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 Melanoma with Brain Mets

Forums Mucosal Melanoma Community Mucosal Melanoma with Brain Mets

  • Post
    Maria C
    Participant

      Hi fellow warriors – 

      I am 7 months into a mucosal melanoma diagnosis that went from Stage III to Stage IV at the first set of scans after my initial surgery. It seems I keep falling into this "rare" category – not only having mucosal melanoma to begin with, but having the first mets in my brain (rather than liver, lung, bones). The first brain tumor was treated with gamma knife (they found 2 on the actual day of the procedure), then I began the nivo/ipi combo which sent me into the hospital within a week with the "rare" side effect of uveitis (retina detachment of both eyes). Months after that episode, I now have had all 4 combo infusions and another gamma knife procedure (an MRI found 2 and then a 3rd was found the day of the procedure).

      On the BIG PLUS side, one lingering tumor in my pelvic area shrunk from 13 ml to 6 ml to now 3 ml (3 separate scans), the 5 brain tumors that were gamma-knifed are all in their death stages, and the latest MRI – taken after my 4th 2-drug combo infusion – shows NO NEW BRAIN TUMORS. So fingers crossed the immunotherapy is kicking in and controling the brain mets?

      My question is, has anyone else on this board with brain mets also responded to the ipi-nivo comb with a similar result? I'm not clear about the trajectory of brain mets with melanoma – does it usually progress or does it sometimes go away by itself? In other words, can we be confident this is a response to the treatment?

      I would also love to connect with anyone who also has a mucosal diagnosis….a search on this forum brings up only dated posts (latest were from 2013). 

      Very grateful to find this community and am finding some much-needed inspiration – and reality check – as I read through all your thoughtful and honest posts. Thanks so much for sharing, all.

       

       

    Viewing 17 reply threads
    • Replies
        kylez
        Participant

          Hi Maria,

          Congratulations on the BIG PLUS side with tumor control and shrinkage. And no new brain mets.

          My oncologist said to me that he thinks a round of IPI in June 2011 helped me to not have any brain met recurrences since, knock on wood. The first couple of weeks that June, I had 4 active mets treated, some by surgery and some with Gamma Knife. At that point all active visible disease was in my brain, none elsewhere. Over the previous 7 months, it seemed like brain mets were popping up like mushrooms. 1, then 2, then 4, then 5.

          Anyway, at the end of that June I got IPI. I didn't think I would be in the percentage that IPI would help. Now I think it must have.

          kylez
          Participant

            Hi Maria,

            Congratulations on the BIG PLUS side with tumor control and shrinkage. And no new brain mets.

            My oncologist said to me that he thinks a round of IPI in June 2011 helped me to not have any brain met recurrences since, knock on wood. The first couple of weeks that June, I had 4 active mets treated, some by surgery and some with Gamma Knife. At that point all active visible disease was in my brain, none elsewhere. Over the previous 7 months, it seemed like brain mets were popping up like mushrooms. 1, then 2, then 4, then 5.

            Anyway, at the end of that June I got IPI. I didn't think I would be in the percentage that IPI would help. Now I think it must have.

              CHD
              Participant

                Hi Maria,

                That is wonderful you are getting such a good response. 

                What type of mucosal do you have?

                I had stage I-II vulvar mucosal melanoma diagnosed in 2013, treated with right-sided radical vulvectomy, SLNB, then 2 additional vulvectomies since then, one reconstructive and one for left-sided in situ, but no evidence of any further disease on my PET scan in August… definitely something to celebrate!  Other than the surgeries, no additional treatment, just frequent followup.

                I can't comment on the brain mets or treatment, but just wanted to say hello.  There are a few of us posting here with mucosal.  Ours is a rare form, but it definitely is a great group of people here.

                Best of luck to you!

                Cheri

                CHD
                Participant

                  Hi Maria,

                  That is wonderful you are getting such a good response. 

                  What type of mucosal do you have?

                  I had stage I-II vulvar mucosal melanoma diagnosed in 2013, treated with right-sided radical vulvectomy, SLNB, then 2 additional vulvectomies since then, one reconstructive and one for left-sided in situ, but no evidence of any further disease on my PET scan in August… definitely something to celebrate!  Other than the surgeries, no additional treatment, just frequent followup.

                  I can't comment on the brain mets or treatment, but just wanted to say hello.  There are a few of us posting here with mucosal.  Ours is a rare form, but it definitely is a great group of people here.

                  Best of luck to you!

                  Cheri

                  Maria C
                  Participant

                    Thanks for the "hello" Cheri – and glad to hear from a fellow mucosal patient ๐Ÿ™‚ Very glad to hear you have not needed any additional treatment in years. Keep on keeping on!!!

                    Maria C
                    Participant

                      Thanks for the "hello" Cheri – and glad to hear from a fellow mucosal patient ๐Ÿ™‚ Very glad to hear you have not needed any additional treatment in years. Keep on keeping on!!!

                      Maria C
                      Participant

                        Thanks for the "hello" Cheri – and glad to hear from a fellow mucosal patient ๐Ÿ™‚ Very glad to hear you have not needed any additional treatment in years. Keep on keeping on!!!

                        CHD
                        Participant

                          Hi Maria,

                          That is wonderful you are getting such a good response. 

                          What type of mucosal do you have?

                          I had stage I-II vulvar mucosal melanoma diagnosed in 2013, treated with right-sided radical vulvectomy, SLNB, then 2 additional vulvectomies since then, one reconstructive and one for left-sided in situ, but no evidence of any further disease on my PET scan in August… definitely something to celebrate!  Other than the surgeries, no additional treatment, just frequent followup.

                          I can't comment on the brain mets or treatment, but just wanted to say hello.  There are a few of us posting here with mucosal.  Ours is a rare form, but it definitely is a great group of people here.

                          Best of luck to you!

                          Cheri

                          Maria C
                          Participant

                            Hi there and thank you for sharing. So glad to hear ipi worked for you – and for so long! You'll be coming on 5 years of no brain mets this June, yes?? That's very encouraging, as I've been told 10 years ago I'd have 4 months to live with brain mets/mucosal melanoma. 

                            I was worried about the "popping up like mushrooms" behavior because that's the pattern mine seemed to be taking too (1-2 the first time, then 2-3 the second time). I was fully expecting 3+ found in my 3rd MRI, so my husband and I were completely blown away when there was no new activitiy! I was told controlling my brain mets was my biggest challenge in my case. I just hope the "control" is durable.

                            Maria C
                            Participant

                              Hi there and thank you for sharing. So glad to hear ipi worked for you – and for so long! You'll be coming on 5 years of no brain mets this June, yes?? That's very encouraging, as I've been told 10 years ago I'd have 4 months to live with brain mets/mucosal melanoma. 

                              I was worried about the "popping up like mushrooms" behavior because that's the pattern mine seemed to be taking too (1-2 the first time, then 2-3 the second time). I was fully expecting 3+ found in my 3rd MRI, so my husband and I were completely blown away when there was no new activitiy! I was told controlling my brain mets was my biggest challenge in my case. I just hope the "control" is durable.

                              Maria C
                              Participant

                                Hi there and thank you for sharing. So glad to hear ipi worked for you – and for so long! You'll be coming on 5 years of no brain mets this June, yes?? That's very encouraging, as I've been told 10 years ago I'd have 4 months to live with brain mets/mucosal melanoma. 

                                I was worried about the "popping up like mushrooms" behavior because that's the pattern mine seemed to be taking too (1-2 the first time, then 2-3 the second time). I was fully expecting 3+ found in my 3rd MRI, so my husband and I were completely blown away when there was no new activitiy! I was told controlling my brain mets was my biggest challenge in my case. I just hope the "control" is durable.

                              kylez
                              Participant

                                Hi Maria,

                                Congratulations on the BIG PLUS side with tumor control and shrinkage. And no new brain mets.

                                My oncologist said to me that he thinks a round of IPI in June 2011 helped me to not have any brain met recurrences since, knock on wood. The first couple of weeks that June, I had 4 active mets treated, some by surgery and some with Gamma Knife. At that point all active visible disease was in my brain, none elsewhere. Over the previous 7 months, it seemed like brain mets were popping up like mushrooms. 1, then 2, then 4, then 5.

                                Anyway, at the end of that June I got IPI. I didn't think I would be in the percentage that IPI would help. Now I think it must have.

                                ed williams
                                Participant

                                  Hi Maria, great to hear that the tumors are shrinking. I had mets in my right lung and brain 1.5 years after finding a mole on my back and the Melanoma had spread to 2 of 3  lymph nodes in right arm pit. I was hoping to get into the Ipi plus nivo combination or monotherapy trial by Bristol Myer Squibb back in 2014 but they didn't accept patients with active brain mets. Luck for me the three small brain tumors responded to cyberknife radiation and no new ones have developed. I was able to start the Bristol Myer Squibb trial and just finished my 2 year mark. Now I can't say for sure if it has been the immunotherapy drugs or the cyberknife treatment by itself that has kept the brain under control. At my first set of scans of my lung after 12 weeks on the trial both lung tumors had started to shrink and have continued to stay stable for 2 years. I am in that large group of Immunotherapy patients that are consider partial responders, stable but still visible disease on ct scans. I wish my tumors were in a better location so that they could be removed and looked at to see if there is still active disease or not. Wishing you the best in your journey!!!! Ed

                                  ed williams
                                  Participant

                                    Hi Maria, great to hear that the tumors are shrinking. I had mets in my right lung and brain 1.5 years after finding a mole on my back and the Melanoma had spread to 2 of 3  lymph nodes in right arm pit. I was hoping to get into the Ipi plus nivo combination or monotherapy trial by Bristol Myer Squibb back in 2014 but they didn't accept patients with active brain mets. Luck for me the three small brain tumors responded to cyberknife radiation and no new ones have developed. I was able to start the Bristol Myer Squibb trial and just finished my 2 year mark. Now I can't say for sure if it has been the immunotherapy drugs or the cyberknife treatment by itself that has kept the brain under control. At my first set of scans of my lung after 12 weeks on the trial both lung tumors had started to shrink and have continued to stay stable for 2 years. I am in that large group of Immunotherapy patients that are consider partial responders, stable but still visible disease on ct scans. I wish my tumors were in a better location so that they could be removed and looked at to see if there is still active disease or not. Wishing you the best in your journey!!!! Ed

                                      Maria C
                                      Participant

                                        Great to hear from you, Ed. I'm still in my first year so am still tryig to process all this while the doctors are being vigilant and treating my case aggressively since I have an aggressive form. I guess I am now officially a "partial responder" too. My guess is the cyberknife is working together with the immunotherapy, and I read somewhere (can't find the article now) that the cyberknife can release the cancer cells that then are easier to "recognize" during the immunotherapy treatment, so it's kinda like a one-two punch….

                                        Are you currently under treatment or have you been stable for 2 years post-treatment?

                                        Maria C
                                        Participant

                                          Great to hear from you, Ed. I'm still in my first year so am still tryig to process all this while the doctors are being vigilant and treating my case aggressively since I have an aggressive form. I guess I am now officially a "partial responder" too. My guess is the cyberknife is working together with the immunotherapy, and I read somewhere (can't find the article now) that the cyberknife can release the cancer cells that then are easier to "recognize" during the immunotherapy treatment, so it's kinda like a one-two punch….

                                          Are you currently under treatment or have you been stable for 2 years post-treatment?

                                          ed williams
                                          Participant

                                            I am still getting treatments every two weeks, cycle 19 of trial, with each cycle being 6 weeks long. They call the effect of radiation treatments that have an effect on Melanoma tumor else where in the body, the abscopal effect. It is hard to prove but the idea of antigen presenting cells bring part of the tumor(after radiation) to the lymph nodes where the t-cell is triggered to look for that same protein that was part of the cancer is very interesting. In my case I was treated with the cyberknife in early oct and then after 3 months the scans showed brain was clear  which allowed me to start immunotherapy trial late January. Take care Ed.

                                            ed williams
                                            Participant

                                              I am still getting treatments every two weeks, cycle 19 of trial, with each cycle being 6 weeks long. They call the effect of radiation treatments that have an effect on Melanoma tumor else where in the body, the abscopal effect. It is hard to prove but the idea of antigen presenting cells bring part of the tumor(after radiation) to the lymph nodes where the t-cell is triggered to look for that same protein that was part of the cancer is very interesting. In my case I was treated with the cyberknife in early oct and then after 3 months the scans showed brain was clear  which allowed me to start immunotherapy trial late January. Take care Ed.

                                              Maria C
                                              Participant

                                                Ed – you named it, the "abscopal effect" (I remember in the article there was a term that began with an "a"…). 

                                                From my understanding, there's no need to wait for a clinical trial anymore for the ipi/nivo combo because it's been FDA approved for Stage 4 melanoma since October 2015. The only advantage of using the FDA approval/insurance route rather than clinical trial is the flexibility your oncologist will have in delivering and managing your treatment. How many more cycles do you have of your trial? 

                                                 

                                                Maria C
                                                Participant

                                                  Ed – you named it, the "abscopal effect" (I remember in the article there was a term that began with an "a"…). 

                                                  From my understanding, there's no need to wait for a clinical trial anymore for the ipi/nivo combo because it's been FDA approved for Stage 4 melanoma since October 2015. The only advantage of using the FDA approval/insurance route rather than clinical trial is the flexibility your oncologist will have in delivering and managing your treatment. How many more cycles do you have of your trial? 

                                                   

                                                  Maria C
                                                  Participant

                                                    Ed – you named it, the "abscopal effect" (I remember in the article there was a term that began with an "a"…). 

                                                    From my understanding, there's no need to wait for a clinical trial anymore for the ipi/nivo combo because it's been FDA approved for Stage 4 melanoma since October 2015. The only advantage of using the FDA approval/insurance route rather than clinical trial is the flexibility your oncologist will have in delivering and managing your treatment. How many more cycles do you have of your trial? 

                                                     

                                                    Maria C
                                                    Participant

                                                      Ed – you named it, the "abscopal effect" (I remember in the article there was a term that began with an "a"…). 

                                                      From my understanding, there's no need to wait for a clinical trial anymore for the ipi/nivo combo because it's been FDA approved for Stage 4 melanoma since October 2015. The only advantage of using the FDA approval/insurance route rather than clinical trial is the flexibility your oncologist will have in delivering and managing your treatment. How many more cycles do you have of your trial? 

                                                       

                                                      Maria C
                                                      Participant

                                                        Ed – you named it, the "abscopal effect" (I remember in the article there was a term that began with an "a"…). 

                                                        From my understanding, there's no need to wait for a clinical trial anymore for the ipi/nivo combo because it's been FDA approved for Stage 4 melanoma since October 2015. The only advantage of using the FDA approval/insurance route rather than clinical trial is the flexibility your oncologist will have in delivering and managing your treatment. How many more cycles do you have of your trial? 

                                                         

                                                        Maria C
                                                        Participant

                                                          Ed – you named it, the "abscopal effect" (I remember in the article there was a term that began with an "a"…). 

                                                          From my understanding, there's no need to wait for a clinical trial anymore for the ipi/nivo combo because it's been FDA approved for Stage 4 melanoma since October 2015. The only advantage of using the FDA approval/insurance route rather than clinical trial is the flexibility your oncologist will have in delivering and managing your treatment. How many more cycles do you have of your trial? 

                                                           

                                                          ed williams
                                                          Participant

                                                            I am still getting treatments every two weeks, cycle 19 of trial, with each cycle being 6 weeks long. They call the effect of radiation treatments that have an effect on Melanoma tumor else where in the body, the abscopal effect. It is hard to prove but the idea of antigen presenting cells bring part of the tumor(after radiation) to the lymph nodes where the t-cell is triggered to look for that same protein that was part of the cancer is very interesting. In my case I was treated with the cyberknife in early oct and then after 3 months the scans showed brain was clear  which allowed me to start immunotherapy trial late January. Take care Ed.

                                                            Maria C
                                                            Participant

                                                              Great to hear from you, Ed. I'm still in my first year so am still tryig to process all this while the doctors are being vigilant and treating my case aggressively since I have an aggressive form. I guess I am now officially a "partial responder" too. My guess is the cyberknife is working together with the immunotherapy, and I read somewhere (can't find the article now) that the cyberknife can release the cancer cells that then are easier to "recognize" during the immunotherapy treatment, so it's kinda like a one-two punch….

                                                              Are you currently under treatment or have you been stable for 2 years post-treatment?

                                                            ed williams
                                                            Participant

                                                              Hi Maria, great to hear that the tumors are shrinking. I had mets in my right lung and brain 1.5 years after finding a mole on my back and the Melanoma had spread to 2 of 3  lymph nodes in right arm pit. I was hoping to get into the Ipi plus nivo combination or monotherapy trial by Bristol Myer Squibb back in 2014 but they didn't accept patients with active brain mets. Luck for me the three small brain tumors responded to cyberknife radiation and no new ones have developed. I was able to start the Bristol Myer Squibb trial and just finished my 2 year mark. Now I can't say for sure if it has been the immunotherapy drugs or the cyberknife treatment by itself that has kept the brain under control. At my first set of scans of my lung after 12 weeks on the trial both lung tumors had started to shrink and have continued to stay stable for 2 years. I am in that large group of Immunotherapy patients that are consider partial responders, stable but still visible disease on ct scans. I wish my tumors were in a better location so that they could be removed and looked at to see if there is still active disease or not. Wishing you the best in your journey!!!! Ed

                                                              mary1233
                                                              Participant

                                                                Hello Maria – I have a stage 3 mucosal diagnosis. So happy to read that your treatment is going well.

                                                                I am wondering if you know your mutation status. I was told by my oncologist that the mutation status was more relevant than the fact that it is mucosal. I am wild type and was thrilled to hear that the ipi-nivo was so effective on the wild type mutations, Then I read a couple of weeks ago that novolumab is less effective on mucosal than cutaneous at the rate of only 23%. My head is spinning.

                                                                I have scans and an appointment on Thursday – hope to get this cleared up.

                                                                Best wishes. 

                                                                Mary

                                                                mary1233
                                                                Participant

                                                                  Hello Maria – I have a stage 3 mucosal diagnosis. So happy to read that your treatment is going well.

                                                                  I am wondering if you know your mutation status. I was told by my oncologist that the mutation status was more relevant than the fact that it is mucosal. I am wild type and was thrilled to hear that the ipi-nivo was so effective on the wild type mutations, Then I read a couple of weeks ago that novolumab is less effective on mucosal than cutaneous at the rate of only 23%. My head is spinning.

                                                                  I have scans and an appointment on Thursday – hope to get this cleared up.

                                                                  Best wishes. 

                                                                  Mary

                                                                    Maria C
                                                                    Participant

                                                                      Hi Mary – 

                                                                      I was tested positive for c-kit, which is common for mucosal. Like you, I did a lot of research that got my head spinning, and still found very little data collected on mucosal melanoma. I just get steered again and again into the larger melanoma bucket, being told that mucosal patients are included in the immunotherapy studies and some are seeing a durable response like other melanoma patients.

                                                                      RE: stats, i am starting to stop paying attention to them because they are becoming increasingly irrelevant as I continue this journey. I was told that less than 1 in a million get the kind of cancer I have, that the brain as the first mets is "unheard of," and then less than 1% or 3% or 5% get the kind of side effects I'm getting with the ipi-nivo combo, etc. It really just feels like a toss up – everything out of my control anyway so why try to squeeze myself into a stat?

                                                                      Also, as an aside, I remember when I was first diagnosed and looked up what i had online, I was convinced it was all over for me. I had been given a death sentence. But the next day I  asked my oncologist what my chances were and she said with the new immunotherapy drugs, 60%, and I almost danced out of there thinking for sure, I'd be in the 60%. Then my husband called her assistant a few days later asking questions, and she told him that with mucosal melanoma, it's more like 45%. I was FURIOUS with this anonymous woman, who so nonchalantly cut my chances down from the majority to the minority!! I was devestated, then angry (who is she? she's just the assistant!) … and now, all these months later, I've come to know her and appreciate all her advice and support and guidance through this roller coaster ride. And she's the first one to cheer me on with any new side effect – "We like to see that. That means the drugs are working…"

                                                                      If you're just starting, I would encourage you to go the ipi-nivo route, if you are eligible. My oncologist originally wanted to start me on just nivo but after research and second opinions, etc., I was sold on the 2-drug combo and based on my results so far, am glad we took that route.

                                                                      We'll see what happens going forward – good luck on Thursday! (Have all your questions ready!!!)

                                                                       

                                                                      Maria C
                                                                      Participant

                                                                        Hi Mary – 

                                                                        I was tested positive for c-kit, which is common for mucosal. Like you, I did a lot of research that got my head spinning, and still found very little data collected on mucosal melanoma. I just get steered again and again into the larger melanoma bucket, being told that mucosal patients are included in the immunotherapy studies and some are seeing a durable response like other melanoma patients.

                                                                        RE: stats, i am starting to stop paying attention to them because they are becoming increasingly irrelevant as I continue this journey. I was told that less than 1 in a million get the kind of cancer I have, that the brain as the first mets is "unheard of," and then less than 1% or 3% or 5% get the kind of side effects I'm getting with the ipi-nivo combo, etc. It really just feels like a toss up – everything out of my control anyway so why try to squeeze myself into a stat?

                                                                        Also, as an aside, I remember when I was first diagnosed and looked up what i had online, I was convinced it was all over for me. I had been given a death sentence. But the next day I  asked my oncologist what my chances were and she said with the new immunotherapy drugs, 60%, and I almost danced out of there thinking for sure, I'd be in the 60%. Then my husband called her assistant a few days later asking questions, and she told him that with mucosal melanoma, it's more like 45%. I was FURIOUS with this anonymous woman, who so nonchalantly cut my chances down from the majority to the minority!! I was devestated, then angry (who is she? she's just the assistant!) … and now, all these months later, I've come to know her and appreciate all her advice and support and guidance through this roller coaster ride. And she's the first one to cheer me on with any new side effect – "We like to see that. That means the drugs are working…"

                                                                        If you're just starting, I would encourage you to go the ipi-nivo route, if you are eligible. My oncologist originally wanted to start me on just nivo but after research and second opinions, etc., I was sold on the 2-drug combo and based on my results so far, am glad we took that route.

                                                                        We'll see what happens going forward – good luck on Thursday! (Have all your questions ready!!!)

                                                                         

                                                                        hattie_m
                                                                        Participant

                                                                          HI maria, I have never posted anything on a chat room before … but having read your message I felt compelled to. I think your messagae is from a long time ago, but I wanted to share my husbands story with you as he has the same mutation. D has mucosal melanoma originating in the bowel and diagnosed in Nov 15 To cut a long story short within the space of a year it had spread to many places, despite having had extensive amounts of immuno (ipinivo combi) – from which the side effects were severe and he was hospitalised for much of last year. Anyway, now comes the most relevant bit – the immuno hadn't worked so our oncologist switched Dom to a targetted therapy called Gleevec (also called imitinab I think) due to his C-Kit mutation – its a drug usually used in Lukemia. Anyway, within 6 weeks the cancer had completely regressed (from around 6 different parts of his body) and 6 months later, the cancer hasn't learnt its way round the drug – it has felt like a total miracle. Our oncologiest also says there are a number of sister drugs we can then try if there is 'break through' against with this drug. Anyway, its not usually used in mm, so I wanted to share this success story in the hope it could help you if needed or someone else with a c-kit mutation.

                                                                          hattie_m
                                                                          Participant

                                                                            HI maria, I have never posted anything on a chat room before … but having read your message I felt compelled to. I think your messagae is from a long time ago, but I wanted to share my husbands story with you as he has the same mutation. D has mucosal melanoma originating in the bowel and diagnosed in Nov 15 To cut a long story short within the space of a year it had spread to many places, despite having had extensive amounts of immuno (ipinivo combi) – from which the side effects were severe and he was hospitalised for much of last year. Anyway, now comes the most relevant bit – the immuno hadn't worked so our oncologist switched Dom to a targetted therapy called Gleevec (also called imitinab I think) due to his C-Kit mutation – its a drug usually used in Lukemia. Anyway, within 6 weeks the cancer had completely regressed (from around 6 different parts of his body) and 6 months later, the cancer hasn't learnt its way round the drug – it has felt like a total miracle. Our oncologiest also says there are a number of sister drugs we can then try if there is 'break through' against with this drug. Anyway, its not usually used in mm, so I wanted to share this success story in the hope it could help you if needed or someone else with a c-kit mutation.

                                                                            Maria C
                                                                            Participant

                                                                              Hi Mary – 

                                                                              I was tested positive for c-kit, which is common for mucosal. Like you, I did a lot of research that got my head spinning, and still found very little data collected on mucosal melanoma. I just get steered again and again into the larger melanoma bucket, being told that mucosal patients are included in the immunotherapy studies and some are seeing a durable response like other melanoma patients.

                                                                              RE: stats, i am starting to stop paying attention to them because they are becoming increasingly irrelevant as I continue this journey. I was told that less than 1 in a million get the kind of cancer I have, that the brain as the first mets is "unheard of," and then less than 1% or 3% or 5% get the kind of side effects I'm getting with the ipi-nivo combo, etc. It really just feels like a toss up – everything out of my control anyway so why try to squeeze myself into a stat?

                                                                              Also, as an aside, I remember when I was first diagnosed and looked up what i had online, I was convinced it was all over for me. I had been given a death sentence. But the next day I  asked my oncologist what my chances were and she said with the new immunotherapy drugs, 60%, and I almost danced out of there thinking for sure, I'd be in the 60%. Then my husband called her assistant a few days later asking questions, and she told him that with mucosal melanoma, it's more like 45%. I was FURIOUS with this anonymous woman, who so nonchalantly cut my chances down from the majority to the minority!! I was devestated, then angry (who is she? she's just the assistant!) … and now, all these months later, I've come to know her and appreciate all her advice and support and guidance through this roller coaster ride. And she's the first one to cheer me on with any new side effect – "We like to see that. That means the drugs are working…"

                                                                              If you're just starting, I would encourage you to go the ipi-nivo route, if you are eligible. My oncologist originally wanted to start me on just nivo but after research and second opinions, etc., I was sold on the 2-drug combo and based on my results so far, am glad we took that route.

                                                                              We'll see what happens going forward – good luck on Thursday! (Have all your questions ready!!!)

                                                                               

                                                                            mary1233
                                                                            Participant

                                                                              Hello Maria – I have a stage 3 mucosal diagnosis. So happy to read that your treatment is going well.

                                                                              I am wondering if you know your mutation status. I was told by my oncologist that the mutation status was more relevant than the fact that it is mucosal. I am wild type and was thrilled to hear that the ipi-nivo was so effective on the wild type mutations, Then I read a couple of weeks ago that novolumab is less effective on mucosal than cutaneous at the rate of only 23%. My head is spinning.

                                                                              I have scans and an appointment on Thursday – hope to get this cleared up.

                                                                              Best wishes. 

                                                                              Mary

                                                                              Bubbles
                                                                              Participant

                                                                                Hi Maria,

                                                                                Here is a post regarding melanoma brain mets in general…as well as effectiveness of both immunotherapy and BRAFi…with several links within:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/07/a-really-good-review-of-treatment-data.html

                                                                                Hope that helps.  c

                                                                                Bubbles
                                                                                Participant

                                                                                  Hi Maria,

                                                                                  Here is a post regarding melanoma brain mets in general…as well as effectiveness of both immunotherapy and BRAFi…with several links within:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/07/a-really-good-review-of-treatment-data.html

                                                                                  Hope that helps.  c

                                                                                  Bubbles
                                                                                  Participant

                                                                                    Hi Maria,

                                                                                    Here is a post regarding melanoma brain mets in general…as well as effectiveness of both immunotherapy and BRAFi…with several links within:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/07/a-really-good-review-of-treatment-data.html

                                                                                    Hope that helps.  c

                                                                                    Bubbles
                                                                                    Participant

                                                                                      This post has data regarding abscopal responses (with several links): http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/10/review-of-abscopal-responses-after.html

                                                                                      This post addresses the benefits attained when immunotherapy is combined with radiation:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/radiation-for-melanomabetter-when.html

                                                                                      Wishing you my best.  c

                                                                                      Bubbles
                                                                                      Participant

                                                                                        This post has data regarding abscopal responses (with several links): http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/10/review-of-abscopal-responses-after.html

                                                                                        This post addresses the benefits attained when immunotherapy is combined with radiation:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/radiation-for-melanomabetter-when.html

                                                                                        Wishing you my best.  c

                                                                                        Bubbles
                                                                                        Participant

                                                                                          This post has data regarding abscopal responses (with several links): http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/10/review-of-abscopal-responses-after.html

                                                                                          This post addresses the benefits attained when immunotherapy is combined with radiation:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/radiation-for-melanomabetter-when.html

                                                                                          Wishing you my best.  c

                                                                                            Maria C
                                                                                            Participant

                                                                                              Thank you for all this information Celeste – your blog was one of the first sites that popped up when I first researched my diagnosis, but there's so much there so thanks for pointing out the relevant posts.

                                                                                              Much appreciated – 

                                                                                              Maria C
                                                                                              Participant

                                                                                                Thank you for all this information Celeste – your blog was one of the first sites that popped up when I first researched my diagnosis, but there's so much there so thanks for pointing out the relevant posts.

                                                                                                Much appreciated – 

                                                                                                Maria C
                                                                                                Participant

                                                                                                  Thank you for all this information Celeste – your blog was one of the first sites that popped up when I first researched my diagnosis, but there's so much there so thanks for pointing out the relevant posts.

                                                                                                  Much appreciated – 

                                                                                                hawaii marcus
                                                                                                Participant

                                                                                                  Hi Maria,

                                                                                                  Glad to hear you are a fighter!!! Keep it up!!

                                                                                                  A caregiver began a FaceBook group for Mucosal Melanoma, if looking for a community. There are almost 60 of us. Here is link to open page:

                                                                                                  https://www.facebook.com/Mucosalmelanomawarriors/

                                                                                                  All are welcome to come check it out with a focus on Mucosal Melanoma.

                                                                                                   

                                                                                                   

                                                                                                  Aloha,

                                                                                                  Marcus

                                                                                                   

                                                                                                  hawaii marcus
                                                                                                  Participant

                                                                                                    Hi Maria,

                                                                                                    Glad to hear you are a fighter!!! Keep it up!!

                                                                                                    A caregiver began a FaceBook group for Mucosal Melanoma, if looking for a community. There are almost 60 of us. Here is link to open page:

                                                                                                    https://www.facebook.com/Mucosalmelanomawarriors/

                                                                                                    All are welcome to come check it out with a focus on Mucosal Melanoma.

                                                                                                     

                                                                                                     

                                                                                                    Aloha,

                                                                                                    Marcus

                                                                                                     

                                                                                                      Maria C
                                                                                                      Participant

                                                                                                        Hi Marcus –

                                                                                                        Thanks so much for the invitation to join your Facebook group. A friend of mine pointed it out to me a month or so ago, but when I joined the private group (which seems more active) it pulled up publicly on my Facebook page … and right now not all my friends/contacts/colleagues know yet about my cancer status. I wish there was more true privacy with Facebook….

                                                                                                        Thanks again for all you are doing to build our community – 

                                                                                                        Cheers,

                                                                                                         

                                                                                                         

                                                                                                        Maria C
                                                                                                        Participant

                                                                                                          Hi Marcus –

                                                                                                          Thanks so much for the invitation to join your Facebook group. A friend of mine pointed it out to me a month or so ago, but when I joined the private group (which seems more active) it pulled up publicly on my Facebook page … and right now not all my friends/contacts/colleagues know yet about my cancer status. I wish there was more true privacy with Facebook….

                                                                                                          Thanks again for all you are doing to build our community – 

                                                                                                          Cheers,

                                                                                                           

                                                                                                           

                                                                                                          Maria C
                                                                                                          Participant

                                                                                                            Hi Marcus –

                                                                                                            Thanks so much for the invitation to join your Facebook group. A friend of mine pointed it out to me a month or so ago, but when I joined the private group (which seems more active) it pulled up publicly on my Facebook page … and right now not all my friends/contacts/colleagues know yet about my cancer status. I wish there was more true privacy with Facebook….

                                                                                                            Thanks again for all you are doing to build our community – 

                                                                                                            Cheers,

                                                                                                             

                                                                                                             

                                                                                                          hawaii marcus
                                                                                                          Participant

                                                                                                            Hi Maria,

                                                                                                            Glad to hear you are a fighter!!! Keep it up!!

                                                                                                            A caregiver began a FaceBook group for Mucosal Melanoma, if looking for a community. There are almost 60 of us. Here is link to open page:

                                                                                                            https://www.facebook.com/Mucosalmelanomawarriors/

                                                                                                            All are welcome to come check it out with a focus on Mucosal Melanoma.

                                                                                                             

                                                                                                             

                                                                                                            Aloha,

                                                                                                            Marcus

                                                                                                             

                                                                                                        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 byย MRF posting policies.