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Has anyone had post-surg adjuvant therapy in Stage IV?

Forums General Melanoma Community Has anyone had post-surg adjuvant therapy in Stage IV?

  • Post
    LaurenE
    Participant

      My dad was diagnosed with metastatic melanoma (primary lesion was removed years ago, later developed one tumor in each lung and then one in the soft tissue of his neck) this past spring and had two surgeries this summer to remove all of the known mets. There was one positive lymph node and some local mets in his neck dissection, and one of the tumor resections of the lung had iffy margins. We have been offered adjuvant radiation to the lung for residual disease, but we have run into road blocks in terms of receiving anything further. Several experts have been kind enough to consult with us over the phone and have said they would try to give him ipilimumab even if there was no tumor to monitor, however as this is technically considered adjuvant, it is not FDA approved. Regardless, we know the melanoma is not gone, it is still metastatic, and I think that some insurance companies could approve it – but none of our local oncologists will offer it – or even IL-2 (and we are concerned that in the end these experts may waiver on offering it, as well, if we transfer care). 

      Has ANYONE out there been offered systemic treatment after surgical removal of all known mets? If so, what? And by whom? 

      Thank you in advance for any insight!

       

    Viewing 14 reply threads
    • Replies
        eric w
        Participant

          Moffit had an ipi/pd-1 trial for folks who are NED after surgery…

          eric w
          Participant

            Moffit had an ipi/pd-1 trial for folks who are NED after surgery…

            eric w
            Participant

              Moffit had an ipi/pd-1 trial for folks who are NED after surgery…

              Janner
              Participant

                I know they will not do IL-2 without measurable mets.  It's a very tough regimen and they will not do it "adjuvant".  They want to do two rounds, then scans and see if anything changes.  Yervoy is in clinical trials for "adjuvant", but technically is off-label for NED.  Can you possibly look at a trial?  There may be an "interferon vs Yervoy" trial.  If he gets Interferon, you could always withdraw.  But if your father would not qualify for a trial for other health reasons, it might be easier to convince a doctor to prescribe it off-label.  Just a thought.

                Janner
                Participant

                  I know they will not do IL-2 without measurable mets.  It's a very tough regimen and they will not do it "adjuvant".  They want to do two rounds, then scans and see if anything changes.  Yervoy is in clinical trials for "adjuvant", but technically is off-label for NED.  Can you possibly look at a trial?  There may be an "interferon vs Yervoy" trial.  If he gets Interferon, you could always withdraw.  But if your father would not qualify for a trial for other health reasons, it might be easier to convince a doctor to prescribe it off-label.  Just a thought.

                  Janner
                  Participant

                    I know they will not do IL-2 without measurable mets.  It's a very tough regimen and they will not do it "adjuvant".  They want to do two rounds, then scans and see if anything changes.  Yervoy is in clinical trials for "adjuvant", but technically is off-label for NED.  Can you possibly look at a trial?  There may be an "interferon vs Yervoy" trial.  If he gets Interferon, you could always withdraw.  But if your father would not qualify for a trial for other health reasons, it might be easier to convince a doctor to prescribe it off-label.  Just a thought.

                    kylez
                    Participant

                      Yervoy. Like your Dad I was pretty sure I was sure disease was still around. I think it made huge difference. An academic medical center made it happen.

                      kylez
                      Participant

                        Yervoy. Like your Dad I was pretty sure I was sure disease was still around. I think it made huge difference. An academic medical center made it happen.

                        kylez
                        Participant

                          Yervoy. Like your Dad I was pretty sure I was sure disease was still around. I think it made huge difference. An academic medical center made it happen.

                          Bubbles
                          Participant

                            Adjuvant treatments seem to provide a good deal of help as many immunotherapies work best when there is a low tumor burden. I was lucky enough to enroll in an anti-PD1 (Nivo, now opdivo) trial for NED patients in 2010 and remain NED. Now however, that has dried up a bit….leaving NED patients fewer options though there are still some trial openings with ipi as an adjuvant (last I knew) and since it is FDA approved, more likely that it could be prescribed though insurance coverage may be difficult. You can search my blog for more info that may be helpful to you if you like. I wish you and your dad my best. Celeste

                            Bubbles
                            Participant

                              Adjuvant treatments seem to provide a good deal of help as many immunotherapies work best when there is a low tumor burden. I was lucky enough to enroll in an anti-PD1 (Nivo, now opdivo) trial for NED patients in 2010 and remain NED. Now however, that has dried up a bit….leaving NED patients fewer options though there are still some trial openings with ipi as an adjuvant (last I knew) and since it is FDA approved, more likely that it could be prescribed though insurance coverage may be difficult. You can search my blog for more info that may be helpful to you if you like. I wish you and your dad my best. Celeste

                              Bubbles
                              Participant

                                Adjuvant treatments seem to provide a good deal of help as many immunotherapies work best when there is a low tumor burden. I was lucky enough to enroll in an anti-PD1 (Nivo, now opdivo) trial for NED patients in 2010 and remain NED. Now however, that has dried up a bit….leaving NED patients fewer options though there are still some trial openings with ipi as an adjuvant (last I knew) and since it is FDA approved, more likely that it could be prescribed though insurance coverage may be difficult. You can search my blog for more info that may be helpful to you if you like. I wish you and your dad my best. Celeste

                                BrianP
                                Participant

                                  Lauren,

                                  I was stage IV NED a little over a year ago and had the same mindset you have.  Being NED is a great place to be but it sure makes the treatment options tough.  At the time I was told by more than one doctor that Ipi was not an option for NED but I have since learned that is not true.  There's been a couple Stage IV NED threads on MIF that I have copied the links to below.  One is from a patient (cheris) that just started Ipi a few weeks ago.  You may be able to reach out to her and see how she managed to get the treatment approved.  Not sure where you are and your ability to travel but the two sites I visited and consulted while NED were Moffitt and UVA.  I'm not sure about Moffitt now but I'm pretty sure UVA is still taking patients for one or two of their vaccine trials.  In fact I think they have an adjuvant trial combining Ipi and one of their vaccines.  It may be worth contacting them if you are not able to get Ipi from your doctors.  You can contact me through MPIP if you need a contact number.

                                  http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34965&p=44453&hilit=brian#p44453

                                  http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=35214&p=45530&hilit=brian+first#p45530

                                  Brian

                                   

                                  BrianP
                                  Participant

                                    Lauren,

                                    I was stage IV NED a little over a year ago and had the same mindset you have.  Being NED is a great place to be but it sure makes the treatment options tough.  At the time I was told by more than one doctor that Ipi was not an option for NED but I have since learned that is not true.  There's been a couple Stage IV NED threads on MIF that I have copied the links to below.  One is from a patient (cheris) that just started Ipi a few weeks ago.  You may be able to reach out to her and see how she managed to get the treatment approved.  Not sure where you are and your ability to travel but the two sites I visited and consulted while NED were Moffitt and UVA.  I'm not sure about Moffitt now but I'm pretty sure UVA is still taking patients for one or two of their vaccine trials.  In fact I think they have an adjuvant trial combining Ipi and one of their vaccines.  It may be worth contacting them if you are not able to get Ipi from your doctors.  You can contact me through MPIP if you need a contact number.

                                    http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34965&p=44453&hilit=brian#p44453

                                    http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=35214&p=45530&hilit=brian+first#p45530

                                    Brian

                                     

                                    BrianP
                                    Participant

                                      Lauren,

                                      I was stage IV NED a little over a year ago and had the same mindset you have.  Being NED is a great place to be but it sure makes the treatment options tough.  At the time I was told by more than one doctor that Ipi was not an option for NED but I have since learned that is not true.  There's been a couple Stage IV NED threads on MIF that I have copied the links to below.  One is from a patient (cheris) that just started Ipi a few weeks ago.  You may be able to reach out to her and see how she managed to get the treatment approved.  Not sure where you are and your ability to travel but the two sites I visited and consulted while NED were Moffitt and UVA.  I'm not sure about Moffitt now but I'm pretty sure UVA is still taking patients for one or two of their vaccine trials.  In fact I think they have an adjuvant trial combining Ipi and one of their vaccines.  It may be worth contacting them if you are not able to get Ipi from your doctors.  You can contact me through MPIP if you need a contact number.

                                      http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34965&p=44453&hilit=brian#p44453

                                      http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=35214&p=45530&hilit=brian+first#p45530

                                      Brian

                                       

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