PD 1 so I'm confused.Thank you.

        • September 21, 2014 at 11:02 pm
        Bubbles
        Participant

        If you are referring to the nivo/ipi trial I mentioned….YES,  it is for NED folks. I don't know of any other location other than Moffitt…but many people travel there for care.  There are assistance programs to defray costs if that is an issue.  Unfortunately…though it sort of makes sense from the trial stand-point…if you have had anti-PD1, anti-PDL1, anti-PDL2 or ipi would be excluded.  Not sure if this answers your question.  Hope this helps.  Yours, Celeste

        • September 22, 2014 at 12:12 am
        Bubbles
        Participant

        PS…If you are NED after anti-PD1 (or any of the other therapies), I'm not sure why you would be looking for another trial anyway.  Anyhow…hope this information is helpful.  C

        • September 22, 2014 at 4:37 am
        ksg1111@sbcglobal.net
        Participant

        Sorry to sound so confused, but aren't you saying that you are NED after being on a PD-1/ipi trial, so how are you eligible for this follow up, then? Were you on  a different trial that has resulted in your being NED?

        I thought I understood Dr. Weber to say that continuing with PD-1 was a good idea, even for those who may be NED, which is why I am looking, still (not to mention that one never knows when the NED status could be suddenly gone!)

        thank you.

        • September 22, 2014 at 10:25 am
        Bubbles
        Participant

        I understand now.  I was in a Nivo/multipeptide trial, the NED arm…from the start…that I began in 2010 and was given my last dose of nivo 15 months ago.  I am still part of that trial, in a way, but get only "follow-up" checks every 6 months. I remain NED.  Weber actually said in the video/conference (see post on MPIP below or on my blog) from Paris in July….that since in his studies with nivo that have an end point of dosing after 2 1/2 years have performed as well as taking the drug "forever"….he WONDERS if the protocol of taking anti-PD1 infusions longer than that, "until disease progression" as Pembro (now Keytruda) has adopted….is really necessary.  It is a question he has thought about a lot…but only time will give us the answer.  Hope that helps.  I try to keep putting info out there.  Trials are rare for NED folks.  And for those who are NED only secondary to surgical or SRS removal, an immunotherapy trial like the nivo/ipi one may actually prevent recurrance.  Hopefully, folks like myself, now post anti-PD1 (or other immunotherapy) will not progress….though….only time will tell!!  So…I understand…keeping up with things and thinking about additional steps, if needed, is not a bad plan.

        Celeste

        • September 22, 2014 at 10:25 am
        Bubbles
        Participant

        I understand now.  I was in a Nivo/multipeptide trial, the NED arm…from the start…that I began in 2010 and was given my last dose of nivo 15 months ago.  I am still part of that trial, in a way, but get only "follow-up" checks every 6 months. I remain NED.  Weber actually said in the video/conference (see post on MPIP below or on my blog) from Paris in July….that since in his studies with nivo that have an end point of dosing after 2 1/2 years have performed as well as taking the drug "forever"….he WONDERS if the protocol of taking anti-PD1 infusions longer than that, "until disease progression" as Pembro (now Keytruda) has adopted….is really necessary.  It is a question he has thought about a lot…but only time will give us the answer.  Hope that helps.  I try to keep putting info out there.  Trials are rare for NED folks.  And for those who are NED only secondary to surgical or SRS removal, an immunotherapy trial like the nivo/ipi one may actually prevent recurrance.  Hopefully, folks like myself, now post anti-PD1 (or other immunotherapy) will not progress….though….only time will tell!!  So…I understand…keeping up with things and thinking about additional steps, if needed, is not a bad plan.

        Celeste

        • September 22, 2014 at 10:25 am
        Bubbles
        Participant

        I understand now.  I was in a Nivo/multipeptide trial, the NED arm…from the start…that I began in 2010 and was given my last dose of nivo 15 months ago.  I am still part of that trial, in a way, but get only "follow-up" checks every 6 months. I remain NED.  Weber actually said in the video/conference (see post on MPIP below or on my blog) from Paris in July….that since in his studies with nivo that have an end point of dosing after 2 1/2 years have performed as well as taking the drug "forever"….he WONDERS if the protocol of taking anti-PD1 infusions longer than that, "until disease progression" as Pembro (now Keytruda) has adopted….is really necessary.  It is a question he has thought about a lot…but only time will give us the answer.  Hope that helps.  I try to keep putting info out there.  Trials are rare for NED folks.  And for those who are NED only secondary to surgical or SRS removal, an immunotherapy trial like the nivo/ipi one may actually prevent recurrance.  Hopefully, folks like myself, now post anti-PD1 (or other immunotherapy) will not progress….though….only time will tell!!  So…I understand…keeping up with things and thinking about additional steps, if needed, is not a bad plan.

        Celeste

        • September 22, 2014 at 4:37 am
        ksg1111@sbcglobal.net
        Participant

        Sorry to sound so confused, but aren't you saying that you are NED after being on a PD-1/ipi trial, so how are you eligible for this follow up, then? Were you on  a different trial that has resulted in your being NED?

        I thought I understood Dr. Weber to say that continuing with PD-1 was a good idea, even for those who may be NED, which is why I am looking, still (not to mention that one never knows when the NED status could be suddenly gone!)

        thank you.

        • September 22, 2014 at 4:37 am
        ksg1111@sbcglobal.net
        Participant

        Sorry to sound so confused, but aren't you saying that you are NED after being on a PD-1/ipi trial, so how are you eligible for this follow up, then? Were you on  a different trial that has resulted in your being NED?

        I thought I understood Dr. Weber to say that continuing with PD-1 was a good idea, even for those who may be NED, which is why I am looking, still (not to mention that one never knows when the NED status could be suddenly gone!)

        thank you.

        • September 22, 2014 at 12:12 am
        Bubbles
        Participant

        PS…If you are NED after anti-PD1 (or any of the other therapies), I'm not sure why you would be looking for another trial anyway.  Anyhow…hope this information is helpful.  C

        • September 22, 2014 at 12:12 am
        Bubbles
        Participant

        PS…If you are NED after anti-PD1 (or any of the other therapies), I'm not sure why you would be looking for another trial anyway.  Anyhow…hope this information is helpful.  C

        • September 21, 2014 at 11:02 pm
        Bubbles
        Participant

        If you are referring to the nivo/ipi trial I mentioned….YES,  it is for NED folks. I don't know of any other location other than Moffitt…but many people travel there for care.  There are assistance programs to defray costs if that is an issue.  Unfortunately…though it sort of makes sense from the trial stand-point…if you have had anti-PD1, anti-PDL1, anti-PDL2 or ipi would be excluded.  Not sure if this answers your question.  Hope this helps.  Yours, Celeste

        • September 21, 2014 at 11:02 pm
        Bubbles
        Participant

        If you are referring to the nivo/ipi trial I mentioned….YES,  it is for NED folks. I don't know of any other location other than Moffitt…but many people travel there for care.  There are assistance programs to defray costs if that is an issue.  Unfortunately…though it sort of makes sense from the trial stand-point…if you have had anti-PD1, anti-PDL1, anti-PDL2 or ipi would be excluded.  Not sure if this answers your question.  Hope this helps.  Yours, Celeste

      • September 21, 2014 at 10:42 pm
      ksg1111@sbcglobal.net
      Participant

      Hi, Sounds great. Do you know if the trial might be open for those who were are NED but were in a different trial ior location? Is it just for those in your Moffitt trial? The NIH listing seems to exclude former PD 1 so I'm confused.Thank you.

      • September 21, 2014 at 10:42 pm
      ksg1111@sbcglobal.net
      Participant

      Hi, Sounds great. Do you know if the trial might be open for those who were are NED but were in a different trial ior location? Is it just for those in your Moffitt trial? The NIH listing seems to exclude former PD 1 so I'm confused.Thank you.

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