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Starting Merck’s PD-1

Forums General Melanoma Community Starting Merck’s PD-1

  • Post
    bigb0624
    Participant

      Now that i have used Zelboraf, with success, and the combo Tafinlar & Mekinist, with some success, my tumors in my liver have showed progression and now my doctor wants me to start Merck's PD-1. Has anyone followed the same course i am taking and were there any side effects to the PD-1?

      Barry 

       

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    • Replies
        arthurjedi007
        Participant

          Same course? Not exactly. Zelboraf shrank nothing for me. The side affects were a lot. Then Yervoy which also shrank nothing but only minor side affects like itching, rash. Then the Tafinlar/Mekinist combo which had some success keeping almost everything from growing and 3 tumors shrank a small amout but other stuff grew a lot and new ones. But it's sideaffects except for 3 days of massive fever, shakes and things it was pretty much nothing except for a couple weeks of off/on fevers.

          Now I'm on Merck's PD-1 via the extended access program. Dosage is 2mg per kg body weight every 3 weeks. Side affects are seeing some shrinkage to a visible tumor and over a dozen shrinking via the pet scan. A few have grown so going to radiate some of them soon. Other side affects are really none. It's like taking nothing. I'm totally amazed the stuff is working.

          Now the higher dose of Merck's PD-1 in the earlier trials was 10mg per kg every 2 weeks for some and every 3 weeks for others. So there were some severe side affects but also people on here have said they've been on that dosage for over 2 years. So everyone is different but this lower dosage I'm on if I remember the trial data I saw right had zero grade 3 and above side affects.

          I think one of the members here has details on it in her blog:

          http://chaoticallypreciselifeloveandmelanoma.blogspot.com/

           

          arthurjedi007
          Participant

            Same course? Not exactly. Zelboraf shrank nothing for me. The side affects were a lot. Then Yervoy which also shrank nothing but only minor side affects like itching, rash. Then the Tafinlar/Mekinist combo which had some success keeping almost everything from growing and 3 tumors shrank a small amout but other stuff grew a lot and new ones. But it's sideaffects except for 3 days of massive fever, shakes and things it was pretty much nothing except for a couple weeks of off/on fevers.

            Now I'm on Merck's PD-1 via the extended access program. Dosage is 2mg per kg body weight every 3 weeks. Side affects are seeing some shrinkage to a visible tumor and over a dozen shrinking via the pet scan. A few have grown so going to radiate some of them soon. Other side affects are really none. It's like taking nothing. I'm totally amazed the stuff is working.

            Now the higher dose of Merck's PD-1 in the earlier trials was 10mg per kg every 2 weeks for some and every 3 weeks for others. So there were some severe side affects but also people on here have said they've been on that dosage for over 2 years. So everyone is different but this lower dosage I'm on if I remember the trial data I saw right had zero grade 3 and above side affects.

            I think one of the members here has details on it in her blog:

            http://chaoticallypreciselifeloveandmelanoma.blogspot.com/

             

            arthurjedi007
            Participant

              Same course? Not exactly. Zelboraf shrank nothing for me. The side affects were a lot. Then Yervoy which also shrank nothing but only minor side affects like itching, rash. Then the Tafinlar/Mekinist combo which had some success keeping almost everything from growing and 3 tumors shrank a small amout but other stuff grew a lot and new ones. But it's sideaffects except for 3 days of massive fever, shakes and things it was pretty much nothing except for a couple weeks of off/on fevers.

              Now I'm on Merck's PD-1 via the extended access program. Dosage is 2mg per kg body weight every 3 weeks. Side affects are seeing some shrinkage to a visible tumor and over a dozen shrinking via the pet scan. A few have grown so going to radiate some of them soon. Other side affects are really none. It's like taking nothing. I'm totally amazed the stuff is working.

              Now the higher dose of Merck's PD-1 in the earlier trials was 10mg per kg every 2 weeks for some and every 3 weeks for others. So there were some severe side affects but also people on here have said they've been on that dosage for over 2 years. So everyone is different but this lower dosage I'm on if I remember the trial data I saw right had zero grade 3 and above side affects.

              I think one of the members here has details on it in her blog:

              http://chaoticallypreciselifeloveandmelanoma.blogspot.com/

               

              kalisama
              Participant

                Hi Barry,
                Is your doc trying PD-1 in combo with the Mek/Taf, or is he taking you off of those? I'm just wondering if anyone is working with these 3 together.

                Best of health to you,
                kali

                kalisama
                Participant

                  Hi Barry,
                  Is your doc trying PD-1 in combo with the Mek/Taf, or is he taking you off of those? I'm just wondering if anyone is working with these 3 together.

                  Best of health to you,
                  kali

                  kalisama
                  Participant

                    Hi Barry,
                    Is your doc trying PD-1 in combo with the Mek/Taf, or is he taking you off of those? I'm just wondering if anyone is working with these 3 together.

                    Best of health to you,
                    kali

                    Bubbles
                    Participant

                      Hi Barry,

                      I have only had radiation, surgery, and a 2 1/2 year trial of anti-PD1 (Nivolumab, the BMS product).  My story is the one Artie gave you a link to above. Here are some specific posts that may answer most of your questions about anti-PD1.  The Merck and BMS products are very similar in response rate (though some studies show the Merck drug doing a little better) and are essentially the same in side effects and mechanism of action.

                      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/background-and-latest-info-on-anti-pd1.html

                      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/07/nivoipi-combo-nivo-vs-pembro-pd-l1.html

                      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/anti-pd1-in-melanoma-t-cells-brain-and.html

                      I wish you my best.  Celeste

                      Bubbles
                      Participant

                        Hi Barry,

                        I have only had radiation, surgery, and a 2 1/2 year trial of anti-PD1 (Nivolumab, the BMS product).  My story is the one Artie gave you a link to above. Here are some specific posts that may answer most of your questions about anti-PD1.  The Merck and BMS products are very similar in response rate (though some studies show the Merck drug doing a little better) and are essentially the same in side effects and mechanism of action.

                        http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/background-and-latest-info-on-anti-pd1.html

                        http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/07/nivoipi-combo-nivo-vs-pembro-pd-l1.html

                        http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/anti-pd1-in-melanoma-t-cells-brain-and.html

                        I wish you my best.  Celeste

                        Bubbles
                        Participant

                          Hi Barry,

                          I have only had radiation, surgery, and a 2 1/2 year trial of anti-PD1 (Nivolumab, the BMS product).  My story is the one Artie gave you a link to above. Here are some specific posts that may answer most of your questions about anti-PD1.  The Merck and BMS products are very similar in response rate (though some studies show the Merck drug doing a little better) and are essentially the same in side effects and mechanism of action.

                          http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/background-and-latest-info-on-anti-pd1.html

                          http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/07/nivoipi-combo-nivo-vs-pembro-pd-l1.html

                          http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/anti-pd1-in-melanoma-t-cells-brain-and.html

                          I wish you my best.  Celeste

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