Treatment options – Looking for advice on making a decision
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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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      • February 3, 2017 at 8:09 pm
      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

      • February 3, 2017 at 8:09 pm
      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

      • February 3, 2017 at 8:09 pm
      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

        • February 4, 2017 at 4:05 am
        MikeW
        Participant

        Thanks for your perspective…I appreciate it. 

         

        • February 4, 2017 at 4:05 am
        MikeW
        Participant

        Thanks for your perspective…I appreciate it. 

         

        • February 4, 2017 at 4:05 am
        MikeW
        Participant

        Thanks for your perspective…I appreciate it. 

         

      • February 3, 2017 at 8:45 pm
      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…..

      • February 3, 2017 at 8:45 pm
      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…..

      • February 3, 2017 at 8:45 pm
      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…..

      • February 3, 2017 at 9:10 pm
      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.

      • February 3, 2017 at 9:10 pm
      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.

      • February 3, 2017 at 9:10 pm
      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.

        • February 4, 2017 at 2:55 pm
        MikeW
        Participant

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

        • February 4, 2017 at 2:55 pm
        MikeW
        Participant

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

        • February 4, 2017 at 2:55 pm
        MikeW
        Participant

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

      • February 3, 2017 at 11:16 pm
      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

      • February 3, 2017 at 11:16 pm
      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

      • February 3, 2017 at 11:16 pm
      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

      • February 3, 2017 at 11:19 pm
      ed williams
      Participant

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

      • February 3, 2017 at 11:19 pm
      ed williams
      Participant

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

      • February 3, 2017 at 11:19 pm
      ed williams
      Participant

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

      • February 3, 2017 at 11:52 pm
      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,

      • February 3, 2017 at 11:52 pm
      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,

      • February 3, 2017 at 11:52 pm
      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,

      • February 4, 2017 at 2:00 am
      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

        • February 4, 2017 at 3:01 pm
        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..

        • February 4, 2017 at 3:01 pm
        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..

        • February 4, 2017 at 3:01 pm
        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..

      • February 4, 2017 at 2:00 am
      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

      • February 4, 2017 at 2:00 am
      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

      • February 6, 2017 at 1:23 pm
      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.

        • February 6, 2017 at 4:06 pm
        MikeW
        Participant

        Thanks for the note hukill..

        • February 6, 2017 at 4:06 pm
        MikeW
        Participant

        Thanks for the note hukill..

        • February 6, 2017 at 4:06 pm
        MikeW
        Participant

        Thanks for the note hukill..

      • February 6, 2017 at 1:23 pm
      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.

      • February 6, 2017 at 1:23 pm
      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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