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Treatment options – Looking for advice on making a decision

Forums General Melanoma Community Treatment options – Looking for advice on making a decision

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      Bradley75
      Participant

        In my opinion, approach 1 is the best choice and it isn't even close.  I was faced with that decision two months ago.  I opted for the combo treatment after my research. The side effects got me and I was/am forced to stop treatment with those drugs.  Even though the side effects happened I would choose the combo again if I could.  Melanoma is a slippery and relentless beast.  I would hit it with the best option every time. 

        Also, based on your two options, it appears that a placebo is possible for you in the clinical trial.  That is a deal breaker for me.  I would hate to have progression with the mel because I was one of the unlucky ones to get a placebo.  I couldn't live with that.  Maybe it is just me or it is because I have progressed over the past couple years.

        Best of luck with your decision,

        Brad

        Bradley75
        Participant

          In my opinion, approach 1 is the best choice and it isn't even close.  I was faced with that decision two months ago.  I opted for the combo treatment after my research. The side effects got me and I was/am forced to stop treatment with those drugs.  Even though the side effects happened I would choose the combo again if I could.  Melanoma is a slippery and relentless beast.  I would hit it with the best option every time. 

          Also, based on your two options, it appears that a placebo is possible for you in the clinical trial.  That is a deal breaker for me.  I would hate to have progression with the mel because I was one of the unlucky ones to get a placebo.  I couldn't live with that.  Maybe it is just me or it is because I have progressed over the past couple years.

          Best of luck with your decision,

          Brad

            MikeW
            Participant

              Thanks for your perspective…I appreciate it. 

               

              MikeW
              Participant

                Thanks for your perspective…I appreciate it. 

                 

                MikeW
                Participant

                  Thanks for your perspective…I appreciate it. 

                   

                Bradley75
                Participant

                  In my opinion, approach 1 is the best choice and it isn't even close.  I was faced with that decision two months ago.  I opted for the combo treatment after my research. The side effects got me and I was/am forced to stop treatment with those drugs.  Even though the side effects happened I would choose the combo again if I could.  Melanoma is a slippery and relentless beast.  I would hit it with the best option every time. 

                  Also, based on your two options, it appears that a placebo is possible for you in the clinical trial.  That is a deal breaker for me.  I would hate to have progression with the mel because I was one of the unlucky ones to get a placebo.  I couldn't live with that.  Maybe it is just me or it is because I have progressed over the past couple years.

                  Best of luck with your decision,

                  Brad

                  Bubbles
                  Participant

                    Sorry you are having to evaluate these choices.  But…here are some articles that may help inform your decision:

                    Survival outcome of ipi/nivo trial:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/2-year-survival-outcomes-for-ipinivo.html

                    A nice breakdown of info on Pembrolizumab (Keytruda) outcomes out of ASCO last year by Dr Daud:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/09/dr-daud-reviews-asco-2016-immunology.html

                    I'll post one other nice general review below…..

                    Bubbles
                    Participant

                      Sorry you are having to evaluate these choices.  But…here are some articles that may help inform your decision:

                      Survival outcome of ipi/nivo trial:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/2-year-survival-outcomes-for-ipinivo.html

                      A nice breakdown of info on Pembrolizumab (Keytruda) outcomes out of ASCO last year by Dr Daud:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/09/dr-daud-reviews-asco-2016-immunology.html

                      I'll post one other nice general review below…..

                      Bubbles
                      Participant

                        Sorry you are having to evaluate these choices.  But…here are some articles that may help inform your decision:

                        Survival outcome of ipi/nivo trial:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/2-year-survival-outcomes-for-ipinivo.html

                        A nice breakdown of info on Pembrolizumab (Keytruda) outcomes out of ASCO last year by Dr Daud:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/09/dr-daud-reviews-asco-2016-immunology.html

                        I'll post one other nice general review below…..

                        BrianP
                        Participant

                          Another vote for the combo.  I think the 57% response rate you list for the combo is low.  If you are really doing risk vs. reward analysis I'd do a little more research into those figures to make sure you are comparing apples to apples.

                          BrianP
                          Participant

                            Another vote for the combo.  I think the 57% response rate you list for the combo is low.  If you are really doing risk vs. reward analysis I'd do a little more research into those figures to make sure you are comparing apples to apples.

                              MikeW
                              Participant

                                Good point. I think I need to check the dates on the reports/outcomes. It seems like results are getting better. 

                                MikeW
                                Participant

                                  Good point. I think I need to check the dates on the reports/outcomes. It seems like results are getting better. 

                                  MikeW
                                  Participant

                                    Good point. I think I need to check the dates on the reports/outcomes. It seems like results are getting better. 

                                  BrianP
                                  Participant

                                    Another vote for the combo.  I think the 57% response rate you list for the combo is low.  If you are really doing risk vs. reward analysis I'd do a little more research into those figures to make sure you are comparing apples to apples.

                                    ed williams
                                    Participant

                                      Hi M Wokosin, just to add a little bit to the conversation, read articles, watch videos on Melanoma, and ask question to as many doctors that you can before making a decision. Spend some time on Bubbles blog, full of great stuff and links to the most current data plus if you are into making dresses!!!! youtube has most of the current leaders in the field when they get together and do educational presentations. Onclive is always pretty good. Here is two videos to get you started from one of the leaders in the Melanoma world. The presentations are about one year apart and the contrast and advancements in treatment options between 2015 and 2016 is crazzy. The field of Immunoncology is exploding with new trials and combinations. Best Wishes!!!Ed https://www.youtube.com/watch?v=f15oPSvuK4o  https://www.youtube.com/watch?v=FtQJQhQE3dQ

                                      ed williams
                                      Participant

                                        Hi M Wokosin, just to add a little bit to the conversation, read articles, watch videos on Melanoma, and ask question to as many doctors that you can before making a decision. Spend some time on Bubbles blog, full of great stuff and links to the most current data plus if you are into making dresses!!!! youtube has most of the current leaders in the field when they get together and do educational presentations. Onclive is always pretty good. Here is two videos to get you started from one of the leaders in the Melanoma world. The presentations are about one year apart and the contrast and advancements in treatment options between 2015 and 2016 is crazzy. The field of Immunoncology is exploding with new trials and combinations. Best Wishes!!!Ed https://www.youtube.com/watch?v=f15oPSvuK4o  https://www.youtube.com/watch?v=FtQJQhQE3dQ

                                        ed williams
                                        Participant

                                          Hi M Wokosin, just to add a little bit to the conversation, read articles, watch videos on Melanoma, and ask question to as many doctors that you can before making a decision. Spend some time on Bubbles blog, full of great stuff and links to the most current data plus if you are into making dresses!!!! youtube has most of the current leaders in the field when they get together and do educational presentations. Onclive is always pretty good. Here is two videos to get you started from one of the leaders in the Melanoma world. The presentations are about one year apart and the contrast and advancements in treatment options between 2015 and 2016 is crazzy. The field of Immunoncology is exploding with new trials and combinations. Best Wishes!!!Ed https://www.youtube.com/watch?v=f15oPSvuK4o  https://www.youtube.com/watch?v=FtQJQhQE3dQ

                                          ed williams
                                          Participant

                                            I wanted this video to be the first one in the above post!!!! https://www.youtube.com/watch?v=10nUgi5R9UE

                                            ed williams
                                            Participant

                                              I wanted this video to be the first one in the above post!!!! https://www.youtube.com/watch?v=10nUgi5R9UE

                                              ed williams
                                              Participant

                                                I wanted this video to be the first one in the above post!!!! https://www.youtube.com/watch?v=10nUgi5R9UE

                                                jennunicorn
                                                Participant

                                                  I'll chime in and say I'm another on board with Ipi/Nivo combo. Longer post about why I chose it myself in the post below titled Mono vs Combo.

                                                  All the best,

                                                  jennunicorn
                                                  Participant

                                                    I'll chime in and say I'm another on board with Ipi/Nivo combo. Longer post about why I chose it myself in the post below titled Mono vs Combo.

                                                    All the best,

                                                    jennunicorn
                                                    Participant

                                                      I'll chime in and say I'm another on board with Ipi/Nivo combo. Longer post about why I chose it myself in the post below titled Mono vs Combo.

                                                      All the best,

                                                      Mamapegela
                                                      Participant

                                                        Hi-

                                                        We have similar situations.  I  have mets only to my lungs at this point.  I progressed to stage 4 in Nov. '16.    I started the ipi/nivo combo in December.  I only got through one dose before my onc nixed further doses due to toxicities (fried my thyroid and liver enzymes elevated).  I am now on just Nivo if I continue to tolerate it.  The good news is- I already have had more than 50% reduction in the size of my two remaining lung mets!  That was from only one dose of the combo becuase my last CT scan was before the first nivo dose.  

                                                        So I obviously am giving my endorsement to the ipi/nivo. I will miss my thyroid but I won't miss Mel!!   

                                                        Good luck, let us know what you decide.

                                                        Peggy

                                                        Mamapegela
                                                        Participant

                                                          Hi-

                                                          We have similar situations.  I  have mets only to my lungs at this point.  I progressed to stage 4 in Nov. '16.    I started the ipi/nivo combo in December.  I only got through one dose before my onc nixed further doses due to toxicities (fried my thyroid and liver enzymes elevated).  I am now on just Nivo if I continue to tolerate it.  The good news is- I already have had more than 50% reduction in the size of my two remaining lung mets!  That was from only one dose of the combo becuase my last CT scan was before the first nivo dose.  

                                                          So I obviously am giving my endorsement to the ipi/nivo. I will miss my thyroid but I won't miss Mel!!   

                                                          Good luck, let us know what you decide.

                                                          Peggy

                                                          Mamapegela
                                                          Participant

                                                            Hi-

                                                            We have similar situations.  I  have mets only to my lungs at this point.  I progressed to stage 4 in Nov. '16.    I started the ipi/nivo combo in December.  I only got through one dose before my onc nixed further doses due to toxicities (fried my thyroid and liver enzymes elevated).  I am now on just Nivo if I continue to tolerate it.  The good news is- I already have had more than 50% reduction in the size of my two remaining lung mets!  That was from only one dose of the combo becuase my last CT scan was before the first nivo dose.  

                                                            So I obviously am giving my endorsement to the ipi/nivo. I will miss my thyroid but I won't miss Mel!!   

                                                            Good luck, let us know what you decide.

                                                            Peggy

                                                              MikeW
                                                              Participant

                                                                Thanks for your feedback. I had read and one of the dr's said there can be results after just one treatment. I'll keep you posted..

                                                                MikeW
                                                                Participant

                                                                  Thanks for your feedback. I had read and one of the dr's said there can be results after just one treatment. I'll keep you posted..

                                                                  MikeW
                                                                  Participant

                                                                    Thanks for your feedback. I had read and one of the dr's said there can be results after just one treatment. I'll keep you posted..

                                                                  Hukill
                                                                  Participant

                                                                    The combo was my choice without thought, I even asked for it when I first met my dr before he gave me any options. After 5 combos and 6 nivo alone I can say I made the right choice for me.

                                                                      MikeW
                                                                      Participant

                                                                        Thanks for the note hukill..

                                                                        MikeW
                                                                        Participant

                                                                          Thanks for the note hukill..

                                                                          MikeW
                                                                          Participant

                                                                            Thanks for the note hukill..

                                                                          Hukill
                                                                          Participant

                                                                            The combo was my choice without thought, I even asked for it when I first met my dr before he gave me any options. After 5 combos and 6 nivo alone I can say I made the right choice for me.

                                                                            Hukill
                                                                            Participant

                                                                              The combo was my choice without thought, I even asked for it when I first met my dr before he gave me any options. After 5 combos and 6 nivo alone I can say I made the right choice for me.

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