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BRAIN MET. PROGRESSION FREE FOR 4 Wks NECESSARY?
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BRAIN MET. PROGRESSION FREE FOR 4 Wks NECESSARY?

› Forums › General Melanoma Community › BRAIN MET. PROGRESSION FREE FOR 4 Wks NECESSARY?

  • Post
    • June 6, 2014 at 2:52 am
    NYKaren
    Participant

      Hi, after just failing the BRAF combo drug, it will be onto PD1. (1 tumor on MRI was 11 found on gamma knife, some on already existing or new tumors). 

      I know you have to be brain met free or stable for a certain amount of time; is it always 4 weeks as I've heard from NYU)?

      anyone know about Sloan?

      i'm finally getting what I've wished for, PD1, after failing all the standards (although the BRAF combo lasted me the longest –8 months–I'm terrified now. 

      Anyone who's on PD1w/brain mets, PLEASE let me know how you're doing. 

      Thanks

      karen

    Viewing 8 reply threads
    • Replies
        • June 6, 2014 at 4:12 am
        Bubbles
        Participant

          Karen,

          So sorry for all you've been through….but, yes…I think the EAP for the Merck and BMS anti-PD1 drugs require a certain length of time for stability.  But…here's some good news that I learned at my last follow-up with my Nivo trial at Moffitt and posted on my blog:

          Additional Cohort 6 added:

          • How this cohort is defined specifically, how many have been enrolled in total, how many may still be enrolled, I do not know, however:
          • 5 patients in this cohort were admitted with brain mets.
          • 4 were treated (I presume by radiation…though not certain)
          • BUT…1 experienced a COMPLETE RESPONSE with just Nivo!!!!!  (Awesome, right???!!)

          For the rest of that post:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/03/9-months-after-nivolumab-trialstats-fu.html

          I was post SRS to a brain met and status post upper lobe lung removal when I started my anti-PD1 trial. I remain NED. It is likely that I had a small met when I started my trial, though it was never completely clear.  What is clear…is that after nivo….3 months later…the "whatever it was on my scan"….was gone.  I very much hope the same is true for you!

          WIshing you my best. Hang in there.  Celeste

           

          • June 6, 2014 at 4:12 am
          Bubbles
          Participant

            Karen,

            So sorry for all you've been through….but, yes…I think the EAP for the Merck and BMS anti-PD1 drugs require a certain length of time for stability.  But…here's some good news that I learned at my last follow-up with my Nivo trial at Moffitt and posted on my blog:

            Additional Cohort 6 added:

            • How this cohort is defined specifically, how many have been enrolled in total, how many may still be enrolled, I do not know, however:
            • 5 patients in this cohort were admitted with brain mets.
            • 4 were treated (I presume by radiation…though not certain)
            • BUT…1 experienced a COMPLETE RESPONSE with just Nivo!!!!!  (Awesome, right???!!)

            For the rest of that post:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/03/9-months-after-nivolumab-trialstats-fu.html

            I was post SRS to a brain met and status post upper lobe lung removal when I started my anti-PD1 trial. I remain NED. It is likely that I had a small met when I started my trial, though it was never completely clear.  What is clear…is that after nivo….3 months later…the "whatever it was on my scan"….was gone.  I very much hope the same is true for you!

            WIshing you my best. Hang in there.  Celeste

             

            • June 6, 2014 at 4:12 am
            Bubbles
            Participant

              Karen,

              So sorry for all you've been through….but, yes…I think the EAP for the Merck and BMS anti-PD1 drugs require a certain length of time for stability.  But…here's some good news that I learned at my last follow-up with my Nivo trial at Moffitt and posted on my blog:

              Additional Cohort 6 added:

              • How this cohort is defined specifically, how many have been enrolled in total, how many may still be enrolled, I do not know, however:
              • 5 patients in this cohort were admitted with brain mets.
              • 4 were treated (I presume by radiation…though not certain)
              • BUT…1 experienced a COMPLETE RESPONSE with just Nivo!!!!!  (Awesome, right???!!)

              For the rest of that post:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/03/9-months-after-nivolumab-trialstats-fu.html

              I was post SRS to a brain met and status post upper lobe lung removal when I started my anti-PD1 trial. I remain NED. It is likely that I had a small met when I started my trial, though it was never completely clear.  What is clear…is that after nivo….3 months later…the "whatever it was on my scan"….was gone.  I very much hope the same is true for you!

              WIshing you my best. Hang in there.  Celeste

               

              • June 6, 2014 at 11:23 am
              ecc26
              Participant

                I'm not on PD-1 yet, but am supposed to get my first dose next week. I have my preliminary testing (including and MRI to "prove stability") tomorrow at Dana Farber in Boston. I have had a few rounds of brain mets that have disqualified me twice for PD-1 trials, I'm praying that tomorrow's scans go the way they're supposed to so I can actually get the drug I've been trying to get for over a year (also having failed everything else).

                I don't know what other centers are requiring, but I had my last round of gamma knife on May 19 (just over two and a half weeks ago) and will have an MRI to "prove stability" tomorrow. When I met with the doctor last week and asked about the "untreated brain metastasis" stipulation in the Merk EAP he told me that was pretty much up for interpretation- as long as I had a scan at least 2 weeks after my last Gamma Knife (using the Gamma Knife MRI for comparison) I was good.

                I looked into Sloan for the Merk EAP as it would be closer for us, but they didn't appear to have it- did I miss something? 

                  • June 8, 2014 at 4:56 pm
                  NYKaren
                  Participant

                    I know NYU is starting in about 3-ish weeks; but it's always the ish with both hospitals that I've had experience with.   IMHO, it's better not to use the gamma knife MRI; less chance of them finding any babies that will hopefully be wiped out after the infusions begin.  

                    Last I heard on Friday was that NYU has my name on their list, and we'll take it from there.  I'm requesting a port, as Ipi x2 and il2 x 3 make those veins pretty hard to access. 

                    All brain met/pd1 experience more than welcome. 

                    Karen

                    • June 8, 2014 at 5:13 pm
                    NYKaren
                    Participant

                      Sorry, ecc26, I started this post to tell you Sloan is supposed to be starting soon too. I'm going to email them tomorrow to see how/this protocol differs. I adore Dr. Wolchok/team, but I'd really hate to give up neurosurgeon Douglas Kondziolka at NYU. 

                      I've also heard that there's either more seats altogether at NYU or that NYU will be adding more seats/week. 

                      • June 8, 2014 at 5:13 pm
                      NYKaren
                      Participant

                        Sorry, ecc26, I started this post to tell you Sloan is supposed to be starting soon too. I'm going to email them tomorrow to see how/this protocol differs. I adore Dr. Wolchok/team, but I'd really hate to give up neurosurgeon Douglas Kondziolka at NYU. 

                        I've also heard that there's either more seats altogether at NYU or that NYU will be adding more seats/week. 

                        • June 8, 2014 at 5:13 pm
                        NYKaren
                        Participant

                          Sorry, ecc26, I started this post to tell you Sloan is supposed to be starting soon too. I'm going to email them tomorrow to see how/this protocol differs. I adore Dr. Wolchok/team, but I'd really hate to give up neurosurgeon Douglas Kondziolka at NYU. 

                          I've also heard that there's either more seats altogether at NYU or that NYU will be adding more seats/week. 

                          • June 8, 2014 at 5:43 pm
                          ecc26
                          Participant

                            Thanks for the replies. I can't/dont' want to wait any longer than I already have to start PD-1 as that increases the chances I'll have new brain mets. I'm using the Gamma knife MRI because it's the most recent scan (before the pre-trial one I had on Friday). Everything they saw on the gamma knife scan was treated that day, including "babies". I know those scans are really high resolution and I expect the pre-trial scans are a bit lower resolution, so they may not see those little guys, but that's fine since it will just be interpreted as "improved" from teh May 19 Gamma knife scan.

                            You said things will be starting up in a few more weeks, do you know if Sloan and NYU are going with the Merk or BMS EAP? Sloan is actually closer for me than Boston (and a bit easier to get to) and I can be transferred once they get set up, but only if they're doing the Merk EAP.

                            • June 8, 2014 at 5:43 pm
                            ecc26
                            Participant

                              Thanks for the replies. I can't/dont' want to wait any longer than I already have to start PD-1 as that increases the chances I'll have new brain mets. I'm using the Gamma knife MRI because it's the most recent scan (before the pre-trial one I had on Friday). Everything they saw on the gamma knife scan was treated that day, including "babies". I know those scans are really high resolution and I expect the pre-trial scans are a bit lower resolution, so they may not see those little guys, but that's fine since it will just be interpreted as "improved" from teh May 19 Gamma knife scan.

                              You said things will be starting up in a few more weeks, do you know if Sloan and NYU are going with the Merk or BMS EAP? Sloan is actually closer for me than Boston (and a bit easier to get to) and I can be transferred once they get set up, but only if they're doing the Merk EAP.

                              • June 8, 2014 at 5:43 pm
                              ecc26
                              Participant

                                Thanks for the replies. I can't/dont' want to wait any longer than I already have to start PD-1 as that increases the chances I'll have new brain mets. I'm using the Gamma knife MRI because it's the most recent scan (before the pre-trial one I had on Friday). Everything they saw on the gamma knife scan was treated that day, including "babies". I know those scans are really high resolution and I expect the pre-trial scans are a bit lower resolution, so they may not see those little guys, but that's fine since it will just be interpreted as "improved" from teh May 19 Gamma knife scan.

                                You said things will be starting up in a few more weeks, do you know if Sloan and NYU are going with the Merk or BMS EAP? Sloan is actually closer for me than Boston (and a bit easier to get to) and I can be transferred once they get set up, but only if they're doing the Merk EAP.

                                • June 8, 2014 at 4:56 pm
                                NYKaren
                                Participant

                                  I know NYU is starting in about 3-ish weeks; but it's always the ish with both hospitals that I've had experience with.   IMHO, it's better not to use the gamma knife MRI; less chance of them finding any babies that will hopefully be wiped out after the infusions begin.  

                                  Last I heard on Friday was that NYU has my name on their list, and we'll take it from there.  I'm requesting a port, as Ipi x2 and il2 x 3 make those veins pretty hard to access. 

                                  All brain met/pd1 experience more than welcome. 

                                  Karen

                                  • June 8, 2014 at 4:56 pm
                                  NYKaren
                                  Participant

                                    I know NYU is starting in about 3-ish weeks; but it's always the ish with both hospitals that I've had experience with.   IMHO, it's better not to use the gamma knife MRI; less chance of them finding any babies that will hopefully be wiped out after the infusions begin.  

                                    Last I heard on Friday was that NYU has my name on their list, and we'll take it from there.  I'm requesting a port, as Ipi x2 and il2 x 3 make those veins pretty hard to access. 

                                    All brain met/pd1 experience more than welcome. 

                                    Karen

                                  • June 6, 2014 at 11:23 am
                                  ecc26
                                  Participant

                                    I'm not on PD-1 yet, but am supposed to get my first dose next week. I have my preliminary testing (including and MRI to "prove stability") tomorrow at Dana Farber in Boston. I have had a few rounds of brain mets that have disqualified me twice for PD-1 trials, I'm praying that tomorrow's scans go the way they're supposed to so I can actually get the drug I've been trying to get for over a year (also having failed everything else).

                                    I don't know what other centers are requiring, but I had my last round of gamma knife on May 19 (just over two and a half weeks ago) and will have an MRI to "prove stability" tomorrow. When I met with the doctor last week and asked about the "untreated brain metastasis" stipulation in the Merk EAP he told me that was pretty much up for interpretation- as long as I had a scan at least 2 weeks after my last Gamma Knife (using the Gamma Knife MRI for comparison) I was good.

                                    I looked into Sloan for the Merk EAP as it would be closer for us, but they didn't appear to have it- did I miss something? 

                                    • June 6, 2014 at 11:23 am
                                    ecc26
                                    Participant

                                      I'm not on PD-1 yet, but am supposed to get my first dose next week. I have my preliminary testing (including and MRI to "prove stability") tomorrow at Dana Farber in Boston. I have had a few rounds of brain mets that have disqualified me twice for PD-1 trials, I'm praying that tomorrow's scans go the way they're supposed to so I can actually get the drug I've been trying to get for over a year (also having failed everything else).

                                      I don't know what other centers are requiring, but I had my last round of gamma knife on May 19 (just over two and a half weeks ago) and will have an MRI to "prove stability" tomorrow. When I met with the doctor last week and asked about the "untreated brain metastasis" stipulation in the Merk EAP he told me that was pretty much up for interpretation- as long as I had a scan at least 2 weeks after my last Gamma Knife (using the Gamma Knife MRI for comparison) I was good.

                                      I looked into Sloan for the Merk EAP as it would be closer for us, but they didn't appear to have it- did I miss something? 

                                      • June 12, 2014 at 4:34 pm
                                      kylez
                                      Participant

                                        Hey Karen,

                                        As far as being on PD1 w/brain mets, I wonder if any docs at Yale would be able to share any impressions of their PD1/brain met trial? (The entrance criteria themselves look narrow/difficult). Or if your docs know any of the Yale docs and ask them how people are doing?

                                        http://clinicaltrials.gov/ct2/show/NCT020850700 

                                        How's NYU's wait list status looking now?

                                        – Kyle
                                        • June 12, 2014 at 4:34 pm
                                        kylez
                                        Participant

                                          Hey Karen,

                                          As far as being on PD1 w/brain mets, I wonder if any docs at Yale would be able to share any impressions of their PD1/brain met trial? (The entrance criteria themselves look narrow/difficult). Or if your docs know any of the Yale docs and ask them how people are doing?

                                          http://clinicaltrials.gov/ct2/show/NCT020850700 

                                          How's NYU's wait list status looking now?

                                          – Kyle
                                            • June 13, 2014 at 3:56 am
                                            NYKaren
                                            Participant

                                              Hi Kyle,

                                              i don't know how long, but there really is quite a waiting list at both NYU and Sloan. 

                                              Frustrated and anxious, to say the least. 

                                              Karen

                                              • June 13, 2014 at 3:56 am
                                              NYKaren
                                              Participant

                                                Hi Kyle,

                                                i don't know how long, but there really is quite a waiting list at both NYU and Sloan. 

                                                Frustrated and anxious, to say the least. 

                                                Karen

                                                • June 14, 2014 at 3:18 pm
                                                kylez
                                                Participant

                                                  My cancer center called me to let me know about their EAP (not yet open) and their waiting list. I asked if there was a limit and they said they would have about 40 slots.

                                                  I didn't ask if my facility would be prioritizing/ordering the list in some way. I had somehow imagined any given location would be taking all comers. I didn't think that even an EAP would present these kinds of difficulties. Rooting for you to get in and get going.

                                                  • June 14, 2014 at 3:18 pm
                                                  kylez
                                                  Participant

                                                    My cancer center called me to let me know about their EAP (not yet open) and their waiting list. I asked if there was a limit and they said they would have about 40 slots.

                                                    I didn't ask if my facility would be prioritizing/ordering the list in some way. I had somehow imagined any given location would be taking all comers. I didn't think that even an EAP would present these kinds of difficulties. Rooting for you to get in and get going.

                                                    • June 14, 2014 at 3:18 pm
                                                    kylez
                                                    Participant

                                                      My cancer center called me to let me know about their EAP (not yet open) and their waiting list. I asked if there was a limit and they said they would have about 40 slots.

                                                      I didn't ask if my facility would be prioritizing/ordering the list in some way. I had somehow imagined any given location would be taking all comers. I didn't think that even an EAP would present these kinds of difficulties. Rooting for you to get in and get going.

                                                      • June 16, 2014 at 4:36 pm
                                                      NYKaren
                                                      Participant

                                                        Repeat

                                                        • June 16, 2014 at 4:36 pm
                                                        NYKaren
                                                        Participant

                                                          Repeat

                                                          • June 16, 2014 at 4:36 pm
                                                          NYKaren
                                                          Participant

                                                            Repeat

                                                            • June 13, 2014 at 3:56 am
                                                            NYKaren
                                                            Participant

                                                              Hi Kyle,

                                                              i don't know how long, but there really is quite a waiting list at both NYU and Sloan. 

                                                              Frustrated and anxious, to say the least. 

                                                              Karen

                                                            • June 12, 2014 at 4:34 pm
                                                            kylez
                                                            Participant

                                                              Hey Karen,

                                                              As far as being on PD1 w/brain mets, I wonder if any docs at Yale would be able to share any impressions of their PD1/brain met trial? (The entrance criteria themselves look narrow/difficult). Or if your docs know any of the Yale docs and ask them how people are doing?

                                                              http://clinicaltrials.gov/ct2/show/NCT020850700 

                                                              How's NYU's wait list status looking now?

                                                              – Kyle
                                                          Viewing 8 reply threads
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