Study on melanoma spread in sentinel lymph nodes and survival

Forums General Melanoma Community Study on melanoma spread in sentinel lymph nodes and survival

  • Post
Viewing 14 reply threads
  • Replies
      Bubbles
      Participant

        Yes, many of us have seen it…lived it. 

        Here is a year by year break down:

        2014 (Study with 2,000 patients):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/lymph-node-removal-after-superficial.html

        2015 (special testing options):   http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/06/asco-2015-stage-iiia-melanoma-deciding.html

         

        see next message…MPIP spam blocker will not allow more than 2 links….(wisdom!!!  if only I were selling passports!!!) c

        Bubbles
        Participant

          Yes, many of us have seen it…lived it. 

          Here is a year by year break down:

          2014 (Study with 2,000 patients):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/lymph-node-removal-after-superficial.html

          2015 (special testing options):   http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/06/asco-2015-stage-iiia-melanoma-deciding.html

           

          see next message…MPIP spam blocker will not allow more than 2 links….(wisdom!!!  if only I were selling passports!!!) c

            Bubbles
            Participant

              and….2016  (almost 1,200 patients):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/08/sentinel-lymph-node-disection-important.html

              There is much more if you put "sentinel" in search bubble on blog.  c

              Bubbles
              Participant

                and….2016  (almost 1,200 patients):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/08/sentinel-lymph-node-disection-important.html

                There is much more if you put "sentinel" in search bubble on blog.  c

                SOLE
                Participant

                  Dear Les,

                  I knew you would chime in on this one.

                  The only part of this study I haven't been able to grasp yet is the part on patients at risk (when they analyze the deaths) I would very much want to know if I am one of them. That could lead me to choose different options… CLND? Just to make sure? I have a low node burden… Let me ask you this: if it were you with rare isolated cells, would you do the CLND? I know it's a tough one. 

                  Thank you for all you do and continue doing after all these years.

                  You surely have owned your rightful place here on this forum. 

                  Big hug!

                  SOLE
                  Participant

                    Dear Les,

                    I knew you would chime in on this one.

                    The only part of this study I haven't been able to grasp yet is the part on patients at risk (when they analyze the deaths) I would very much want to know if I am one of them. That could lead me to choose different options… CLND? Just to make sure? I have a low node burden… Let me ask you this: if it were you with rare isolated cells, would you do the CLND? I know it's a tough one. 

                    Thank you for all you do and continue doing after all these years.

                    You surely have owned your rightful place here on this forum. 

                    Big hug!

                    Bubbles
                    Participant

                      Hi Sole,

                      The short answer to your question is….I DID have a complete lymph node dissection….TWICE…with micro-mets in only one sentinel node on the first occasion.

                      The longer and possibly more important part to the answer is:  There were no addtional positive nodes within the roughly 30 additional nodes removed in both the CLNDs.  My first was done in 2003. The second in 2007.  Melanoma was a very different world then. There were NO valid treatment options should I progress. AND….I progressed to Stage IV in 2010 despite my surgeries.

                      While some of the older data (yes…it is older!) indicate there is a 10% overall survival improvement in folks who had a CLND. Now, as others have pointed out, OS is tricky to define because the studies are not good about explaining what, if anything, those folks did after having that CLND. Are they folks like me?  A person whose timeline could certainly have been counted in that group…but now has had 2 CLNDs AND 2 1/2 years of nivo? So, it all gets muddy quickly.

                      Most data, old and new, shows that a person with micro mets in the sentinel node, has only a 5-10% chance of ANY additional positive nodes if they were to have a CLND. Just as mine turned out….I had no additional positive nodes. Furthermore, while I was very lucky and have never had any problems with lymphedema…many have significant problems with that after a CLND. Many here on this forum deal with that issue daily. It is tough. They are incredible, do what they have to do, and go on with their lives, but it is nothing to just disregard!

                      The reality of your situation is that you would most likely have no have additional positive nodes found if you do go forward with a CLND. But…noone can tell you that for sure. The reality is that your are most likely never going to deal with melanoma again in your life….that's what the data shows. There is no reason to think that you would follow in my footsteps. Additionally, should you progress….with or without a CLND….you have treatment options! Good ones. Those were not something available to me when I had to make my decisions.

                      But here is the bottom line. If you feel you cannot let this go, move forward and live your life, without incessant worry over not having done it…do the CLND…and then more on. Decisions in melanoma are intensely personal. All I can advise anyone is….educate yourself, attain an evaluation by at least one (or more) melanoma specialist, then make what you think is the best decision for YOU…and never look back.

                      I wish you well.  Les

                      Bubbles
                      Participant

                        Hi Sole,

                        The short answer to your question is….I DID have a complete lymph node dissection….TWICE…with micro-mets in only one sentinel node on the first occasion.

                        The longer and possibly more important part to the answer is:  There were no addtional positive nodes within the roughly 30 additional nodes removed in both the CLNDs.  My first was done in 2003. The second in 2007.  Melanoma was a very different world then. There were NO valid treatment options should I progress. AND….I progressed to Stage IV in 2010 despite my surgeries.

                        While some of the older data (yes…it is older!) indicate there is a 10% overall survival improvement in folks who had a CLND. Now, as others have pointed out, OS is tricky to define because the studies are not good about explaining what, if anything, those folks did after having that CLND. Are they folks like me?  A person whose timeline could certainly have been counted in that group…but now has had 2 CLNDs AND 2 1/2 years of nivo? So, it all gets muddy quickly.

                        Most data, old and new, shows that a person with micro mets in the sentinel node, has only a 5-10% chance of ANY additional positive nodes if they were to have a CLND. Just as mine turned out….I had no additional positive nodes. Furthermore, while I was very lucky and have never had any problems with lymphedema…many have significant problems with that after a CLND. Many here on this forum deal with that issue daily. It is tough. They are incredible, do what they have to do, and go on with their lives, but it is nothing to just disregard!

                        The reality of your situation is that you would most likely have no have additional positive nodes found if you do go forward with a CLND. But…noone can tell you that for sure. The reality is that your are most likely never going to deal with melanoma again in your life….that's what the data shows. There is no reason to think that you would follow in my footsteps. Additionally, should you progress….with or without a CLND….you have treatment options! Good ones. Those were not something available to me when I had to make my decisions.

                        But here is the bottom line. If you feel you cannot let this go, move forward and live your life, without incessant worry over not having done it…do the CLND…and then more on. Decisions in melanoma are intensely personal. All I can advise anyone is….educate yourself, attain an evaluation by at least one (or more) melanoma specialist, then make what you think is the best decision for YOU…and never look back.

                        I wish you well.  Les

                        Bubbles
                        Participant

                          Hi Sole,

                          The short answer to your question is….I DID have a complete lymph node dissection….TWICE…with micro-mets in only one sentinel node on the first occasion.

                          The longer and possibly more important part to the answer is:  There were no addtional positive nodes within the roughly 30 additional nodes removed in both the CLNDs.  My first was done in 2003. The second in 2007.  Melanoma was a very different world then. There were NO valid treatment options should I progress. AND….I progressed to Stage IV in 2010 despite my surgeries.

                          While some of the older data (yes…it is older!) indicate there is a 10% overall survival improvement in folks who had a CLND. Now, as others have pointed out, OS is tricky to define because the studies are not good about explaining what, if anything, those folks did after having that CLND. Are they folks like me?  A person whose timeline could certainly have been counted in that group…but now has had 2 CLNDs AND 2 1/2 years of nivo? So, it all gets muddy quickly.

                          Most data, old and new, shows that a person with micro mets in the sentinel node, has only a 5-10% chance of ANY additional positive nodes if they were to have a CLND. Just as mine turned out….I had no additional positive nodes. Furthermore, while I was very lucky and have never had any problems with lymphedema…many have significant problems with that after a CLND. Many here on this forum deal with that issue daily. It is tough. They are incredible, do what they have to do, and go on with their lives, but it is nothing to just disregard!

                          The reality of your situation is that you would most likely have no have additional positive nodes found if you do go forward with a CLND. But…noone can tell you that for sure. The reality is that your are most likely never going to deal with melanoma again in your life….that's what the data shows. There is no reason to think that you would follow in my footsteps. Additionally, should you progress….with or without a CLND….you have treatment options! Good ones. Those were not something available to me when I had to make my decisions.

                          But here is the bottom line. If you feel you cannot let this go, move forward and live your life, without incessant worry over not having done it…do the CLND…and then more on. Decisions in melanoma are intensely personal. All I can advise anyone is….educate yourself, attain an evaluation by at least one (or more) melanoma specialist, then make what you think is the best decision for YOU…and never look back.

                          I wish you well.  Les

                          SOLE
                          Participant

                            Thanks a lot Celeste. I will keep your point of view in mind when I meet with my new oncologist (hopefully better than the one I currently suffer…)

                            SOLE
                            Participant

                              Thanks a lot Celeste. I will keep your point of view in mind when I meet with my new oncologist (hopefully better than the one I currently suffer…)

                              SOLE
                              Participant

                                Thanks a lot Celeste. I will keep your point of view in mind when I meet with my new oncologist (hopefully better than the one I currently suffer…)

                                SOLE
                                Participant

                                  Dear Les,

                                  I knew you would chime in on this one.

                                  The only part of this study I haven't been able to grasp yet is the part on patients at risk (when they analyze the deaths) I would very much want to know if I am one of them. That could lead me to choose different options… CLND? Just to make sure? I have a low node burden… Let me ask you this: if it were you with rare isolated cells, would you do the CLND? I know it's a tough one. 

                                  Thank you for all you do and continue doing after all these years.

                                  You surely have owned your rightful place here on this forum. 

                                  Big hug!

                                  Bubbles
                                  Participant

                                    and….2016  (almost 1,200 patients):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/08/sentinel-lymph-node-disection-important.html

                                    There is much more if you put "sentinel" in search bubble on blog.  c

                                  Bubbles
                                  Participant

                                    Yes, many of us have seen it…lived it. 

                                    Here is a year by year break down:

                                    2014 (Study with 2,000 patients):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/lymph-node-removal-after-superficial.html

                                    2015 (special testing options):   http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/06/asco-2015-stage-iiia-melanoma-deciding.html

                                     

                                    see next message…MPIP spam blocker will not allow more than 2 links….(wisdom!!!  if only I were selling passports!!!) c

                                    Kim K
                                    Participant

                                      There was another nice study looking for patterns of second metastasis.  Most of the time another organ or site was the location for another met, not necessarily where it was found last ex. lung to lung versus lung to bone or brain.  Was pretty even odds, thus scan everywhere for follow up.

                                      Dont forget that melanoma doesn't always spread via the lymphatics.  I read a research paper somewhere, but forgot, and it basically said there was a smaller percent of spread via the blood vessles, vascular spread. That is what happened to me.

                                      My SNB was negative even using PCR, yet I had a met to my lungs 6 years later.  My nodes have always been negative, even now.  At least I have all mine LOL!  Yep went straight from stage IIA to IV without stopping at stage III.

                                      At least now NED for 6.5 years…..

                                      KK

                                      Kim K
                                      Participant

                                        There was another nice study looking for patterns of second metastasis.  Most of the time another organ or site was the location for another met, not necessarily where it was found last ex. lung to lung versus lung to bone or brain.  Was pretty even odds, thus scan everywhere for follow up.

                                        Dont forget that melanoma doesn't always spread via the lymphatics.  I read a research paper somewhere, but forgot, and it basically said there was a smaller percent of spread via the blood vessles, vascular spread. That is what happened to me.

                                        My SNB was negative even using PCR, yet I had a met to my lungs 6 years later.  My nodes have always been negative, even now.  At least I have all mine LOL!  Yep went straight from stage IIA to IV without stopping at stage III.

                                        At least now NED for 6.5 years…..

                                        KK

                                          SOLE
                                          Participant

                                            Kim,

                                            I am well aware that it can spread through the blood system. About 15% is what I remember seeing.

                                            In the study I referenced, the stats are very different from what we all find being "advertised" by traditional cancer institute.

                                            Possible vascular infestation aside, if I take my particular case, because of my very low sentinel node tumor burden, I and despite my ulceration, I have better odds than what is being reported: about 70-75% instead of the 57% being reported just about everywhere for stage 3b.

                                            That makes a HUGE difference when you want to re-organize your life… Something my soon to be fired oncologist is not remotely open to look at. It is really difficult then to keep a positive look on life…

                                            On re-organizing life, I looked at your profile so often! What you have been through and talking to you today is a real blessing! I really admire you Kim! I just want to hug you and let you know that you and your story are very inspirational. Thank you for being here Kim!

                                            SOLE
                                            Participant

                                              Kim,

                                              I am well aware that it can spread through the blood system. About 15% is what I remember seeing.

                                              In the study I referenced, the stats are very different from what we all find being "advertised" by traditional cancer institute.

                                              Possible vascular infestation aside, if I take my particular case, because of my very low sentinel node tumor burden, I and despite my ulceration, I have better odds than what is being reported: about 70-75% instead of the 57% being reported just about everywhere for stage 3b.

                                              That makes a HUGE difference when you want to re-organize your life… Something my soon to be fired oncologist is not remotely open to look at. It is really difficult then to keep a positive look on life…

                                              On re-organizing life, I looked at your profile so often! What you have been through and talking to you today is a real blessing! I really admire you Kim! I just want to hug you and let you know that you and your story are very inspirational. Thank you for being here Kim!

                                              Janner
                                              Participant

                                                You do understand that all stats are out of date.  With 5 or 6 new treatments in the last 5 years, that's a game changer on statistics.  Just a reminder….

                                                Janner
                                                Participant

                                                  You do understand that all stats are out of date.  With 5 or 6 new treatments in the last 5 years, that's a game changer on statistics.  Just a reminder….

                                                  Bubbles
                                                  Participant

                                                    A valid admonishment, anon. But you might consider the point I made below. C

                                                    Bubbles
                                                    Participant

                                                      A valid admonishment, anon. But you might consider the point I made below. C

                                                      Bubbles
                                                      Participant

                                                        A valid admonishment, anon. But you might consider the point I made below. C

                                                        Janner
                                                        Participant

                                                          You do understand that all stats are out of date.  With 5 or 6 new treatments in the last 5 years, that's a game changer on statistics.  Just a reminder….

                                                          SOLE
                                                          Participant

                                                            Kim,

                                                            I am well aware that it can spread through the blood system. About 15% is what I remember seeing.

                                                            In the study I referenced, the stats are very different from what we all find being "advertised" by traditional cancer institute.

                                                            Possible vascular infestation aside, if I take my particular case, because of my very low sentinel node tumor burden, I and despite my ulceration, I have better odds than what is being reported: about 70-75% instead of the 57% being reported just about everywhere for stage 3b.

                                                            That makes a HUGE difference when you want to re-organize your life… Something my soon to be fired oncologist is not remotely open to look at. It is really difficult then to keep a positive look on life…

                                                            On re-organizing life, I looked at your profile so often! What you have been through and talking to you today is a real blessing! I really admire you Kim! I just want to hug you and let you know that you and your story are very inspirational. Thank you for being here Kim!

                                                          Kim K
                                                          Participant

                                                            There was another nice study looking for patterns of second metastasis.  Most of the time another organ or site was the location for another met, not necessarily where it was found last ex. lung to lung versus lung to bone or brain.  Was pretty even odds, thus scan everywhere for follow up.

                                                            Dont forget that melanoma doesn't always spread via the lymphatics.  I read a research paper somewhere, but forgot, and it basically said there was a smaller percent of spread via the blood vessles, vascular spread. That is what happened to me.

                                                            My SNB was negative even using PCR, yet I had a met to my lungs 6 years later.  My nodes have always been negative, even now.  At least I have all mine LOL!  Yep went straight from stage IIA to IV without stopping at stage III.

                                                            At least now NED for 6.5 years…..

                                                            KK

                                                            Johnjk04
                                                            Participant

                                                              Celeste aka Les aka Bubbles

                                                              I am in love with you. Thank you, thank you, thank you.

                                                              Johnjk04
                                                              Participant

                                                                Celeste aka Les aka Bubbles

                                                                I am in love with you. Thank you, thank you, thank you.

                                                                  Fen
                                                                  Participant

                                                                    Join the crowd.  So grateful for her input.

                                                                     

                                                                    Fen
                                                                    Participant

                                                                      Join the crowd.  So grateful for her input.

                                                                       

                                                                      Bubbles
                                                                      Participant

                                                                        Hey John and anon,

                                                                        Thanks for the shout out. John, you made me laugh out loud…not sure if you're appreciating the articles, my strange blog commentary, or irreverance in general! Anyhow, I really do appreciate the positive reinforcement. Love ya back! C, les, and B

                                                                        Bubbles
                                                                        Participant

                                                                          Hey John and anon,

                                                                          Thanks for the shout out. John, you made me laugh out loud…not sure if you're appreciating the articles, my strange blog commentary, or irreverance in general! Anyhow, I really do appreciate the positive reinforcement. Love ya back! C, les, and B

                                                                          Bubbles
                                                                          Participant

                                                                            Hey John and anon,

                                                                            Thanks for the shout out. John, you made me laugh out loud…not sure if you're appreciating the articles, my strange blog commentary, or irreverance in general! Anyhow, I really do appreciate the positive reinforcement. Love ya back! C, les, and B

                                                                            Fen
                                                                            Participant

                                                                              Join the crowd.  So grateful for her input.

                                                                               

                                                                            Johnjk04
                                                                            Participant

                                                                              Celeste aka Les aka Bubbles

                                                                              I am in love with you. Thank you, thank you, thank you.

                                                                              ed williams
                                                                              Participant

                                                                                Hi Sole, if you look at the data for this study, it is based on patients seen between 2000 and 2008. So when they quote chance of death bases on findings you should take into account that Ipi wasn't standard of care yet, Nivo or Pembro was not available, the combination of Ipi and Nivo was not available, the whole field of combination target therapy was not in play yet and all the new trials with Pd-L1, IDO, t-vec etc… etc..Now if the data was based from 2014 to 2015 the result would have been very different. Just my thoughts on the study. Best Wishes!!!Ed

                                                                                ed williams
                                                                                Participant

                                                                                  Hi Sole, if you look at the data for this study, it is based on patients seen between 2000 and 2008. So when they quote chance of death bases on findings you should take into account that Ipi wasn't standard of care yet, Nivo or Pembro was not available, the combination of Ipi and Nivo was not available, the whole field of combination target therapy was not in play yet and all the new trials with Pd-L1, IDO, t-vec etc… etc..Now if the data was based from 2014 to 2015 the result would have been very different. Just my thoughts on the study. Best Wishes!!!Ed

                                                                                    Bubbles
                                                                                    Participant

                                                                                      Ed is exactly right regarding checking reports carefully for who precisely was examined in the study and WHEN!  Studies that are only 2 years old can be light years behind in melanoma, given the advances that have been made in treatments just since 2011.  However, given how little adjuvant care is availabke for NED patients, especially for Stage III folks, discussions re sentinel node studies and progression remain important over a greater period of time than those dealing with treatment options for Stage IV/Stage III with active and/inoperable disease. 

                                                                                      Love you, Edster! C

                                                                                      Bubbles
                                                                                      Participant

                                                                                        Ed is exactly right regarding checking reports carefully for who precisely was examined in the study and WHEN!  Studies that are only 2 years old can be light years behind in melanoma, given the advances that have been made in treatments just since 2011.  However, given how little adjuvant care is availabke for NED patients, especially for Stage III folks, discussions re sentinel node studies and progression remain important over a greater period of time than those dealing with treatment options for Stage IV/Stage III with active and/inoperable disease. 

                                                                                        Love you, Edster! C

                                                                                        Bubbles
                                                                                        Participant

                                                                                          Ed is exactly right regarding checking reports carefully for who precisely was examined in the study and WHEN!  Studies that are only 2 years old can be light years behind in melanoma, given the advances that have been made in treatments just since 2011.  However, given how little adjuvant care is availabke for NED patients, especially for Stage III folks, discussions re sentinel node studies and progression remain important over a greater period of time than those dealing with treatment options for Stage IV/Stage III with active and/inoperable disease. 

                                                                                          Love you, Edster! C

                                                                                          SOLE
                                                                                          Participant

                                                                                            That is the very reason I brought this forth. The AJCC staging system has its limitations as expressed in that study.

                                                                                            I would like to see more accurate stats about OS and RFS for each stage. Does somebody have that somewhere?

                                                                                            SOLE
                                                                                            Participant

                                                                                              That is the very reason I brought this forth. The AJCC staging system has its limitations as expressed in that study.

                                                                                              I would like to see more accurate stats about OS and RFS for each stage. Does somebody have that somewhere?

                                                                                              Bubbles
                                                                                              Participant

                                                                                                Sole,

                                                                                                I fear you are never going to find the answers you are seeking. But, just sticking to the question of OS and RFS per stage…you are unlikely to find a perfect printout of each stage and prognosis that is up-to-date, adressing every caveat and treatment option.

                                                                                                This report is probably one of the most recent, published this year, tallying 3,554 melanoma patients from 2005 to 2012….and even it still has some of the problems discussed in this thread:  http://onlinelibrary.wiley.com/doi/10.1002/ijc.30407/abstract

                                                                                                At this point, to learn melanoma stats you have to look at individual studies.  The one I posted on my blog on October 14, 2016 – "Prolonged survival in Stage III melanoma treated with ipi as adjuvant" – is a good example.  You can find the data  you seek within studies if you read carefully and the comparison arm was matched to the control arm and it is clear that the control arm is given no additional treatment other than that which is clearly described. (Can only give you 2 links per post on this board, so you'll have to look back yourself if you want to see it.)

                                                                                                For instance, in the study I posted, you can see the numbers for Stage III patients who were treated with ipi as adjuvant vs those who were not. All had their initial melanoma removed at the start. Half got ipi, half got nothing else…and the outcome is reported.  And even here….what was the breakdown per Stage III a, b, or c? I don't know for sure.  It was most likely Stage IIIc patients. The full article may have that info or you can try to look at the study description at clinicaltrials.gov.

                                                                                                I think this is the study the article is discussing:   https://clinicaltrials.gov/ct2/show/NCT00636168?term=Phase+3+trial+with+ipilimumab+adjuvant+stage+III+melanoma&rank=1

                                                                                                So…given how melanoma land works these days, with new treatments available beyond trials just since 2011, and the necessary delay between treatment and data (which is much longer when looking at adjuvant treatment as there is no measureable disease handy for ready and rapid comparison) this is about the only way to determine hard cold numbers. However, many on this board, as well as melanoma specialists, are well versed in the current realities of melanoma and have much data available and a well tuned gestalt. 

                                                                                                Hope that helps with your search. C

                                                                                                Bubbles
                                                                                                Participant

                                                                                                  Sole,

                                                                                                  I fear you are never going to find the answers you are seeking. But, just sticking to the question of OS and RFS per stage…you are unlikely to find a perfect printout of each stage and prognosis that is up-to-date, adressing every caveat and treatment option.

                                                                                                  This report is probably one of the most recent, published this year, tallying 3,554 melanoma patients from 2005 to 2012….and even it still has some of the problems discussed in this thread:  http://onlinelibrary.wiley.com/doi/10.1002/ijc.30407/abstract

                                                                                                  At this point, to learn melanoma stats you have to look at individual studies.  The one I posted on my blog on October 14, 2016 – "Prolonged survival in Stage III melanoma treated with ipi as adjuvant" – is a good example.  You can find the data  you seek within studies if you read carefully and the comparison arm was matched to the control arm and it is clear that the control arm is given no additional treatment other than that which is clearly described. (Can only give you 2 links per post on this board, so you'll have to look back yourself if you want to see it.)

                                                                                                  For instance, in the study I posted, you can see the numbers for Stage III patients who were treated with ipi as adjuvant vs those who were not. All had their initial melanoma removed at the start. Half got ipi, half got nothing else…and the outcome is reported.  And even here….what was the breakdown per Stage III a, b, or c? I don't know for sure.  It was most likely Stage IIIc patients. The full article may have that info or you can try to look at the study description at clinicaltrials.gov.

                                                                                                  I think this is the study the article is discussing:   https://clinicaltrials.gov/ct2/show/NCT00636168?term=Phase+3+trial+with+ipilimumab+adjuvant+stage+III+melanoma&rank=1

                                                                                                  So…given how melanoma land works these days, with new treatments available beyond trials just since 2011, and the necessary delay between treatment and data (which is much longer when looking at adjuvant treatment as there is no measureable disease handy for ready and rapid comparison) this is about the only way to determine hard cold numbers. However, many on this board, as well as melanoma specialists, are well versed in the current realities of melanoma and have much data available and a well tuned gestalt. 

                                                                                                  Hope that helps with your search. C

                                                                                                  Bubbles
                                                                                                  Participant

                                                                                                    Sole,

                                                                                                    I fear you are never going to find the answers you are seeking. But, just sticking to the question of OS and RFS per stage…you are unlikely to find a perfect printout of each stage and prognosis that is up-to-date, adressing every caveat and treatment option.

                                                                                                    This report is probably one of the most recent, published this year, tallying 3,554 melanoma patients from 2005 to 2012….and even it still has some of the problems discussed in this thread:  http://onlinelibrary.wiley.com/doi/10.1002/ijc.30407/abstract

                                                                                                    At this point, to learn melanoma stats you have to look at individual studies.  The one I posted on my blog on October 14, 2016 – "Prolonged survival in Stage III melanoma treated with ipi as adjuvant" – is a good example.  You can find the data  you seek within studies if you read carefully and the comparison arm was matched to the control arm and it is clear that the control arm is given no additional treatment other than that which is clearly described. (Can only give you 2 links per post on this board, so you'll have to look back yourself if you want to see it.)

                                                                                                    For instance, in the study I posted, you can see the numbers for Stage III patients who were treated with ipi as adjuvant vs those who were not. All had their initial melanoma removed at the start. Half got ipi, half got nothing else…and the outcome is reported.  And even here….what was the breakdown per Stage III a, b, or c? I don't know for sure.  It was most likely Stage IIIc patients. The full article may have that info or you can try to look at the study description at clinicaltrials.gov.

                                                                                                    I think this is the study the article is discussing:   https://clinicaltrials.gov/ct2/show/NCT00636168?term=Phase+3+trial+with+ipilimumab+adjuvant+stage+III+melanoma&rank=1

                                                                                                    So…given how melanoma land works these days, with new treatments available beyond trials just since 2011, and the necessary delay between treatment and data (which is much longer when looking at adjuvant treatment as there is no measureable disease handy for ready and rapid comparison) this is about the only way to determine hard cold numbers. However, many on this board, as well as melanoma specialists, are well versed in the current realities of melanoma and have much data available and a well tuned gestalt. 

                                                                                                    Hope that helps with your search. C

                                                                                                    SOLE
                                                                                                    Participant

                                                                                                      That is the very reason I brought this forth. The AJCC staging system has its limitations as expressed in that study.

                                                                                                      I would like to see more accurate stats about OS and RFS for each stage. Does somebody have that somewhere?

                                                                                                    ed williams
                                                                                                    Participant

                                                                                                      Hi Sole, if you look at the data for this study, it is based on patients seen between 2000 and 2008. So when they quote chance of death bases on findings you should take into account that Ipi wasn't standard of care yet, Nivo or Pembro was not available, the combination of Ipi and Nivo was not available, the whole field of combination target therapy was not in play yet and all the new trials with Pd-L1, IDO, t-vec etc… etc..Now if the data was based from 2014 to 2015 the result would have been very different. Just my thoughts on the study. Best Wishes!!!Ed

                                                                                                      Kim K
                                                                                                      Participant

                                                                                                        Yay to us for being educated and really diving into how studies are conducted and what conclusions come out of them.  We keep our docs on thier toes.  Yup, I think our group has the most pressing questions being asked, it just takes an incredible lag time to get the answers.  I think the better docs appreciate our inquiring minds, it is the stuff that makes cutting edge research continue.  It is so nice now that mel is the rock star of cancers (step aside booby cancer – LOL), black is the new pink!  Only a few years ago, mel was the red headed stepchild and the whole outlook was so damned depressing.

                                                                                                        I will never forget the warriors who came before me, the ratties, the ones who didn't get to benefit from today's medicines, while being grateful for our fighters of today.  Keep the scientists toes to the fire.

                                                                                                        Keep on kicking mel's &*$&^@! Sole wink.

                                                                                                        Kim K
                                                                                                        Participant

                                                                                                          Yay to us for being educated and really diving into how studies are conducted and what conclusions come out of them.  We keep our docs on thier toes.  Yup, I think our group has the most pressing questions being asked, it just takes an incredible lag time to get the answers.  I think the better docs appreciate our inquiring minds, it is the stuff that makes cutting edge research continue.  It is so nice now that mel is the rock star of cancers (step aside booby cancer – LOL), black is the new pink!  Only a few years ago, mel was the red headed stepchild and the whole outlook was so damned depressing.

                                                                                                          I will never forget the warriors who came before me, the ratties, the ones who didn't get to benefit from today's medicines, while being grateful for our fighters of today.  Keep the scientists toes to the fire.

                                                                                                          Keep on kicking mel's &*$&^@! Sole wink.

                                                                                                            SOLE
                                                                                                            Participant

                                                                                                              If at least I could get an oncologist to discuss any of this with me… I tell you Kim, the ones here in Montreal that I've met, the last time looked at me like I was a walking dead… So inspiring…

                                                                                                              SOLE
                                                                                                              Participant

                                                                                                                If at least I could get an oncologist to discuss any of this with me… I tell you Kim, the ones here in Montreal that I've met, the last time looked at me like I was a walking dead… So inspiring…

                                                                                                                SOLE
                                                                                                                Participant

                                                                                                                  If at least I could get an oncologist to discuss any of this with me… I tell you Kim, the ones here in Montreal that I've met, the last time looked at me like I was a walking dead… So inspiring…

                                                                                                                Kim K
                                                                                                                Participant

                                                                                                                  Yay to us for being educated and really diving into how studies are conducted and what conclusions come out of them.  We keep our docs on thier toes.  Yup, I think our group has the most pressing questions being asked, it just takes an incredible lag time to get the answers.  I think the better docs appreciate our inquiring minds, it is the stuff that makes cutting edge research continue.  It is so nice now that mel is the rock star of cancers (step aside booby cancer – LOL), black is the new pink!  Only a few years ago, mel was the red headed stepchild and the whole outlook was so damned depressing.

                                                                                                                  I will never forget the warriors who came before me, the ratties, the ones who didn't get to benefit from today's medicines, while being grateful for our fighters of today.  Keep the scientists toes to the fire.

                                                                                                                  Keep on kicking mel's &*$&^@! Sole wink.

                                                                                                              Viewing 14 reply threads
                                                                                                              • You must be logged in to reply to this topic.
                                                                                                              About the MRF Patient Forum

                                                                                                              The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                                                                                              The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                                                                                              Popular Topics