tmelanio

Wow – you are sharp!! I have an appointment with my new doctor this Friday – a melanoma specialist.  In addition to the about 30 questions I have written down to ask him, I now have an additional one – Can my positive sentinel node still be tested for the presence of immune cells? Thanks again for finding something I couldn't find or overlooked.

Wow – you are sharp!! I have an appointment with my new doctor this Friday – a melanoma specialist.  In addition to the about 30 questions I have written down to ask him, I now have an additional one – Can my positive sentinel node still be tested for the presence of immune cells? Thanks again for finding something I couldn't find or overlooked.

Wow – you are sharp!! I have an appointment with my new doctor this Friday – a melanoma specialist.  In addition to the about 30 questions I have written down to ask him, I now have an additional one – Can my positive sentinel node still be tested for the presence of immune cells? Thanks again for finding something I couldn't find or overlooked.

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

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

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.  

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.