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Mucosal Melanoma and Yurvoy?

Forums Mucosal Melanoma Community Mucosal Melanoma and Yurvoy?

  • Post
    Lori Ann
    Participant

      I was diagnosed in December, 2014 with mucosal melanoma of the nasal cavity.  I had it surgically removed and did 6 weeks of radiation therapy.  In April, 2016, there was another tumor at the back of my nose.  Again, I had it surgically removed.  My oncologist gave me information on immunotherapy called Yurvoy.  Has anyone done this for nasal mucosal melanoma and how did it go?  I don't know whether radiation is an option and am meeting with my radiologist next week.  My oncologist didn't push for the immunotherapy.  I felt like he had to offer me something so that was it. 

    Viewing 17 reply threads
    • Replies
        barb3246
        Participant

          Hi – Could you tell me how you were diagnosed with the original lesion in your nose?  What did it look like?

          barb3246
          Participant

            Hi – Could you tell me how you were diagnosed with the original lesion in your nose?  What did it look like?

              Lori Ann
              Participant

                I was having trouble breathing.  It felt like something was blocking my nostril.  I went to an ENT and she saw a polyp and said that it was routine to remove it.  So I had it removed and tested.  I never really saw anything because it was kind of high up in my nose.  What I did see just looked like sort of like flesh.  The second one was in the back of my nose.  I saw it through a camera that my doctor uses and it just looked like a fleshy bump.  Good luck and feel free to contact me again!

                Lori Ann
                Participant

                  I was having trouble breathing.  It felt like something was blocking my nostril.  I went to an ENT and she saw a polyp and said that it was routine to remove it.  So I had it removed and tested.  I never really saw anything because it was kind of high up in my nose.  What I did see just looked like sort of like flesh.  The second one was in the back of my nose.  I saw it through a camera that my doctor uses and it just looked like a fleshy bump.  Good luck and feel free to contact me again!

                  Lori Ann
                  Participant

                    I was having trouble breathing.  It felt like something was blocking my nostril.  I went to an ENT and she saw a polyp and said that it was routine to remove it.  So I had it removed and tested.  I never really saw anything because it was kind of high up in my nose.  What I did see just looked like sort of like flesh.  The second one was in the back of my nose.  I saw it through a camera that my doctor uses and it just looked like a fleshy bump.  Good luck and feel free to contact me again!

                    Lori Ann
                    Participant

                      I'm sorry but I forgot to mention that I also had some bleeding from my nose.  It was just a trickle now again, like a runny nose.  But one night I got a pretty serious nose bleed.  That was my wake-up call.

                      Lori Ann
                      Participant

                        I'm sorry but I forgot to mention that I also had some bleeding from my nose.  It was just a trickle now again, like a runny nose.  But one night I got a pretty serious nose bleed.  That was my wake-up call.

                        Lori Ann
                        Participant

                          I'm sorry but I forgot to mention that I also had some bleeding from my nose.  It was just a trickle now again, like a runny nose.  But one night I got a pretty serious nose bleed.  That was my wake-up call.

                        barb3246
                        Participant

                          Hi – Could you tell me how you were diagnosed with the original lesion in your nose?  What did it look like?

                          mary1233
                          Participant

                            Hello Lori Ann – Please obtain a second opinion. Yervoy has not been shown to be very effective on mucosal melanoma but it is not the only immunotherapy option out there. A clinical trial might also be a way for you to get an effective treatment – again, you could find out from a second opinion. I am sure that your oncologist is a wonderful doctor, but you need a specialist who is current.

                            Best wishes.

                            Mary

                              Lori Ann
                              Participant

                                I go to Rush University in Chicago and both my ENT and oncologist have (and are) treating several MM patients.  Do you feel their recommendation isn't current?  They just called this morning and again recommended Yurvoy.  They didnt' recommend radiation as I had it last year and this tumor is at the very back of my nose…much closer to my brain, etc. 

                                Lori Ann
                                Participant

                                  I go to Rush University in Chicago and both my ENT and oncologist have (and are) treating several MM patients.  Do you feel their recommendation isn't current?  They just called this morning and again recommended Yurvoy.  They didnt' recommend radiation as I had it last year and this tumor is at the very back of my nose…much closer to my brain, etc. 

                                  Lori Ann
                                  Participant

                                    I go to Rush University in Chicago and both my ENT and oncologist have (and are) treating several MM patients.  Do you feel their recommendation isn't current?  They just called this morning and again recommended Yurvoy.  They didnt' recommend radiation as I had it last year and this tumor is at the very back of my nose…much closer to my brain, etc. 

                                    Lori Ann
                                    Participant

                                      Hi Mary.  Thank you for your input!  My doctor has said it's not as effective as it is on skin cancer.  Since MM is so rare, there is no data on it.  Both the onclogist and ENT think I need to do something "system-wide" and this is what they're suggesting.

                                      I was wondering how you came to this conclusion?  if it's from personal experience or are you in the medical field or do you research alot?  As you might know, this is such a difficult decision and I appreciate all the input. 

                                      mary1233
                                      Participant

                                        Hello Lori Ann

                                        When I was going through my treatment in 2013 my oncologist suggested yervoy as a potential option if it looked like the chemo was not working. One week later, this same oncologist was quoted as saying that yervoy was shown to have a 6.7% efficacy rate on mucosal melanoma. In my mathmatical mind, that told me that there was a 93.3% chance of it not working – very close to a snowball's chance in hell. Obviously, I have not gotten over this.

                                         

                                        Since then the anti PD-1 immunotherapies have been FDA approved and the combination of Yervoy and the anti-PD-1 drugs are showing very encouraging results. Ask you doctor, and then get a second opinion and ask again.

                                        You should not take medical advice from me. But as a mucosal melanoma patient I would want to know that every option was considered and I would want to know why the option being suggested to me was the best option for me.

                                        Your doctor is right about there being no data on mucosal melanoma. The disease is rare but you are unique. You deserve the very best treatment for you. Don't stop being your best advocate.

                                        All the best.

                                        Mary

                                         

                                        mary1233
                                        Participant

                                          Hello Lori Ann

                                          When I was going through my treatment in 2013 my oncologist suggested yervoy as a potential option if it looked like the chemo was not working. One week later, this same oncologist was quoted as saying that yervoy was shown to have a 6.7% efficacy rate on mucosal melanoma. In my mathmatical mind, that told me that there was a 93.3% chance of it not working – very close to a snowball's chance in hell. Obviously, I have not gotten over this.

                                           

                                          Since then the anti PD-1 immunotherapies have been FDA approved and the combination of Yervoy and the anti-PD-1 drugs are showing very encouraging results. Ask you doctor, and then get a second opinion and ask again.

                                          You should not take medical advice from me. But as a mucosal melanoma patient I would want to know that every option was considered and I would want to know why the option being suggested to me was the best option for me.

                                          Your doctor is right about there being no data on mucosal melanoma. The disease is rare but you are unique. You deserve the very best treatment for you. Don't stop being your best advocate.

                                          All the best.

                                          Mary

                                           

                                          mary1233
                                          Participant

                                            Hello Lori Ann

                                            When I was going through my treatment in 2013 my oncologist suggested yervoy as a potential option if it looked like the chemo was not working. One week later, this same oncologist was quoted as saying that yervoy was shown to have a 6.7% efficacy rate on mucosal melanoma. In my mathmatical mind, that told me that there was a 93.3% chance of it not working – very close to a snowball's chance in hell. Obviously, I have not gotten over this.

                                             

                                            Since then the anti PD-1 immunotherapies have been FDA approved and the combination of Yervoy and the anti-PD-1 drugs are showing very encouraging results. Ask you doctor, and then get a second opinion and ask again.

                                            You should not take medical advice from me. But as a mucosal melanoma patient I would want to know that every option was considered and I would want to know why the option being suggested to me was the best option for me.

                                            Your doctor is right about there being no data on mucosal melanoma. The disease is rare but you are unique. You deserve the very best treatment for you. Don't stop being your best advocate.

                                            All the best.

                                            Mary

                                             

                                            Lori Ann
                                            Participant

                                              Hi Mary!  My doctor gave me similar numbers.  He said that in cutaneous melanoma it reduced the recurrence rate by 12% but with MM he couldn't say whether it'd be the same, more or less.  Those aren't very good numbers considering right now they surgically removed it all so I'm cancer free.  He offered this to me last year when I was first diagnosed but there was even less information then.

                                              I'm more inclined to do something but there aren't many options.  I have been searching but am not coming up with anything.

                                              Thank you and all the best to you too!

                                              LORI

                                              Lori Ann
                                              Participant

                                                Hi Mary!  My doctor gave me similar numbers.  He said that in cutaneous melanoma it reduced the recurrence rate by 12% but with MM he couldn't say whether it'd be the same, more or less.  Those aren't very good numbers considering right now they surgically removed it all so I'm cancer free.  He offered this to me last year when I was first diagnosed but there was even less information then.

                                                I'm more inclined to do something but there aren't many options.  I have been searching but am not coming up with anything.

                                                Thank you and all the best to you too!

                                                LORI

                                                Lori Ann
                                                Participant

                                                  Hi Mary!  My doctor gave me similar numbers.  He said that in cutaneous melanoma it reduced the recurrence rate by 12% but with MM he couldn't say whether it'd be the same, more or less.  Those aren't very good numbers considering right now they surgically removed it all so I'm cancer free.  He offered this to me last year when I was first diagnosed but there was even less information then.

                                                  I'm more inclined to do something but there aren't many options.  I have been searching but am not coming up with anything.

                                                  Thank you and all the best to you too!

                                                  LORI

                                                  Bubbles
                                                  Participant

                                                    Lori,

                                                    I posted this for you the other day.  It is straight out of ASCO this year and specifically addresses mucosal melanoma, specifically the response rate to anti-PD1:   http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-anti-pd1-for-acral-and.html

                                                    celeste

                                                    Bubbles
                                                    Participant

                                                      Lori,

                                                      I posted this for you the other day.  It is straight out of ASCO this year and specifically addresses mucosal melanoma, specifically the response rate to anti-PD1:   http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-anti-pd1-for-acral-and.html

                                                      celeste

                                                      Bubbles
                                                      Participant

                                                        Lori,

                                                        I posted this for you the other day.  It is straight out of ASCO this year and specifically addresses mucosal melanoma, specifically the response rate to anti-PD1:   http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-anti-pd1-for-acral-and.html

                                                        celeste

                                                        CHD
                                                        Participant

                                                          Celeste, just wanted to thank you for posting this.  It is not my thread but I always appreciate the up-to-date research you post.

                                                          Lori Ann, I do not know much about this, having mucosal melanoma that has not spread to lymph nodes (stage 1), but  what Celeste and Mary post about Yervoy I wish I had known in time to encourage a friend with stage 3 mucosal melanoma who was started on Yervoy to pursue a different initial systemic treatment.  I am far from any sort of expert in this area, but for what it's worth based on research and personal testimony, I personally, if in this position with mucosal melanoma, would push for something other than Yervoy alone. 

                                                          Best wishes to you!

                                                          CHD
                                                          Participant

                                                            Celeste, just wanted to thank you for posting this.  It is not my thread but I always appreciate the up-to-date research you post.

                                                            Lori Ann, I do not know much about this, having mucosal melanoma that has not spread to lymph nodes (stage 1), but  what Celeste and Mary post about Yervoy I wish I had known in time to encourage a friend with stage 3 mucosal melanoma who was started on Yervoy to pursue a different initial systemic treatment.  I am far from any sort of expert in this area, but for what it's worth based on research and personal testimony, I personally, if in this position with mucosal melanoma, would push for something other than Yervoy alone. 

                                                            Best wishes to you!

                                                            CHD
                                                            Participant

                                                              Celeste, just wanted to thank you for posting this.  It is not my thread but I always appreciate the up-to-date research you post.

                                                              Lori Ann, I do not know much about this, having mucosal melanoma that has not spread to lymph nodes (stage 1), but  what Celeste and Mary post about Yervoy I wish I had known in time to encourage a friend with stage 3 mucosal melanoma who was started on Yervoy to pursue a different initial systemic treatment.  I am far from any sort of expert in this area, but for what it's worth based on research and personal testimony, I personally, if in this position with mucosal melanoma, would push for something other than Yervoy alone. 

                                                              Best wishes to you!

                                                              Lori Ann
                                                              Participant

                                                                Thanks CHD.  I have asked my doctor what other immunotherapies are available and am waiting for a response.  Are you saying Yervoy along with something is a better option or no Yervoy at all?  Sorry.  Does your opinion change if this is adjuvant treatment?  Thanks for your input.

                                                                Lori Ann
                                                                Participant

                                                                  Thanks CHD.  I have asked my doctor what other immunotherapies are available and am waiting for a response.  Are you saying Yervoy along with something is a better option or no Yervoy at all?  Sorry.  Does your opinion change if this is adjuvant treatment?  Thanks for your input.

                                                                  Lori Ann
                                                                  Participant

                                                                    Thanks CHD.  I have asked my doctor what other immunotherapies are available and am waiting for a response.  Are you saying Yervoy along with something is a better option or no Yervoy at all?  Sorry.  Does your opinion change if this is adjuvant treatment?  Thanks for your input.

                                                                    Lori Ann
                                                                    Participant

                                                                      Thank you Celeste!  I did see it and read the link a couple of days ago.  I have asked my doctor several more questions! 

                                                                      Lori Ann
                                                                      Participant

                                                                        Thank you Celeste!  I did see it and read the link a couple of days ago.  I have asked my doctor several more questions! 

                                                                        Lori Ann
                                                                        Participant

                                                                          Thank you Celeste!  I did see it and read the link a couple of days ago.  I have asked my doctor several more questions! 

                                                                          Lori Ann
                                                                          Participant

                                                                            Hi Mary.  Thank you for your input!  My doctor has said it's not as effective as it is on skin cancer.  Since MM is so rare, there is no data on it.  Both the onclogist and ENT think I need to do something "system-wide" and this is what they're suggesting.

                                                                            I was wondering how you came to this conclusion?  if it's from personal experience or are you in the medical field or do you research alot?  As you might know, this is such a difficult decision and I appreciate all the input. 

                                                                            Lori Ann
                                                                            Participant

                                                                              Hi Mary.  Thank you for your input!  My doctor has said it's not as effective as it is on skin cancer.  Since MM is so rare, there is no data on it.  Both the onclogist and ENT think I need to do something "system-wide" and this is what they're suggesting.

                                                                              I was wondering how you came to this conclusion?  if it's from personal experience or are you in the medical field or do you research alot?  As you might know, this is such a difficult decision and I appreciate all the input. 

                                                                            mary1233
                                                                            Participant

                                                                              Hello Lori Ann – Please obtain a second opinion. Yervoy has not been shown to be very effective on mucosal melanoma but it is not the only immunotherapy option out there. A clinical trial might also be a way for you to get an effective treatment – again, you could find out from a second opinion. I am sure that your oncologist is a wonderful doctor, but you need a specialist who is current.

                                                                              Best wishes.

                                                                              Mary

                                                                              mary1233
                                                                              Participant

                                                                                Hello Lori Ann – Please obtain a second opinion. Yervoy has not been shown to be very effective on mucosal melanoma but it is not the only immunotherapy option out there. A clinical trial might also be a way for you to get an effective treatment – again, you could find out from a second opinion. I am sure that your oncologist is a wonderful doctor, but you need a specialist who is current.

                                                                                Best wishes.

                                                                                Mary

                                                                                ed williams
                                                                                Participant

                                                                                  Hi Lori Ann, I have a couple of links for you that might help you prepare for your next visit with your Oncologist and radiologist. The videos are from top Melanoma Oncologist and they explain most of the current treatment options.  https://www.youtube.com/watch?v=Qd9fCi001n0     The first video talks about Ipi (yervoy) at the 14min mark and the Dr. is Jason Luke. The second video features Dr. Michael :Postow from Memorial Sloan Kettering in New York, if you go to the 24min mark he starts talking about Immunotherapy treatments Yervoy and Pd-1 drugs like Nivo or Pembro.  https://www.youtube.com/watch?v=eofW8d4J6sI . Mucosal melanoma are challenging and I am sure others on the forum with specific Mucosal Melanoma experiences will give you more specific advice. Best Wishes!!!! Ed

                                                                                    Lori Ann
                                                                                    Participant

                                                                                      Thank you!!!  I go to Rush University in Chicago and my onc. is in contact with Dr. Luke.  Last year Dr. Luke was starting a clinical trial that, unfortunately, I couldn't participate in.

                                                                                      Lori Ann
                                                                                      Participant

                                                                                        Thank you!!!  I go to Rush University in Chicago and my onc. is in contact with Dr. Luke.  Last year Dr. Luke was starting a clinical trial that, unfortunately, I couldn't participate in.

                                                                                        Lori Ann
                                                                                        Participant

                                                                                          Thank you!!!  I go to Rush University in Chicago and my onc. is in contact with Dr. Luke.  Last year Dr. Luke was starting a clinical trial that, unfortunately, I couldn't participate in.

                                                                                          Lori Ann
                                                                                          Participant

                                                                                            Thank you!

                                                                                            Lori Ann
                                                                                            Participant

                                                                                              Thank you!

                                                                                              Lori Ann
                                                                                              Participant

                                                                                                Thank you!

                                                                                              ed williams
                                                                                              Participant

                                                                                                Hi Lori Ann, I have a couple of links for you that might help you prepare for your next visit with your Oncologist and radiologist. The videos are from top Melanoma Oncologist and they explain most of the current treatment options.  https://www.youtube.com/watch?v=Qd9fCi001n0     The first video talks about Ipi (yervoy) at the 14min mark and the Dr. is Jason Luke. The second video features Dr. Michael :Postow from Memorial Sloan Kettering in New York, if you go to the 24min mark he starts talking about Immunotherapy treatments Yervoy and Pd-1 drugs like Nivo or Pembro.  https://www.youtube.com/watch?v=eofW8d4J6sI . Mucosal melanoma are challenging and I am sure others on the forum with specific Mucosal Melanoma experiences will give you more specific advice. Best Wishes!!!! Ed

                                                                                                ed williams
                                                                                                Participant

                                                                                                  Hi Lori Ann, I have a couple of links for you that might help you prepare for your next visit with your Oncologist and radiologist. The videos are from top Melanoma Oncologist and they explain most of the current treatment options.  https://www.youtube.com/watch?v=Qd9fCi001n0     The first video talks about Ipi (yervoy) at the 14min mark and the Dr. is Jason Luke. The second video features Dr. Michael :Postow from Memorial Sloan Kettering in New York, if you go to the 24min mark he starts talking about Immunotherapy treatments Yervoy and Pd-1 drugs like Nivo or Pembro.  https://www.youtube.com/watch?v=eofW8d4J6sI . Mucosal melanoma are challenging and I am sure others on the forum with specific Mucosal Melanoma experiences will give you more specific advice. Best Wishes!!!! Ed

                                                                                                  Bubbles
                                                                                                  Participant

                                                                                                    Hi Lori-Ann,

                                                                                                    So sorry for what you are dealing with! Mucosal melanoma is a tough thing to deal with for sure. Ed gave you some good info. Additionally, tumor typing (hopefully this has already been done….but still can be if not already) can be super important and helpful in choosing therapies. Mucosal melanoma tends to be more often KIT and NRAS positive than some others.  Here is an article addressing NRAS positive folks… Should that be your type…it might be helpful to speak to your doc about…

                                                                                                    http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/01/good-news-for-nras-positive-folks.html

                                                                                                    Wishing you my best. Celeste

                                                                                                    Bubbles
                                                                                                    Participant

                                                                                                      Hi Lori-Ann,

                                                                                                      So sorry for what you are dealing with! Mucosal melanoma is a tough thing to deal with for sure. Ed gave you some good info. Additionally, tumor typing (hopefully this has already been done….but still can be if not already) can be super important and helpful in choosing therapies. Mucosal melanoma tends to be more often KIT and NRAS positive than some others.  Here is an article addressing NRAS positive folks… Should that be your type…it might be helpful to speak to your doc about…

                                                                                                      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/01/good-news-for-nras-positive-folks.html

                                                                                                      Wishing you my best. Celeste

                                                                                                      Bubbles
                                                                                                      Participant

                                                                                                        Hi Lori-Ann,

                                                                                                        So sorry for what you are dealing with! Mucosal melanoma is a tough thing to deal with for sure. Ed gave you some good info. Additionally, tumor typing (hopefully this has already been done….but still can be if not already) can be super important and helpful in choosing therapies. Mucosal melanoma tends to be more often KIT and NRAS positive than some others.  Here is an article addressing NRAS positive folks… Should that be your type…it might be helpful to speak to your doc about…

                                                                                                        http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/01/good-news-for-nras-positive-folks.html

                                                                                                        Wishing you my best. Celeste

                                                                                                        Bubbles
                                                                                                        Participant

                                                                                                          And in my daily purusal of ASCO 2016…I just found this….

                                                                                                          http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-anti-pd1-for-acral-and.html

                                                                                                          Hope it helps.  celeste

                                                                                                          Bubbles
                                                                                                          Participant

                                                                                                            And in my daily purusal of ASCO 2016…I just found this….

                                                                                                            http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-anti-pd1-for-acral-and.html

                                                                                                            Hope it helps.  celeste

                                                                                                            Bubbles
                                                                                                            Participant

                                                                                                              And in my daily purusal of ASCO 2016…I just found this….

                                                                                                              http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-anti-pd1-for-acral-and.html

                                                                                                              Hope it helps.  celeste

                                                                                                              JohnA
                                                                                                              Participant

                                                                                                                Sorry to hear of this diagnosis for you. My wife has anal MM (resected in Nov 2014, returned to lungs, liver, bone and brain in April 2016) and is taking ipi+nivo.  We've seen well known experts at several leading institutions frequently mentioned on this list and have heard from each that the response rate they expect among MM is 'a little less' than the response rate they see among cutaneous metastatic cases, they still expect around 50% to respond.

                                                                                                                I'm not a doc. If in your shoes I would think about:

                                                                                                                1) seeing at least 3 well-known experts who are currently treating MM cases to get their input – Dr. Hodi at Dana Farber, Dr. Chapman at Sloan Kettering are a couple, but you'll find a number of others recommended on this site. Most willnot do phone consults, you have to go and see them.

                                                                                                                2) figuring out why they are recommending Ipi alone, rather than the combo (Ipi+nivo). Is this adjuvant for you? Even still, not sure Ipi has better outcomes than a Pd1 alone, and side effects of the latter appear more tolerable. See Celeste's posts on the new adjuvant studies coming out. If not adjuvant, my understanding is that the combo is delivering the best results right now. Someone please correct me if I'm wrong here.

                                                                                                                I hope this helps, good luck!

                                                                                                                  Lori Ann
                                                                                                                  Participant

                                                                                                                    Thank you for your input!  This is adjuvant for me; however, it is a recurrence.  Last year there wasn't much offered so I did radiation.  Now, we're looking at ways to treat this system-wide.  Best wishes to your and your wife!

                                                                                                                     

                                                                                                                    Lori Ann
                                                                                                                    Participant

                                                                                                                      Thank you for your input!  This is adjuvant for me; however, it is a recurrence.  Last year there wasn't much offered so I did radiation.  Now, we're looking at ways to treat this system-wide.  Best wishes to your and your wife!

                                                                                                                       

                                                                                                                      Lori Ann
                                                                                                                      Participant

                                                                                                                        Thank you for your input!  This is adjuvant for me; however, it is a recurrence.  Last year there wasn't much offered so I did radiation.  Now, we're looking at ways to treat this system-wide.  Best wishes to your and your wife!

                                                                                                                         

                                                                                                                      JohnA
                                                                                                                      Participant

                                                                                                                        Sorry to hear of this diagnosis for you. My wife has anal MM (resected in Nov 2014, returned to lungs, liver, bone and brain in April 2016) and is taking ipi+nivo.  We've seen well known experts at several leading institutions frequently mentioned on this list and have heard from each that the response rate they expect among MM is 'a little less' than the response rate they see among cutaneous metastatic cases, they still expect around 50% to respond.

                                                                                                                        I'm not a doc. If in your shoes I would think about:

                                                                                                                        1) seeing at least 3 well-known experts who are currently treating MM cases to get their input – Dr. Hodi at Dana Farber, Dr. Chapman at Sloan Kettering are a couple, but you'll find a number of others recommended on this site. Most willnot do phone consults, you have to go and see them.

                                                                                                                        2) figuring out why they are recommending Ipi alone, rather than the combo (Ipi+nivo). Is this adjuvant for you? Even still, not sure Ipi has better outcomes than a Pd1 alone, and side effects of the latter appear more tolerable. See Celeste's posts on the new adjuvant studies coming out. If not adjuvant, my understanding is that the combo is delivering the best results right now. Someone please correct me if I'm wrong here.

                                                                                                                        I hope this helps, good luck!

                                                                                                                        JohnA
                                                                                                                        Participant

                                                                                                                          Sorry to hear of this diagnosis for you. My wife has anal MM (resected in Nov 2014, returned to lungs, liver, bone and brain in April 2016) and is taking ipi+nivo.  We've seen well known experts at several leading institutions frequently mentioned on this list and have heard from each that the response rate they expect among MM is 'a little less' than the response rate they see among cutaneous metastatic cases, they still expect around 50% to respond.

                                                                                                                          I'm not a doc. If in your shoes I would think about:

                                                                                                                          1) seeing at least 3 well-known experts who are currently treating MM cases to get their input – Dr. Hodi at Dana Farber, Dr. Chapman at Sloan Kettering are a couple, but you'll find a number of others recommended on this site. Most willnot do phone consults, you have to go and see them.

                                                                                                                          2) figuring out why they are recommending Ipi alone, rather than the combo (Ipi+nivo). Is this adjuvant for you? Even still, not sure Ipi has better outcomes than a Pd1 alone, and side effects of the latter appear more tolerable. See Celeste's posts on the new adjuvant studies coming out. If not adjuvant, my understanding is that the combo is delivering the best results right now. Someone please correct me if I'm wrong here.

                                                                                                                          I hope this helps, good luck!

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                                                                                                                      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.

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