so many questions, so much fear….any answers welcome!

There is nothing in the stats that say it makes any difference when you progress – either immediately or years after a stage I diagnosis.  In reality, in transits kind of mean not big enough margins the first time so it's taken 14 months for those cells to grow into something (locally) that is big enough to notice.

I'd spend time looking at the clinical trial options online.  None of the other sites (MDA/ DF) have any other standard treatment to offer other than interferon.  So you can read if they have any trials ongoing.  Not a ton of them for stage III once you are NED.  There just aren't any good adjuvant options out there unless you can find a trial — and even then, most have a placebo arm.

Stats won't tell you anything about whether YOU will progress and historical data rarely describes progression, only survival.  So nothing you research along those lines will be of benefit to you, and again you know the stats are obsolete given the new treatments since 2011.

As for Interferon, read this if you haven't already:

http://theoncologist.alphamedpress.org/content/10/9/739.full

There is nothing in the stats that say it makes any difference when you progress – either immediately or years after a stage I diagnosis.  In reality, in transits kind of mean not big enough margins the first time so it's taken 14 months for those cells to grow into something (locally) that is big enough to notice.

I'd spend time looking at the clinical trial options online.  None of the other sites (MDA/ DF) have any other standard treatment to offer other than interferon.  So you can read if they have any trials ongoing.  Not a ton of them for stage III once you are NED.  There just aren't any good adjuvant options out there unless you can find a trial — and even then, most have a placebo arm.

Stats won't tell you anything about whether YOU will progress and historical data rarely describes progression, only survival.  So nothing you research along those lines will be of benefit to you, and again you know the stats are obsolete given the new treatments since 2011.

As for Interferon, read this if you haven't already:

http://theoncologist.alphamedpress.org/content/10/9/739.full

There is nothing in the stats that say it makes any difference when you progress – either immediately or years after a stage I diagnosis.  In reality, in transits kind of mean not big enough margins the first time so it's taken 14 months for those cells to grow into something (locally) that is big enough to notice.

I'd spend time looking at the clinical trial options online.  None of the other sites (MDA/ DF) have any other standard treatment to offer other than interferon.  So you can read if they have any trials ongoing.  Not a ton of them for stage III once you are NED.  There just aren't any good adjuvant options out there unless you can find a trial — and even then, most have a placebo arm.

Stats won't tell you anything about whether YOU will progress and historical data rarely describes progression, only survival.  So nothing you research along those lines will be of benefit to you, and again you know the stats are obsolete given the new treatments since 2011.

As for Interferon, read this if you haven't already:

http://theoncologist.alphamedpress.org/content/10/9/739.full

Hello Jenny22 and welcome.  I am currently Stage 3C NED for 18 months.  I was originally stage 1B and rapidly progressed to Stage 3C (enlarged node in neck) within 2 months after a WLE and SNB.  In May 2013, I had a neck dissection and parotidectomy with 68 nodes removed (1 positive w/macro-metastasis and 2 very small in-transits right outside my original scar.  I have been under the care of the Superhero doctors at Sloan since October 2012 and in fact, I am going there tomorrow fro a follow-up with visit with my oncologist.  I do not have the answers to the questions you have asked as I have asked them to myself a million times.  Everyone is different and you have to deal with the hand you are dealt.  Having cancer has definitely made me a stronger person and helped me conquer my fear of it.  I consider myself to be lucky as my oncologist has told me that reaching 1 year NED for a stage 3C person is a major milestone.  I prayer for strength daily and I am ready to face anything that may further come.  Do not pay attention to the statistics as they are outdated and irrelevant considering the new treatments available now.  Melanoma is becoming manageable with these treatments and is not considered a death sentence if the treatments are used.  You are right about adjuvant treatment for stage 3 patients and Interferon is no longer an option at most centers (including Sloan).  I participated in a Phase 1 Dendritic cell vaccine at Sloan and I am very optimistic that it has had a positive effect on me.  Stay strong, do what the doctors tell you, and most importantly, live your life.  Good luck!

P.S.: stay off the internet except for this site as you do not know what you are reading.

Hello Jenny22 and welcome.  I am currently Stage 3C NED for 18 months.  I was originally stage 1B and rapidly progressed to Stage 3C (enlarged node in neck) within 2 months after a WLE and SNB.  In May 2013, I had a neck dissection and parotidectomy with 68 nodes removed (1 positive w/macro-metastasis and 2 very small in-transits right outside my original scar.  I have been under the care of the Superhero doctors at Sloan since October 2012 and in fact, I am going there tomorrow fro a follow-up with visit with my oncologist.  I do not have the answers to the questions you have asked as I have asked them to myself a million times.  Everyone is different and you have to deal with the hand you are dealt.  Having cancer has definitely made me a stronger person and helped me conquer my fear of it.  I consider myself to be lucky as my oncologist has told me that reaching 1 year NED for a stage 3C person is a major milestone.  I prayer for strength daily and I am ready to face anything that may further come.  Do not pay attention to the statistics as they are outdated and irrelevant considering the new treatments available now.  Melanoma is becoming manageable with these treatments and is not considered a death sentence if the treatments are used.  You are right about adjuvant treatment for stage 3 patients and Interferon is no longer an option at most centers (including Sloan).  I participated in a Phase 1 Dendritic cell vaccine at Sloan and I am very optimistic that it has had a positive effect on me.  Stay strong, do what the doctors tell you, and most importantly, live your life.  Good luck!

P.S.: stay off the internet except for this site as you do not know what you are reading.

Hello Jenny22 and welcome.  I am currently Stage 3C NED for 18 months.  I was originally stage 1B and rapidly progressed to Stage 3C (enlarged node in neck) within 2 months after a WLE and SNB.  In May 2013, I had a neck dissection and parotidectomy with 68 nodes removed (1 positive w/macro-metastasis and 2 very small in-transits right outside my original scar.  I have been under the care of the Superhero doctors at Sloan since October 2012 and in fact, I am going there tomorrow fro a follow-up with visit with my oncologist.  I do not have the answers to the questions you have asked as I have asked them to myself a million times.  Everyone is different and you have to deal with the hand you are dealt.  Having cancer has definitely made me a stronger person and helped me conquer my fear of it.  I consider myself to be lucky as my oncologist has told me that reaching 1 year NED for a stage 3C person is a major milestone.  I prayer for strength daily and I am ready to face anything that may further come.  Do not pay attention to the statistics as they are outdated and irrelevant considering the new treatments available now.  Melanoma is becoming manageable with these treatments and is not considered a death sentence if the treatments are used.  You are right about adjuvant treatment for stage 3 patients and Interferon is no longer an option at most centers (including Sloan).  I participated in a Phase 1 Dendritic cell vaccine at Sloan and I am very optimistic that it has had a positive effect on me.  Stay strong, do what the doctors tell you, and most importantly, live your life.  Good luck!

P.S.: stay off the internet except for this site as you do not know what you are reading.

Jenny,

Have to say, it is all a crap shoot, so neither I, nor any doctor or any study, can really answer your questions about what precisely will happen to you and when.  However, if you want some good search engines for trials…this post and research that I put together might be helpful:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/03/searching-for-melanoma-trials-down-low.html

If you are interested in NED trials for patients Stage III to Stage IV….here is a list, though you can easily re-do your own:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/studies-listed-as-adjuvants-for.html

And, finally, though I don't know if it is still recruiting right this minute…a 5th cohort was added to my Nivo trial for folks Stage IIIB/C to Stage IV, NED for ipi/nivo at Moffitt.  If you are interested, I'd give them a call, see the bottom of this post:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/my-melanoma-stats-and-update-on-my.html

No matter what happens….you must go on, as best you can, living each day to the fullest, appreciating what you can…looking for options when possible….living your life.  Many of us have been doing so for a long time.  It is not always easy.  But you can do it.  Wishing you my best….Celeste

Jenny,

Have to say, it is all a crap shoot, so neither I, nor any doctor or any study, can really answer your questions about what precisely will happen to you and when.  However, if you want some good search engines for trials…this post and research that I put together might be helpful:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/03/searching-for-melanoma-trials-down-low.html

If you are interested in NED trials for patients Stage III to Stage IV….here is a list, though you can easily re-do your own:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/studies-listed-as-adjuvants-for.html

And, finally, though I don't know if it is still recruiting right this minute…a 5th cohort was added to my Nivo trial for folks Stage IIIB/C to Stage IV, NED for ipi/nivo at Moffitt.  If you are interested, I'd give them a call, see the bottom of this post:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/my-melanoma-stats-and-update-on-my.html

No matter what happens….you must go on, as best you can, living each day to the fullest, appreciating what you can…looking for options when possible….living your life.  Many of us have been doing so for a long time.  It is not always easy.  But you can do it.  Wishing you my best….Celeste

Jenny,

Have to say, it is all a crap shoot, so neither I, nor any doctor or any study, can really answer your questions about what precisely will happen to you and when.  However, if you want some good search engines for trials…this post and research that I put together might be helpful:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/03/searching-for-melanoma-trials-down-low.html

If you are interested in NED trials for patients Stage III to Stage IV….here is a list, though you can easily re-do your own:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/studies-listed-as-adjuvants-for.html

And, finally, though I don't know if it is still recruiting right this minute…a 5th cohort was added to my Nivo trial for folks Stage IIIB/C to Stage IV, NED for ipi/nivo at Moffitt.  If you are interested, I'd give them a call, see the bottom of this post:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/my-melanoma-stats-and-update-on-my.html

No matter what happens….you must go on, as best you can, living each day to the fullest, appreciating what you can…looking for options when possible….living your life.  Many of us have been doing so for a long time.  It is not always easy.  But you can do it.  Wishing you my best….Celeste

In my opinion it is best to get to as many of the good places as possible so you are in the doctor's system so you can just contact them later when you need them or find something they have so easier to contact them. Plus learning stuff from them. That is if you are in good shape and feeling pretty good to do that traveling which it sounds like you are. I made the mistake of only going to one non local place then almost became paralyzed so now I have to been careful with my travel options. Just my two cents. Good luck to you.

Artie

In my opinion it is best to get to as many of the good places as possible so you are in the doctor's system so you can just contact them later when you need them or find something they have so easier to contact them. Plus learning stuff from them. That is if you are in good shape and feeling pretty good to do that traveling which it sounds like you are. I made the mistake of only going to one non local place then almost became paralyzed so now I have to been careful with my travel options. Just my two cents. Good luck to you.

Artie

In my opinion it is best to get to as many of the good places as possible so you are in the doctor's system so you can just contact them later when you need them or find something they have so easier to contact them. Plus learning stuff from them. That is if you are in good shape and feeling pretty good to do that traveling which it sounds like you are. I made the mistake of only going to one non local place then almost became paralyzed so now I have to been careful with my travel options. Just my two cents. Good luck to you.

Artie