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Melanoma leptomeningeal metastases – which systemic therapy?
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Melanoma leptomeningeal metastases – which systemic therapy?

› Forums › General Melanoma Community › Melanoma leptomeningeal metastases – which systemic therapy?

  • Post
    • September 2, 2016 at 8:15 pm
    Mikers
    Participant

      Hello,

      last MRI revealed accumulating of contrast matter along whole spinal cord i.e. leptomeningeal progression (after multiply brain mets). Some small lesions are also stand out from background. 
      I know that there are not to many positive stories on dealing with this stage but maybe someone can share experience or link to possible clinical trial? (Europe is preferable)
      Thank you!

    Viewing 11 reply threads
    • Replies
        • September 2, 2016 at 8:17 pm
        Mikers
        Participant

          By the way, dabrafenib+trametinib+keytruda has already failed. Switching to ipi now

          • September 2, 2016 at 8:17 pm
          Mikers
          Participant

            By the way, dabrafenib+trametinib+keytruda has already failed. Switching to ipi now

            • September 2, 2016 at 8:17 pm
            Mikers
            Participant

              By the way, dabrafenib+trametinib+keytruda has already failed. Switching to ipi now

              • September 3, 2016 at 5:49 am
              kylez
              Participant

                Mike, the second clinical trial listed below, Abemaciclib, is listed as having some European locations. The treatment mentioned being given at MD Anderson is not a clinical trial as far as I know.  

                ————-

                Samantha on MPIP posted the doctor took over from Dr. Papa and is now doing the intrathecal IL-2. Her name is Dr. Isabella Glitza. Samantha's message on MPIP is here.

                There's a clinical trial listed for Memorial Sloan Kettering to treat leptomeningeal cancer including melanoma. I don't know how up-to-date the listing is, but on clinical trials.gov it is here, https://clinicaltrials.gov/ct2/show/NCT00445965.

                A trial for another drug, Abemaciclib, at 50+ locations, is here, https://clinicaltrials.gov/ct2/show/NCT02308020.

                  • September 3, 2016 at 7:48 pm
                  Mikers
                  Participant

                    Thank you, Kylez!
                    So far I know one patient with similar to my case who failed with Abemaciclib. 

                    Trial with Iodine I 131 have started in 2007 and there is still no punblished data on it which is not encouraging.

                    Anyway not much сhoice so should probably try some of it

                    • September 3, 2016 at 7:48 pm
                    Mikers
                    Participant

                      Thank you, Kylez!
                      So far I know one patient with similar to my case who failed with Abemaciclib. 

                      Trial with Iodine I 131 have started in 2007 and there is still no punblished data on it which is not encouraging.

                      Anyway not much сhoice so should probably try some of it

                      • September 3, 2016 at 7:48 pm
                      Mikers
                      Participant

                        Thank you, Kylez!
                        So far I know one patient with similar to my case who failed with Abemaciclib. 

                        Trial with Iodine I 131 have started in 2007 and there is still no punblished data on it which is not encouraging.

                        Anyway not much сhoice so should probably try some of it

                      • September 3, 2016 at 5:49 am
                      kylez
                      Participant

                        Mike, the second clinical trial listed below, Abemaciclib, is listed as having some European locations. The treatment mentioned being given at MD Anderson is not a clinical trial as far as I know.  

                        ————-

                        Samantha on MPIP posted the doctor took over from Dr. Papa and is now doing the intrathecal IL-2. Her name is Dr. Isabella Glitza. Samantha's message on MPIP is here.

                        There's a clinical trial listed for Memorial Sloan Kettering to treat leptomeningeal cancer including melanoma. I don't know how up-to-date the listing is, but on clinical trials.gov it is here, https://clinicaltrials.gov/ct2/show/NCT00445965.

                        A trial for another drug, Abemaciclib, at 50+ locations, is here, https://clinicaltrials.gov/ct2/show/NCT02308020.

                        • September 3, 2016 at 5:49 am
                        kylez
                        Participant

                          Mike, the second clinical trial listed below, Abemaciclib, is listed as having some European locations. The treatment mentioned being given at MD Anderson is not a clinical trial as far as I know.  

                          ————-

                          Samantha on MPIP posted the doctor took over from Dr. Papa and is now doing the intrathecal IL-2. Her name is Dr. Isabella Glitza. Samantha's message on MPIP is here.

                          There's a clinical trial listed for Memorial Sloan Kettering to treat leptomeningeal cancer including melanoma. I don't know how up-to-date the listing is, but on clinical trials.gov it is here, https://clinicaltrials.gov/ct2/show/NCT00445965.

                          A trial for another drug, Abemaciclib, at 50+ locations, is here, https://clinicaltrials.gov/ct2/show/NCT02308020.

                          • September 3, 2016 at 11:10 pm
                          Bubbles
                          Participant

                            Hey Mikers,

                            Man!!  That is a tough hand to be dealing with. I know that MD Anderson here in the states has done some work with intrathecal treatments (drugs injected into the spinal fluid).   I don't know if this is available in Europe…but perhaps you could ask about it.  Here is a post I put together last year where they were using IL2:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/10/intrathecal-il2-for-melanoma-patients.html

                            For what it's worth.  Hang in there.  Yours, celeste

                            • September 3, 2016 at 11:10 pm
                            Bubbles
                            Participant

                              Hey Mikers,

                              Man!!  That is a tough hand to be dealing with. I know that MD Anderson here in the states has done some work with intrathecal treatments (drugs injected into the spinal fluid).   I don't know if this is available in Europe…but perhaps you could ask about it.  Here is a post I put together last year where they were using IL2:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/10/intrathecal-il2-for-melanoma-patients.html

                              For what it's worth.  Hang in there.  Yours, celeste

                              • September 3, 2016 at 11:10 pm
                              Bubbles
                              Participant

                                Hey Mikers,

                                Man!!  That is a tough hand to be dealing with. I know that MD Anderson here in the states has done some work with intrathecal treatments (drugs injected into the spinal fluid).   I don't know if this is available in Europe…but perhaps you could ask about it.  Here is a post I put together last year where they were using IL2:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/10/intrathecal-il2-for-melanoma-patients.html

                                For what it's worth.  Hang in there.  Yours, celeste

                                  • September 3, 2016 at 11:17 pm
                                  Bubbles
                                  Participant

                                    PS…there are also some studies that are showing some success with intrathecal IL2 combined with TIL therapy.  Again, maybe something you could ask about.  c

                                    • September 3, 2016 at 11:17 pm
                                    Bubbles
                                    Participant

                                      PS…there are also some studies that are showing some success with intrathecal IL2 combined with TIL therapy.  Again, maybe something you could ask about.  c

                                      • September 5, 2016 at 4:49 pm
                                      Mikers
                                      Participant

                                        Thank you, Celeste!

                                        I think this is the kind of combinational study:

                                        https://clinicaltrials.gov/ct2/show/study/NCT00338377

                                        Unfortunately in our case there is no raw tissue for biopsy.

                                        • September 5, 2016 at 4:49 pm
                                        Mikers
                                        Participant

                                          Thank you, Celeste!

                                          I think this is the kind of combinational study:

                                          https://clinicaltrials.gov/ct2/show/study/NCT00338377

                                          Unfortunately in our case there is no raw tissue for biopsy.

                                          • September 5, 2016 at 4:49 pm
                                          Mikers
                                          Participant

                                            Thank you, Celeste!

                                            I think this is the kind of combinational study:

                                            https://clinicaltrials.gov/ct2/show/study/NCT00338377

                                            Unfortunately in our case there is no raw tissue for biopsy.

                                            • September 5, 2016 at 7:52 pm
                                            Bubbles
                                            Participant

                                              Yes, there is that.  Sorry you can't grow TIL though.  MD Anderson also did an intrathecal infusion of TIL cells for one patient with leptomeningeal disease.  Unfortunately, the patient passed 5 months later due to progression of melanoma in lung, liver and elsewhere…but the good news was that disease did NOT progress in the meninges.  Small blessing to be sure.  I do think progress is being made in this area of melanoma treatment, but not at all quickly enough!!!   Wish I had more info.  If I find any, I will post it here. Hang in there.  Celeste

                                              • September 5, 2016 at 7:52 pm
                                              Bubbles
                                              Participant

                                                Yes, there is that.  Sorry you can't grow TIL though.  MD Anderson also did an intrathecal infusion of TIL cells for one patient with leptomeningeal disease.  Unfortunately, the patient passed 5 months later due to progression of melanoma in lung, liver and elsewhere…but the good news was that disease did NOT progress in the meninges.  Small blessing to be sure.  I do think progress is being made in this area of melanoma treatment, but not at all quickly enough!!!   Wish I had more info.  If I find any, I will post it here. Hang in there.  Celeste

                                                • September 5, 2016 at 7:52 pm
                                                Bubbles
                                                Participant

                                                  Yes, there is that.  Sorry you can't grow TIL though.  MD Anderson also did an intrathecal infusion of TIL cells for one patient with leptomeningeal disease.  Unfortunately, the patient passed 5 months later due to progression of melanoma in lung, liver and elsewhere…but the good news was that disease did NOT progress in the meninges.  Small blessing to be sure.  I do think progress is being made in this area of melanoma treatment, but not at all quickly enough!!!   Wish I had more info.  If I find any, I will post it here. Hang in there.  Celeste

                                                  • September 3, 2016 at 11:17 pm
                                                  Bubbles
                                                  Participant

                                                    PS…there are also some studies that are showing some success with intrathecal IL2 combined with TIL therapy.  Again, maybe something you could ask about.  c

                                                  • September 8, 2016 at 1:23 am
                                                  kylez
                                                  Participant

                                                    Mike, another resource you could try is the clinical trial finder, provided by MRF. The RNs or other staff there are really good at finding trials that would easily be overlooked. They found ones I could have tried qualifying for, that I would never found on my own searching clinicaltrials.gov. I don't know how US-centric they are. It's at https://www.melanoma.org/understand-melanoma/melanoma-treatment/find-a-clinical-trial. 

                                                    • September 8, 2016 at 1:23 am
                                                    kylez
                                                    Participant

                                                      Mike, another resource you could try is the clinical trial finder, provided by MRF. The RNs or other staff there are really good at finding trials that would easily be overlooked. They found ones I could have tried qualifying for, that I would never found on my own searching clinicaltrials.gov. I don't know how US-centric they are. It's at https://www.melanoma.org/understand-melanoma/melanoma-treatment/find-a-clinical-trial. 

                                                      • September 8, 2016 at 1:23 am
                                                      kylez
                                                      Participant

                                                        Mike, another resource you could try is the clinical trial finder, provided by MRF. The RNs or other staff there are really good at finding trials that would easily be overlooked. They found ones I could have tried qualifying for, that I would never found on my own searching clinicaltrials.gov. I don't know how US-centric they are. It's at https://www.melanoma.org/understand-melanoma/melanoma-treatment/find-a-clinical-trial. 

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