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.

Mucosal with body and brain METs: Combo or only a PD1 inhibitor?

Forums Mucosal Melanoma Community Mucosal with body and brain METs: Combo or only a PD1 inhibitor?

  • Post
    JohnA
    Participant

      My wife (diagnosed anal mucosal melanoma november 2014, WLE, local radiation, adjuvant chemo cisplatin +Temodar), just newly diagnosed with Mets in lungs, liver,  rib and brain (3 small lesions). C-Kit+ BRAF-

      We've consulted with two oncologists now and both have recommended the ipi-nivo combo.

      A few questions, if some of you could chime in it would be very helpful:

      1) does brain involvement change response rate for these immunotherapy drugs?

      2) we are very concerned about side effects, chemo and radiation left her with colitis, which has just recently cleared up. This is also a major side efect in the combo as we understand it, with some people even having a spontaneously ruptured colon.

      –does it make sense to consider pembro or nivo alone before the combo, to reduce the likelihood of side effects?

      –or is this too potentially dangerous, so we must go at it with everything available (the combo) and risk the side effects?

      Our oncologist says they are unpredictable so it seems hard to go with the 'wait and see what side effects occur' plan.

      3) she may have the option of particpating in a trial in which she is assigned to the group which has the combo treatment being recommended anyway.  Any reasons NOT to do this?

      Thanks so much for your help everyone.

    Viewing 17 reply threads
    • Replies
        Andrew1725
        Participant

          Others here are more knowledgeable, but I have a few thoughts reading this:

          1) Wondering if gamma knife or some similar form of radiation is being discussed for the brain mets. If not maybe it should be, and I believe Nivo and radiation have shown positive synergistic effects with melanoma brain mets.

          2) Re: Nivo vs. Nivo/Ipi combo, it sounds like you have the right questions in my mind. The fact your wife had colitis with the chemo treatment may demonstrate a predisposition towards colitis, at which point it raises doubts about her ability to make it through combo treatment without colitis as a side effect. I don't know enough about the science to know whether the colitis she experienced before would necessarily reappear with the combo treatment, but it seems logical.

          Combo is the best that's out there for metastatic melanoma according to the currently available data. But it may not be SO MUCH better than Nivo as a single agent to justify the risk of increased side effects profile, including colitis, which we know your wife has already had. On the other hand, if they tell you that they can start with combo, and can easily transition to Nivo as a single agent at the first signs of inflammation in the GI tract or bowel, then that may be a plan. I don't know how feasible that is and others may know more.

          I think with mets in multiple locations it is probably best to take the most aggressive approach possible.

          3) I don't know how the primary being mucosal changes the equation here, if at all, and maybe others can comment.

          Best of luck with whatever you choose.

          Andrew1725
          Participant

            Others here are more knowledgeable, but I have a few thoughts reading this:

            1) Wondering if gamma knife or some similar form of radiation is being discussed for the brain mets. If not maybe it should be, and I believe Nivo and radiation have shown positive synergistic effects with melanoma brain mets.

            2) Re: Nivo vs. Nivo/Ipi combo, it sounds like you have the right questions in my mind. The fact your wife had colitis with the chemo treatment may demonstrate a predisposition towards colitis, at which point it raises doubts about her ability to make it through combo treatment without colitis as a side effect. I don't know enough about the science to know whether the colitis she experienced before would necessarily reappear with the combo treatment, but it seems logical.

            Combo is the best that's out there for metastatic melanoma according to the currently available data. But it may not be SO MUCH better than Nivo as a single agent to justify the risk of increased side effects profile, including colitis, which we know your wife has already had. On the other hand, if they tell you that they can start with combo, and can easily transition to Nivo as a single agent at the first signs of inflammation in the GI tract or bowel, then that may be a plan. I don't know how feasible that is and others may know more.

            I think with mets in multiple locations it is probably best to take the most aggressive approach possible.

            3) I don't know how the primary being mucosal changes the equation here, if at all, and maybe others can comment.

            Best of luck with whatever you choose.

            Andrew1725
            Participant

              Others here are more knowledgeable, but I have a few thoughts reading this:

              1) Wondering if gamma knife or some similar form of radiation is being discussed for the brain mets. If not maybe it should be, and I believe Nivo and radiation have shown positive synergistic effects with melanoma brain mets.

              2) Re: Nivo vs. Nivo/Ipi combo, it sounds like you have the right questions in my mind. The fact your wife had colitis with the chemo treatment may demonstrate a predisposition towards colitis, at which point it raises doubts about her ability to make it through combo treatment without colitis as a side effect. I don't know enough about the science to know whether the colitis she experienced before would necessarily reappear with the combo treatment, but it seems logical.

              Combo is the best that's out there for metastatic melanoma according to the currently available data. But it may not be SO MUCH better than Nivo as a single agent to justify the risk of increased side effects profile, including colitis, which we know your wife has already had. On the other hand, if they tell you that they can start with combo, and can easily transition to Nivo as a single agent at the first signs of inflammation in the GI tract or bowel, then that may be a plan. I don't know how feasible that is and others may know more.

              I think with mets in multiple locations it is probably best to take the most aggressive approach possible.

              3) I don't know how the primary being mucosal changes the equation here, if at all, and maybe others can comment.

              Best of luck with whatever you choose.

              ed williams
              Participant

                Hi John, if you had brain mets 2 years ago you could not get into a trial to get access to Pd-1 drugs. Things have changed a lot in a short period of time. I had 3 small ones brain mets and had cyberknife treatment at the Ottawa general hospital 2.5 years ago. I was lucky and the treatment was successfull. As far as having stats of the effectiveness of Pd-1 drugs on the brain you might be able to find some phase-1 data but that would probably be it. Trials have just very recently opened up for brain mets and Melanoma, I know that Dr. Omid Hamid talked about trials at The Angeles Clinic on one of his Oncologist videos last year. Very shortly at ASCO they will present more data about the checkmate 67 trial of ipi and Nivo together or as monotherapies, the overall survival data from phase 1 and 2 trials of the combination are pretty amazing!!! As long as you have an experienced team that know what to look for in regards to side effects the Immunotherapy combination seems to be the best option for many. Best wishes!!! Ed

                ed williams
                Participant

                  Hi John, if you had brain mets 2 years ago you could not get into a trial to get access to Pd-1 drugs. Things have changed a lot in a short period of time. I had 3 small ones brain mets and had cyberknife treatment at the Ottawa general hospital 2.5 years ago. I was lucky and the treatment was successfull. As far as having stats of the effectiveness of Pd-1 drugs on the brain you might be able to find some phase-1 data but that would probably be it. Trials have just very recently opened up for brain mets and Melanoma, I know that Dr. Omid Hamid talked about trials at The Angeles Clinic on one of his Oncologist videos last year. Very shortly at ASCO they will present more data about the checkmate 67 trial of ipi and Nivo together or as monotherapies, the overall survival data from phase 1 and 2 trials of the combination are pretty amazing!!! As long as you have an experienced team that know what to look for in regards to side effects the Immunotherapy combination seems to be the best option for many. Best wishes!!! Ed

                  ed williams
                  Participant

                    Hi John, if you had brain mets 2 years ago you could not get into a trial to get access to Pd-1 drugs. Things have changed a lot in a short period of time. I had 3 small ones brain mets and had cyberknife treatment at the Ottawa general hospital 2.5 years ago. I was lucky and the treatment was successfull. As far as having stats of the effectiveness of Pd-1 drugs on the brain you might be able to find some phase-1 data but that would probably be it. Trials have just very recently opened up for brain mets and Melanoma, I know that Dr. Omid Hamid talked about trials at The Angeles Clinic on one of his Oncologist videos last year. Very shortly at ASCO they will present more data about the checkmate 67 trial of ipi and Nivo together or as monotherapies, the overall survival data from phase 1 and 2 trials of the combination are pretty amazing!!! As long as you have an experienced team that know what to look for in regards to side effects the Immunotherapy combination seems to be the best option for many. Best wishes!!! Ed

                    Mat
                    Participant

                      Good responses.  The key point is to get the brain mets treated with gamma knife irrespective of the treatment you choose.

                      Mat
                      Participant

                        Good responses.  The key point is to get the brain mets treated with gamma knife irrespective of the treatment you choose.

                        Mat
                        Participant

                          Good responses.  The key point is to get the brain mets treated with gamma knife irrespective of the treatment you choose.

                          JohnA
                          Participant

                            Thanks for the very thoughtful and generous responses everyone.

                            We discussed gamma knife briefly with our oncologist but he thought they might be too small.  I know next to nothing about cyber/gamma knife therapy so don't know if this is a concern or not.

                            Related question – it's probably a completely subjective question, but are there oncologists who are know for being particularly good at managing combo/single agent immunotherapy side-effects?

                            JohnA
                            Participant

                              Thanks for the very thoughtful and generous responses everyone.

                              We discussed gamma knife briefly with our oncologist but he thought they might be too small.  I know next to nothing about cyber/gamma knife therapy so don't know if this is a concern or not.

                              Related question – it's probably a completely subjective question, but are there oncologists who are know for being particularly good at managing combo/single agent immunotherapy side-effects?

                                Mat
                                Participant

                                  John, very important to make sure that you're with a top melanoma specialist (with a great staff).  If you let us know your location, I'm sure that you'll get good suggestions.

                                  Mat
                                  Participant

                                    John, very important to make sure that you're with a top melanoma specialist (with a great staff).  If you let us know your location, I'm sure that you'll get good suggestions.

                                    JohnA
                                    Participant

                                      Thanks. We're in Michigan – we've been going to University of Michigan (Chris Lao) and Cleveland Clinic (Marc Ernstoff, who has just relocated to Buffalo).

                                      University of Michigan was part of the open access trial for ipi plus nivo, so Dr. Lao has treated many people with the combo.

                                      If there are others are are top notch, we want to hear about them.

                                      We have pans to talk to a doc on Dr. Hodi's team at Dana Farber, and also Paul Chapman at Sloan Kettering – where Jedd Wolchok is.

                                      We've spoken with Dr. Block to look into integrative therapy, but he's only had a handful of patients on the combo drug, so we're concerned he's not got enough experience with it.

                                      It is probably best to find a place nearer to home to have the treatment done though, especially if she will do the combo, yeah?

                                       

                                      JohnA
                                      Participant

                                        Thanks. We're in Michigan – we've been going to University of Michigan (Chris Lao) and Cleveland Clinic (Marc Ernstoff, who has just relocated to Buffalo).

                                        University of Michigan was part of the open access trial for ipi plus nivo, so Dr. Lao has treated many people with the combo.

                                        If there are others are are top notch, we want to hear about them.

                                        We have pans to talk to a doc on Dr. Hodi's team at Dana Farber, and also Paul Chapman at Sloan Kettering – where Jedd Wolchok is.

                                        We've spoken with Dr. Block to look into integrative therapy, but he's only had a handful of patients on the combo drug, so we're concerned he's not got enough experience with it.

                                        It is probably best to find a place nearer to home to have the treatment done though, especially if she will do the combo, yeah?

                                         

                                        Bubbles
                                        Participant

                                          Near is good for obvious reasons….but having the best melanoma specialist (and you named some good ones!) and the trial/treatment that serves you best is even more so. I traveled to Tampa from TN for my 2 1/2 year trial (as well as these past several years in follow-up)…not fun…but it is amazing what you can accomplish when you decide to. If you end up considering services that are some distance from you, be sure to ask about where to seek care in an emergency and if it would be possible to have some things (like scans and labs) done locally and cd's and results faxed or fed ex'd to the supervising team. Sometimes that is allowed…sometimes not….and may be important to you when making your final decision. Wishing you both my best. C

                                          Bubbles
                                          Participant

                                            Near is good for obvious reasons….but having the best melanoma specialist (and you named some good ones!) and the trial/treatment that serves you best is even more so. I traveled to Tampa from TN for my 2 1/2 year trial (as well as these past several years in follow-up)…not fun…but it is amazing what you can accomplish when you decide to. If you end up considering services that are some distance from you, be sure to ask about where to seek care in an emergency and if it would be possible to have some things (like scans and labs) done locally and cd's and results faxed or fed ex'd to the supervising team. Sometimes that is allowed…sometimes not….and may be important to you when making your final decision. Wishing you both my best. C

                                            JohnA
                                            Participant

                                              Thanks, great tips!

                                              JohnA
                                              Participant

                                                Thanks, great tips!

                                                JohnA
                                                Participant

                                                  Thanks, great tips!

                                                  Bubbles
                                                  Participant

                                                    Near is good for obvious reasons….but having the best melanoma specialist (and you named some good ones!) and the trial/treatment that serves you best is even more so. I traveled to Tampa from TN for my 2 1/2 year trial (as well as these past several years in follow-up)…not fun…but it is amazing what you can accomplish when you decide to. If you end up considering services that are some distance from you, be sure to ask about where to seek care in an emergency and if it would be possible to have some things (like scans and labs) done locally and cd's and results faxed or fed ex'd to the supervising team. Sometimes that is allowed…sometimes not….and may be important to you when making your final decision. Wishing you both my best. C

                                                    JohnA
                                                    Participant

                                                      Thanks. We're in Michigan – we've been going to University of Michigan (Chris Lao) and Cleveland Clinic (Marc Ernstoff, who has just relocated to Buffalo).

                                                      University of Michigan was part of the open access trial for ipi plus nivo, so Dr. Lao has treated many people with the combo.

                                                      If there are others are are top notch, we want to hear about them.

                                                      We have pans to talk to a doc on Dr. Hodi's team at Dana Farber, and also Paul Chapman at Sloan Kettering – where Jedd Wolchok is.

                                                      We've spoken with Dr. Block to look into integrative therapy, but he's only had a handful of patients on the combo drug, so we're concerned he's not got enough experience with it.

                                                      It is probably best to find a place nearer to home to have the treatment done though, especially if she will do the combo, yeah?

                                                       

                                                      Mat
                                                      Participant

                                                        John, very important to make sure that you're with a top melanoma specialist (with a great staff).  If you let us know your location, I'm sure that you'll get good suggestions.

                                                        ed williams
                                                        Participant

                                                          Hi John, I was thinking about the Oncologist answer to you and your wife about brain mets being to small to treat. I must say that small is better when it comes to treating melanoma and the brain. My three brain mets were 3mm, 4mm and 4.5mm and cyberknife fixed them up after just one 50min session. I have a couple of videos for you to take a look at if you want, I am sorry that I don't have the links, just an explaination of where to find them. Every time I try and use a link it never works. So here we go, first if you go to youtube and type in (Immuno-oncology,Immune therapy, Pd-1 Melanoma- Omid Hamid MD ) you will come to a video from 2015 from the Angeles clinic ( http://www.theangelesclinic.org) . If you go to the 30 min point in the video you will find Dr. Omid Hamid talking about clinical trials for brain mets. The video featuring Dr.Hamid on youtube is actually called " The road to personalized therapy and the era of Immuno- oncology" The rest of the video is pretty informative as well. Second video is called " Radiosurgery for Brain Metastases" again on youtube and the presenter is Dr. Eric L. Chang, this video talks about side effects of whole brain vs Radiosurgery. It is pretty technical. Third video is from UCLA MD chat webinars, Title is " Cancer treatment for Brain metastasis." again you will find it on Youtube and the Dr.s name is Isaac Yang MD Neurosurgeon. It is super good at explaining what stereotactic radiosurgery is. Again wishing you and your wife the best!!!! Ed

                                                          ed williams
                                                          Participant

                                                            Hi John, I was thinking about the Oncologist answer to you and your wife about brain mets being to small to treat. I must say that small is better when it comes to treating melanoma and the brain. My three brain mets were 3mm, 4mm and 4.5mm and cyberknife fixed them up after just one 50min session. I have a couple of videos for you to take a look at if you want, I am sorry that I don't have the links, just an explaination of where to find them. Every time I try and use a link it never works. So here we go, first if you go to youtube and type in (Immuno-oncology,Immune therapy, Pd-1 Melanoma- Omid Hamid MD ) you will come to a video from 2015 from the Angeles clinic ( http://www.theangelesclinic.org) . If you go to the 30 min point in the video you will find Dr. Omid Hamid talking about clinical trials for brain mets. The video featuring Dr.Hamid on youtube is actually called " The road to personalized therapy and the era of Immuno- oncology" The rest of the video is pretty informative as well. Second video is called " Radiosurgery for Brain Metastases" again on youtube and the presenter is Dr. Eric L. Chang, this video talks about side effects of whole brain vs Radiosurgery. It is pretty technical. Third video is from UCLA MD chat webinars, Title is " Cancer treatment for Brain metastasis." again you will find it on Youtube and the Dr.s name is Isaac Yang MD Neurosurgeon. It is super good at explaining what stereotactic radiosurgery is. Again wishing you and your wife the best!!!! Ed

                                                            ed williams
                                                            Participant

                                                              Hi John, I was thinking about the Oncologist answer to you and your wife about brain mets being to small to treat. I must say that small is better when it comes to treating melanoma and the brain. My three brain mets were 3mm, 4mm and 4.5mm and cyberknife fixed them up after just one 50min session. I have a couple of videos for you to take a look at if you want, I am sorry that I don't have the links, just an explaination of where to find them. Every time I try and use a link it never works. So here we go, first if you go to youtube and type in (Immuno-oncology,Immune therapy, Pd-1 Melanoma- Omid Hamid MD ) you will come to a video from 2015 from the Angeles clinic ( http://www.theangelesclinic.org) . If you go to the 30 min point in the video you will find Dr. Omid Hamid talking about clinical trials for brain mets. The video featuring Dr.Hamid on youtube is actually called " The road to personalized therapy and the era of Immuno- oncology" The rest of the video is pretty informative as well. Second video is called " Radiosurgery for Brain Metastases" again on youtube and the presenter is Dr. Eric L. Chang, this video talks about side effects of whole brain vs Radiosurgery. It is pretty technical. Third video is from UCLA MD chat webinars, Title is " Cancer treatment for Brain metastasis." again you will find it on Youtube and the Dr.s name is Isaac Yang MD Neurosurgeon. It is super good at explaining what stereotactic radiosurgery is. Again wishing you and your wife the best!!!! Ed

                                                            JohnA
                                                            Participant

                                                              Thanks for the very thoughtful and generous responses everyone.

                                                              We discussed gamma knife briefly with our oncologist but he thought they might be too small.  I know next to nothing about cyber/gamma knife therapy so don't know if this is a concern or not.

                                                              Related question – it's probably a completely subjective question, but are there oncologists who are know for being particularly good at managing combo/single agent immunotherapy side-effects?

                                                              Bubbles
                                                              Participant

                                                                Hi John,

                                                                All the advice you have been given is on point.  Yes, the ipi/nivo combo has a potential for greater side effects than nivo alone…but a better response rate.  You could always drop the ipi part (as it is often more of the culprit) should side effects develop. And even folks who have taken one immunotherapy with bad side effects can at times go on to take a different on with no real trouble.  Such side effects are hard to predict. 

                                                                Basically, if brain mets can be seen on a scan…they are big enough to be treated radiologically.  There are a few caveats and some equipment is more able than others…but still…  And yes we have certainly learned that radiation and immunotherapy offer synergistic benefits.  I just put this post up earlier this week and it might interest you:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/04/nivo-opdivo-with-radiation-better-for.html

                                                                We also know that BRAFi (though I realize that your wife is BRAF negative) and immmunotherapy work in the brain:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/04/yes-virginia-both-immunotherapy-and.html

                                                                There is more info on all of these points on my blog if you are interested…and tons more smart peeps on this forum if you have more questions.  I wish you and your wife my best.  Celeste

                                                                Bubbles
                                                                Participant

                                                                  Hi John,

                                                                  All the advice you have been given is on point.  Yes, the ipi/nivo combo has a potential for greater side effects than nivo alone…but a better response rate.  You could always drop the ipi part (as it is often more of the culprit) should side effects develop. And even folks who have taken one immunotherapy with bad side effects can at times go on to take a different on with no real trouble.  Such side effects are hard to predict. 

                                                                  Basically, if brain mets can be seen on a scan…they are big enough to be treated radiologically.  There are a few caveats and some equipment is more able than others…but still…  And yes we have certainly learned that radiation and immunotherapy offer synergistic benefits.  I just put this post up earlier this week and it might interest you:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/04/nivo-opdivo-with-radiation-better-for.html

                                                                  We also know that BRAFi (though I realize that your wife is BRAF negative) and immmunotherapy work in the brain:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/04/yes-virginia-both-immunotherapy-and.html

                                                                  There is more info on all of these points on my blog if you are interested…and tons more smart peeps on this forum if you have more questions.  I wish you and your wife my best.  Celeste

                                                                  Bubbles
                                                                  Participant

                                                                    Hi John,

                                                                    All the advice you have been given is on point.  Yes, the ipi/nivo combo has a potential for greater side effects than nivo alone…but a better response rate.  You could always drop the ipi part (as it is often more of the culprit) should side effects develop. And even folks who have taken one immunotherapy with bad side effects can at times go on to take a different on with no real trouble.  Such side effects are hard to predict. 

                                                                    Basically, if brain mets can be seen on a scan…they are big enough to be treated radiologically.  There are a few caveats and some equipment is more able than others…but still…  And yes we have certainly learned that radiation and immunotherapy offer synergistic benefits.  I just put this post up earlier this week and it might interest you:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/04/nivo-opdivo-with-radiation-better-for.html

                                                                    We also know that BRAFi (though I realize that your wife is BRAF negative) and immmunotherapy work in the brain:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/04/yes-virginia-both-immunotherapy-and.html

                                                                    There is more info on all of these points on my blog if you are interested…and tons more smart peeps on this forum if you have more questions.  I wish you and your wife my best.  Celeste

                                                                    JohnA
                                                                    Participant

                                                                      You guys are amazing. Thanks so much for your help and support. Amazing we can do this with people we've never met in person.

                                                                      JohnA
                                                                      Participant

                                                                        You guys are amazing. Thanks so much for your help and support. Amazing we can do this with people we've never met in person.

                                                                        JohnA
                                                                        Participant

                                                                          You guys are amazing. Thanks so much for your help and support. Amazing we can do this with people we've never met in person.

                                                                      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.

                                                                      Popular Topics