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Questions About Polynoma Vaccine Trial
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Questions About Polynoma Vaccine Trial

› Forums › General Melanoma Community › Questions About Polynoma Vaccine Trial

  • Post
    • July 14, 2016 at 10:56 pm
    youngann
    Participant

      I saw Dr. Mastrangelo at Jefferson today for my initial oncology consult. His bottom-line recommendation is that I enroll in a Polynoma Vaccine trial. However, the only thing he knew about it was that there were 3 arms – 2 arms receive the vaccine and one arm recieves a placebo. He said Polynoma has been used in treating melanoma for about 20 years but he said there was 'no credible data' on it.

      I'm not sure how he can recommend something that has 'no credible data' on it but he offered to have "someone who knew more about it" call me.

       

      Does anyone know anything about this?

       

    Viewing 5 reply threads
    • Replies
        • July 15, 2016 at 12:12 am
        youngann
        Participant

          Forgot to say that his second choice was Interferon and he said that he really wouldn't recomment Yervoy because of the side effects.

          • July 15, 2016 at 12:12 am
          youngann
          Participant

            Forgot to say that his second choice was Interferon and he said that he really wouldn't recomment Yervoy because of the side effects.

              • July 15, 2016 at 1:04 pm
              Janner
              Participant

                Dr. Mastrangelo is a melanoma specialist but there is a reality with stage III.  There are no good adjuvant treatment options.  Interferon – high side effects and limited efficacy.  Yervoy – high side effects (some potentially life threatening especially at the adjuvant dose of 10mg) and some efficacy.  That's it.  Everything else is a trial.  Do a search here, someone else has posted about the polynoma trial in the past.  Other docs can really only offer other trials – so do a search on clinicaltrials.gov and see if there are trials you are interested in.  Find out where they are located and get a second opinion at one of those sites.  Even melanoma specialists only have so much they can offer and if their site doesn't happen to be doing an adjuvant clinical trial, then you only have Interferon and Yervoy.

                • July 15, 2016 at 1:04 pm
                Janner
                Participant

                  Dr. Mastrangelo is a melanoma specialist but there is a reality with stage III.  There are no good adjuvant treatment options.  Interferon – high side effects and limited efficacy.  Yervoy – high side effects (some potentially life threatening especially at the adjuvant dose of 10mg) and some efficacy.  That's it.  Everything else is a trial.  Do a search here, someone else has posted about the polynoma trial in the past.  Other docs can really only offer other trials – so do a search on clinicaltrials.gov and see if there are trials you are interested in.  Find out where they are located and get a second opinion at one of those sites.  Even melanoma specialists only have so much they can offer and if their site doesn't happen to be doing an adjuvant clinical trial, then you only have Interferon and Yervoy.

                  • July 15, 2016 at 1:04 pm
                  Janner
                  Participant

                    Dr. Mastrangelo is a melanoma specialist but there is a reality with stage III.  There are no good adjuvant treatment options.  Interferon – high side effects and limited efficacy.  Yervoy – high side effects (some potentially life threatening especially at the adjuvant dose of 10mg) and some efficacy.  That's it.  Everything else is a trial.  Do a search here, someone else has posted about the polynoma trial in the past.  Other docs can really only offer other trials – so do a search on clinicaltrials.gov and see if there are trials you are interested in.  Find out where they are located and get a second opinion at one of those sites.  Even melanoma specialists only have so much they can offer and if their site doesn't happen to be doing an adjuvant clinical trial, then you only have Interferon and Yervoy.

                    • July 29, 2016 at 3:25 am
                    Vickisjewels
                    Participant

                      My husband also sees the same dr as you. He just had his tumors removed to be able to be in this trial. We just found out today that it was the two arm three arm trial. No one told us this and he is so upset. He has stage 4 and has had other treatments. We thought this would be our answer now we don't know what to expect. 

                      • July 29, 2016 at 3:25 am
                      Vickisjewels
                      Participant

                        My husband also sees the same dr as you. He just had his tumors removed to be able to be in this trial. We just found out today that it was the two arm three arm trial. No one told us this and he is so upset. He has stage 4 and has had other treatments. We thought this would be our answer now we don't know what to expect. 

                        • July 29, 2016 at 3:25 am
                        Vickisjewels
                        Participant

                          My husband also sees the same dr as you. He just had his tumors removed to be able to be in this trial. We just found out today that it was the two arm three arm trial. No one told us this and he is so upset. He has stage 4 and has had other treatments. We thought this would be our answer now we don't know what to expect. 

                        • July 15, 2016 at 12:12 am
                        youngann
                        Participant

                          Forgot to say that his second choice was Interferon and he said that he really wouldn't recomment Yervoy because of the side effects.

                          • July 15, 2016 at 5:38 am
                          Polymath
                          Participant

                            With all due respect to the good doctor, perhaps I can buy him a dart board for future diagnosis and treatment recommendations.  Your message is precisely why you must find a melanoma specialist, at a large, research-oriented institution.  His recommendations are such nonsense it made my head hurt reading it.  Do not hesitate to seek better expert opinion and there are those of us who travel hundreds, even thousands of miles get expert care.  You are worth it.

                            Gary

                              • July 15, 2016 at 12:04 pm
                              youngann
                              Participant

                                See, that's what has me confused. Dr. Mastrangleo IS a melanoma specialist at Thomas Jefferson University Hospital. I truly thought I was in the best hands and that's why his recommendation blew me away.

                                I know I'm going to have to start over so can anyone recommend another specialist in the Philly area?

                                • July 15, 2016 at 12:40 pm
                                mary1233
                                Participant

                                  Hello Youngann – If you look on this website under Mucosal Melanoma you will find a list of cancer centers recommended for the treatment of mucosal melanoma. It is an excellent list of the centers patients with all forms of melanoma should be considering. 

                                  Best wishes.

                                  • July 15, 2016 at 12:40 pm
                                  mary1233
                                  Participant

                                    Hello Youngann – If you look on this website under Mucosal Melanoma you will find a list of cancer centers recommended for the treatment of mucosal melanoma. It is an excellent list of the centers patients with all forms of melanoma should be considering. 

                                    Best wishes.

                                    • July 15, 2016 at 12:40 pm
                                    mary1233
                                    Participant

                                      Hello Youngann – If you look on this website under Mucosal Melanoma you will find a list of cancer centers recommended for the treatment of mucosal melanoma. It is an excellent list of the centers patients with all forms of melanoma should be considering. 

                                      Best wishes.

                                      • July 15, 2016 at 3:36 pm
                                      jenny22
                                      Participant

                                        UNIV of PENN, Lynn Schucter is a very well known MELANOMA SPECIALIST…..she is an IPI usuer…..i saw her several times for stage III adjuvant treament options….she wanted me to do IPI,. and thought she could get it approved at the lower dose of 3mg….

                                        I opted not to do it  after talking to SLOAN and NYU in NYC…..however she is very well respected and a true melanoma expert…

                                        And of course you are not far from NYC, where you could see sloan, and/or either Jeff Weber or Anna Pavlick at NYU…..

                                        Lots of options…..

                                        Get another opinion!!!!!

                                         

                                        • July 15, 2016 at 3:36 pm
                                        jenny22
                                        Participant

                                          UNIV of PENN, Lynn Schucter is a very well known MELANOMA SPECIALIST…..she is an IPI usuer…..i saw her several times for stage III adjuvant treament options….she wanted me to do IPI,. and thought she could get it approved at the lower dose of 3mg….

                                          I opted not to do it  after talking to SLOAN and NYU in NYC…..however she is very well respected and a true melanoma expert…

                                          And of course you are not far from NYC, where you could see sloan, and/or either Jeff Weber or Anna Pavlick at NYU…..

                                          Lots of options…..

                                          Get another opinion!!!!!

                                           

                                          • July 15, 2016 at 3:36 pm
                                          jenny22
                                          Participant

                                            UNIV of PENN, Lynn Schucter is a very well known MELANOMA SPECIALIST…..she is an IPI usuer…..i saw her several times for stage III adjuvant treament options….she wanted me to do IPI,. and thought she could get it approved at the lower dose of 3mg….

                                            I opted not to do it  after talking to SLOAN and NYU in NYC…..however she is very well respected and a true melanoma expert…

                                            And of course you are not far from NYC, where you could see sloan, and/or either Jeff Weber or Anna Pavlick at NYU…..

                                            Lots of options…..

                                            Get another opinion!!!!!

                                             

                                            • July 15, 2016 at 12:04 pm
                                            youngann
                                            Participant

                                              See, that's what has me confused. Dr. Mastrangleo IS a melanoma specialist at Thomas Jefferson University Hospital. I truly thought I was in the best hands and that's why his recommendation blew me away.

                                              I know I'm going to have to start over so can anyone recommend another specialist in the Philly area?

                                              • July 15, 2016 at 12:04 pm
                                              youngann
                                              Participant

                                                See, that's what has me confused. Dr. Mastrangleo IS a melanoma specialist at Thomas Jefferson University Hospital. I truly thought I was in the best hands and that's why his recommendation blew me away.

                                                I know I'm going to have to start over so can anyone recommend another specialist in the Philly area?

                                              • July 15, 2016 at 5:38 am
                                              Polymath
                                              Participant

                                                With all due respect to the good doctor, perhaps I can buy him a dart board for future diagnosis and treatment recommendations.  Your message is precisely why you must find a melanoma specialist, at a large, research-oriented institution.  His recommendations are such nonsense it made my head hurt reading it.  Do not hesitate to seek better expert opinion and there are those of us who travel hundreds, even thousands of miles get expert care.  You are worth it.

                                                Gary

                                                • July 15, 2016 at 5:38 am
                                                Polymath
                                                Participant

                                                  With all due respect to the good doctor, perhaps I can buy him a dart board for future diagnosis and treatment recommendations.  Your message is precisely why you must find a melanoma specialist, at a large, research-oriented institution.  His recommendations are such nonsense it made my head hurt reading it.  Do not hesitate to seek better expert opinion and there are those of us who travel hundreds, even thousands of miles get expert care.  You are worth it.

                                                  Gary

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