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Two new mets
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Two new mets

› Forums › General Melanoma Community › Two new mets

  • Post
    • November 23, 2013 at 3:50 pm
    Brendan
    Participant

      Hi Everyone,

      [I posted this on MIF as well]

       
      I have not posted in a while but I continue to read daily.  After Craniotomy #2 in June I enjoyed NED status for about 4-5 months.  I recently had a brain MRI and a chest, abdomen, pelvis CT.  The brain MRI looks good (no signs of anything new and surgical cavity continues to improve).  Unfortunately, two new mets were found in my lungs (2mm in left lung and 16mm in right lung).  
       
      The appointment was Friday at 5pm so I will have to wait out the weekend before anything happens (phone calls, planning, etc.).  I am UPenn in Philadelphia and my doctor is a melanoma specialist.  It might be difficult for me to get into a PD1 trial because I have been on some type of steroid since Feb 2012 (now on prednisone 5mg).
       
      Here is my melanoma history:
      2008
      Sept-Stage I-left ear-SNLB negative
       
      2011
      Sept-Stage IV-left lung (23mm met)-NED after lung surgery-then ipi.  
       
      2012
      January-ipi leads to hypopituitarism (still NED)
      June-brain met discovered
      July-Cyberknife for brain met #1
      Sept/Oct-second round of ipi 
      November-Crani #1
       
      2013
      April-brain met recurrence
      May-GammaKnife for brain met recurrence 
      June-Crani #2-Gliadel wafers left in surgical cavity
      November-2mm met (left lung) and 16mm met (right lung); normal LDH (138)
       
      My only mutation is P53
       
      So … Here were the options we briefly discussed:
       
      Goal #1 is to find find a PD1 trial.
      Other possibilities:
      -surgery on right lung
      -radiation/ipi combo (but doc is not sure about round 3 of ipi)
      -TIL at NCI
      -IL2 
      –Ipi + IDO (new immuno) Phase 1 trial (I just heard of this one)
       
      Going into this appointment, I was ready crani #3 (going for JAG's record) so this was quite a curveball.  Thanks for reading.  Any suggestions would be appreciated.  
       
      Happy Thanksgiving!
       
      Brendan
    Viewing 11 reply threads
    • Replies
        • November 23, 2013 at 6:55 pm
        awillett1991
        Participant

          Brendan – I was recently on Merck's PD1 phase 2 trial and it allowed steroids up to 7.5 mg prednisone or equivalent so don't discount this option!

          Amy

          • November 23, 2013 at 6:55 pm
          awillett1991
          Participant

            Brendan – I was recently on Merck's PD1 phase 2 trial and it allowed steroids up to 7.5 mg prednisone or equivalent so don't discount this option!

            Amy

            • November 23, 2013 at 6:55 pm
            awillett1991
            Participant

              Brendan – I was recently on Merck's PD1 phase 2 trial and it allowed steroids up to 7.5 mg prednisone or equivalent so don't discount this option!

              Amy

              • November 23, 2013 at 7:09 pm
              POW
              Participant

                Hi, Brendan-

                My goodness! It sounds like you have gone a lot of rounds with melanoma over the years. But it also sounds like you have made a lot of smart decisions and have won all of the skirmishes to date. Good for you! Given your success, I think you will make the right choice again this time. So I will just give you some general information.

                Developing the odd brain met is not at all unusual with melanoma. In your case, they seem to have been found quickly and treated aggressively. So right now your new and probably main concern is the lung mets. And, of course, becoming NED forever.

                Melanoma is a type of cancer that can be found and destroyed by your immune system. However, melanoma is clever– it produces compounds that inhibit your immune response, allowing the melanoma to run rampant. People describe this as the melanoma "hiding" itself from the immune system.

                Ipilumimab (Yervoy) prevents the melanoma from hiding from your immune system by blocking the protein CTL-4. From what you describe, it sounds like the ipi treatments did work for you. If they hadn't, I would expect you to be much worse off today than you are. So that's good. The problem is that for you, ipi alone is not quite enough.

                INCB024360 blocks another protein called IDO (indoleamine 2,3-dioxygenase) that the melanoma produces to inhibit your immune response. Early-phase clinical trials with other types of cancer indicate that an IDO inhibitor can significantly enhance the effect of ipi. So now researchers want to try the combination of ipi + IDO on melanoma. That is the purpose of clinical trial NCT01604889 (I assume that is the one you are talking about). 

                Since you know that you are a responder to ipi, you might be a very good candidate for ipi + IDO.

                You have a lot of options and a lot to think about. I hope that this information is useful for you.

                 

                  • November 23, 2013 at 7:43 pm
                  Cooper
                  Participant

                    Brendan,

                     POW's trial suggestion wont' work for you as you've have 2 rounds of IPI and IPI is an exclusion.  Maybe round three of IPI and radiation might help?

                    • November 23, 2013 at 7:43 pm
                    Cooper
                    Participant

                      Brendan,

                       POW's trial suggestion wont' work for you as you've have 2 rounds of IPI and IPI is an exclusion.  Maybe round three of IPI and radiation might help?

                      • November 23, 2013 at 7:43 pm
                      Cooper
                      Participant

                        Brendan,

                         POW's trial suggestion wont' work for you as you've have 2 rounds of IPI and IPI is an exclusion.  Maybe round three of IPI and radiation might help?

                      • November 23, 2013 at 7:09 pm
                      POW
                      Participant

                        Hi, Brendan-

                        My goodness! It sounds like you have gone a lot of rounds with melanoma over the years. But it also sounds like you have made a lot of smart decisions and have won all of the skirmishes to date. Good for you! Given your success, I think you will make the right choice again this time. So I will just give you some general information.

                        Developing the odd brain met is not at all unusual with melanoma. In your case, they seem to have been found quickly and treated aggressively. So right now your new and probably main concern is the lung mets. And, of course, becoming NED forever.

                        Melanoma is a type of cancer that can be found and destroyed by your immune system. However, melanoma is clever– it produces compounds that inhibit your immune response, allowing the melanoma to run rampant. People describe this as the melanoma "hiding" itself from the immune system.

                        Ipilumimab (Yervoy) prevents the melanoma from hiding from your immune system by blocking the protein CTL-4. From what you describe, it sounds like the ipi treatments did work for you. If they hadn't, I would expect you to be much worse off today than you are. So that's good. The problem is that for you, ipi alone is not quite enough.

                        INCB024360 blocks another protein called IDO (indoleamine 2,3-dioxygenase) that the melanoma produces to inhibit your immune response. Early-phase clinical trials with other types of cancer indicate that an IDO inhibitor can significantly enhance the effect of ipi. So now researchers want to try the combination of ipi + IDO on melanoma. That is the purpose of clinical trial NCT01604889 (I assume that is the one you are talking about). 

                        Since you know that you are a responder to ipi, you might be a very good candidate for ipi + IDO.

                        You have a lot of options and a lot to think about. I hope that this information is useful for you.

                         

                        • November 23, 2013 at 7:09 pm
                        POW
                        Participant

                          Hi, Brendan-

                          My goodness! It sounds like you have gone a lot of rounds with melanoma over the years. But it also sounds like you have made a lot of smart decisions and have won all of the skirmishes to date. Good for you! Given your success, I think you will make the right choice again this time. So I will just give you some general information.

                          Developing the odd brain met is not at all unusual with melanoma. In your case, they seem to have been found quickly and treated aggressively. So right now your new and probably main concern is the lung mets. And, of course, becoming NED forever.

                          Melanoma is a type of cancer that can be found and destroyed by your immune system. However, melanoma is clever– it produces compounds that inhibit your immune response, allowing the melanoma to run rampant. People describe this as the melanoma "hiding" itself from the immune system.

                          Ipilumimab (Yervoy) prevents the melanoma from hiding from your immune system by blocking the protein CTL-4. From what you describe, it sounds like the ipi treatments did work for you. If they hadn't, I would expect you to be much worse off today than you are. So that's good. The problem is that for you, ipi alone is not quite enough.

                          INCB024360 blocks another protein called IDO (indoleamine 2,3-dioxygenase) that the melanoma produces to inhibit your immune response. Early-phase clinical trials with other types of cancer indicate that an IDO inhibitor can significantly enhance the effect of ipi. So now researchers want to try the combination of ipi + IDO on melanoma. That is the purpose of clinical trial NCT01604889 (I assume that is the one you are talking about). 

                          Since you know that you are a responder to ipi, you might be a very good candidate for ipi + IDO.

                          You have a lot of options and a lot to think about. I hope that this information is useful for you.

                           

                          • November 23, 2013 at 11:40 pm
                          Mat
                          Participant

                            Brendan, sorry to hear about your recurrence.  I'm also at UPenn, so I know you're with a great team.  Regarding TIL, you should check but I have a recollection that you need to be steroid free for that procedure.

                            • November 23, 2013 at 11:40 pm
                            Mat
                            Participant

                              Brendan, sorry to hear about your recurrence.  I'm also at UPenn, so I know you're with a great team.  Regarding TIL, you should check but I have a recollection that you need to be steroid free for that procedure.

                              • November 23, 2013 at 11:40 pm
                              Mat
                              Participant

                                Brendan, sorry to hear about your recurrence.  I'm also at UPenn, so I know you're with a great team.  Regarding TIL, you should check but I have a recollection that you need to be steroid free for that procedure.

                                • November 26, 2013 at 11:06 pm
                                Brendan
                                Participant

                                  Hi Everyone,

                                  Thanks for your posts.  Earlier today I thought I was in PD1 a trial at Sloan Kettering, but by the afternoon I was told that the trial had closed.  It's a shame that getting into a potentially life saving trial is similar to scoring a table at a hot restaurant.  I can still have surgery on my right lung (16mm) and then leave the other one there (2mm) for now.

                                  Thanks for your help.  I will keep searching.

                                  Brendan

                                   

                                  • November 26, 2013 at 11:06 pm
                                  Brendan
                                  Participant

                                    Hi Everyone,

                                    Thanks for your posts.  Earlier today I thought I was in PD1 a trial at Sloan Kettering, but by the afternoon I was told that the trial had closed.  It's a shame that getting into a potentially life saving trial is similar to scoring a table at a hot restaurant.  I can still have surgery on my right lung (16mm) and then leave the other one there (2mm) for now.

                                    Thanks for your help.  I will keep searching.

                                    Brendan

                                     

                                      • November 27, 2013 at 9:22 am
                                      Mat
                                      Participant

                                        Brendan, stupid question, but I was at Sloan a few weeks ago and asked about a trial.  The doctor told me that the trial was closed.  However, upon further research, I learned that while the Sloan trial site was closed (i.e., full), other trial sites were still recruiting.  Is it possible that you had a similar communication issue?

                                        • November 27, 2013 at 9:22 am
                                        Mat
                                        Participant

                                          Brendan, stupid question, but I was at Sloan a few weeks ago and asked about a trial.  The doctor told me that the trial was closed.  However, upon further research, I learned that while the Sloan trial site was closed (i.e., full), other trial sites were still recruiting.  Is it possible that you had a similar communication issue?

                                          • November 27, 2013 at 9:22 am
                                          Mat
                                          Participant

                                            Brendan, stupid question, but I was at Sloan a few weeks ago and asked about a trial.  The doctor told me that the trial was closed.  However, upon further research, I learned that while the Sloan trial site was closed (i.e., full), other trial sites were still recruiting.  Is it possible that you had a similar communication issue?

                                          • November 26, 2013 at 11:06 pm
                                          Brendan
                                          Participant

                                            Hi Everyone,

                                            Thanks for your posts.  Earlier today I thought I was in PD1 a trial at Sloan Kettering, but by the afternoon I was told that the trial had closed.  It's a shame that getting into a potentially life saving trial is similar to scoring a table at a hot restaurant.  I can still have surgery on my right lung (16mm) and then leave the other one there (2mm) for now.

                                            Thanks for your help.  I will keep searching.

                                            Brendan

                                             

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