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Boise Steve

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      Boise Steve
      Participant
        Congratulations! Mel came back into my life after 4.90 years in 2019 (I found out that I was on the “placebo” arm of a vaccine trial) :(. Following, enjoyed a surgery, went on Pembro (made it to my 6th infusion) and have been NED for going on 2 1/2 years! Next scans are in late March.
        Boise Steve
        Participant

          Hello there – I completed my 2 year trial in January of this year.  The only side effect was the same as you experienced, skin reactions.  

          I understand that there may be some data/news coming soon from this trial.  I am excited to think that there may be a new therapy for the stage 3 folks (like me).

          Boise Steve
          Participant

            3 1/2 years NED including a 2 year Polynoma trial.  

            Boise Steve
            Participant

              Hello Shawna,

              I was diagnosed in November 2014 as a 3a with only my sentinal impacted (all other 33 nodes from my eft armpit were clear).  At the time, my options were Interferon or to "watch and wait". Statistically, Interferon was just not as option that I was willing to consider and elected to "watch and wait".  

              After approximately 1 month my oncologist recommended that I participate in a new (at the time) clinical trial. The trial is vaccine based and named Seviprotimut-L by Polynoma.  I am completing the last injections this month and all has been relatively straightforward.  Very few side efects and wonderful care at Huntsman.

              I am not recommending this path, as I am not even certain I am on the active drug or placebo but it most definitely offered an option where I felt that I was able to take a more aggressive approach.

               

              Boise Steve
              Participant

                Hello Shawna,

                I was diagnosed in November 2014 as a 3a with only my sentinal impacted (all other 33 nodes from my eft armpit were clear).  At the time, my options were Interferon or to "watch and wait". Statistically, Interferon was just not as option that I was willing to consider and elected to "watch and wait".  

                After approximately 1 month my oncologist recommended that I participate in a new (at the time) clinical trial. The trial is vaccine based and named Seviprotimut-L by Polynoma.  I am completing the last injections this month and all has been relatively straightforward.  Very few side efects and wonderful care at Huntsman.

                I am not recommending this path, as I am not even certain I am on the active drug or placebo but it most definitely offered an option where I felt that I was able to take a more aggressive approach.

                 

                Boise Steve
                Participant

                  Hello Shawna,

                  I was diagnosed in November 2014 as a 3a with only my sentinal impacted (all other 33 nodes from my eft armpit were clear).  At the time, my options were Interferon or to "watch and wait". Statistically, Interferon was just not as option that I was willing to consider and elected to "watch and wait".  

                  After approximately 1 month my oncologist recommended that I participate in a new (at the time) clinical trial. The trial is vaccine based and named Seviprotimut-L by Polynoma.  I am completing the last injections this month and all has been relatively straightforward.  Very few side efects and wonderful care at Huntsman.

                  I am not recommending this path, as I am not even certain I am on the active drug or placebo but it most definitely offered an option where I felt that I was able to take a more aggressive approach.

                   

                  Boise Steve
                  Participant

                    Hello Lisa,

                    I am not sure, but may be one of the few on this site that is enrolled in the Polynoma (seviprotimut-L) Vaccine trial. 

                    I was diagnosed in September 2014, stage 3a with only my sentinal positive for Melanoma.  At the time my options were to begin Interferon or "watch and wait".  My oncologist in Boise recommended this particular trial as it was new and entering a phase 3b stage.  Note, I understood that "vaccine's" were not in vogue and this was truly a leap of faith, but my staging of "3x" offered very little in the form of trials or new treatment.

                    The trial is a 50/50 vs Placebo and my opinion was that anything was better than a Interferon strategy and I really wanted to take some form of action.  

                    Fast forward to today, I have encounterred very little side effects outside of some injection swelling and my stomach lymph nodes were enlarged initially (hint that I may have actually received the active drug/vaccine as it will cause this response).

                    I want to be very careful to not portray my situation as anything more than another data point as I have very little exposure to the trial outside of my location.  However, by definition a phase 3b trial suggests some historical postive data as the costs are generally prohibitive to continue down a path without some level of assurance. Additionally, I know that the trial has been granted an accelerated status with the FDA and that new participants are on hold awaiting some data compilation from the other study sites – not trying to infer anything in my last statement, but my site has witnessed some positive results.  

                    I am very pleased with my decision as I am now at 2 years with clean scans.  My last injection for the study is scheduled for January 2017 and at that time my active trial will come to a close.  I will have continuing scans every 6 months and am happy to keep you updated as the process continues.

                    Boise Steve
                    Participant

                      Hello Lisa,

                      I am not sure, but may be one of the few on this site that is enrolled in the Polynoma (seviprotimut-L) Vaccine trial. 

                      I was diagnosed in September 2014, stage 3a with only my sentinal positive for Melanoma.  At the time my options were to begin Interferon or "watch and wait".  My oncologist in Boise recommended this particular trial as it was new and entering a phase 3b stage.  Note, I understood that "vaccine's" were not in vogue and this was truly a leap of faith, but my staging of "3x" offered very little in the form of trials or new treatment.

                      The trial is a 50/50 vs Placebo and my opinion was that anything was better than a Interferon strategy and I really wanted to take some form of action.  

                      Fast forward to today, I have encounterred very little side effects outside of some injection swelling and my stomach lymph nodes were enlarged initially (hint that I may have actually received the active drug/vaccine as it will cause this response).

                      I want to be very careful to not portray my situation as anything more than another data point as I have very little exposure to the trial outside of my location.  However, by definition a phase 3b trial suggests some historical postive data as the costs are generally prohibitive to continue down a path without some level of assurance. Additionally, I know that the trial has been granted an accelerated status with the FDA and that new participants are on hold awaiting some data compilation from the other study sites – not trying to infer anything in my last statement, but my site has witnessed some positive results.  

                      I am very pleased with my decision as I am now at 2 years with clean scans.  My last injection for the study is scheduled for January 2017 and at that time my active trial will come to a close.  I will have continuing scans every 6 months and am happy to keep you updated as the process continues.

                      Boise Steve
                      Participant

                        Hello Lisa,

                        I am not sure, but may be one of the few on this site that is enrolled in the Polynoma (seviprotimut-L) Vaccine trial. 

                        I was diagnosed in September 2014, stage 3a with only my sentinal positive for Melanoma.  At the time my options were to begin Interferon or "watch and wait".  My oncologist in Boise recommended this particular trial as it was new and entering a phase 3b stage.  Note, I understood that "vaccine's" were not in vogue and this was truly a leap of faith, but my staging of "3x" offered very little in the form of trials or new treatment.

                        The trial is a 50/50 vs Placebo and my opinion was that anything was better than a Interferon strategy and I really wanted to take some form of action.  

                        Fast forward to today, I have encounterred very little side effects outside of some injection swelling and my stomach lymph nodes were enlarged initially (hint that I may have actually received the active drug/vaccine as it will cause this response).

                        I want to be very careful to not portray my situation as anything more than another data point as I have very little exposure to the trial outside of my location.  However, by definition a phase 3b trial suggests some historical postive data as the costs are generally prohibitive to continue down a path without some level of assurance. Additionally, I know that the trial has been granted an accelerated status with the FDA and that new participants are on hold awaiting some data compilation from the other study sites – not trying to infer anything in my last statement, but my site has witnessed some positive results.  

                        I am very pleased with my decision as I am now at 2 years with clean scans.  My last injection for the study is scheduled for January 2017 and at that time my active trial will come to a close.  I will have continuing scans every 6 months and am happy to keep you updated as the process continues.

                        Boise Steve
                        Participant

                          Hello Terisaly,

                           

                          I have been on the Polynoma (Seviprotimut-L 40mcg) double blind clinical trial at Huntsman.  Very limited side effects and my understanding (albeit very, very subjective) is that the study is experiencing some positive results for us Stage 3 folks.

                          Our thoughts and prayers are with you! 

                          Boise Steve
                          Participant

                            Hello Terisaly,

                             

                            I have been on the Polynoma (Seviprotimut-L 40mcg) double blind clinical trial at Huntsman.  Very limited side effects and my understanding (albeit very, very subjective) is that the study is experiencing some positive results for us Stage 3 folks.

                            Our thoughts and prayers are with you! 

                            Boise Steve
                            Participant

                              Hello Terisaly,

                               

                              I have been on the Polynoma (Seviprotimut-L 40mcg) double blind clinical trial at Huntsman.  Very limited side effects and my understanding (albeit very, very subjective) is that the study is experiencing some positive results for us Stage 3 folks.

                              Our thoughts and prayers are with you! 

                              Boise Steve
                              Participant

                                Hello Neil,

                                I am participating in the Polynoma trial.  I was diagnosed 3A in November 2014 – back lesion, > 0.4mm deep, 1 positive/capsulated SLN and all the others were negative.  At the time of my diagnosis the other options were to watch/actively monitor or to start on Interferon.  I decided to watch/actively monitor and look for clinical trial options.  

                                In ~January 2015, Polynoma initiated a Phase 3B trial.  Phase 3A completed enrollment in 2013 and was setup as a way to optimize the vaccine dose vs Placebo.  Thus in the 3B trial the optimized dosing (40mg) was already understood and the only 2 trial variants were Placebo (33%) vs Vaccine-seviprotimut-L (67%). 

                                With the above in mind, I would like to share both my personal experience and what I believe may be the greater positive.

                                My experience (Huntsman Cancer Center) has been quite positive.  The Center has many on-going trails and there are always several other people to converse and share stories.  I have experienced minimal side effects and at this time am not certain if I am on the placebo or active drug.  However I am seeing an increasing red "circle" at the injection sites and am aware that this was a documented side effect in the prior trials.  At the beginning of the trial the 4 sub-q injections were given each month but the periodicity increases over time and I am now at a 4/year rate.  Candidly, the burden and side effects are so minimal it is qute easy to put aside the fact that I am living with Melanoma during the periods between my treatments.

                                I hope the above helps you with your decision and know that our prayers are always with you.

                                Lastly, I wanted to share that I truly believe that this vaccine is proving successful.  The subjective data that I receive during my treatment visits suggests that the seviprotimut-L vaccine is showing success in mitigating reoccurence for those patients in similiar staging as myself.  The vaccine is not a cure, but I believe is showing a decreased rate of reoccurence in those patients on the active drug.  I think that this will be validated in 2016 as Polynoma has requested an early review of their trial data by the FDA.

                                I may very well simply be sharing my wishful thinking but wanted to pass along my experience.  I am now 16 months NED and enjoying life every day.

                                 

                                 

                                Boise Steve
                                Participant

                                  Hello Neil,

                                  I am participating in the Polynoma trial.  I was diagnosed 3A in November 2014 – back lesion, > 0.4mm deep, 1 positive/capsulated SLN and all the others were negative.  At the time of my diagnosis the other options were to watch/actively monitor or to start on Interferon.  I decided to watch/actively monitor and look for clinical trial options.  

                                  In ~January 2015, Polynoma initiated a Phase 3B trial.  Phase 3A completed enrollment in 2013 and was setup as a way to optimize the vaccine dose vs Placebo.  Thus in the 3B trial the optimized dosing (40mg) was already understood and the only 2 trial variants were Placebo (33%) vs Vaccine-seviprotimut-L (67%). 

                                  With the above in mind, I would like to share both my personal experience and what I believe may be the greater positive.

                                  My experience (Huntsman Cancer Center) has been quite positive.  The Center has many on-going trails and there are always several other people to converse and share stories.  I have experienced minimal side effects and at this time am not certain if I am on the placebo or active drug.  However I am seeing an increasing red "circle" at the injection sites and am aware that this was a documented side effect in the prior trials.  At the beginning of the trial the 4 sub-q injections were given each month but the periodicity increases over time and I am now at a 4/year rate.  Candidly, the burden and side effects are so minimal it is qute easy to put aside the fact that I am living with Melanoma during the periods between my treatments.

                                  I hope the above helps you with your decision and know that our prayers are always with you.

                                  Lastly, I wanted to share that I truly believe that this vaccine is proving successful.  The subjective data that I receive during my treatment visits suggests that the seviprotimut-L vaccine is showing success in mitigating reoccurence for those patients in similiar staging as myself.  The vaccine is not a cure, but I believe is showing a decreased rate of reoccurence in those patients on the active drug.  I think that this will be validated in 2016 as Polynoma has requested an early review of their trial data by the FDA.

                                  I may very well simply be sharing my wishful thinking but wanted to pass along my experience.  I am now 16 months NED and enjoying life every day.

                                   

                                   

                                  Boise Steve
                                  Participant

                                    Hello Neil,

                                    I am participating in the Polynoma trial.  I was diagnosed 3A in November 2014 – back lesion, > 0.4mm deep, 1 positive/capsulated SLN and all the others were negative.  At the time of my diagnosis the other options were to watch/actively monitor or to start on Interferon.  I decided to watch/actively monitor and look for clinical trial options.  

                                    In ~January 2015, Polynoma initiated a Phase 3B trial.  Phase 3A completed enrollment in 2013 and was setup as a way to optimize the vaccine dose vs Placebo.  Thus in the 3B trial the optimized dosing (40mg) was already understood and the only 2 trial variants were Placebo (33%) vs Vaccine-seviprotimut-L (67%). 

                                    With the above in mind, I would like to share both my personal experience and what I believe may be the greater positive.

                                    My experience (Huntsman Cancer Center) has been quite positive.  The Center has many on-going trails and there are always several other people to converse and share stories.  I have experienced minimal side effects and at this time am not certain if I am on the placebo or active drug.  However I am seeing an increasing red "circle" at the injection sites and am aware that this was a documented side effect in the prior trials.  At the beginning of the trial the 4 sub-q injections were given each month but the periodicity increases over time and I am now at a 4/year rate.  Candidly, the burden and side effects are so minimal it is qute easy to put aside the fact that I am living with Melanoma during the periods between my treatments.

                                    I hope the above helps you with your decision and know that our prayers are always with you.

                                    Lastly, I wanted to share that I truly believe that this vaccine is proving successful.  The subjective data that I receive during my treatment visits suggests that the seviprotimut-L vaccine is showing success in mitigating reoccurence for those patients in similiar staging as myself.  The vaccine is not a cure, but I believe is showing a decreased rate of reoccurence in those patients on the active drug.  I think that this will be validated in 2016 as Polynoma has requested an early review of their trial data by the FDA.

                                    I may very well simply be sharing my wishful thinking but wanted to pass along my experience.  I am now 16 months NED and enjoying life every day.

                                     

                                     

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