Stage 3a – CLND, lymphedema, trials available???

Sorry, I should have been more clear.  When I was seeing if I was eligible for trails or not that was one of the big criteria barriers I came across time and time again.

Mine was resected totally because I had a CLND and my scans were clear.  This made me ineligible for many trials.

Non-resectable disease can be for a variety of reasons (difficult to access surgically is a big one) and may qualify you for more trials.  I think right now you're sitting with non-resectable disease because you haven't had a CLND – but I would clarify all of these definitions with your team!

A CLND does have some really annoying side effects.  But it was the best choice for me a year ago (a previous study had just came out that showed patients do better long term with it).  I write about it in my blog a bit if you want to learn more about my personal experience.  It is so hard because each of us makes a decision on a different day with new data and this ASCO trial has really shaken things up this year.

Wishing you the best with this decision and know that you can only make a decision with the data you have today and not what might happen in the future – do what feels right!

Sorry, I should have been more clear.  When I was seeing if I was eligible for trails or not that was one of the big criteria barriers I came across time and time again.

Mine was resected totally because I had a CLND and my scans were clear.  This made me ineligible for many trials.

Non-resectable disease can be for a variety of reasons (difficult to access surgically is a big one) and may qualify you for more trials.  I think right now you're sitting with non-resectable disease because you haven't had a CLND – but I would clarify all of these definitions with your team!

A CLND does have some really annoying side effects.  But it was the best choice for me a year ago (a previous study had just came out that showed patients do better long term with it).  I write about it in my blog a bit if you want to learn more about my personal experience.  It is so hard because each of us makes a decision on a different day with new data and this ASCO trial has really shaken things up this year.

Wishing you the best with this decision and know that you can only make a decision with the data you have today and not what might happen in the future – do what feels right!

Hi Amelanomajourney, just wanted to ask about the study that you talked about above that states that patients do better after having CLND.  My understanding from the last ASCO 2015 that a German study has come to a different conclusion, they didn't find any advantage in having a CLND vs follow up scans and ultra sound follow ups for patients with micrometatisis. There is also some pretty good reason to keep your lymph nodes in case you do advance to stage 4, since your nodes is where the Immunotherapy drugs have their effect on T-cells. Best Wishes Ed

Prior to February 2014, I totally would have declined a CLND.

I believe it was the MSLT they were pulling the data from in Feburary 2014.  http://www.nejm.org/doi/full/10.1056/NEJMoa1310460  Both my surgeon and Uptodate supported a complete lymphadenectomy at that time based on the evidence.

Today, I don't know if I would have made the same decision based on the ASCO data that has just come out.  It would depend if I had access to and confidence in ultrasound surveilence of lymph nodes in my area.

The pendulum of medical treatment.

Prior to February 2014, I totally would have declined a CLND.

I believe it was the MSLT they were pulling the data from in Feburary 2014.  http://www.nejm.org/doi/full/10.1056/NEJMoa1310460  Both my surgeon and Uptodate supported a complete lymphadenectomy at that time based on the evidence.

Today, I don't know if I would have made the same decision based on the ASCO data that has just come out.  It would depend if I had access to and confidence in ultrasound surveilence of lymph nodes in my area.

The pendulum of medical treatment.

Prior to February 2014, I totally would have declined a CLND.

I believe it was the MSLT they were pulling the data from in Feburary 2014.  http://www.nejm.org/doi/full/10.1056/NEJMoa1310460  Both my surgeon and Uptodate supported a complete lymphadenectomy at that time based on the evidence.

Today, I don't know if I would have made the same decision based on the ASCO data that has just come out.  It would depend if I had access to and confidence in ultrasound surveilence of lymph nodes in my area.

The pendulum of medical treatment.

Hi Amelanomajourney, just wanted to ask about the study that you talked about above that states that patients do better after having CLND.  My understanding from the last ASCO 2015 that a German study has come to a different conclusion, they didn't find any advantage in having a CLND vs follow up scans and ultra sound follow ups for patients with micrometatisis. There is also some pretty good reason to keep your lymph nodes in case you do advance to stage 4, since your nodes is where the Immunotherapy drugs have their effect on T-cells. Best Wishes Ed

Hi Amelanomajourney, just wanted to ask about the study that you talked about above that states that patients do better after having CLND.  My understanding from the last ASCO 2015 that a German study has come to a different conclusion, they didn't find any advantage in having a CLND vs follow up scans and ultra sound follow ups for patients with micrometatisis. There is also some pretty good reason to keep your lymph nodes in case you do advance to stage 4, since your nodes is where the Immunotherapy drugs have their effect on T-cells. Best Wishes Ed

Regarding CLND, " a previous study had just come out that showed patients do better long term with it". There was a press release soon after this study which headlined that the study was faulty – the data collected really demonstrates no change in survival. Why was this study biased? And now ASCO…

I daresay CLND will continue because it is still NCCN standard treatment and well, surgeons do surgery. Rather than demonstrating a treatment's effectiveness, NCCN simply gives license to do it. Your doctor may even say that a CLND is required before you can go to the next NCCN step which is chemo, interferon, radiation, and/or clinical trial. Although recent studies confirm no increase in survival for chemo, interferon, and radiation for melanoma, they are still being done simply because it is NCCN standard treatment. I hate to be cynical – but isn't a fortune being made?  There are posts where even Stage II patients are having CLND and interferon and I can't help but think that they are being willfully frightened into it by their doctors. And is any doctor going to admit that he has performed hundreds of useless surgeries and treatments? After all, they were within unquestionable NCCN guidelines.

CLND is effective staging. You can discover if your IIIa is really IIIb or IIIc. It will never go back to II.

This has been my limited experience and I am still learning.  The more I learn about standard treatment, the more I want to learn elsewhere, and I am getting a lot of flak for it.  May your journey lead you to wellness.  

Regarding CLND, " a previous study had just come out that showed patients do better long term with it". There was a press release soon after this study which headlined that the study was faulty – the data collected really demonstrates no change in survival. Why was this study biased? And now ASCO…

I daresay CLND will continue because it is still NCCN standard treatment and well, surgeons do surgery. Rather than demonstrating a treatment's effectiveness, NCCN simply gives license to do it. Your doctor may even say that a CLND is required before you can go to the next NCCN step which is chemo, interferon, radiation, and/or clinical trial. Although recent studies confirm no increase in survival for chemo, interferon, and radiation for melanoma, they are still being done simply because it is NCCN standard treatment. I hate to be cynical – but isn't a fortune being made?  There are posts where even Stage II patients are having CLND and interferon and I can't help but think that they are being willfully frightened into it by their doctors. And is any doctor going to admit that he has performed hundreds of useless surgeries and treatments? After all, they were within unquestionable NCCN guidelines.

CLND is effective staging. You can discover if your IIIa is really IIIb or IIIc. It will never go back to II.

This has been my limited experience and I am still learning.  The more I learn about standard treatment, the more I want to learn elsewhere, and I am getting a lot of flak for it.  May your journey lead you to wellness.  

Hi Tmelanio, sorry that you are feeling like you are getting a lot of flak here. I know you are new to the forum and if something I said has offended you, then I am sorry. I know that there are many problems in health care but when someone new comes on to the forum and starts putting down the system because it is all about profit and getting rich and then goes on to talk about how great the series " the truth about cancer" is which is all about selling books and making profit, it kind of makes you pause . The series wants you to buy this vitamin( b17) or use sodium bicarbonate to cure cancer or buy this series of video where you will learn the truth about Cancer.  Well the truth about cancer is," it  sucks", and I don't need  a certified public accountant( Ty Bollinger) to give me advice. My Rant is over!!!  Now you brought up a previous study about CLND that found better long term survival,  then you said they had a press release afterwards saying that the studies data was faulty, could you please give me some more facts about what study you are talking about please. The name of the study or author or country or when it was published anything would be helpful. I am really interested in the science of my disease and anything that can help give new members good information to help them make an informed decision. Wishing you the best!!!! Ed

Hi Tmelanio, sorry that you are feeling like you are getting a lot of flak here. I know you are new to the forum and if something I said has offended you, then I am sorry. I know that there are many problems in health care but when someone new comes on to the forum and starts putting down the system because it is all about profit and getting rich and then goes on to talk about how great the series " the truth about cancer" is which is all about selling books and making profit, it kind of makes you pause . The series wants you to buy this vitamin( b17) or use sodium bicarbonate to cure cancer or buy this series of video where you will learn the truth about Cancer.  Well the truth about cancer is," it  sucks", and I don't need  a certified public accountant( Ty Bollinger) to give me advice. My Rant is over!!!  Now you brought up a previous study about CLND that found better long term survival,  then you said they had a press release afterwards saying that the studies data was faulty, could you please give me some more facts about what study you are talking about please. The name of the study or author or country or when it was published anything would be helpful. I am really interested in the science of my disease and anything that can help give new members good information to help them make an informed decision. Wishing you the best!!!! Ed

Hi Tmelanio, sorry that you are feeling like you are getting a lot of flak here. I know you are new to the forum and if something I said has offended you, then I am sorry. I know that there are many problems in health care but when someone new comes on to the forum and starts putting down the system because it is all about profit and getting rich and then goes on to talk about how great the series " the truth about cancer" is which is all about selling books and making profit, it kind of makes you pause . The series wants you to buy this vitamin( b17) or use sodium bicarbonate to cure cancer or buy this series of video where you will learn the truth about Cancer.  Well the truth about cancer is," it  sucks", and I don't need  a certified public accountant( Ty Bollinger) to give me advice. My Rant is over!!!  Now you brought up a previous study about CLND that found better long term survival,  then you said they had a press release afterwards saying that the studies data was faulty, could you please give me some more facts about what study you are talking about please. The name of the study or author or country or when it was published anything would be helpful. I am really interested in the science of my disease and anything that can help give new members good information to help them make an informed decision. Wishing you the best!!!! Ed

No offense taken – thanks for the reply.  You and this forum have been immensely helpful.  It is unsettling for everyone when discussions deteriorate to ranting and name calling from both sides. For my part I feel I was relating my experience, not advocating it. Did I relate anything untrue?

My biggest shock aside from my Stage IIIb diagnosis were things I learned online, and especially having them confirmed from this forum – why do treatments not improve survival?  At Stage III why on earth is anyone getting CLND, chemo, interferon, and radiation when all clinical studies demonstrate no improvement in survival? Why are these treatments even being offered? My general oncologist demanded these treatments be done. I have scheduled an appointment with a melanoma specialist. Will he be any different?  I guess I will find out.  If clinical trial and observation/close surveillance are really the two only viable options, why not improve your health as much as you possibly can? What is wrong with researching other approaches and asking for feedback on it? It appears that  diet is largely ignored in traditional treatment when recommendations from outside sources (like this forum) or alternative venues can greatly ease side effects. 

I was gifted the complete series (otherwise $47) and have just finished watching all 11 hours. I would not have watched it had it not been gifted, especially given all the quackery accusations that pop up when you google it.  From the get-go I assumed it was quackery. All the doctors in the series are currently treating cancer and most are cancer surviviors themselves, and all claim higher survivor rates than standard treatment. They claim that their results are suppressed by the FDA and ignored by media and that pharma will never do a clinical study because there is no money in it. Some responses in this MPIP forum claim that some of these doctors are renown in standard treament. There was never a one cure-all and I was never asked to buy b17, nor was sodium bicarbonate ever advocated as a cure for cancer. It did present guests whose orchestrations of diet and lifestyle prevailed over cancer. Bottom line – I would recommend it with reservations. One of their claims – 86% of interviewed doctors treating cancer will not do the chemo they are giving if they had the same cancer. Does anybody know if this is true?

Off the top of my head, the study which proclaimed CLND survival benefit came out in 2014 and claimed a 44% improval in survival and was endorsed by the New England Journal of Medicine. For my doctor's misdiagnosis of IIIa, it stated the 5 year survival would improve from 65% to 71% – I have since learned that I am really IIIb. The subsequent contradictory news release was German – I imagine it could be the same German team who released their 20 year study in Chicago at ASCO. I spent a great deal of time trying to find the release and finally gave up. My computing skills leave a lot to be desired.

I hope my experience is helpful to the original post concerning CLND.  I know little about IIIa chances of getting into a trial.  My own inquiries yielded little and I will probably not pursue clinical trial for now, although I do qualify at IIIb. I have taken in a lot from some major obsessing.  I need to work on chilling out.  Best wishes!!!  Tony

Hi Tony, the German study was 9 years long because it took them a long time to get enough patients to agree to be randomized. If you type in ASCO 2015 then go to their link you can read the study. It is Abstract LBA9002 and was run by the University of Tuebingen Germany. They had 483 patients in the study and had great results. In the U.S.A. they are doing the MSLT-11 study which is do out in 2022 . The issue now seems to be about control of the local nodal basin and some Dr. at ASCO were saying that the German study was not powered to answer that question. I hope this helps you in regards to finding the current study on CLND and what it is saying about it. Now my question to you again is the study you claimed off the top of your head and the findings, this is where I have my concern! When you write on the forum and state % and facts please back them up with the proper source. I also hope that your next Oncologist is more helpful than your experience up to now. As far as the series " The truth about cancer" , I looked up several of the  people that Ty Bollinger was interviewing and they all of them seem to be in the book writing business. Have a nice weekend!!! Ed 

Hi Ed, the percentages and data quoted were from a link on the benefits of CLND forwarded to me in a previous post in another thread from bubbles. Off the top of my head, I quoted correctly. I admitted that I could not find the German press release debunking it, for which I asked in a previous thread if anyone could help me find it again.  I never had a problem finding Abstract LBA9002 which I read several times. I am sorry that I did not keep my threads straight, and do the back pedalling and repetitive typing. 

To quote you, "… because it took them a long time to get enough patients to agree to be randomized." Why are you presenting this conjecture as fact?

To quote you, "The issue now seems to be about control of the local nodal basin and some DR. at ASCO were saying that the German study was not empowered to answer that question."  Interesting paraphrasing – It is only an issue if control of the regional lymph node basin matters to survival. Patients with CLND experienced bettter disease control in the regional node basin, but that did not translate into enhanced survival outcomes.

You ask me to back up facts and %  with the proper source in this forum.  I will do my best. Could you please extend the same courtesy to me. You leveled accusations against a series you obviously have never seen, and you did it disrespectfully.  I must admit, my first impression was that Ty looked and talked like an unscrupulous used car salesman. Our melanoma journey is hard enough – we do not need to disrespect each other. We do not need need to bicker, speaking of which – my bickering ends here and now, forever I hope. 

I need to stop obsessing and take a break. I hope I haven't offended you. I'll take that nice weekend. Thanks. And you have a nice weekend!! Tony

Hi Ed, the percentages and data quoted were from a link on the benefits of CLND forwarded to me in a previous post in another thread from bubbles. Off the top of my head, I quoted correctly. I admitted that I could not find the German press release debunking it, for which I asked in a previous thread if anyone could help me find it again.  I never had a problem finding Abstract LBA9002 which I read several times. I am sorry that I did not keep my threads straight, and do the back pedalling and repetitive typing. 

To quote you, "… because it took them a long time to get enough patients to agree to be randomized." Why are you presenting this conjecture as fact?

To quote you, "The issue now seems to be about control of the local nodal basin and some DR. at ASCO were saying that the German study was not empowered to answer that question."  Interesting paraphrasing – It is only an issue if control of the regional lymph node basin matters to survival. Patients with CLND experienced bettter disease control in the regional node basin, but that did not translate into enhanced survival outcomes.

You ask me to back up facts and %  with the proper source in this forum.  I will do my best. Could you please extend the same courtesy to me. You leveled accusations against a series you obviously have never seen, and you did it disrespectfully.  I must admit, my first impression was that Ty looked and talked like an unscrupulous used car salesman. Our melanoma journey is hard enough – we do not need to disrespect each other. We do not need need to bicker, speaking of which – my bickering ends here and now, forever I hope. 

I need to stop obsessing and take a break. I hope I haven't offended you. I'll take that nice weekend. Thanks. And you have a nice weekend!! Tony

Hi Ed, the percentages and data quoted were from a link on the benefits of CLND forwarded to me in a previous post in another thread from bubbles. Off the top of my head, I quoted correctly. I admitted that I could not find the German press release debunking it, for which I asked in a previous thread if anyone could help me find it again.  I never had a problem finding Abstract LBA9002 which I read several times. I am sorry that I did not keep my threads straight, and do the back pedalling and repetitive typing. 

To quote you, "… because it took them a long time to get enough patients to agree to be randomized." Why are you presenting this conjecture as fact?

To quote you, "The issue now seems to be about control of the local nodal basin and some DR. at ASCO were saying that the German study was not empowered to answer that question."  Interesting paraphrasing – It is only an issue if control of the regional lymph node basin matters to survival. Patients with CLND experienced bettter disease control in the regional node basin, but that did not translate into enhanced survival outcomes.

You ask me to back up facts and %  with the proper source in this forum.  I will do my best. Could you please extend the same courtesy to me. You leveled accusations against a series you obviously have never seen, and you did it disrespectfully.  I must admit, my first impression was that Ty looked and talked like an unscrupulous used car salesman. Our melanoma journey is hard enough – we do not need to disrespect each other. We do not need need to bicker, speaking of which – my bickering ends here and now, forever I hope. 

I need to stop obsessing and take a break. I hope I haven't offended you. I'll take that nice weekend. Thanks. And you have a nice weekend!! Tony

Hi Tony, the German study was 9 years long because it took them a long time to get enough patients to agree to be randomized. If you type in ASCO 2015 then go to their link you can read the study. It is Abstract LBA9002 and was run by the University of Tuebingen Germany. They had 483 patients in the study and had great results. In the U.S.A. they are doing the MSLT-11 study which is do out in 2022 . The issue now seems to be about control of the local nodal basin and some Dr. at ASCO were saying that the German study was not powered to answer that question. I hope this helps you in regards to finding the current study on CLND and what it is saying about it. Now my question to you again is the study you claimed off the top of your head and the findings, this is where I have my concern! When you write on the forum and state % and facts please back them up with the proper source. I also hope that your next Oncologist is more helpful than your experience up to now. As far as the series " The truth about cancer" , I looked up several of the  people that Ty Bollinger was interviewing and they all of them seem to be in the book writing business. Have a nice weekend!!! Ed 

Hi Tony, the German study was 9 years long because it took them a long time to get enough patients to agree to be randomized. If you type in ASCO 2015 then go to their link you can read the study. It is Abstract LBA9002 and was run by the University of Tuebingen Germany. They had 483 patients in the study and had great results. In the U.S.A. they are doing the MSLT-11 study which is do out in 2022 . The issue now seems to be about control of the local nodal basin and some Dr. at ASCO were saying that the German study was not powered to answer that question. I hope this helps you in regards to finding the current study on CLND and what it is saying about it. Now my question to you again is the study you claimed off the top of your head and the findings, this is where I have my concern! When you write on the forum and state % and facts please back them up with the proper source. I also hope that your next Oncologist is more helpful than your experience up to now. As far as the series " The truth about cancer" , I looked up several of the  people that Ty Bollinger was interviewing and they all of them seem to be in the book writing business. Have a nice weekend!!! Ed 

No offense taken – thanks for the reply.  You and this forum have been immensely helpful.  It is unsettling for everyone when discussions deteriorate to ranting and name calling from both sides. For my part I feel I was relating my experience, not advocating it. Did I relate anything untrue?

My biggest shock aside from my Stage IIIb diagnosis were things I learned online, and especially having them confirmed from this forum – why do treatments not improve survival?  At Stage III why on earth is anyone getting CLND, chemo, interferon, and radiation when all clinical studies demonstrate no improvement in survival? Why are these treatments even being offered? My general oncologist demanded these treatments be done. I have scheduled an appointment with a melanoma specialist. Will he be any different?  I guess I will find out.  If clinical trial and observation/close surveillance are really the two only viable options, why not improve your health as much as you possibly can? What is wrong with researching other approaches and asking for feedback on it? It appears that  diet is largely ignored in traditional treatment when recommendations from outside sources (like this forum) or alternative venues can greatly ease side effects. 

I was gifted the complete series (otherwise $47) and have just finished watching all 11 hours. I would not have watched it had it not been gifted, especially given all the quackery accusations that pop up when you google it.  From the get-go I assumed it was quackery. All the doctors in the series are currently treating cancer and most are cancer surviviors themselves, and all claim higher survivor rates than standard treatment. They claim that their results are suppressed by the FDA and ignored by media and that pharma will never do a clinical study because there is no money in it. Some responses in this MPIP forum claim that some of these doctors are renown in standard treament. There was never a one cure-all and I was never asked to buy b17, nor was sodium bicarbonate ever advocated as a cure for cancer. It did present guests whose orchestrations of diet and lifestyle prevailed over cancer. Bottom line – I would recommend it with reservations. One of their claims – 86% of interviewed doctors treating cancer will not do the chemo they are giving if they had the same cancer. Does anybody know if this is true?

Off the top of my head, the study which proclaimed CLND survival benefit came out in 2014 and claimed a 44% improval in survival and was endorsed by the New England Journal of Medicine. For my doctor's misdiagnosis of IIIa, it stated the 5 year survival would improve from 65% to 71% – I have since learned that I am really IIIb. The subsequent contradictory news release was German – I imagine it could be the same German team who released their 20 year study in Chicago at ASCO. I spent a great deal of time trying to find the release and finally gave up. My computing skills leave a lot to be desired.

I hope my experience is helpful to the original post concerning CLND.  I know little about IIIa chances of getting into a trial.  My own inquiries yielded little and I will probably not pursue clinical trial for now, although I do qualify at IIIb. I have taken in a lot from some major obsessing.  I need to work on chilling out.  Best wishes!!!  Tony

No offense taken – thanks for the reply.  You and this forum have been immensely helpful.  It is unsettling for everyone when discussions deteriorate to ranting and name calling from both sides. For my part I feel I was relating my experience, not advocating it. Did I relate anything untrue?

My biggest shock aside from my Stage IIIb diagnosis were things I learned online, and especially having them confirmed from this forum – why do treatments not improve survival?  At Stage III why on earth is anyone getting CLND, chemo, interferon, and radiation when all clinical studies demonstrate no improvement in survival? Why are these treatments even being offered? My general oncologist demanded these treatments be done. I have scheduled an appointment with a melanoma specialist. Will he be any different?  I guess I will find out.  If clinical trial and observation/close surveillance are really the two only viable options, why not improve your health as much as you possibly can? What is wrong with researching other approaches and asking for feedback on it? It appears that  diet is largely ignored in traditional treatment when recommendations from outside sources (like this forum) or alternative venues can greatly ease side effects. 

I was gifted the complete series (otherwise $47) and have just finished watching all 11 hours. I would not have watched it had it not been gifted, especially given all the quackery accusations that pop up when you google it.  From the get-go I assumed it was quackery. All the doctors in the series are currently treating cancer and most are cancer surviviors themselves, and all claim higher survivor rates than standard treatment. They claim that their results are suppressed by the FDA and ignored by media and that pharma will never do a clinical study because there is no money in it. Some responses in this MPIP forum claim that some of these doctors are renown in standard treament. There was never a one cure-all and I was never asked to buy b17, nor was sodium bicarbonate ever advocated as a cure for cancer. It did present guests whose orchestrations of diet and lifestyle prevailed over cancer. Bottom line – I would recommend it with reservations. One of their claims – 86% of interviewed doctors treating cancer will not do the chemo they are giving if they had the same cancer. Does anybody know if this is true?

Off the top of my head, the study which proclaimed CLND survival benefit came out in 2014 and claimed a 44% improval in survival and was endorsed by the New England Journal of Medicine. For my doctor's misdiagnosis of IIIa, it stated the 5 year survival would improve from 65% to 71% – I have since learned that I am really IIIb. The subsequent contradictory news release was German – I imagine it could be the same German team who released their 20 year study in Chicago at ASCO. I spent a great deal of time trying to find the release and finally gave up. My computing skills leave a lot to be desired.

I hope my experience is helpful to the original post concerning CLND.  I know little about IIIa chances of getting into a trial.  My own inquiries yielded little and I will probably not pursue clinical trial for now, although I do qualify at IIIb. I have taken in a lot from some major obsessing.  I need to work on chilling out.  Best wishes!!!  Tony

Regarding CLND, " a previous study had just come out that showed patients do better long term with it". There was a press release soon after this study which headlined that the study was faulty – the data collected really demonstrates no change in survival. Why was this study biased? And now ASCO…

I daresay CLND will continue because it is still NCCN standard treatment and well, surgeons do surgery. Rather than demonstrating a treatment's effectiveness, NCCN simply gives license to do it. Your doctor may even say that a CLND is required before you can go to the next NCCN step which is chemo, interferon, radiation, and/or clinical trial. Although recent studies confirm no increase in survival for chemo, interferon, and radiation for melanoma, they are still being done simply because it is NCCN standard treatment. I hate to be cynical – but isn't a fortune being made?  There are posts where even Stage II patients are having CLND and interferon and I can't help but think that they are being willfully frightened into it by their doctors. And is any doctor going to admit that he has performed hundreds of useless surgeries and treatments? After all, they were within unquestionable NCCN guidelines.

CLND is effective staging. You can discover if your IIIa is really IIIb or IIIc. It will never go back to II.

This has been my limited experience and I am still learning.  The more I learn about standard treatment, the more I want to learn elsewhere, and I am getting a lot of flak for it.  May your journey lead you to wellness.  

Sorry, I should have been more clear.  When I was seeing if I was eligible for trails or not that was one of the big criteria barriers I came across time and time again.

Mine was resected totally because I had a CLND and my scans were clear.  This made me ineligible for many trials.

Non-resectable disease can be for a variety of reasons (difficult to access surgically is a big one) and may qualify you for more trials.  I think right now you're sitting with non-resectable disease because you haven't had a CLND – but I would clarify all of these definitions with your team!

A CLND does have some really annoying side effects.  But it was the best choice for me a year ago (a previous study had just came out that showed patients do better long term with it).  I write about it in my blog a bit if you want to learn more about my personal experience.  It is so hard because each of us makes a decision on a different day with new data and this ASCO trial has really shaken things up this year.

Wishing you the best with this decision and know that you can only make a decision with the data you have today and not what might happen in the future – do what feels right!

Lymphedema is a real concern to think about and understand what life impact it may have.  I am 3a also and had SLN on April 8th 2014 with a CLND under my left arm in April 25th 2014.  I did not take any other treatment.  I noticed swelling in February 2015.  I have been working with a Lymphedema Therapist.  I do have it under control but wear a compression shirt, sleeve, and glove every day and a night sleeve every night.  

It's a tough choice. 

Take care, Ken

Sorry to hear about the lymhedema.

You would have thought after 10 months you would be in the clear but apparently not.

The groin area is even worse for lymphedema and most people recur anyway.

The sooner some proven better treatments appear for melanoma the better.

CLND is really tough and statistically speaking not highly successful if you are looking for a cure although currently required for disease control.

Sorry to hear about the lymhedema.

You would have thought after 10 months you would be in the clear but apparently not.

The groin area is even worse for lymphedema and most people recur anyway.

The sooner some proven better treatments appear for melanoma the better.

CLND is really tough and statistically speaking not highly successful if you are looking for a cure although currently required for disease control.

Sorry to hear about the lymhedema.

You would have thought after 10 months you would be in the clear but apparently not.

The groin area is even worse for lymphedema and most people recur anyway.

The sooner some proven better treatments appear for melanoma the better.

CLND is really tough and statistically speaking not highly successful if you are looking for a cure although currently required for disease control.

Lymphedema is a real concern to think about and understand what life impact it may have.  I am 3a also and had SLN on April 8th 2014 with a CLND under my left arm in April 25th 2014.  I did not take any other treatment.  I noticed swelling in February 2015.  I have been working with a Lymphedema Therapist.  I do have it under control but wear a compression shirt, sleeve, and glove every day and a night sleeve every night.  

It's a tough choice. 

Take care, Ken

Lymphedema is a real concern to think about and understand what life impact it may have.  I am 3a also and had SLN on April 8th 2014 with a CLND under my left arm in April 25th 2014.  I did not take any other treatment.  I noticed swelling in February 2015.  I have been working with a Lymphedema Therapist.  I do have it under control but wear a compression shirt, sleeve, and glove every day and a night sleeve every night.  

It's a tough choice. 

Take care, Ken