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Please help – need suggestions on next steps
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Please help – need suggestions on next steps

› Forums › General Melanoma Community › Please help – need suggestions on next steps

  • Post
    • August 8, 2013 at 7:47 am
    melmar
    Participant
      First thank you to everyone on this forum for sharing your experiences. Though I have not had time to post often, it has been a great source of support. Anyway since I last posted (and after initial brain surgery and gamma knife) I started pd1. I came off 10 mos ish later because of progression. Did three doses of yervoy but stopped because of liver toxicity. Took steroids for a couple of months and then had surgery to remove only remaining tumor in the adrenal gland. Unfortunately during surgery, the tumor ruptured and since then it has been a rough ride.

      First thank you to everyone on this forum for sharing your experiences. Though I have not had time to post often, it has been a great source of support. Anyway since I last posted (and after initial brain surgery and gamma knife) I started pd1. I came off 10 mos ish later because of progression. Did three doses of yervoy but stopped because of liver toxicity. Took steroids for a couple of months and then had surgery to remove only remaining tumor in the adrenal gland. Unfortunately during surgery, the tumor ruptured and since then it has been a rough ride. Growths in abdominal cavity, liver, kidney, lungs and a small brain
      met (which is under control after SRS) . After this progression, I started Zelboraf which worked wonders for two months, but it has now stopped working. Docs are considering adding MEK or maybe doing Il2 (there had been some push back on Il2 though because apparently it doesn’t work well when things are growing rapidly). Anyway I am wondering if anyone on this board has been through a similar regimen and has any suggestions and/or knows of new promising trials. I have four kids age 5-12 and much to live for, but my optimism is fading. Please help if you can. Wishing much strength to everyone on this board. This is such an unfair roller coaster ride.

    Viewing 10 reply threads
    • Replies
        • August 8, 2013 at 12:06 pm
        POW
        Participant

          Hi, Margo-

          I  am so sorry to hear that you are having such a hard time. You are one amazing fighter!

          Since you responded well to Zelboraf but had severe side effects, perhaps you could consider the Tafinlar (dabrafenib) and Mekinist (trametinib) combination. That combo is supposed to work at least as well as Z but with fewer side effects. Gina's (GAngel) husband recently started  that combo. Maybe you could contact her and find out how he managed to get it. Although they are both FDA approved as single agents, insurance companies are reluctant to pay for both at once.

          My heart goes out to you and your young family. I will be praying for you all.

           

          • August 8, 2013 at 12:06 pm
          POW
          Participant

            Hi, Margo-

            I  am so sorry to hear that you are having such a hard time. You are one amazing fighter!

            Since you responded well to Zelboraf but had severe side effects, perhaps you could consider the Tafinlar (dabrafenib) and Mekinist (trametinib) combination. That combo is supposed to work at least as well as Z but with fewer side effects. Gina's (GAngel) husband recently started  that combo. Maybe you could contact her and find out how he managed to get it. Although they are both FDA approved as single agents, insurance companies are reluctant to pay for both at once.

            My heart goes out to you and your young family. I will be praying for you all.

             

            • August 8, 2013 at 12:06 pm
            POW
            Participant

              Hi, Margo-

              I  am so sorry to hear that you are having such a hard time. You are one amazing fighter!

              Since you responded well to Zelboraf but had severe side effects, perhaps you could consider the Tafinlar (dabrafenib) and Mekinist (trametinib) combination. That combo is supposed to work at least as well as Z but with fewer side effects. Gina's (GAngel) husband recently started  that combo. Maybe you could contact her and find out how he managed to get it. Although they are both FDA approved as single agents, insurance companies are reluctant to pay for both at once.

              My heart goes out to you and your young family. I will be praying for you all.

               

              • August 8, 2013 at 1:28 pm
              JerryfromFauq
              Participant

                My tumors were going wild with rapid growth when IL-2 stopped their growth for 20 months.  In 6 weeks the slow down in growth was seen/

                • August 8, 2013 at 1:28 pm
                JerryfromFauq
                Participant

                  My tumors were going wild with rapid growth when IL-2 stopped their growth for 20 months.  In 6 weeks the slow down in growth was seen/

                  • August 8, 2013 at 1:28 pm
                  JerryfromFauq
                  Participant

                    My tumors were going wild with rapid growth when IL-2 stopped their growth for 20 months.  In 6 weeks the slow down in growth was seen/

                    • August 8, 2013 at 4:30 pm
                    killmel
                    Participant

                      Hi Margo,

                      I am so sorry to hear that you have been having problems.

                      You mentioned: "Unfortunately during surgery, the tumor ruptured and since then it has been a rough ride. Growths in abdominal cavity, liver, kidney, lungs and a small brain met"  Did the melamona cells spread to your organs because the tumor ruptured and got into your blood system? 

                      There is a new clinical trial (see link) that has been getting good results:

                      http://clinicaltrials.gov/ct2/show/NCT01522664

                      It uses something called ADC technology and this is the first ADC drug targeted for melanoma.   Here are some links to read more about this drug:

                      http://clincancerres.aacrjournals.org/content/17/5/965.short

                      http://www.gene.com/stories/understanding-antibody-drug-conjugates

                      This clinical trial is at the Angeles Clinic. Are you still getting treated at the Angeles Clinic? If so, I certainly would discuss this trial with your doctor.

                      God Luck and you will be in my prayers.

                      Agnes

                      • August 8, 2013 at 4:30 pm
                      killmel
                      Participant

                        Hi Margo,

                        I am so sorry to hear that you have been having problems.

                        You mentioned: "Unfortunately during surgery, the tumor ruptured and since then it has been a rough ride. Growths in abdominal cavity, liver, kidney, lungs and a small brain met"  Did the melamona cells spread to your organs because the tumor ruptured and got into your blood system? 

                        There is a new clinical trial (see link) that has been getting good results:

                        http://clinicaltrials.gov/ct2/show/NCT01522664

                        It uses something called ADC technology and this is the first ADC drug targeted for melanoma.   Here are some links to read more about this drug:

                        http://clincancerres.aacrjournals.org/content/17/5/965.short

                        http://www.gene.com/stories/understanding-antibody-drug-conjugates

                        This clinical trial is at the Angeles Clinic. Are you still getting treated at the Angeles Clinic? If so, I certainly would discuss this trial with your doctor.

                        God Luck and you will be in my prayers.

                        Agnes

                        • August 8, 2013 at 4:30 pm
                        killmel
                        Participant

                          Hi Margo,

                          I am so sorry to hear that you have been having problems.

                          You mentioned: "Unfortunately during surgery, the tumor ruptured and since then it has been a rough ride. Growths in abdominal cavity, liver, kidney, lungs and a small brain met"  Did the melamona cells spread to your organs because the tumor ruptured and got into your blood system? 

                          There is a new clinical trial (see link) that has been getting good results:

                          http://clinicaltrials.gov/ct2/show/NCT01522664

                          It uses something called ADC technology and this is the first ADC drug targeted for melanoma.   Here are some links to read more about this drug:

                          http://clincancerres.aacrjournals.org/content/17/5/965.short

                          http://www.gene.com/stories/understanding-antibody-drug-conjugates

                          This clinical trial is at the Angeles Clinic. Are you still getting treated at the Angeles Clinic? If so, I certainly would discuss this trial with your doctor.

                          God Luck and you will be in my prayers.

                          Agnes

                          • August 9, 2013 at 12:09 am
                          NYKaren
                          Participant
                            Please see melanomainternational.org’s posting in stage IV forum where this therapy is discussed and followed byJonathan, a responder. Please read carefully, so far he’s only been seen only at Vanderbilt– was originally thought that Yale-New Haven, Dr. Mario Sznol, would start same protocol within maybe 3 years. So far, Jonathan has done an awful lot of commuting, and happily is responding really well.
                            Karen
                            • August 9, 2013 at 12:12 am
                            NYKaren
                            Participant
                              Sorry for that horrible grammar!
                              • August 9, 2013 at 12:09 am
                              NYKaren
                              Participant
                                Please see melanomainternational.org’s posting in stage IV forum where this therapy is discussed and followed byJonathan, a responder. Please read carefully, so far he’s only been seen only at Vanderbilt– was originally thought that Yale-New Haven, Dr. Mario Sznol, would start same protocol within maybe 3 years. So far, Jonathan has done an awful lot of commuting, and happily is responding really well.
                                Karen
                                • August 9, 2013 at 12:09 am
                                NYKaren
                                Participant
                                  Please see melanomainternational.org’s posting in stage IV forum where this therapy is discussed and followed byJonathan, a responder. Please read carefully, so far he’s only been seen only at Vanderbilt– was originally thought that Yale-New Haven, Dr. Mario Sznol, would start same protocol within maybe 3 years. So far, Jonathan has done an awful lot of commuting, and happily is responding really well.
                                  Karen
                                  • August 9, 2013 at 12:12 am
                                  NYKaren
                                  Participant
                                    Sorry for that horrible grammar!
                                    • August 9, 2013 at 12:12 am
                                    NYKaren
                                    Participant
                                      Sorry for that horrible grammar!
                                      • August 15, 2013 at 3:31 am
                                      BrianP
                                      Participant

                                        Margo,

                                        I echo Karen and Agne's comments about the ADC trial.  Not sure if the LA or Nashville location is workable for you but if it is then this is definitely an option worth considering (I think there may be a Michigan location also).  Here's the link that Johnathan has been blogging about his experiences with the trial on the MIF forum:

                                        http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34242 

                                        I looked into the trial myself when it started to look uncertain if I was going to be able to enter a Nivo/IPI trial.  From the time I contacted their clinical trial coordinator to the time I had my first consult with Dr. Infante at Nashville was 2 weeks or less.  The Nashville coordinators email address is:  [email protected]  

                                        I wish you the best Margo and will be praying for you.

                                        Brian

                                        • August 15, 2013 at 3:31 am
                                        BrianP
                                        Participant

                                          Margo,

                                          I echo Karen and Agne's comments about the ADC trial.  Not sure if the LA or Nashville location is workable for you but if it is then this is definitely an option worth considering (I think there may be a Michigan location also).  Here's the link that Johnathan has been blogging about his experiences with the trial on the MIF forum:

                                          http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34242 

                                          I looked into the trial myself when it started to look uncertain if I was going to be able to enter a Nivo/IPI trial.  From the time I contacted their clinical trial coordinator to the time I had my first consult with Dr. Infante at Nashville was 2 weeks or less.  The Nashville coordinators email address is:  [email protected]  

                                          I wish you the best Margo and will be praying for you.

                                          Brian

                                          • August 15, 2013 at 3:31 am
                                          BrianP
                                          Participant

                                            Margo,

                                            I echo Karen and Agne's comments about the ADC trial.  Not sure if the LA or Nashville location is workable for you but if it is then this is definitely an option worth considering (I think there may be a Michigan location also).  Here's the link that Johnathan has been blogging about his experiences with the trial on the MIF forum:

                                            http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34242 

                                            I looked into the trial myself when it started to look uncertain if I was going to be able to enter a Nivo/IPI trial.  From the time I contacted their clinical trial coordinator to the time I had my first consult with Dr. Infante at Nashville was 2 weeks or less.  The Nashville coordinators email address is:  [email protected]  

                                            I wish you the best Margo and will be praying for you.

                                            Brian

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