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What are stage IV modern treatment options?!
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What are stage IV modern treatment options?!

› Forums › General Melanoma Community › What are stage IV modern treatment options?!

  • Post
    • October 28, 2013 at 10:34 pm
    hopeagain
    Participant

      Was stage IV with many mets everyone. Ipilimumab extrememly successful taken initially 6 years ago, and received boosts twice along the way but cannot receive again due to a side effect from the IPI. Now mets to liver and need some update on new treatments (not biochemo/IL-2/interferon) [such as anti-PD1, etc…] and if you had any experience with them.

      THank you very much,

    Viewing 5 reply threads
    • Replies
        • October 30, 2013 at 5:32 pm
        Matt_C
        Participant

          Ask your oncologist about the National Cancer Institute at the National Institute of Health in Bethesda, MD.  They have a melanoma clinic.  What an amazing federal program that appears to be somewhat of a secret.  NIH was in the news quite a bit during the government shutdown because they were unable to accept new patients, current patients were treated however.  We had never heard of NIH until we ran out of aggressive treatment options after unsuccessfully trying high dose IL-2 and Yervoy (Ipilimumab) without success.  Much of the talk of long term treatment options revolves around immune therapy and NIH seems to be on the leading edge of this therapy.  My wife, stage 4, is currently in a trial at NIH using BRAF inhibitors (not available for all patients, requires genetic disposition) and TIL (Tumor Infiltrating Lymphocyte) therapy.  They are doing amazing things there and the program features are amazing too.  Her TIL cells are growing and she will be undergoing the 3 week inpatient TIL therapy soon. We have hope now!!!

          • October 30, 2013 at 5:32 pm
          Matt_C
          Participant

            Ask your oncologist about the National Cancer Institute at the National Institute of Health in Bethesda, MD.  They have a melanoma clinic.  What an amazing federal program that appears to be somewhat of a secret.  NIH was in the news quite a bit during the government shutdown because they were unable to accept new patients, current patients were treated however.  We had never heard of NIH until we ran out of aggressive treatment options after unsuccessfully trying high dose IL-2 and Yervoy (Ipilimumab) without success.  Much of the talk of long term treatment options revolves around immune therapy and NIH seems to be on the leading edge of this therapy.  My wife, stage 4, is currently in a trial at NIH using BRAF inhibitors (not available for all patients, requires genetic disposition) and TIL (Tumor Infiltrating Lymphocyte) therapy.  They are doing amazing things there and the program features are amazing too.  Her TIL cells are growing and she will be undergoing the 3 week inpatient TIL therapy soon. We have hope now!!!

            • October 30, 2013 at 5:32 pm
            Matt_C
            Participant

              Ask your oncologist about the National Cancer Institute at the National Institute of Health in Bethesda, MD.  They have a melanoma clinic.  What an amazing federal program that appears to be somewhat of a secret.  NIH was in the news quite a bit during the government shutdown because they were unable to accept new patients, current patients were treated however.  We had never heard of NIH until we ran out of aggressive treatment options after unsuccessfully trying high dose IL-2 and Yervoy (Ipilimumab) without success.  Much of the talk of long term treatment options revolves around immune therapy and NIH seems to be on the leading edge of this therapy.  My wife, stage 4, is currently in a trial at NIH using BRAF inhibitors (not available for all patients, requires genetic disposition) and TIL (Tumor Infiltrating Lymphocyte) therapy.  They are doing amazing things there and the program features are amazing too.  Her TIL cells are growing and she will be undergoing the 3 week inpatient TIL therapy soon. We have hope now!!!

              • October 31, 2013 at 2:42 pm
              JerryfromFauq
              Participant

                One factor is what Oncoprotein overexpression and or DNA mutation you have (LDH levels can also effect what would be likely to help the most.)  Do you have PD-L1.  Since 2008, I have personally recommended the PD-1 for those that can get into those trials as a first attempt.

                  • November 12, 2013 at 4:34 pm
                  hopeagain
                  Participant

                    Have you received PD-1? I did not see in your bio that you did. How come? We are seriously considering PD-1. Are there any other treatments? I know of the anti-Braf drugs. Are they hleping for long term? Yervoy helped for many years, but stopped due to side effects, and looking for alternatives since there is a recurrence. IL-2 high dose is irrelevant and biochemo was already done prior to Yervoy.

                     

                    • November 12, 2013 at 4:34 pm
                    hopeagain
                    Participant

                      Have you received PD-1? I did not see in your bio that you did. How come? We are seriously considering PD-1. Are there any other treatments? I know of the anti-Braf drugs. Are they hleping for long term? Yervoy helped for many years, but stopped due to side effects, and looking for alternatives since there is a recurrence. IL-2 high dose is irrelevant and biochemo was already done prior to Yervoy.

                       

                      • November 12, 2013 at 4:34 pm
                      hopeagain
                      Participant

                        Have you received PD-1? I did not see in your bio that you did. How come? We are seriously considering PD-1. Are there any other treatments? I know of the anti-Braf drugs. Are they hleping for long term? Yervoy helped for many years, but stopped due to side effects, and looking for alternatives since there is a recurrence. IL-2 high dose is irrelevant and biochemo was already done prior to Yervoy.

                         

                      • October 31, 2013 at 2:42 pm
                      JerryfromFauq
                      Participant

                        One factor is what Oncoprotein overexpression and or DNA mutation you have (LDH levels can also effect what would be likely to help the most.)  Do you have PD-L1.  Since 2008, I have personally recommended the PD-1 for those that can get into those trials as a first attempt.

                        • October 31, 2013 at 2:42 pm
                        JerryfromFauq
                        Participant

                          One factor is what Oncoprotein overexpression and or DNA mutation you have (LDH levels can also effect what would be likely to help the most.)  Do you have PD-L1.  Since 2008, I have personally recommended the PD-1 for those that can get into those trials as a first attempt.

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