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Has anyone done PD-1 or PDL-1 not sure of spelling

Forums General Melanoma Community Has anyone done PD-1 or PDL-1 not sure of spelling

  • Post
    Beckyinsandiego
    Participant
    I am suppose to have Yervoy soon , Ipi, and I keep hearing about this trial called PD-1 or PDL-1. I’ve had quite a Few
    People from the bulletin board tell me to hold off on Ipi and try to get into this other trial. So now I’m totally confused. Can anyone share their knowledge on this and if you are in
    The trial and what the side effects are like. Sometimes it’s more stressful trying to figure out what treatment to do than having cancer itself. Everyone wants to tell you what to do and where to go.

    Becky Stage IV

    I am suppose to have Yervoy soon , Ipi, and I keep hearing about this trial called PD-1 or PDL-1. I’ve had quite a Few
    People from the bulletin board tell me to hold off on Ipi and try to get into this other trial. So now I’m totally confused. Can anyone share their knowledge on this and if you are in
    The trial and what the side effects are like. Sometimes it’s more stressful trying to figure out what treatment to do than having cancer itself. Everyone wants to tell you what to do and where to go.

    Becky Stage IV

Viewing 14 reply threads
  • Replies
      jim Breitfeller
      Participant

       alan kravitz says:

      I am a survivor of Stage IV Metastatic Melanoma after two years in the Phase 1B TRIAL of anti Pd-1/MDX-1106. I completed my treatments in August of 2010 and remain NED. I am interested in organizing other survivors to launch a serious advocacy effort on the part of. survivors. I have posted my thoughts on the Forums of the Melanoma International Foundation and several other locations. The effort would be modeled on those that targeted HIV and AIDS. If interested, contact me directly at Alankravitz@aol.com.

       

      Lynn Luckeroth says:

      I did two 12 week trials (every other week) with MDX 1106 and 6 peptides titled” Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy Comprising gp100:209-217(210M) Peptide, MART-1:26-35(27L) Peptide, gp100:280-288(288V) Peptide, NY-ESO-1 Peptide, and Montanide ISA 51 VG in Patients With Resected Stage IV Melanoma ”

      I am now receiving booster IV’s of MDX 1106 every 3 months- having my firt booster on June 8th, 2011. I am stage 4 melanoma NED since March 26, 2010 ( 15 months)

      best regards,

      Jimmy B

       

       

      jim Breitfeller
      Participant

       alan kravitz says:

      I am a survivor of Stage IV Metastatic Melanoma after two years in the Phase 1B TRIAL of anti Pd-1/MDX-1106. I completed my treatments in August of 2010 and remain NED. I am interested in organizing other survivors to launch a serious advocacy effort on the part of. survivors. I have posted my thoughts on the Forums of the Melanoma International Foundation and several other locations. The effort would be modeled on those that targeted HIV and AIDS. If interested, contact me directly at Alankravitz@aol.com.

       

      Lynn Luckeroth says:

      I did two 12 week trials (every other week) with MDX 1106 and 6 peptides titled” Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy Comprising gp100:209-217(210M) Peptide, MART-1:26-35(27L) Peptide, gp100:280-288(288V) Peptide, NY-ESO-1 Peptide, and Montanide ISA 51 VG in Patients With Resected Stage IV Melanoma ”

      I am now receiving booster IV’s of MDX 1106 every 3 months- having my firt booster on June 8th, 2011. I am stage 4 melanoma NED since March 26, 2010 ( 15 months)

      best regards,

      Jimmy B

       

       

      jim Breitfeller
      Participant

       alan kravitz says:

      I am a survivor of Stage IV Metastatic Melanoma after two years in the Phase 1B TRIAL of anti Pd-1/MDX-1106. I completed my treatments in August of 2010 and remain NED. I am interested in organizing other survivors to launch a serious advocacy effort on the part of. survivors. I have posted my thoughts on the Forums of the Melanoma International Foundation and several other locations. The effort would be modeled on those that targeted HIV and AIDS. If interested, contact me directly at Alankravitz@aol.com.

       

      Lynn Luckeroth says:

      I did two 12 week trials (every other week) with MDX 1106 and 6 peptides titled” Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy Comprising gp100:209-217(210M) Peptide, MART-1:26-35(27L) Peptide, gp100:280-288(288V) Peptide, NY-ESO-1 Peptide, and Montanide ISA 51 VG in Patients With Resected Stage IV Melanoma ”

      I am now receiving booster IV’s of MDX 1106 every 3 months- having my firt booster on June 8th, 2011. I am stage 4 melanoma NED since March 26, 2010 ( 15 months)

      best regards,

      Jimmy B

       

       

      killmel
      Participant

      Hi Becky,

      I have no experience with PD1.

      I would recommend you contact your doctor ASAP who prescribed IPI and get his opinion before you go through all the hassles of get insurance approvals, etc.

      Your doctor is the best person to explain PD1 to you.

      killmel
      Participant

      Hi Becky,

      I have no experience with PD1.

      I would recommend you contact your doctor ASAP who prescribed IPI and get his opinion before you go through all the hassles of get insurance approvals, etc.

      Your doctor is the best person to explain PD1 to you.

      killmel
      Participant

      Hi Becky,

      I have no experience with PD1.

      I would recommend you contact your doctor ASAP who prescribed IPI and get his opinion before you go through all the hassles of get insurance approvals, etc.

      Your doctor is the best person to explain PD1 to you.

      jim Breitfeller
      Participant

      Becky,

      Other patients are trying to tell you that if you do Ipi (Yervoy) first, and doesn't produce an immune response, then it may disqualify you from doing PD-1 or PD-L1 therapies.

      Each trial have their own exclusion criteria. If you think you might want to do PD-1 therapy, you have to do it before Ipi. Ipi is now a FDA approved Drug here in the States. PD-1 on the other hand is still in clinical trials.

       

      Example of exclusion criteria for  a PD-1 trial

      PRIOR CONCURRENT THERAPY:

      • See Disease Characteristics
      • No prior therapy with an anti-PD-1, anti-PD-L1, anti-PDL-2, or anti-CTLA-4 antibody (or any other antibody targeting T-cell costimulation pathways)

       

      What I am trying to say is choose your therapy wisely.

        momof2kids
        Participant

        Everyone is talking about this PD1 and PDL1….however, the trials aren't everywhere , so you'd have to travel.  Heck, I live in Pittsburgh, and go to the Hillman Center, which I was told is one of the top cancer centers, and I can't even find a listing for a trial here for it, so I don't know how everyone is supposed to try to get into it!

        I am going to ask my doctor about it when I see him next Friday, just to find out more information from them.

        I just hope it becomes an actual FDA approved treatment sometime soon, so ALL OF US can have the benefit of using it. I hope no red tape, or government garbage will end up holding it up somewhere along the line for those of us who greatly need these treatments.

         

        jim Breitfeller
        Participant

        momod2kids,

        I also went to the Hillman Center and actually Dr. Kirkwood is still my Oncologist.

        Anti-PD-1 and PD-L1 are relativley new to come to clinical trials. The location are mainly on east coast.  Yale, Sloan Kettering, John Hopkins, Moffit Center in Flordia. A new study is just recruiting with another version of PD-1 called AMP-224. Trial Lcations are as Follow:

        Locations

         

        United States, Michigan
        Karmanos Cancer Institute Recruiting
        Detroit, Michigan, United States, 48201
        Contact: Erica Brennan     313-576-9816     brennane@karmanos.org    
        Contact: Karen Forman     313-576-8096     formank@karmanos.org    
        Principal Investigator: Patricia LoRusso, DO            
        United States, North Carolina
        Carolina BioOncology Institute Recruiting
        Huntersville, North Carolina, United States, 28078
        Contact: Jahleen Byers     704-947-6599     jbyers@carolinabiooncology.org    
        Principal Investigator: John Powderly, MD            
        United States, Tennessee
        Sarah Cannon Research Institute Recruiting
        Nashville, Tennessee, United States, 37203
        Contact: Patient Referral Line     615-339-4214        
        Principal Investigator: Jeffrey Infante, MD            

        Best regards,

        Jimmy B

        jim Breitfeller
        Participant

        momod2kids,

        I also went to the Hillman Center and actually Dr. Kirkwood is still my Oncologist.

        Anti-PD-1 and PD-L1 are relativley new to come to clinical trials. The location are mainly on east coast.  Yale, Sloan Kettering, John Hopkins, Moffit Center in Flordia. A new study is just recruiting with another version of PD-1 called AMP-224. Trial Lcations are as Follow:

        Locations

         

        United States, Michigan
        Karmanos Cancer Institute Recruiting
        Detroit, Michigan, United States, 48201
        Contact: Erica Brennan     313-576-9816     brennane@karmanos.org    
        Contact: Karen Forman     313-576-8096     formank@karmanos.org    
        Principal Investigator: Patricia LoRusso, DO            
        United States, North Carolina
        Carolina BioOncology Institute Recruiting
        Huntersville, North Carolina, United States, 28078
        Contact: Jahleen Byers     704-947-6599     jbyers@carolinabiooncology.org    
        Principal Investigator: John Powderly, MD            
        United States, Tennessee
        Sarah Cannon Research Institute Recruiting
        Nashville, Tennessee, United States, 37203
        Contact: Patient Referral Line     615-339-4214        
        Principal Investigator: Jeffrey Infante, MD            

        Best regards,

        Jimmy B

        jim Breitfeller
        Participant

        momod2kids,

        I also went to the Hillman Center and actually Dr. Kirkwood is still my Oncologist.

        Anti-PD-1 and PD-L1 are relativley new to come to clinical trials. The location are mainly on east coast.  Yale, Sloan Kettering, John Hopkins, Moffit Center in Flordia. A new study is just recruiting with another version of PD-1 called AMP-224. Trial Lcations are as Follow:

        Locations

         

        United States, Michigan
        Karmanos Cancer Institute Recruiting
        Detroit, Michigan, United States, 48201
        Contact: Erica Brennan     313-576-9816     brennane@karmanos.org    
        Contact: Karen Forman     313-576-8096     formank@karmanos.org    
        Principal Investigator: Patricia LoRusso, DO            
        United States, North Carolina
        Carolina BioOncology Institute Recruiting
        Huntersville, North Carolina, United States, 28078
        Contact: Jahleen Byers     704-947-6599     jbyers@carolinabiooncology.org    
        Principal Investigator: John Powderly, MD            
        United States, Tennessee
        Sarah Cannon Research Institute Recruiting
        Nashville, Tennessee, United States, 37203
        Contact: Patient Referral Line     615-339-4214        
        Principal Investigator: Jeffrey Infante, MD            

        Best regards,

        Jimmy B

        momof2kids
        Participant

        Everyone is talking about this PD1 and PDL1….however, the trials aren't everywhere , so you'd have to travel.  Heck, I live in Pittsburgh, and go to the Hillman Center, which I was told is one of the top cancer centers, and I can't even find a listing for a trial here for it, so I don't know how everyone is supposed to try to get into it!

        I am going to ask my doctor about it when I see him next Friday, just to find out more information from them.

        I just hope it becomes an actual FDA approved treatment sometime soon, so ALL OF US can have the benefit of using it. I hope no red tape, or government garbage will end up holding it up somewhere along the line for those of us who greatly need these treatments.

         

        momof2kids
        Participant

        Everyone is talking about this PD1 and PDL1….however, the trials aren't everywhere , so you'd have to travel.  Heck, I live in Pittsburgh, and go to the Hillman Center, which I was told is one of the top cancer centers, and I can't even find a listing for a trial here for it, so I don't know how everyone is supposed to try to get into it!

        I am going to ask my doctor about it when I see him next Friday, just to find out more information from them.

        I just hope it becomes an actual FDA approved treatment sometime soon, so ALL OF US can have the benefit of using it. I hope no red tape, or government garbage will end up holding it up somewhere along the line for those of us who greatly need these treatments.

         

      jim Breitfeller
      Participant

      Becky,

      Other patients are trying to tell you that if you do Ipi (Yervoy) first, and doesn't produce an immune response, then it may disqualify you from doing PD-1 or PD-L1 therapies.

      Each trial have their own exclusion criteria. If you think you might want to do PD-1 therapy, you have to do it before Ipi. Ipi is now a FDA approved Drug here in the States. PD-1 on the other hand is still in clinical trials.

       

      Example of exclusion criteria for  a PD-1 trial

      PRIOR CONCURRENT THERAPY:

      • See Disease Characteristics
      • No prior therapy with an anti-PD-1, anti-PD-L1, anti-PDL-2, or anti-CTLA-4 antibody (or any other antibody targeting T-cell costimulation pathways)

       

      What I am trying to say is choose your therapy wisely.

      jim Breitfeller
      Participant

      Becky,

      Other patients are trying to tell you that if you do Ipi (Yervoy) first, and doesn't produce an immune response, then it may disqualify you from doing PD-1 or PD-L1 therapies.

      Each trial have their own exclusion criteria. If you think you might want to do PD-1 therapy, you have to do it before Ipi. Ipi is now a FDA approved Drug here in the States. PD-1 on the other hand is still in clinical trials.

       

      Example of exclusion criteria for  a PD-1 trial

      PRIOR CONCURRENT THERAPY:

      • See Disease Characteristics
      • No prior therapy with an anti-PD-1, anti-PD-L1, anti-PDL-2, or anti-CTLA-4 antibody (or any other antibody targeting T-cell costimulation pathways)

       

      What I am trying to say is choose your therapy wisely.

      killmel
      Participant

      Hi Becky,

      I think that you should not waste time & discuss PD1 with your doctor.

      Everyone can give you their opinion on this board but you need to get your doctors opinion. Call your doctor today!

      GoodLuck

      A.

      killmel
      Participant

      Hi Becky,

      I think that you should not waste time & discuss PD1 with your doctor.

      Everyone can give you their opinion on this board but you need to get your doctors opinion. Call your doctor today!

      GoodLuck

      A.

      killmel
      Participant

      Hi Becky,

      I think that you should not waste time & discuss PD1 with your doctor.

      Everyone can give you their opinion on this board but you need to get your doctors opinion. Call your doctor today!

      GoodLuck

      A.

      killmel
      Participant

      Becky,

       

      Did you talk to your doctor about PD-1? Any decisions on your treatment?

       

      A.

      killmel
      Participant

      Becky,

       

      Did you talk to your doctor about PD-1? Any decisions on your treatment?

       

      A.

      killmel
      Participant

      Becky,

       

      Did you talk to your doctor about PD-1? Any decisions on your treatment?

       

      A.

Viewing 14 reply threads
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