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SLNB / Adjuvant Therapy survival benefit ???

Forums General Melanoma Community SLNB / Adjuvant Therapy survival benefit ???

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      Bubbles
      Participant

        Yes, Anon.  Adjuvant care for melanoma patients with no evidence of disease, no matter if you are talking about node biopsy, complete lymph node disection or treatment with current melanoma therapies, is very tricky.  It is easy to provide "treatment X" to a patient with measurable tumor burden, repeat scans looking to see what happened to their measurable tumor after the treatment and write that down.  When the person had nothing to measure at the start, seeing how "treatment X" affects them takes time.  Sometimes….if the patient is lucky….a very long time.  Humans, drug companies, docs – don't like waiting a long time.  But that's the deal.  The article you noted is an oped already a year old.  I think the most important line in the article is this one: 

        "The introduction of active drugs for metastatic disease (BRAF inhibitors and check-point blockers) provides hope that effective adjuvant therapies for SLN+ patients will be identified in the near future; however, until that time,…"

        Yep….exactly that.  And that time is getting ever closer.  My fellow ratties and I started our NED arm of a NIVO/vaccine trial in 2010.  But….you have to wait and see what happens to us.  Will we all progress in the end?  Will more of us FAIL to progress than our statistical histories would indicate???  (So far…YES!!!!  Many more of us are alive and well than the data shows we would otherwise would be!!!)  The same waiting game must be played for the Pembro, Ipi/nivo, and BRAFi trials and even surgical procedures that are also now ongoing for NED and/or Stage III patients. 

        There is a good deal of data showing that all of these treatments help Stage III/IV patients prevent disease progression in melanoma. Especially for surgery…as "cherry picking" (ie surgical removal of lesions as they crop up) for melanoma has been going on the longest and has worked for many. But….can anybody tell you for certain they will work for YOU? Or me?  Sadly, no.

        Another huge factor when providers treat ANYBODY for ANY disease is cost vs benefit.  I am not referring to monetary issues (though sometimes, unfortunately, that figures in as well).  I am talking about side effects of the process vs positive effects on the patient's disease.  All the things I've listed as treatments above come with risk and side effects.  Is that a risk worth taking if you are Stage III?  Maybe.  Maybe not.  Until very recently, that was a big reason why these adjuvant therapies were offered only to Stage IV patients.  However, researchers are feeling better about the good and valuable effect these treatments are having on Stage IV patients with disease and otherwise, so they are decided it is at least worth testing/offerering to Stage III patients.  But…that is the rub.  Side effects vs value.  Ribas and Weber discussed this specifically in regard to the ipi/nivo combo.  Whether you are a patient with measurable disease or not….this combo treatment has some of the best response rates going…but also has a good number of side effects likely.  Risk vs benefit.

        Here is a post that addresses a lot of this….including the results (now published) of my NED trial:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/ipi-vs-nivo-trial-as-adjuvant-for-stage.html

        But…no.  No one can tell me that because I did 2 1/2 years of NIVO and have had surgical removal as well as SRS to melanoma tumors I will remain melanoma free.  I cannot tell you what would be best for you.  However, for me….as someone who was 7 years out from their first melanoma primary, despite sentinel node biopsy, bilateral axillary lymphadenectomies (no lymphadema still, by the way) and STILL progressed to Stage IV with melanoma tumors in my lung, brain and tonsil….all in rapid succession in a 6 month period, I knew I had to do SOMETHING!  I had brain zapped, lung and tonsil lesions surgically removed.  Completed my nivo trial.  I have had no disease recur since 2010.  Will that hold?  Don't know.  Would I do EVERY bit again?  Yep…pretty sure what I did initially gave me the intial breaks in my disease….and the nivo has kept me here today.  I'll just have to see what happens to me tomorrow and deal with whatever that may be as best I can.

        Ratties are awesome.  May they show us all the way.  I wish you all my best.

          amelanomajourney
          Participant

            Well said.  This is such a tricky topic with no right answer at the moment!

             

            amelanomajourney
            Participant

              Well said.  This is such a tricky topic with no right answer at the moment!

               

              amelanomajourney
              Participant

                Well said.  This is such a tricky topic with no right answer at the moment!

                 

              Bubbles
              Participant

                Yes, Anon.  Adjuvant care for melanoma patients with no evidence of disease, no matter if you are talking about node biopsy, complete lymph node disection or treatment with current melanoma therapies, is very tricky.  It is easy to provide "treatment X" to a patient with measurable tumor burden, repeat scans looking to see what happened to their measurable tumor after the treatment and write that down.  When the person had nothing to measure at the start, seeing how "treatment X" affects them takes time.  Sometimes….if the patient is lucky….a very long time.  Humans, drug companies, docs – don't like waiting a long time.  But that's the deal.  The article you noted is an oped already a year old.  I think the most important line in the article is this one: 

                "The introduction of active drugs for metastatic disease (BRAF inhibitors and check-point blockers) provides hope that effective adjuvant therapies for SLN+ patients will be identified in the near future; however, until that time,…"

                Yep….exactly that.  And that time is getting ever closer.  My fellow ratties and I started our NED arm of a NIVO/vaccine trial in 2010.  But….you have to wait and see what happens to us.  Will we all progress in the end?  Will more of us FAIL to progress than our statistical histories would indicate???  (So far…YES!!!!  Many more of us are alive and well than the data shows we would otherwise would be!!!)  The same waiting game must be played for the Pembro, Ipi/nivo, and BRAFi trials and even surgical procedures that are also now ongoing for NED and/or Stage III patients. 

                There is a good deal of data showing that all of these treatments help Stage III/IV patients prevent disease progression in melanoma. Especially for surgery…as "cherry picking" (ie surgical removal of lesions as they crop up) for melanoma has been going on the longest and has worked for many. But….can anybody tell you for certain they will work for YOU? Or me?  Sadly, no.

                Another huge factor when providers treat ANYBODY for ANY disease is cost vs benefit.  I am not referring to monetary issues (though sometimes, unfortunately, that figures in as well).  I am talking about side effects of the process vs positive effects on the patient's disease.  All the things I've listed as treatments above come with risk and side effects.  Is that a risk worth taking if you are Stage III?  Maybe.  Maybe not.  Until very recently, that was a big reason why these adjuvant therapies were offered only to Stage IV patients.  However, researchers are feeling better about the good and valuable effect these treatments are having on Stage IV patients with disease and otherwise, so they are decided it is at least worth testing/offerering to Stage III patients.  But…that is the rub.  Side effects vs value.  Ribas and Weber discussed this specifically in regard to the ipi/nivo combo.  Whether you are a patient with measurable disease or not….this combo treatment has some of the best response rates going…but also has a good number of side effects likely.  Risk vs benefit.

                Here is a post that addresses a lot of this….including the results (now published) of my NED trial:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/ipi-vs-nivo-trial-as-adjuvant-for-stage.html

                But…no.  No one can tell me that because I did 2 1/2 years of NIVO and have had surgical removal as well as SRS to melanoma tumors I will remain melanoma free.  I cannot tell you what would be best for you.  However, for me….as someone who was 7 years out from their first melanoma primary, despite sentinel node biopsy, bilateral axillary lymphadenectomies (no lymphadema still, by the way) and STILL progressed to Stage IV with melanoma tumors in my lung, brain and tonsil….all in rapid succession in a 6 month period, I knew I had to do SOMETHING!  I had brain zapped, lung and tonsil lesions surgically removed.  Completed my nivo trial.  I have had no disease recur since 2010.  Will that hold?  Don't know.  Would I do EVERY bit again?  Yep…pretty sure what I did initially gave me the intial breaks in my disease….and the nivo has kept me here today.  I'll just have to see what happens to me tomorrow and deal with whatever that may be as best I can.

                Ratties are awesome.  May they show us all the way.  I wish you all my best.

                Bubbles
                Participant

                  Yes, Anon.  Adjuvant care for melanoma patients with no evidence of disease, no matter if you are talking about node biopsy, complete lymph node disection or treatment with current melanoma therapies, is very tricky.  It is easy to provide "treatment X" to a patient with measurable tumor burden, repeat scans looking to see what happened to their measurable tumor after the treatment and write that down.  When the person had nothing to measure at the start, seeing how "treatment X" affects them takes time.  Sometimes….if the patient is lucky….a very long time.  Humans, drug companies, docs – don't like waiting a long time.  But that's the deal.  The article you noted is an oped already a year old.  I think the most important line in the article is this one: 

                  "The introduction of active drugs for metastatic disease (BRAF inhibitors and check-point blockers) provides hope that effective adjuvant therapies for SLN+ patients will be identified in the near future; however, until that time,…"

                  Yep….exactly that.  And that time is getting ever closer.  My fellow ratties and I started our NED arm of a NIVO/vaccine trial in 2010.  But….you have to wait and see what happens to us.  Will we all progress in the end?  Will more of us FAIL to progress than our statistical histories would indicate???  (So far…YES!!!!  Many more of us are alive and well than the data shows we would otherwise would be!!!)  The same waiting game must be played for the Pembro, Ipi/nivo, and BRAFi trials and even surgical procedures that are also now ongoing for NED and/or Stage III patients. 

                  There is a good deal of data showing that all of these treatments help Stage III/IV patients prevent disease progression in melanoma. Especially for surgery…as "cherry picking" (ie surgical removal of lesions as they crop up) for melanoma has been going on the longest and has worked for many. But….can anybody tell you for certain they will work for YOU? Or me?  Sadly, no.

                  Another huge factor when providers treat ANYBODY for ANY disease is cost vs benefit.  I am not referring to monetary issues (though sometimes, unfortunately, that figures in as well).  I am talking about side effects of the process vs positive effects on the patient's disease.  All the things I've listed as treatments above come with risk and side effects.  Is that a risk worth taking if you are Stage III?  Maybe.  Maybe not.  Until very recently, that was a big reason why these adjuvant therapies were offered only to Stage IV patients.  However, researchers are feeling better about the good and valuable effect these treatments are having on Stage IV patients with disease and otherwise, so they are decided it is at least worth testing/offerering to Stage III patients.  But…that is the rub.  Side effects vs value.  Ribas and Weber discussed this specifically in regard to the ipi/nivo combo.  Whether you are a patient with measurable disease or not….this combo treatment has some of the best response rates going…but also has a good number of side effects likely.  Risk vs benefit.

                  Here is a post that addresses a lot of this….including the results (now published) of my NED trial:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/ipi-vs-nivo-trial-as-adjuvant-for-stage.html

                  But…no.  No one can tell me that because I did 2 1/2 years of NIVO and have had surgical removal as well as SRS to melanoma tumors I will remain melanoma free.  I cannot tell you what would be best for you.  However, for me….as someone who was 7 years out from their first melanoma primary, despite sentinel node biopsy, bilateral axillary lymphadenectomies (no lymphadema still, by the way) and STILL progressed to Stage IV with melanoma tumors in my lung, brain and tonsil….all in rapid succession in a 6 month period, I knew I had to do SOMETHING!  I had brain zapped, lung and tonsil lesions surgically removed.  Completed my nivo trial.  I have had no disease recur since 2010.  Will that hold?  Don't know.  Would I do EVERY bit again?  Yep…pretty sure what I did initially gave me the intial breaks in my disease….and the nivo has kept me here today.  I'll just have to see what happens to me tomorrow and deal with whatever that may be as best I can.

                  Ratties are awesome.  May they show us all the way.  I wish you all my best.

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