Stage 4 NED…clinical trial or wait it out
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Stage 4 NED…clinical trial or wait it out

› Forums › General Melanoma Community › Stage 4 NED…clinical trial or wait it out

  • Post
    • November 7, 2012 at 11:33 pm
    tjc0912
    Participant

      Hi all…I have been reading these posts for a couple of months now but this is my first time writing.  I am looking for some advice and thought this might be the best place to get it.  My father is 64 years old and has lived a very healthy life until being diagnosed with Stage IV melanoma.  The satillite tumor started on his back and was removed in July.  His lymph nodes were clear but in August a spot was found on his lung (traveled through the blood) and was removed in September.  His last CT scan a week ago showed NED so he is trying to decide what to do next.&n

      Hi all…I have been reading these posts for a couple of months now but this is my first time writing.  I am looking for some advice and thought this might be the best place to get it.  My father is 64 years old and has lived a very healthy life until being diagnosed with Stage IV melanoma.  The satillite tumor started on his back and was removed in July.  His lymph nodes were clear but in August a spot was found on his lung (traveled through the blood) and was removed in September.  His last CT scan a week ago showed NED so he is trying to decide what to do next.  One doctor in NY suggests he get CT scans every three months and when it returns start treatment then (ipilimumab or possibly Anti PD1 trial).  Another doctor in Boston suggests that he enter into a clinical trial now while he is NED, the trial consists on either Ipilimumab or interferon.  We are trying to decide the best path to take and are looking for any help or any suggestions?  He is feeling so good and healthy now that he isn't sure if he wants to feel awful for a year of the trial.  We also keep hearing that neither med in the trial have very good results, so is it worth it?

      Thank you for any advice!

         

    Viewing 17 reply threads
    • Replies
        • November 8, 2012 at 12:33 am
        seastman14
        Participant

          I am in the exact same boat as you. My dad is 56 great shape worked all his life. He has stage 4 melanoma. He is going to have his 3 surgery next week. But after that they have gave him 3 options 1. take a shot of chemo everyday for a year (he doesnt want to be sick) 2. experiental drugs 3. go to a cancer treatment center anywhere in the US every 2 weeks for treatment. I have no idea what we should do? If anyone has any advice for us and what treatment options are best please let us know!!!

          • November 8, 2012 at 12:33 am
          seastman14
          Participant

            I am in the exact same boat as you. My dad is 56 great shape worked all his life. He has stage 4 melanoma. He is going to have his 3 surgery next week. But after that they have gave him 3 options 1. take a shot of chemo everyday for a year (he doesnt want to be sick) 2. experiental drugs 3. go to a cancer treatment center anywhere in the US every 2 weeks for treatment. I have no idea what we should do? If anyone has any advice for us and what treatment options are best please let us know!!!

            • November 8, 2012 at 12:33 am
            seastman14
            Participant

              I am in the exact same boat as you. My dad is 56 great shape worked all his life. He has stage 4 melanoma. He is going to have his 3 surgery next week. But after that they have gave him 3 options 1. take a shot of chemo everyday for a year (he doesnt want to be sick) 2. experiental drugs 3. go to a cancer treatment center anywhere in the US every 2 weeks for treatment. I have no idea what we should do? If anyone has any advice for us and what treatment options are best please let us know!!!

              • November 8, 2012 at 12:34 am
              seastman14
              Participant

                I am in the exact same boat as you. My dad is 56 great shape worked all his life. He has stage 4 melanoma. He is going to have his 3 surgery next week. But after that they have gave him 3 options 1. take a shot of chemo everyday for a year (he doesnt want to be sick) 2. experiental drugs 3. go to a cancer treatment center anywhere in the US every 2 weeks for treatment. I have no idea what we should do? If anyone has any advice for us and what treatment options are best please let us know!!!

                • November 8, 2012 at 12:34 am
                seastman14
                Participant

                  I am in the exact same boat as you. My dad is 56 great shape worked all his life. He has stage 4 melanoma. He is going to have his 3 surgery next week. But after that they have gave him 3 options 1. take a shot of chemo everyday for a year (he doesnt want to be sick) 2. experiental drugs 3. go to a cancer treatment center anywhere in the US every 2 weeks for treatment. I have no idea what we should do? If anyone has any advice for us and what treatment options are best please let us know!!!

                    • November 8, 2012 at 4:06 am
                    POW
                    Participant

                      With a single met here and a single met there, I would wait and watch and have each met removed surgically for as long as possible. I would only consider a systemic treatment when and if I had several mets all at once and/or I had a met that could not be sugically removed. 

                      Ipi and interferon are already FDA approved. So is Zelboraf, which is even better (assuming the melanoma has the BRAF mutation). So you could take any of those drugs without being in a clinical trial. Several other promising drugs like Dabrafenib, MEK, and anti-PD1 are now in clinical trials and may be FDA approved by the time you need them. Why take a less effective drug now if you don't have to? More effective drugs will probably be available in a year or two. Furthermore, any treatment or clinical trial you take now may disqualify you from even better clinical trials later. 

                      So I guess I would 1) wait and watch and hope that the cancer doesn't come back for a long time, if ever; 2) have any tumors surgically removed as long as possible; 3) get the tumor tested for the BRAF mutation; 4) see what my options are when and if I get to the point where surgery is no longer the answer. 

                      • November 8, 2012 at 4:06 am
                      POW
                      Participant

                        With a single met here and a single met there, I would wait and watch and have each met removed surgically for as long as possible. I would only consider a systemic treatment when and if I had several mets all at once and/or I had a met that could not be sugically removed. 

                        Ipi and interferon are already FDA approved. So is Zelboraf, which is even better (assuming the melanoma has the BRAF mutation). So you could take any of those drugs without being in a clinical trial. Several other promising drugs like Dabrafenib, MEK, and anti-PD1 are now in clinical trials and may be FDA approved by the time you need them. Why take a less effective drug now if you don't have to? More effective drugs will probably be available in a year or two. Furthermore, any treatment or clinical trial you take now may disqualify you from even better clinical trials later. 

                        So I guess I would 1) wait and watch and hope that the cancer doesn't come back for a long time, if ever; 2) have any tumors surgically removed as long as possible; 3) get the tumor tested for the BRAF mutation; 4) see what my options are when and if I get to the point where surgery is no longer the answer. 

                        • November 8, 2012 at 4:06 am
                        POW
                        Participant

                          With a single met here and a single met there, I would wait and watch and have each met removed surgically for as long as possible. I would only consider a systemic treatment when and if I had several mets all at once and/or I had a met that could not be sugically removed. 

                          Ipi and interferon are already FDA approved. So is Zelboraf, which is even better (assuming the melanoma has the BRAF mutation). So you could take any of those drugs without being in a clinical trial. Several other promising drugs like Dabrafenib, MEK, and anti-PD1 are now in clinical trials and may be FDA approved by the time you need them. Why take a less effective drug now if you don't have to? More effective drugs will probably be available in a year or two. Furthermore, any treatment or clinical trial you take now may disqualify you from even better clinical trials later. 

                          So I guess I would 1) wait and watch and hope that the cancer doesn't come back for a long time, if ever; 2) have any tumors surgically removed as long as possible; 3) get the tumor tested for the BRAF mutation; 4) see what my options are when and if I get to the point where surgery is no longer the answer. 

                        • November 8, 2012 at 12:34 am
                        seastman14
                        Participant

                          I am in the exact same boat as you. My dad is 56 great shape worked all his life. He has stage 4 melanoma. He is going to have his 3 surgery next week. But after that they have gave him 3 options 1. take a shot of chemo everyday for a year (he doesnt want to be sick) 2. experiental drugs 3. go to a cancer treatment center anywhere in the US every 2 weeks for treatment. I have no idea what we should do? If anyone has any advice for us and what treatment options are best please let us know!!!

                          • November 8, 2012 at 2:20 pm
                          audgator
                          Participant

                            I am far from an expert on this forum but I've been through some of this stuff.  Neither ipi nor interferon worked for me but ipi obviously works for some people. I would agree with POW's post. I ended up with mutiple small mets and got in an anti-PD1 trial which is working.  As to the poster who listed 3 choices for Dad, I don't understand the choices. I hope you do. If so, can you explain more fully?  If not…find out!        Dan

                            • November 8, 2012 at 2:20 pm
                            audgator
                            Participant

                              I am far from an expert on this forum but I've been through some of this stuff.  Neither ipi nor interferon worked for me but ipi obviously works for some people. I would agree with POW's post. I ended up with mutiple small mets and got in an anti-PD1 trial which is working.  As to the poster who listed 3 choices for Dad, I don't understand the choices. I hope you do. If so, can you explain more fully?  If not…find out!        Dan

                              • November 8, 2012 at 2:20 pm
                              audgator
                              Participant

                                I am far from an expert on this forum but I've been through some of this stuff.  Neither ipi nor interferon worked for me but ipi obviously works for some people. I would agree with POW's post. I ended up with mutiple small mets and got in an anti-PD1 trial which is working.  As to the poster who listed 3 choices for Dad, I don't understand the choices. I hope you do. If so, can you explain more fully?  If not…find out!        Dan

                                • November 8, 2012 at 6:36 pm
                                frankMill
                                Participant

                                  I'm also stage IV NED.  Being treated by Dr. Weber at Moffitt, what a great facility!  Tried to get into the tail-end of the PD-1 trail but didn't have the HLA antigen.  So then they tested my tumor for Mage and it was positive.  I received the first treatment on Tuesday (Mage-A3 with Poly booster).  Got some minor flu like side effects, but it was no big deal.  Hoping that the Mage will work.  The Mage NED trial is just starting, Moffitt had about 44 slots.

                                  I wish you all the best!

                                  Frank

                                  • November 8, 2012 at 6:36 pm
                                  frankMill
                                  Participant

                                    I'm also stage IV NED.  Being treated by Dr. Weber at Moffitt, what a great facility!  Tried to get into the tail-end of the PD-1 trail but didn't have the HLA antigen.  So then they tested my tumor for Mage and it was positive.  I received the first treatment on Tuesday (Mage-A3 with Poly booster).  Got some minor flu like side effects, but it was no big deal.  Hoping that the Mage will work.  The Mage NED trial is just starting, Moffitt had about 44 slots.

                                    I wish you all the best!

                                    Frank

                                      • December 22, 2012 at 12:00 am
                                      Omlor
                                      Participant
                                        Hi Frank,

                                        In the very same boat. Just got the call today that I’m positive for mage. Am stage four but NED after two tumors were just removed from my lower intestine by Dr. Zager I said yes to the trial. Have the scans and blood cleaning ahead, but looking forward to the first vaccine. Working with Dr. Kutchakara. Lets see how much life we can squeeze out of the new year. I even hope to work (teaching lit and philosophy to honors kids). Here’s to the adventure. — John

                                        • December 22, 2012 at 12:00 am
                                        Omlor
                                        Participant
                                          Hi Frank,

                                          In the very same boat. Just got the call today that I’m positive for mage. Am stage four but NED after two tumors were just removed from my lower intestine by Dr. Zager I said yes to the trial. Have the scans and blood cleaning ahead, but looking forward to the first vaccine. Working with Dr. Kutchakara. Lets see how much life we can squeeze out of the new year. I even hope to work (teaching lit and philosophy to honors kids). Here’s to the adventure. — John

                                          • December 22, 2012 at 12:00 am
                                          Omlor
                                          Participant
                                            Hi Frank,

                                            In the very same boat. Just got the call today that I’m positive for mage. Am stage four but NED after two tumors were just removed from my lower intestine by Dr. Zager I said yes to the trial. Have the scans and blood cleaning ahead, but looking forward to the first vaccine. Working with Dr. Kutchakara. Lets see how much life we can squeeze out of the new year. I even hope to work (teaching lit and philosophy to honors kids). Here’s to the adventure. — John

                                            • December 22, 2012 at 12:01 am
                                            Omlor
                                            Participant
                                              Hi Frank,

                                              In the very same boat. Just got the call today that I’m positive for mage. Am stage four but NED after two tumors were just removed from my lower intestine by Dr. Zager I said yes to the trial. Have the scans and blood cleaning ahead, but looking forward to the first vaccine. Working with Dr. Kutchakara. Lets see how much life we can squeeze out of the new year. I even hope to work (teaching lit and philosophy to honors kids). Here’s to the adventure. — John

                                              • December 22, 2012 at 12:01 am
                                              Omlor
                                              Participant
                                                Hi Frank,

                                                In the very same boat. Just got the call today that I’m positive for mage. Am stage four but NED after two tumors were just removed from my lower intestine by Dr. Zager I said yes to the trial. Have the scans and blood cleaning ahead, but looking forward to the first vaccine. Working with Dr. Kutchakara. Lets see how much life we can squeeze out of the new year. I even hope to work (teaching lit and philosophy to honors kids). Here’s to the adventure. — John

                                                • December 22, 2012 at 12:01 am
                                                Omlor
                                                Participant
                                                  Hi Frank,

                                                  In the very same boat. Just got the call today that I’m positive for mage. Am stage four but NED after two tumors were just removed from my lower intestine by Dr. Zager I said yes to the trial. Have the scans and blood cleaning ahead, but looking forward to the first vaccine. Working with Dr. Kutchakara. Lets see how much life we can squeeze out of the new year. I even hope to work (teaching lit and philosophy to honors kids). Here’s to the adventure. — John

                                                • November 8, 2012 at 6:36 pm
                                                frankMill
                                                Participant

                                                  I'm also stage IV NED.  Being treated by Dr. Weber at Moffitt, what a great facility!  Tried to get into the tail-end of the PD-1 trail but didn't have the HLA antigen.  So then they tested my tumor for Mage and it was positive.  I received the first treatment on Tuesday (Mage-A3 with Poly booster).  Got some minor flu like side effects, but it was no big deal.  Hoping that the Mage will work.  The Mage NED trial is just starting, Moffitt had about 44 slots.

                                                  I wish you all the best!

                                                  Frank

                                                  • November 10, 2012 at 12:10 am
                                                  john partrick michael murphy
                                                  Participant
                                                    Two years ago I was diagnosed stage IV, with Mel in my lungs, and probably all over. A Boston doctor recommended a trial at MGH sponsored by GSK. I am now undead at 67. Yesterday I bought 7 horny Billie goats to breed our nannies. I am living a normal life. If the Boston doctor has a name like Lawrence or Flaherty, I would do what they said, no matter what anybody else had to say.
                                                    • November 10, 2012 at 12:10 am
                                                    john partrick michael murphy
                                                    Participant
                                                      Two years ago I was diagnosed stage IV, with Mel in my lungs, and probably all over. A Boston doctor recommended a trial at MGH sponsored by GSK. I am now undead at 67. Yesterday I bought 7 horny Billie goats to breed our nannies. I am living a normal life. If the Boston doctor has a name like Lawrence or Flaherty, I would do what they said, no matter what anybody else had to say.
                                                      • November 10, 2012 at 12:10 am
                                                      john partrick michael murphy
                                                      Participant
                                                        Two years ago I was diagnosed stage IV, with Mel in my lungs, and probably all over. A Boston doctor recommended a trial at MGH sponsored by GSK. I am now undead at 67. Yesterday I bought 7 horny Billie goats to breed our nannies. I am living a normal life. If the Boston doctor has a name like Lawrence or Flaherty, I would do what they said, no matter what anybody else had to say.
                                                        • November 10, 2012 at 12:16 am
                                                        john partrick michael murphy
                                                        Participant
                                                          Two years ago I was diagnosed stage IV, with Mel in my lungs, and probably all over. A Boston doctor recommended a trial at MGH sponsored by GSK. I am now undead at 67. Yesterday I bought 7 horny Billie goats to breed our nannies. I am living a normal life.

                                                          If the Boston doctor has a name like Lawrence or Flaherty, I would do what they said, no matter what anybody else had to say. I am not NED but I am very happy to be a substantial responder, coming up on completing 23 months on BRAF/MEL inhibitors. FIGHT THE BEAST and whatever weapons you chose, embrace them and don’t second guess yourself.

                                                          • November 10, 2012 at 12:16 am
                                                          john partrick michael murphy
                                                          Participant
                                                            Two years ago I was diagnosed stage IV, with Mel in my lungs, and probably all over. A Boston doctor recommended a trial at MGH sponsored by GSK. I am now undead at 67. Yesterday I bought 7 horny Billie goats to breed our nannies. I am living a normal life.

                                                            If the Boston doctor has a name like Lawrence or Flaherty, I would do what they said, no matter what anybody else had to say. I am not NED but I am very happy to be a substantial responder, coming up on completing 23 months on BRAF/MEL inhibitors. FIGHT THE BEAST and whatever weapons you chose, embrace them and don’t second guess yourself.

                                                            • November 10, 2012 at 12:16 am
                                                            john partrick michael murphy
                                                            Participant
                                                              Two years ago I was diagnosed stage IV, with Mel in my lungs, and probably all over. A Boston doctor recommended a trial at MGH sponsored by GSK. I am now undead at 67. Yesterday I bought 7 horny Billie goats to breed our nannies. I am living a normal life.

                                                              If the Boston doctor has a name like Lawrence or Flaherty, I would do what they said, no matter what anybody else had to say. I am not NED but I am very happy to be a substantial responder, coming up on completing 23 months on BRAF/MEL inhibitors. FIGHT THE BEAST and whatever weapons you chose, embrace them and don’t second guess yourself.

                                                          Viewing 17 reply threads
                                                          • You must be logged in to reply to this topic.
                                                          About the MRF Patient Forum

                                                          The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                                          The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.