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New Mucosal METs questions plus Naturopath/Nutritionist recommendation?

Forums Mucosal Melanoma Community New Mucosal METs questions plus Naturopath/Nutritionist recommendation?

  • Post
    JohnA
    Participant

      My wife was diagnosed with anal mucosal melanoma in 2014, post-surgery did cisplatin+temodar as adjuvant therapy based on the results from a Phase II trial in China.  The chemo regimen was very hard on her health; she's in her late 40's. 15 months later she's gotMETs in lungs, liver, and bone. We have a elementary-school aged son.

      She's c-kit+ so now we're likely faced with options to Imatinib (Gleevac), or Ipi plus Nivo.  One possible scenario is to try Imatinib first and see if the tumors respond, since side effects are supposedly less intense than ipi/nivo. Progress to ipi/nivo if and when its necessary.

      The doc says if untreated, she might have 6-8 months left. So, after a really hard 6 rounds of chemo last year, she's justifiably wondering if she should try a naturopathic remedy instead.  The logis is that if she does the combo and it does not work, it will likely make her sick and she'll ruin the final months of her life by being super sick from side-effects. 

      She's always been a very healthy eater, but has for 9 months now been extremely strict on diet – very little meat, no dairy, no alcohol, lots of green veggies, juices, etc – , exercise, rest, meditation, acupuncture, massage, sound healing, and other stuff like this.  She worked with Dr. Block in Chicago and he gave her a diet, exercise routine, and supplements, which she's mostly done all of done for 6-9 mos.

      We're still exploring options, but it's quite possible she does a drug therapy plus some naturopathic regimen.

      So, 3 questions for you:

      1) I looked back through the archives and did not find many suggestions for naturopaths or maaster nutritionists – does anyone have any?

      2) any advice on the drug options – imatinib vs ipi/nivo? and anyone who did cisplatin and ipi/nivo, any comparison between side effects for these?

      3) does anyone else have a similar quandry about trying a treatment that could make you sick for your remaining days? How can I best help her through this?

      Thanks for your help!
    Viewing 17 reply threads
    • Replies
        Janner
        Participant

          It seems that gleevec is fairly effective against that mutation.  Personally, I would try that first.  If side effects are bad, she can always move on to a different choice.  Immunotherapy affects everyone differently with some having minimal side effects and other significant.  No way to predict but neither option is chemo.  Look for posts by JerryFromFauq.  He did gleevec for a long time even though he didn't have the exact C-kit mutation needed.  I don't recall him complaining about serious side effects.  The ipi/nivo combo is much newer but can also have more side effects.  I wonder if there are studies that show if it is more effective than gleevec  against c-kit mutations?

            JohnA
            Participant

              Thanks for the suggestion!  I'll look up Jerry-

              JohnA
              Participant

                Thanks for the suggestion!  I'll look up Jerry-

                JohnA
                Participant

                  Thanks for the suggestion!  I'll look up Jerry-

                Janner
                Participant

                  It seems that gleevec is fairly effective against that mutation.  Personally, I would try that first.  If side effects are bad, she can always move on to a different choice.  Immunotherapy affects everyone differently with some having minimal side effects and other significant.  No way to predict but neither option is chemo.  Look for posts by JerryFromFauq.  He did gleevec for a long time even though he didn't have the exact C-kit mutation needed.  I don't recall him complaining about serious side effects.  The ipi/nivo combo is much newer but can also have more side effects.  I wonder if there are studies that show if it is more effective than gleevec  against c-kit mutations?

                  Janner
                  Participant

                    It seems that gleevec is fairly effective against that mutation.  Personally, I would try that first.  If side effects are bad, she can always move on to a different choice.  Immunotherapy affects everyone differently with some having minimal side effects and other significant.  No way to predict but neither option is chemo.  Look for posts by JerryFromFauq.  He did gleevec for a long time even though he didn't have the exact C-kit mutation needed.  I don't recall him complaining about serious side effects.  The ipi/nivo combo is much newer but can also have more side effects.  I wonder if there are studies that show if it is more effective than gleevec  against c-kit mutations?

                    MoiraM
                    Participant

                      Your wife's imuune system needs some help. Boosting it by conventional means is good but it will not be enough, Those melanoma cells have found a way of making themselves invisible to her immune system. Immunotherapy can, if it works for her, make those melanoma cells visible to her immune system.

                      I chose Ipi. The Ipi plus Nivo combination was not available to me in the UK. In the UK Ipi is 3mg/kg, four infusions (one evey three weeks, an afternoon in a cliniic), no maintenance regime.

                      I had diarrhoea (persistent but easily controlled with Imodium) and rash (nothing horrendous, controlled with steroid cream). My pituiatry gland stopped working (permanent, would be lethal but a few pills every morning keep me going just fine). I was never admitted to hospital. I only had a few days off work.

                      Next to conventional chemotherapy it was a walk in the park.

                      So I would try the immunotherapy. Apparently the positive response rate with Ipi/Nivo is much higher than with Ipi alone. If the side effects are really bad she can stop.

                      If it works, if you are a responder, it could buy a lot of time. Possibly years.

                       

                       

                        JohnA
                        Participant

                          Thanks for your input, I really appreciate it.

                          The metaphor of making the cancer cells visible to her immune system is a very helpful one.

                          I wish you the best in your journey-

                          JohnA
                          Participant

                            Thanks for your input, I really appreciate it.

                            The metaphor of making the cancer cells visible to her immune system is a very helpful one.

                            I wish you the best in your journey-

                            JohnA
                            Participant

                              Thanks for your input, I really appreciate it.

                              The metaphor of making the cancer cells visible to her immune system is a very helpful one.

                              I wish you the best in your journey-

                            MoiraM
                            Participant

                              Your wife's imuune system needs some help. Boosting it by conventional means is good but it will not be enough, Those melanoma cells have found a way of making themselves invisible to her immune system. Immunotherapy can, if it works for her, make those melanoma cells visible to her immune system.

                              I chose Ipi. The Ipi plus Nivo combination was not available to me in the UK. In the UK Ipi is 3mg/kg, four infusions (one evey three weeks, an afternoon in a cliniic), no maintenance regime.

                              I had diarrhoea (persistent but easily controlled with Imodium) and rash (nothing horrendous, controlled with steroid cream). My pituiatry gland stopped working (permanent, would be lethal but a few pills every morning keep me going just fine). I was never admitted to hospital. I only had a few days off work.

                              Next to conventional chemotherapy it was a walk in the park.

                              So I would try the immunotherapy. Apparently the positive response rate with Ipi/Nivo is much higher than with Ipi alone. If the side effects are really bad she can stop.

                              If it works, if you are a responder, it could buy a lot of time. Possibly years.

                               

                               

                              MoiraM
                              Participant

                                Your wife's imuune system needs some help. Boosting it by conventional means is good but it will not be enough, Those melanoma cells have found a way of making themselves invisible to her immune system. Immunotherapy can, if it works for her, make those melanoma cells visible to her immune system.

                                I chose Ipi. The Ipi plus Nivo combination was not available to me in the UK. In the UK Ipi is 3mg/kg, four infusions (one evey three weeks, an afternoon in a cliniic), no maintenance regime.

                                I had diarrhoea (persistent but easily controlled with Imodium) and rash (nothing horrendous, controlled with steroid cream). My pituiatry gland stopped working (permanent, would be lethal but a few pills every morning keep me going just fine). I was never admitted to hospital. I only had a few days off work.

                                Next to conventional chemotherapy it was a walk in the park.

                                So I would try the immunotherapy. Apparently the positive response rate with Ipi/Nivo is much higher than with Ipi alone. If the side effects are really bad she can stop.

                                If it works, if you are a responder, it could buy a lot of time. Possibly years.

                                 

                                 

                                ed williams
                                Participant

                                  John, can I ask where your wife is being treated?   My other question was why is your oncologist suggesting Imatinib first instead of the Immunotherapy combination of ipi/nivo? Is your oncologist suggesting that the C-kit drug (Imatinib) would knock down the fast growing tumors then switch to the combination?  I know that muscosal melanoma is very challenging and I am not sure how well it responds to the Immunotherapy combination of Ipi/nivo. Is Dr.Block(above) a melanoma specialist? If not maybe a second opinion would be a good place to start!!!!   Wishing you and your wife the best!!!! Ed

                                  ed williams
                                  Participant

                                    John, can I ask where your wife is being treated?   My other question was why is your oncologist suggesting Imatinib first instead of the Immunotherapy combination of ipi/nivo? Is your oncologist suggesting that the C-kit drug (Imatinib) would knock down the fast growing tumors then switch to the combination?  I know that muscosal melanoma is very challenging and I am not sure how well it responds to the Immunotherapy combination of Ipi/nivo. Is Dr.Block(above) a melanoma specialist? If not maybe a second opinion would be a good place to start!!!!   Wishing you and your wife the best!!!! Ed

                                      JohnA
                                      Participant

                                        Good question, yes lots of melanoma experts have seen her, we got 6 opinions before deciding on the adjuvant radiation + chemo regimen, and the docs were split: 2 said don't do it, 2 said do it, and 2 said they could go either way – before we decided on which specialist to see, we went to Dana Farber (Dr. Hodi), MD Anderson, Sloan Kettering, U of Michigan, and Cleveland Clinic.  

                                        She's been under the care of Dr. Marc Ernstoff at the Cleveland Clinic (who is fantastic, by the way) as well as surgeon Fred Chang and oncologist Chris Lao at University of Michigan Melanoma clinic (also great to work with).  We will get Lao's recommendation this week but he's suggested the combo before knowing about her c-kit mutation.  A consult from USC Cancer center's tumor board unanimously recommended she consider Imatinib as a first line of defense, as I understand it, some small % of people have complete responses, and more have partial responses, and since it's much more convenient and fewer side effects, perhaps we should try that first before the combo. I think that's the logic. I have to read up on Imatinib, I don't have the data yet.  

                                        Dr. Block is an integrative oncologist, and consulted with her on diet exercise and supplements – not the radiation+chemo treatment, since we were unable to find anyone at any of those major medical centers who would say anything more than "eat a heart-healthy diet" – and that was the most liberal response we got!  Although MD Anderson did recommend acupuncture during radiation.  I get it – those guys are in a tough spot – there just aren't good data on impact of diet, exercise, and spiritual work – which is why I'm reaching out here to see what you guys think.

                                        JohnA
                                        Participant

                                          Good question, yes lots of melanoma experts have seen her, we got 6 opinions before deciding on the adjuvant radiation + chemo regimen, and the docs were split: 2 said don't do it, 2 said do it, and 2 said they could go either way – before we decided on which specialist to see, we went to Dana Farber (Dr. Hodi), MD Anderson, Sloan Kettering, U of Michigan, and Cleveland Clinic.  

                                          She's been under the care of Dr. Marc Ernstoff at the Cleveland Clinic (who is fantastic, by the way) as well as surgeon Fred Chang and oncologist Chris Lao at University of Michigan Melanoma clinic (also great to work with).  We will get Lao's recommendation this week but he's suggested the combo before knowing about her c-kit mutation.  A consult from USC Cancer center's tumor board unanimously recommended she consider Imatinib as a first line of defense, as I understand it, some small % of people have complete responses, and more have partial responses, and since it's much more convenient and fewer side effects, perhaps we should try that first before the combo. I think that's the logic. I have to read up on Imatinib, I don't have the data yet.  

                                          Dr. Block is an integrative oncologist, and consulted with her on diet exercise and supplements – not the radiation+chemo treatment, since we were unable to find anyone at any of those major medical centers who would say anything more than "eat a heart-healthy diet" – and that was the most liberal response we got!  Although MD Anderson did recommend acupuncture during radiation.  I get it – those guys are in a tough spot – there just aren't good data on impact of diet, exercise, and spiritual work – which is why I'm reaching out here to see what you guys think.

                                          Maria C
                                          Participant

                                            John, I was diagnosed with mucosal melanoma last June, and did my rounds of 2nd opinions last summer to John Hopkins, Dana Farber & Sloan. All 3 strongly suggested the ipi/nivo combo, which is what I went with, as mucosal patients have been among the responders in trials (albeit with a 10% less response rate than cutenous). Sloan also suggested adding in the Imatinib IF there was progression of disease, but he agreed the first line of defense was the ipi/nivo.

                                            From what I read, it's my understanding the Imatinib (Gleevac) is just a bridge, buys time, but is not durable? (I may be mistaken). Have you gone back to your second opinion contacts with the progression of disease stage, and since the FDA approval of the new immunotherapy protocol? 

                                            Re: naturopathic – when I was first diagnosed I had an onslaught of friends and relatives sending me all kinds of naturopathic and holistic products, recommendations, etc. I had a crash course in proper diet, exercise, meditation practices, and more, with loved ones sending me links by email and books/products by mail like a series of life rafts being thrown at me in rapid succession.

                                            I made significant lifestyle changes at first, but have since relaxed back into a mix of old and new habits, believing that if my time is limited, just let me have my fruit biscottis 🙂 My oncologist personally believes that stress is far more of a concern than diet and exercise, and the best thing I could do for my immune system is to "just chill."

                                            {{{{HUGS}}}} to you and your wife as you make these important decisions.

                                             

                                            Maria C
                                            Participant

                                              John, I was diagnosed with mucosal melanoma last June, and did my rounds of 2nd opinions last summer to John Hopkins, Dana Farber & Sloan. All 3 strongly suggested the ipi/nivo combo, which is what I went with, as mucosal patients have been among the responders in trials (albeit with a 10% less response rate than cutenous). Sloan also suggested adding in the Imatinib IF there was progression of disease, but he agreed the first line of defense was the ipi/nivo.

                                              From what I read, it's my understanding the Imatinib (Gleevac) is just a bridge, buys time, but is not durable? (I may be mistaken). Have you gone back to your second opinion contacts with the progression of disease stage, and since the FDA approval of the new immunotherapy protocol? 

                                              Re: naturopathic – when I was first diagnosed I had an onslaught of friends and relatives sending me all kinds of naturopathic and holistic products, recommendations, etc. I had a crash course in proper diet, exercise, meditation practices, and more, with loved ones sending me links by email and books/products by mail like a series of life rafts being thrown at me in rapid succession.

                                              I made significant lifestyle changes at first, but have since relaxed back into a mix of old and new habits, believing that if my time is limited, just let me have my fruit biscottis 🙂 My oncologist personally believes that stress is far more of a concern than diet and exercise, and the best thing I could do for my immune system is to "just chill."

                                              {{{{HUGS}}}} to you and your wife as you make these important decisions.

                                               

                                              Maria C
                                              Participant

                                                John, I was diagnosed with mucosal melanoma last June, and did my rounds of 2nd opinions last summer to John Hopkins, Dana Farber & Sloan. All 3 strongly suggested the ipi/nivo combo, which is what I went with, as mucosal patients have been among the responders in trials (albeit with a 10% less response rate than cutenous). Sloan also suggested adding in the Imatinib IF there was progression of disease, but he agreed the first line of defense was the ipi/nivo.

                                                From what I read, it's my understanding the Imatinib (Gleevac) is just a bridge, buys time, but is not durable? (I may be mistaken). Have you gone back to your second opinion contacts with the progression of disease stage, and since the FDA approval of the new immunotherapy protocol? 

                                                Re: naturopathic – when I was first diagnosed I had an onslaught of friends and relatives sending me all kinds of naturopathic and holistic products, recommendations, etc. I had a crash course in proper diet, exercise, meditation practices, and more, with loved ones sending me links by email and books/products by mail like a series of life rafts being thrown at me in rapid succession.

                                                I made significant lifestyle changes at first, but have since relaxed back into a mix of old and new habits, believing that if my time is limited, just let me have my fruit biscottis 🙂 My oncologist personally believes that stress is far more of a concern than diet and exercise, and the best thing I could do for my immune system is to "just chill."

                                                {{{{HUGS}}}} to you and your wife as you make these important decisions.

                                                 

                                                JohnA
                                                Participant

                                                  Maria, 

                                                  Thanks for sharing your experiences – perhaps we should go back to our second opinions.  As of this week, we should have 3 of the 6 with their responses.  So far it's 1 for imatinib first and 1 for Ipi/Nivo first.

                                                  I will do some more reading on Gleevac and see what the durability is.  I don;t even think they know the durability of Ipi/Nivo yet, among MM, do they?

                                                  Thanks again!

                                                  John

                                                  JohnA
                                                  Participant

                                                    Maria, 

                                                    Thanks for sharing your experiences – perhaps we should go back to our second opinions.  As of this week, we should have 3 of the 6 with their responses.  So far it's 1 for imatinib first and 1 for Ipi/Nivo first.

                                                    I will do some more reading on Gleevac and see what the durability is.  I don;t even think they know the durability of Ipi/Nivo yet, among MM, do they?

                                                    Thanks again!

                                                    John

                                                    JohnA
                                                    Participant

                                                      Maria, 

                                                      Thanks for sharing your experiences – perhaps we should go back to our second opinions.  As of this week, we should have 3 of the 6 with their responses.  So far it's 1 for imatinib first and 1 for Ipi/Nivo first.

                                                      I will do some more reading on Gleevac and see what the durability is.  I don;t even think they know the durability of Ipi/Nivo yet, among MM, do they?

                                                      Thanks again!

                                                      John

                                                      Maria C
                                                      Participant

                                                        John, all I've been told is that the ipi/nivo combo trials included MM participants and they were among the responders, but at a 10% lower rate (so 45% of the MM participants responded to the 55% of the cutenous, or something along those lines). When I inquired about Gleevac because I was c-kit positive, I was told it was an "old school" drug but still a possibility IF the combo didn't work. My onc favors immunotherapy over any other treatment out there currently.

                                                        I'm not sure anyone is studying MM exclusively regarding the ipi/nivo combo, but anecdotedly there's a patient with metastisized mucosal melanoma at our hospital who did the ipi/nivo combo with 2 years of nivo maintenance and is 5 years out now. I believe the melanoma came back again in her case and she went back on nivo and is responding again.

                                                        BTW, even if the side effects of the immunotherapy are a bit rough, it's my understanding they're still not as rough as chemo…although it varies from patient to patient and strong communication with the medical team IS KEY to managing the side effects.

                                                        Keep us posted on what your wife decides!!

                                                        Maria C
                                                        Participant

                                                          John, all I've been told is that the ipi/nivo combo trials included MM participants and they were among the responders, but at a 10% lower rate (so 45% of the MM participants responded to the 55% of the cutenous, or something along those lines). When I inquired about Gleevac because I was c-kit positive, I was told it was an "old school" drug but still a possibility IF the combo didn't work. My onc favors immunotherapy over any other treatment out there currently.

                                                          I'm not sure anyone is studying MM exclusively regarding the ipi/nivo combo, but anecdotedly there's a patient with metastisized mucosal melanoma at our hospital who did the ipi/nivo combo with 2 years of nivo maintenance and is 5 years out now. I believe the melanoma came back again in her case and she went back on nivo and is responding again.

                                                          BTW, even if the side effects of the immunotherapy are a bit rough, it's my understanding they're still not as rough as chemo…although it varies from patient to patient and strong communication with the medical team IS KEY to managing the side effects.

                                                          Keep us posted on what your wife decides!!

                                                          Maria C
                                                          Participant

                                                            John, all I've been told is that the ipi/nivo combo trials included MM participants and they were among the responders, but at a 10% lower rate (so 45% of the MM participants responded to the 55% of the cutenous, or something along those lines). When I inquired about Gleevac because I was c-kit positive, I was told it was an "old school" drug but still a possibility IF the combo didn't work. My onc favors immunotherapy over any other treatment out there currently.

                                                            I'm not sure anyone is studying MM exclusively regarding the ipi/nivo combo, but anecdotedly there's a patient with metastisized mucosal melanoma at our hospital who did the ipi/nivo combo with 2 years of nivo maintenance and is 5 years out now. I believe the melanoma came back again in her case and she went back on nivo and is responding again.

                                                            BTW, even if the side effects of the immunotherapy are a bit rough, it's my understanding they're still not as rough as chemo…although it varies from patient to patient and strong communication with the medical team IS KEY to managing the side effects.

                                                            Keep us posted on what your wife decides!!

                                                            JohnA
                                                            Participant

                                                              These are really helpful tips, thanks.

                                                              It's very good to hear the story of the long term survivor of Metastatic MM, we haven't heard any and some of the (pre-immunotherapy) studies I've read have reported there are no reports of long term survivors.

                                                              Also good to hear your percention of immunotherapy vs chemo.

                                                              Thanks, I'll keep you posted – she'll be deciding very soon.

                                                               

                                                               

                                                               

                                                               

                                                              JohnA
                                                              Participant

                                                                These are really helpful tips, thanks.

                                                                It's very good to hear the story of the long term survivor of Metastatic MM, we haven't heard any and some of the (pre-immunotherapy) studies I've read have reported there are no reports of long term survivors.

                                                                Also good to hear your percention of immunotherapy vs chemo.

                                                                Thanks, I'll keep you posted – she'll be deciding very soon.

                                                                 

                                                                 

                                                                 

                                                                 

                                                                JohnA
                                                                Participant

                                                                  These are really helpful tips, thanks.

                                                                  It's very good to hear the story of the long term survivor of Metastatic MM, we haven't heard any and some of the (pre-immunotherapy) studies I've read have reported there are no reports of long term survivors.

                                                                  Also good to hear your percention of immunotherapy vs chemo.

                                                                  Thanks, I'll keep you posted – she'll be deciding very soon.

                                                                   

                                                                   

                                                                   

                                                                   

                                                                  Maria C
                                                                  Participant

                                                                    John, here are 2 melanoma experts with research interests in mucosal melanoma, both in New York, if it's possible to visit for your wife's second opinions. I read those pre-immunotherapy studies of MM too – but have since learned that immunotherapy is a game-changer for some…

                                                                    https://www.mskcc.org/cancer-care/doctors/alexander-shoushtari

                                                                    and

                                                                    http://www.cumc.columbia.edu/hematology-oncology/about_us/richard_carvajal

                                                                     

                                                                     

                                                                    JohnA
                                                                    Participant

                                                                      Thanks Maria.  We met with Paul Chapman at MSKCC and tried to connect with Caravajal (we was at SK too) unsuccessfully but have read lots of his stuff.

                                                                      I have not seen any data on immunotherapy on Mucosal – do you have anything I should read? I keep hearing 45% responders (Ipi-Nivo) thrown out there, but don't know where that is coming from.

                                                                       

                                                                      Maria C
                                                                      Participant

                                                                        Good question. I will ask my oncologist next week on my next visit. If you find any research to confirm this stat beforehand, please share. Thanks!

                                                                        Maria C
                                                                        Participant

                                                                          Good question. I will ask my oncologist next week on my next visit. If you find any research to confirm this stat beforehand, please share. Thanks!

                                                                          Maria C
                                                                          Participant

                                                                            Good question. I will ask my oncologist next week on my next visit. If you find any research to confirm this stat beforehand, please share. Thanks!

                                                                            JohnA
                                                                            Participant

                                                                              Thanks Maria.  We met with Paul Chapman at MSKCC and tried to connect with Caravajal (we was at SK too) unsuccessfully but have read lots of his stuff.

                                                                              I have not seen any data on immunotherapy on Mucosal – do you have anything I should read? I keep hearing 45% responders (Ipi-Nivo) thrown out there, but don't know where that is coming from.

                                                                               

                                                                              JohnA
                                                                              Participant

                                                                                Thanks Maria.  We met with Paul Chapman at MSKCC and tried to connect with Caravajal (we was at SK too) unsuccessfully but have read lots of his stuff.

                                                                                I have not seen any data on immunotherapy on Mucosal – do you have anything I should read? I keep hearing 45% responders (Ipi-Nivo) thrown out there, but don't know where that is coming from.

                                                                                 

                                                                                Maria C
                                                                                Participant

                                                                                  John, here are 2 melanoma experts with research interests in mucosal melanoma, both in New York, if it's possible to visit for your wife's second opinions. I read those pre-immunotherapy studies of MM too – but have since learned that immunotherapy is a game-changer for some…

                                                                                  https://www.mskcc.org/cancer-care/doctors/alexander-shoushtari

                                                                                  and

                                                                                  http://www.cumc.columbia.edu/hematology-oncology/about_us/richard_carvajal

                                                                                   

                                                                                   

                                                                                  Maria C
                                                                                  Participant

                                                                                    John, here are 2 melanoma experts with research interests in mucosal melanoma, both in New York, if it's possible to visit for your wife's second opinions. I read those pre-immunotherapy studies of MM too – but have since learned that immunotherapy is a game-changer for some…

                                                                                    https://www.mskcc.org/cancer-care/doctors/alexander-shoushtari

                                                                                    and

                                                                                    http://www.cumc.columbia.edu/hematology-oncology/about_us/richard_carvajal

                                                                                     

                                                                                     

                                                                                    JohnA
                                                                                    Participant

                                                                                      Good question, yes lots of melanoma experts have seen her, we got 6 opinions before deciding on the adjuvant radiation + chemo regimen, and the docs were split: 2 said don't do it, 2 said do it, and 2 said they could go either way – before we decided on which specialist to see, we went to Dana Farber (Dr. Hodi), MD Anderson, Sloan Kettering, U of Michigan, and Cleveland Clinic.  

                                                                                      She's been under the care of Dr. Marc Ernstoff at the Cleveland Clinic (who is fantastic, by the way) as well as surgeon Fred Chang and oncologist Chris Lao at University of Michigan Melanoma clinic (also great to work with).  We will get Lao's recommendation this week but he's suggested the combo before knowing about her c-kit mutation.  A consult from USC Cancer center's tumor board unanimously recommended she consider Imatinib as a first line of defense, as I understand it, some small % of people have complete responses, and more have partial responses, and since it's much more convenient and fewer side effects, perhaps we should try that first before the combo. I think that's the logic. I have to read up on Imatinib, I don't have the data yet.  

                                                                                      Dr. Block is an integrative oncologist, and consulted with her on diet exercise and supplements – not the radiation+chemo treatment, since we were unable to find anyone at any of those major medical centers who would say anything more than "eat a heart-healthy diet" – and that was the most liberal response we got!  Although MD Anderson did recommend acupuncture during radiation.  I get it – those guys are in a tough spot – there just aren't good data on impact of diet, exercise, and spiritual work – which is why I'm reaching out here to see what you guys think.

                                                                                    ed williams
                                                                                    Participant

                                                                                      John, can I ask where your wife is being treated?   My other question was why is your oncologist suggesting Imatinib first instead of the Immunotherapy combination of ipi/nivo? Is your oncologist suggesting that the C-kit drug (Imatinib) would knock down the fast growing tumors then switch to the combination?  I know that muscosal melanoma is very challenging and I am not sure how well it responds to the Immunotherapy combination of Ipi/nivo. Is Dr.Block(above) a melanoma specialist? If not maybe a second opinion would be a good place to start!!!!   Wishing you and your wife the best!!!! Ed

                                                                                      Mat
                                                                                      Participant

                                                                                        John, I recall reading a patient blog within the past year where the patient was combining PD-1 (Keytruda) with Gleevac.  I don't recall the name of the blog, but I wonder whether you could push for this combo.  I don't believe that the patient was in a clinical trial.

                                                                                        Mat
                                                                                        Participant

                                                                                          John, I recall reading a patient blog within the past year where the patient was combining PD-1 (Keytruda) with Gleevac.  I don't recall the name of the blog, but I wonder whether you could push for this combo.  I don't believe that the patient was in a clinical trial.

                                                                                            JohnA
                                                                                            Participant

                                                                                              Thanks Mat, this is helpful.

                                                                                               

                                                                                              JohnA
                                                                                              Participant

                                                                                                Thanks Mat, this is helpful.

                                                                                                 

                                                                                                JohnA
                                                                                                Participant

                                                                                                  Thanks Mat, this is helpful.

                                                                                                   

                                                                                                Mat
                                                                                                Participant

                                                                                                  John, I recall reading a patient blog within the past year where the patient was combining PD-1 (Keytruda) with Gleevac.  I don't recall the name of the blog, but I wonder whether you could push for this combo.  I don't believe that the patient was in a clinical trial.

                                                                                                  jade1111
                                                                                                  Participant

                                                                                                    John

                                                                                                    My brother and I are currently looking for similar resources in terms of naturopathic/alternative care for my mom who is stage 4 diagnsoed recently. Tomorrow we are going to Pine Street Clinic in Marin County. I can let you know how that goes. They specialize in complementary care for cancer (though not sure about experience with melanoma). We are also interested in an herbalist called Jonathan Treasure. He is in Ashland Oregon and has done much research on CBD and cancer.. again not sure about experience with melanoma.. he does skype consults. We were also told about a naturopath in area as we have heard that Vivtamin C IVs and that sort of thing may be helpful for supporting immune system. Happy to share whatever we learn. Just found out about diagnosis a few months ago and will choose treatment approach soon.

                                                                                                    Wishng you and your wife all the best!

                                                                                                     

                                                                                                     

                                                                                                    jade1111
                                                                                                    Participant

                                                                                                      John

                                                                                                      My brother and I are currently looking for similar resources in terms of naturopathic/alternative care for my mom who is stage 4 diagnsoed recently. Tomorrow we are going to Pine Street Clinic in Marin County. I can let you know how that goes. They specialize in complementary care for cancer (though not sure about experience with melanoma). We are also interested in an herbalist called Jonathan Treasure. He is in Ashland Oregon and has done much research on CBD and cancer.. again not sure about experience with melanoma.. he does skype consults. We were also told about a naturopath in area as we have heard that Vivtamin C IVs and that sort of thing may be helpful for supporting immune system. Happy to share whatever we learn. Just found out about diagnosis a few months ago and will choose treatment approach soon.

                                                                                                      Wishng you and your wife all the best!

                                                                                                       

                                                                                                       

                                                                                                      jade1111
                                                                                                      Participant

                                                                                                        John

                                                                                                        My brother and I are currently looking for similar resources in terms of naturopathic/alternative care for my mom who is stage 4 diagnsoed recently. Tomorrow we are going to Pine Street Clinic in Marin County. I can let you know how that goes. They specialize in complementary care for cancer (though not sure about experience with melanoma). We are also interested in an herbalist called Jonathan Treasure. He is in Ashland Oregon and has done much research on CBD and cancer.. again not sure about experience with melanoma.. he does skype consults. We were also told about a naturopath in area as we have heard that Vivtamin C IVs and that sort of thing may be helpful for supporting immune system. Happy to share whatever we learn. Just found out about diagnosis a few months ago and will choose treatment approach soon.

                                                                                                        Wishng you and your wife all the best!

                                                                                                         

                                                                                                         

                                                                                                        DZnDef
                                                                                                        Participant

                                                                                                          Hi John,

                                                                                                          I'll try to answer your questions from my own personal experience.

                                                                                                          1) I would consider my own doctor to be a "master nutritionist".  See article below written in 2007 with many case studies.  One I believe was a 16-year survivor with mucosal melanoma (I am assuming it was mucosal as it started in the sinuses).  Also be aware that my doctor is featured on quackwatch.  So take that as you will.

                                                                                                          http://www.alternative-therapies.com/at/web_pdfs/gonzalez1.pdf

                                                                                                          2) I do not have personal experience on these drug options so I can't offer anything here.

                                                                                                          3) I did struggle with this.  In my view, with my own history of bad drug reactions (getting every side effect and none of the benefit) I figured it was likely the drugs availalbe at the time would not work for me.  So it became a choice of how to spend the remaining time of my life.  I first came to terms with the inevitability of my death (even if I beat the cancer).  I then decided to maximize quality of life over quantity and chose my doctor because he had a good history with cancer patients living long lives.  I figured if it didn't work for my cancer, at least the side effects would be good general health until the cancer took over.

                                                                                                          Best of luck to you and your wife.

                                                                                                          Maggie

                                                                                                          DZnDef
                                                                                                          Participant

                                                                                                            Hi John,

                                                                                                            I'll try to answer your questions from my own personal experience.

                                                                                                            1) I would consider my own doctor to be a "master nutritionist".  See article below written in 2007 with many case studies.  One I believe was a 16-year survivor with mucosal melanoma (I am assuming it was mucosal as it started in the sinuses).  Also be aware that my doctor is featured on quackwatch.  So take that as you will.

                                                                                                            http://www.alternative-therapies.com/at/web_pdfs/gonzalez1.pdf

                                                                                                            2) I do not have personal experience on these drug options so I can't offer anything here.

                                                                                                            3) I did struggle with this.  In my view, with my own history of bad drug reactions (getting every side effect and none of the benefit) I figured it was likely the drugs availalbe at the time would not work for me.  So it became a choice of how to spend the remaining time of my life.  I first came to terms with the inevitability of my death (even if I beat the cancer).  I then decided to maximize quality of life over quantity and chose my doctor because he had a good history with cancer patients living long lives.  I figured if it didn't work for my cancer, at least the side effects would be good general health until the cancer took over.

                                                                                                            Best of luck to you and your wife.

                                                                                                            Maggie

                                                                                                            DZnDef
                                                                                                            Participant

                                                                                                              Hi John,

                                                                                                              I'll try to answer your questions from my own personal experience.

                                                                                                              1) I would consider my own doctor to be a "master nutritionist".  See article below written in 2007 with many case studies.  One I believe was a 16-year survivor with mucosal melanoma (I am assuming it was mucosal as it started in the sinuses).  Also be aware that my doctor is featured on quackwatch.  So take that as you will.

                                                                                                              http://www.alternative-therapies.com/at/web_pdfs/gonzalez1.pdf

                                                                                                              2) I do not have personal experience on these drug options so I can't offer anything here.

                                                                                                              3) I did struggle with this.  In my view, with my own history of bad drug reactions (getting every side effect and none of the benefit) I figured it was likely the drugs availalbe at the time would not work for me.  So it became a choice of how to spend the remaining time of my life.  I first came to terms with the inevitability of my death (even if I beat the cancer).  I then decided to maximize quality of life over quantity and chose my doctor because he had a good history with cancer patients living long lives.  I figured if it didn't work for my cancer, at least the side effects would be good general health until the cancer took over.

                                                                                                              Best of luck to you and your wife.

                                                                                                              Maggie

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