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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 [email protected].

           

          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 [email protected].

             

            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 [email protected].

               

              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     [email protected]    
                            Contact: Karen Forman     313-576-8096     [email protected]    
                            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     [email protected]    
                            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     [email protected]    
                              Contact: Karen Forman     313-576-8096     [email protected]    
                              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     [email protected]    
                              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     [email protected]    
                                Contact: Karen Forman     313-576-8096     [email protected]    
                                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     [email protected]    
                                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.

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