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Help with Second opinion

Forums General Melanoma Community Help with Second opinion

  • Post
    davidstewart
    Participant

      Hi everyone!

      I'm new to the forum. Really glad this resource is available. I caught a stage 4 melanoma diagnosis this Monday. We met with Dr. Stergios Moscos today at UNC Chapel Hill–very nice, informed melanoma specialist. He suggested a treatment plan but was supportive of our desire to get a second opinion.He offered six suggestions. I'd be grateful for any input that could help us decide about which choice to make for deciding about how to proceed.

      Dr. Stephen Hodie at Dana Farber

      Dr. Keith Flaherty at Mass General

      Dr. Jedd Wolchok at Sloan Kettering

      Dr. Jeffery Weber at Moffit

      Dr. John Kirkwood (his mentor) at Pitt

      Dr. Suzanne Topalian at Johns Hopkins.

      We had been advised to seek out clinical trials as that is state of the art but Dr. Moscos took the view that some of the conventional treatments should be tried first.

      Anybody out there have suggestions?

       

      Thanks,

      David Stewart

       

       

       

    Viewing 17 reply threads
    • Replies
        jpg
        Participant

          I would go for the first four.  I was told that Topolian at Hopkins didn't see patients, she just does research. You cant go wrong with a team approach such as at Sloan Kettering or Mass General..  Look at their research and then decide.

            pookerpb
            Participant

              My husband has been a patient of Dr. Kirkwood in Pitt for years. We have been going to him since 2008 when his primary was treated. Are are now in trial #3 with him since he was diagnosed stage IV 18 mos ago. He and his research coordinators and PA's are wll wonderful!.

              pookerpb
              Participant

                My husband has been a patient of Dr. Kirkwood in Pitt for years. We have been going to him since 2008 when his primary was treated. Are are now in trial #3 with him since he was diagnosed stage IV 18 mos ago. He and his research coordinators and PA's are wll wonderful!.

                pookerpb
                Participant

                  My husband has been a patient of Dr. Kirkwood in Pitt for years. We have been going to him since 2008 when his primary was treated. Are are now in trial #3 with him since he was diagnosed stage IV 18 mos ago. He and his research coordinators and PA's are wll wonderful!.

                jpg
                Participant

                  I would go for the first four.  I was told that Topolian at Hopkins didn't see patients, she just does research. You cant go wrong with a team approach such as at Sloan Kettering or Mass General..  Look at their research and then decide.

                  jpg
                  Participant

                    I would go for the first four.  I was told that Topolian at Hopkins didn't see patients, she just does research. You cant go wrong with a team approach such as at Sloan Kettering or Mass General..  Look at their research and then decide.

                    mary1233
                    Participant

                      David – I am a patient at Sloan Kettering with a physician who reports to Dr. Wolchok. What I have learned is that treatment decisions at these major cancer centers are made by committee. Also the oncology community at these major cancer centers meet and confer with each other. I asked my doctor at Sloan what I should do if the cancer came back and the second opinion was different. He said he would then speak to that physician and between the two of them would come up with something I could be comfortable with.

                      The main advantages to going to a major cancer center are the ancilary services. Instead of getting a radiation report, you have their radiologists looking at the scans. Instead of getting a biopsy report, the biopsy is done there – and if they have to go back and look at it again, they have the actual material to look at. When you have something complicated, you want every advantage you can get. You want the best doctor but you also want the best people baking him up.

                      When I was diagnosed, I was seeing a well reputed women's cancer specialist who admitted that he had only seen this twice in his career and did not feel qualified to treat it. He sent me to Sloan because he said I needed to be at a facility thay was cutting edge. 

                      I agree that the first four options are the best for your situation. All of the doctors mentioned have strong reputations. They also have experts and researchers baking them up.

                      Wishing you all the best.

                      Mary

                      mary1233
                      Participant

                        David – I am a patient at Sloan Kettering with a physician who reports to Dr. Wolchok. What I have learned is that treatment decisions at these major cancer centers are made by committee. Also the oncology community at these major cancer centers meet and confer with each other. I asked my doctor at Sloan what I should do if the cancer came back and the second opinion was different. He said he would then speak to that physician and between the two of them would come up with something I could be comfortable with.

                        The main advantages to going to a major cancer center are the ancilary services. Instead of getting a radiation report, you have their radiologists looking at the scans. Instead of getting a biopsy report, the biopsy is done there – and if they have to go back and look at it again, they have the actual material to look at. When you have something complicated, you want every advantage you can get. You want the best doctor but you also want the best people baking him up.

                        When I was diagnosed, I was seeing a well reputed women's cancer specialist who admitted that he had only seen this twice in his career and did not feel qualified to treat it. He sent me to Sloan because he said I needed to be at a facility thay was cutting edge. 

                        I agree that the first four options are the best for your situation. All of the doctors mentioned have strong reputations. They also have experts and researchers baking them up.

                        Wishing you all the best.

                        Mary

                        mary1233
                        Participant

                          David – I am a patient at Sloan Kettering with a physician who reports to Dr. Wolchok. What I have learned is that treatment decisions at these major cancer centers are made by committee. Also the oncology community at these major cancer centers meet and confer with each other. I asked my doctor at Sloan what I should do if the cancer came back and the second opinion was different. He said he would then speak to that physician and between the two of them would come up with something I could be comfortable with.

                          The main advantages to going to a major cancer center are the ancilary services. Instead of getting a radiation report, you have their radiologists looking at the scans. Instead of getting a biopsy report, the biopsy is done there – and if they have to go back and look at it again, they have the actual material to look at. When you have something complicated, you want every advantage you can get. You want the best doctor but you also want the best people baking him up.

                          When I was diagnosed, I was seeing a well reputed women's cancer specialist who admitted that he had only seen this twice in his career and did not feel qualified to treat it. He sent me to Sloan because he said I needed to be at a facility thay was cutting edge. 

                          I agree that the first four options are the best for your situation. All of the doctors mentioned have strong reputations. They also have experts and researchers baking them up.

                          Wishing you all the best.

                          Mary

                          Linny
                          Participant

                            As was mentioned, Dr. Topalian no longer sees patients and is more involved in research. They've done a lot of research at Hopkins on PD1 and PDL-1 drugs for treating melanoma and she is the one heading up that research. At Hopkins you would see either William Sharfmann or Evan Lipson. Both are excellent. As a matter of fact, you won't go wrong with any of the names and places on the list.

                             

                             

                              JenSam
                              Participant
                                Hi, I’m stage 3b and see Dr. Lipson at Hopkins, he is fantastic! He is thorough and informative.
                                tschmith
                                Participant

                                  I agree!  Dr. Lipson is excellent!!!!

                                  Terrie

                                  tschmith
                                  Participant

                                    I agree!  Dr. Lipson is excellent!!!!

                                    Terrie

                                    tschmith
                                    Participant

                                      I agree!  Dr. Lipson is excellent!!!!

                                      Terrie

                                      JenSam
                                      Participant
                                        Hi, I’m stage 3b and see Dr. Lipson at Hopkins, he is fantastic! He is thorough and informative.
                                        JenSam
                                        Participant
                                          Hi, I’m stage 3b and see Dr. Lipson at Hopkins, he is fantastic! He is thorough and informative.
                                        Linny
                                        Participant

                                          As was mentioned, Dr. Topalian no longer sees patients and is more involved in research. They've done a lot of research at Hopkins on PD1 and PDL-1 drugs for treating melanoma and she is the one heading up that research. At Hopkins you would see either William Sharfmann or Evan Lipson. Both are excellent. As a matter of fact, you won't go wrong with any of the names and places on the list.

                                           

                                           

                                          Linny
                                          Participant

                                            As was mentioned, Dr. Topalian no longer sees patients and is more involved in research. They've done a lot of research at Hopkins on PD1 and PDL-1 drugs for treating melanoma and she is the one heading up that research. At Hopkins you would see either William Sharfmann or Evan Lipson. Both are excellent. As a matter of fact, you won't go wrong with any of the names and places on the list.

                                             

                                             

                                            arthurjedi007
                                            Participant

                                              The first 4 I recognize as top melanoma docs in the USA. I would see any of them or you could go to md Anderson in Houston. Not a specific doc I know of but another place to choose from.

                                              If it was me I would start with a trial rather than standard treatment. Granted the response rate for pd1 monotherapy is decent with yervoy not as good. Granted the braf standard treatment response rates are good but results are usually short. So I would go for an immunotherapy trial combing pd1 with something else in my opinion. Of course those top docs probably have something better than that.

                                              Also by doing standard stuff it can exclude you from certain trials. So if it was me to do over I would go with one of the top docs and see what they say.

                                              Artie

                                              arthurjedi007
                                              Participant

                                                The first 4 I recognize as top melanoma docs in the USA. I would see any of them or you could go to md Anderson in Houston. Not a specific doc I know of but another place to choose from.

                                                If it was me I would start with a trial rather than standard treatment. Granted the response rate for pd1 monotherapy is decent with yervoy not as good. Granted the braf standard treatment response rates are good but results are usually short. So I would go for an immunotherapy trial combing pd1 with something else in my opinion. Of course those top docs probably have something better than that.

                                                Also by doing standard stuff it can exclude you from certain trials. So if it was me to do over I would go with one of the top docs and see what they say.

                                                Artie

                                                arthurjedi007
                                                Participant

                                                  The first 4 I recognize as top melanoma docs in the USA. I would see any of them or you could go to md Anderson in Houston. Not a specific doc I know of but another place to choose from.

                                                  If it was me I would start with a trial rather than standard treatment. Granted the response rate for pd1 monotherapy is decent with yervoy not as good. Granted the braf standard treatment response rates are good but results are usually short. So I would go for an immunotherapy trial combing pd1 with something else in my opinion. Of course those top docs probably have something better than that.

                                                  Also by doing standard stuff it can exclude you from certain trials. So if it was me to do over I would go with one of the top docs and see what they say.

                                                  Artie

                                                  mrsaxde
                                                  Participant

                                                    I've been seeing Dr. Sharfman at Hopkins for consults. I'm not familiar with the other doctors who have been mentioned from there, but I like him.

                                                    mrsaxde
                                                    Participant

                                                      I've been seeing Dr. Sharfman at Hopkins for consults. I'm not familiar with the other doctors who have been mentioned from there, but I like him.

                                                      mrsaxde
                                                      Participant

                                                        I've been seeing Dr. Sharfman at Hopkins for consults. I'm not familiar with the other doctors who have been mentioned from there, but I like him.

                                                        davidstewart
                                                        Participant

                                                          Thanks for all the thoughtful responses!

                                                          We are now looking at MD Anderson as we have relatives in Houston and Austin. Anyone have good experiences with melanoma docs there?

                                                          davidstewart
                                                          Participant

                                                            Thanks for all the thoughtful responses!

                                                            We are now looking at MD Anderson as we have relatives in Houston and Austin. Anyone have good experiences with melanoma docs there?

                                                              ed williams
                                                              Participant

                                                                David if you go back to aug 31 post by Artie, you will find he is asking the same question about MD Anderson, and there are many replies. Wishing you the best!!! Ed

                                                                ed williams
                                                                Participant

                                                                  David if you go back to aug 31 post by Artie, you will find he is asking the same question about MD Anderson, and there are many replies. Wishing you the best!!! Ed

                                                                  ed williams
                                                                  Participant

                                                                    Hi David there is also a YouTube video titled " Immunotherapy: Unleashing immune system to attack Cancer". It is a webinar(Podcast) featuring two of the leading melanoma specials in the country who both work at M.D. Anderson. Dr. Jim Allison and Dr. Pam Sharma answer questions and discuss Melanoma research and treatments available at M.D. Anderson. Hope this is of some help! Ed

                                                                    ed williams
                                                                    Participant

                                                                      Hi David there is also a YouTube video titled " Immunotherapy: Unleashing immune system to attack Cancer". It is a webinar(Podcast) featuring two of the leading melanoma specials in the country who both work at M.D. Anderson. Dr. Jim Allison and Dr. Pam Sharma answer questions and discuss Melanoma research and treatments available at M.D. Anderson. Hope this is of some help! Ed

                                                                      davidstewart
                                                                      Participant

                                                                        Ed–

                                                                         

                                                                        Thank you! Very good pointers and I appreciate you taking the time.

                                                                         

                                                                        David

                                                                        davidstewart
                                                                        Participant

                                                                          Ed–

                                                                           

                                                                          Thank you! Very good pointers and I appreciate you taking the time.

                                                                           

                                                                          David

                                                                          davidstewart
                                                                          Participant

                                                                            Ed–

                                                                             

                                                                            Thank you! Very good pointers and I appreciate you taking the time.

                                                                             

                                                                            David

                                                                            ed williams
                                                                            Participant

                                                                              Hi David there is also a YouTube video titled " Immunotherapy: Unleashing immune system to attack Cancer". It is a webinar(Podcast) featuring two of the leading melanoma specials in the country who both work at M.D. Anderson. Dr. Jim Allison and Dr. Pam Sharma answer questions and discuss Melanoma research and treatments available at M.D. Anderson. Hope this is of some help! Ed

                                                                              ed williams
                                                                              Participant

                                                                                David if you go back to aug 31 post by Artie, you will find he is asking the same question about MD Anderson, and there are many replies. Wishing you the best!!! Ed

                                                                              davidstewart
                                                                              Participant

                                                                                Thanks for all the thoughtful responses!

                                                                                We are now looking at MD Anderson as we have relatives in Houston and Austin. Anyone have good experiences with melanoma docs there?

                                                                            Viewing 17 reply threads
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