Poss PD1 in near future for me…
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Poss PD1 in near future for me…

› Forums › General Melanoma Community › Poss PD1 in near future for me…

  • Post
    • July 10, 2013 at 8:08 pm
    Tina D
    Participant

      I went for my appt in Nashville and was super pleased with the Dr and staff there. As far as we can tell I will qualify for the Merck PD1 trial. Need to have brain MRI done first ( scheduled for the 17th) then the rest of the prescreening scans and labwork the following week if the brain MRI is negative. If all goes well, I will be entering the trial around the end of the month. Merck trial has 3 arms. One PD1 2mg, one PD1 10mg, one chemo ( investigators choice).  I will be randomized into one of the 3 arms.

      I went for my appt in Nashville and was super pleased with the Dr and staff there. As far as we can tell I will qualify for the Merck PD1 trial. Need to have brain MRI done first ( scheduled for the 17th) then the rest of the prescreening scans and labwork the following week if the brain MRI is negative. If all goes well, I will be entering the trial around the end of the month. Merck trial has 3 arms. One PD1 2mg, one PD1 10mg, one chemo ( investigators choice).  I will be randomized into one of the 3 arms. IF I were to be randomized into chemo arm, there is a crossover allowed after 12 weeks if mel progresses during that time. I am thankful for this option and anxious to get it started.

      High point of my visit to Nashville was getting to meet fellow warrior, Amy, face to face!!  😀  

      I will post as I go…

      As always, trusting the Lord!

      Tina

    Viewing 18 reply threads
    • Replies
        • July 11, 2013 at 8:02 am
        Owl
        Participant

          Tina, these are very good news! I cross my fingers that everything goes fine and you will getting into one of the PD1 arms.

          All the best, Jenny

          • July 11, 2013 at 8:02 am
          Owl
          Participant

            Tina, these are very good news! I cross my fingers that everything goes fine and you will getting into one of the PD1 arms.

            All the best, Jenny

            • July 11, 2013 at 8:02 am
            Owl
            Participant

              Tina, these are very good news! I cross my fingers that everything goes fine and you will getting into one of the PD1 arms.

              All the best, Jenny

              • July 11, 2013 at 1:02 pm
              buffcody
              Participant

                Great news. Hope that you get into one of the PD 1 arms.  Any data out there yet on differences between 2 and 10 mg.?  And I envy  your meeting up with Amy.   She's an online inspiration!!  As are you.

                 

                Frank

                • July 11, 2013 at 1:02 pm
                buffcody
                Participant

                  Great news. Hope that you get into one of the PD 1 arms.  Any data out there yet on differences between 2 and 10 mg.?  And I envy  your meeting up with Amy.   She's an online inspiration!!  As are you.

                   

                  Frank

                  • July 11, 2013 at 1:02 pm
                  buffcody
                  Participant

                    Great news. Hope that you get into one of the PD 1 arms.  Any data out there yet on differences between 2 and 10 mg.?  And I envy  your meeting up with Amy.   She's an online inspiration!!  As are you.

                     

                    Frank

                    • July 11, 2013 at 4:16 pm
                    POW
                    Participant

                      Good for you, Tina! That is excellent news, indeed! I know that you hope you don't get assigned to the chemo arm but chemo does work on some people, you know. And having the option to crossover to the anti-PD1 arm if necessary is very reassuring.

                      You go, girl! You're on the right track!

                      • July 11, 2013 at 4:16 pm
                      POW
                      Participant

                        Good for you, Tina! That is excellent news, indeed! I know that you hope you don't get assigned to the chemo arm but chemo does work on some people, you know. And having the option to crossover to the anti-PD1 arm if necessary is very reassuring.

                        You go, girl! You're on the right track!

                        • July 11, 2013 at 4:16 pm
                        POW
                        Participant

                          Good for you, Tina! That is excellent news, indeed! I know that you hope you don't get assigned to the chemo arm but chemo does work on some people, you know. And having the option to crossover to the anti-PD1 arm if necessary is very reassuring.

                          You go, girl! You're on the right track!

                          • July 11, 2013 at 6:05 pm
                          Phil S
                          Participant
                            Tina, Great news, I hope you get AntiPD1 but love the crossover option if you get chemo! Do they need a tumor sample on this trial?? Just curious, because I think lots of trials are now requiring a sample! Anyway, all the best in your fight, keep us posted! Take care, Valerie (Phil’s wife)
                            • July 11, 2013 at 6:05 pm
                            Phil S
                            Participant
                              Tina, Great news, I hope you get AntiPD1 but love the crossover option if you get chemo! Do they need a tumor sample on this trial?? Just curious, because I think lots of trials are now requiring a sample! Anyway, all the best in your fight, keep us posted! Take care, Valerie (Phil’s wife)
                              • July 11, 2013 at 6:05 pm
                              Phil S
                              Participant
                                Tina, Great news, I hope you get AntiPD1 but love the crossover option if you get chemo! Do they need a tumor sample on this trial?? Just curious, because I think lots of trials are now requiring a sample! Anyway, all the best in your fight, keep us posted! Take care, Valerie (Phil’s wife)
                                • July 11, 2013 at 6:22 pm
                                Tina D
                                Participant

                                  Dr said he is pretty definite that they will find NO difference in response rates between the 2 doses. Either dose is more than you need…by quite a bit, apparently. It was AWESOME to get to meet Amy, she's been a great friend to me through this past year.

                                  Tina

                                  • July 11, 2013 at 6:26 pm
                                  Tina D
                                  Participant

                                    Thank you !

                                    They have both the BMS trial and the Merck trial . BMS WAS requiring fresh tumor biopsy, but very recently made an ammendment that they could use previous samples ( this was the thing that caused me to have to leave St Louis for a trial elsewhere- my tumors were deemed too deep for feasable biopsy). Merck will use previous samples. Only Merck has the crossover option, though.

                                    Tina

                                    • July 11, 2013 at 7:38 pm
                                    awillett1991
                                    Participant
                                      And it was awesome to get to meet you Tina! I did not know that abt the 2 doses, I worry that I’m getting the low lose alot, now I won’t anymore. I have inspected the pharmacy IV bag like its a terrorist going through a TSA screening each time.

                                      So hard to trust ALL the time 😉

                                      I get more inspiration from my fellow warriors than I give, especially people like you and Frank 😉

                                      Amy

                                      • July 11, 2013 at 10:06 pm
                                      NYKaren
                                      Participant
                                        Hi Tina,
                                        Great news. If all goes well for us both, we’ll be starting at around the same time! I wish there were no chemo arm, but thankfully there is crossover. Makes me wonder what the point of chemo is…
                                        Also I knew both doses work, but not that they both work so well.
                                        Good news all around today!
                                        Karen
                                          • July 11, 2013 at 6:22 pm
                                          Tina D
                                          Participant

                                            Dr said he is pretty definite that they will find NO difference in response rates between the 2 doses. Either dose is more than you need…by quite a bit, apparently. It was AWESOME to get to meet Amy, she's been a great friend to me through this past year.

                                            Tina

                                            • July 11, 2013 at 6:22 pm
                                            Tina D
                                            Participant

                                              Dr said he is pretty definite that they will find NO difference in response rates between the 2 doses. Either dose is more than you need…by quite a bit, apparently. It was AWESOME to get to meet Amy, she's been a great friend to me through this past year.

                                              Tina

                                            • July 12, 2013 at 12:14 am
                                            Brendan
                                            Participant

                                              Great news, Tina!  Good luck!

                                              Brendan

                                              • July 12, 2013 at 5:31 pm
                                              Tina D
                                              Participant

                                                Karen, we will have to compare notes as we go 🙂  . The chemo arm has to be there, I think for this phase of trial. Has to be conpared to the standard of treatment. How are you feeling??

                                                Tina

                                                  • July 11, 2013 at 6:26 pm
                                                  Tina D
                                                  Participant

                                                    Thank you !

                                                    They have both the BMS trial and the Merck trial . BMS WAS requiring fresh tumor biopsy, but very recently made an ammendment that they could use previous samples ( this was the thing that caused me to have to leave St Louis for a trial elsewhere- my tumors were deemed too deep for feasable biopsy). Merck will use previous samples. Only Merck has the crossover option, though.

                                                    Tina

                                                    • July 11, 2013 at 6:26 pm
                                                    Tina D
                                                    Participant

                                                      Thank you !

                                                      They have both the BMS trial and the Merck trial . BMS WAS requiring fresh tumor biopsy, but very recently made an ammendment that they could use previous samples ( this was the thing that caused me to have to leave St Louis for a trial elsewhere- my tumors were deemed too deep for feasable biopsy). Merck will use previous samples. Only Merck has the crossover option, though.

                                                      Tina

                                                    • July 12, 2013 at 6:29 pm
                                                    NYKaren
                                                    Participant

                                                      Hi Tina,

                                                      Yes, I do realize that.  I was so close to phase I trial, then Merck stopped it at Sloan.  Oh well, I still would have had the MRI showing brain mets, so no use crying over spilled milk.

                                                      I feel ok…don't know if I'm a little more depressed because of delay or if I'm still tired from cyber knife…it's a chore to get through every day, but I guess a lot of us find that and it surely beats the alternative.

                                                      we will definately compare notes!

                                                      Karen

                                                        • July 11, 2013 at 7:38 pm
                                                        awillett1991
                                                        Participant
                                                          And it was awesome to get to meet you Tina! I did not know that abt the 2 doses, I worry that I’m getting the low lose alot, now I won’t anymore. I have inspected the pharmacy IV bag like its a terrorist going through a TSA screening each time.

                                                          So hard to trust ALL the time 😉

                                                          I get more inspiration from my fellow warriors than I give, especially people like you and Frank 😉

                                                          Amy

                                                          • July 11, 2013 at 7:38 pm
                                                          awillett1991
                                                          Participant
                                                            And it was awesome to get to meet you Tina! I did not know that abt the 2 doses, I worry that I’m getting the low lose alot, now I won’t anymore. I have inspected the pharmacy IV bag like its a terrorist going through a TSA screening each time.

                                                            So hard to trust ALL the time 😉

                                                            I get more inspiration from my fellow warriors than I give, especially people like you and Frank 😉

                                                            Amy

                                                          • July 11, 2013 at 10:06 pm
                                                          NYKaren
                                                          Participant
                                                            Hi Tina,
                                                            Great news. If all goes well for us both, we’ll be starting at around the same time! I wish there were no chemo arm, but thankfully there is crossover. Makes me wonder what the point of chemo is…
                                                            Also I knew both doses work, but not that they both work so well.
                                                            Good news all around today!
                                                            Karen
                                                            • July 11, 2013 at 10:06 pm
                                                            NYKaren
                                                            Participant
                                                              Hi Tina,
                                                              Great news. If all goes well for us both, we’ll be starting at around the same time! I wish there were no chemo arm, but thankfully there is crossover. Makes me wonder what the point of chemo is…
                                                              Also I knew both doses work, but not that they both work so well.
                                                              Good news all around today!
                                                              Karen
                                                              • July 15, 2013 at 1:58 am
                                                              5374brian
                                                              Participant

                                                                Quick note on the Merck trial. My wife was good on MRI but her hemoglobin count was low due to the melanoma tumors in different areas. Our understanding is they all have slight seepage but it can be greater in the abdomen and intestines. We appealed to Merck and finally they said if we did a transfusion and wait 4 weeks they would check count again to see if stable. Then we checked with BMS and they will accept a transfusion the day before blood work if your count might be low. Most things your hear are stable MRI but the hemoglobin we were not aware of till we walked in to get started. Either arm of a trial you get, you are treating what you can today which is better than no treatment at all. Good luck.  

                                                                • July 15, 2013 at 1:58 am
                                                                5374brian
                                                                Participant

                                                                  Quick note on the Merck trial. My wife was good on MRI but her hemoglobin count was low due to the melanoma tumors in different areas. Our understanding is they all have slight seepage but it can be greater in the abdomen and intestines. We appealed to Merck and finally they said if we did a transfusion and wait 4 weeks they would check count again to see if stable. Then we checked with BMS and they will accept a transfusion the day before blood work if your count might be low. Most things your hear are stable MRI but the hemoglobin we were not aware of till we walked in to get started. Either arm of a trial you get, you are treating what you can today which is better than no treatment at all. Good luck.  

                                                                  • July 15, 2013 at 1:58 am
                                                                  5374brian
                                                                  Participant

                                                                    Quick note on the Merck trial. My wife was good on MRI but her hemoglobin count was low due to the melanoma tumors in different areas. Our understanding is they all have slight seepage but it can be greater in the abdomen and intestines. We appealed to Merck and finally they said if we did a transfusion and wait 4 weeks they would check count again to see if stable. Then we checked with BMS and they will accept a transfusion the day before blood work if your count might be low. Most things your hear are stable MRI but the hemoglobin we were not aware of till we walked in to get started. Either arm of a trial you get, you are treating what you can today which is better than no treatment at all. Good luck.  

                                                                    • July 12, 2013 at 12:14 am
                                                                    Brendan
                                                                    Participant

                                                                      Great news, Tina!  Good luck!

                                                                      Brendan

                                                                      • July 12, 2013 at 12:14 am
                                                                      Brendan
                                                                      Participant

                                                                        Great news, Tina!  Good luck!

                                                                        Brendan

                                                                        • July 12, 2013 at 5:31 pm
                                                                        Tina D
                                                                        Participant

                                                                          Karen, we will have to compare notes as we go 🙂  . The chemo arm has to be there, I think for this phase of trial. Has to be conpared to the standard of treatment. How are you feeling??

                                                                          Tina

                                                                          • July 12, 2013 at 5:31 pm
                                                                          Tina D
                                                                          Participant

                                                                            Karen, we will have to compare notes as we go 🙂  . The chemo arm has to be there, I think for this phase of trial. Has to be conpared to the standard of treatment. How are you feeling??

                                                                            Tina

                                                                            • July 12, 2013 at 6:29 pm
                                                                            NYKaren
                                                                            Participant

                                                                              Hi Tina,

                                                                              Yes, I do realize that.  I was so close to phase I trial, then Merck stopped it at Sloan.  Oh well, I still would have had the MRI showing brain mets, so no use crying over spilled milk.

                                                                              I feel ok…don't know if I'm a little more depressed because of delay or if I'm still tired from cyber knife…it's a chore to get through every day, but I guess a lot of us find that and it surely beats the alternative.

                                                                              we will definately compare notes!

                                                                              Karen

                                                                              • July 12, 2013 at 6:29 pm
                                                                              NYKaren
                                                                              Participant

                                                                                Hi Tina,

                                                                                Yes, I do realize that.  I was so close to phase I trial, then Merck stopped it at Sloan.  Oh well, I still would have had the MRI showing brain mets, so no use crying over spilled milk.

                                                                                I feel ok…don't know if I'm a little more depressed because of delay or if I'm still tired from cyber knife…it's a chore to get through every day, but I guess a lot of us find that and it surely beats the alternative.

                                                                                we will definately compare notes!

                                                                                Karen

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