Stage IIIB

Hi Kelly – so did you get the Interferon arm of the trial and decide to drop out?  I am assuming the 7% figure is for interferon since we dont really know how Yervoy will work on NED Stage 3 patients yet.  The options are frustrating at Stage 3 NED. 

We try and stay healthy but we also try and enjoy ourselves.  I have seen some very healthy Stage 3 patients progress and other not so healthy people do well – you just never know.  There are a number of people on the board who have chosen observation and been NED for 10 years – BUT the same goes for those who have done interferon.  It all comes down to what you want for YOU.  My husband chose observation and has been clear at Stage 3a for 2+ years. 

PS – Have you heard of taking Aspirin for melanoma prevention?  http://www.msnbc.msn.com/id/43468687/ns/health-cancer/

Take care!

Emily

Hi Kelly – so did you get the Interferon arm of the trial and decide to drop out?  I am assuming the 7% figure is for interferon since we dont really know how Yervoy will work on NED Stage 3 patients yet.  The options are frustrating at Stage 3 NED. 

We try and stay healthy but we also try and enjoy ourselves.  I have seen some very healthy Stage 3 patients progress and other not so healthy people do well – you just never know.  There are a number of people on the board who have chosen observation and been NED for 10 years – BUT the same goes for those who have done interferon.  It all comes down to what you want for YOU.  My husband chose observation and has been clear at Stage 3a for 2+ years. 

PS – Have you heard of taking Aspirin for melanoma prevention?  http://www.msnbc.msn.com/id/43468687/ns/health-cancer/

Take care!

Emily

Hi Kelly – so did you get the Interferon arm of the trial and decide to drop out?  I am assuming the 7% figure is for interferon since we dont really know how Yervoy will work on NED Stage 3 patients yet.  The options are frustrating at Stage 3 NED. 

We try and stay healthy but we also try and enjoy ourselves.  I have seen some very healthy Stage 3 patients progress and other not so healthy people do well – you just never know.  There are a number of people on the board who have chosen observation and been NED for 10 years – BUT the same goes for those who have done interferon.  It all comes down to what you want for YOU.  My husband chose observation and has been clear at Stage 3a for 2+ years. 

PS – Have you heard of taking Aspirin for melanoma prevention?  http://www.msnbc.msn.com/id/43468687/ns/health-cancer/

Take care!

Emily

Hello Kelly,

Your question, although seemingly simple at first blush is very complex:; so bear with me in a conversation with you.

For clarification only……………….you had the primary melanoma removed and one node that had micro-mets , and the node with the micro mets was discovered not thru the SNB but thru prophylactic lymph node dissection…..that is to say your surgeon, as a precaution with a negative SNB did a elective lymph node dissection, and following that, the pathology revealed the metastasis in a node removed?

Though a nuance, how that infected node came to be discovered is important.

Now, beyond that, regardless of how disordered , it ,could mean that the lymph node did it's job and put melanoma in a box and your body is done with it.  Or, it could mean that beyond the "we got it all" concept of surgery; by the very nature of metastasis for Stage III, melanoma has entered, your body on a microscopic/molecular level ………….ONE cell on the scalpel, ONE cell in the bloodstream and melanoma is still there.

This is not meant to scare you, but educate you…………….the largest reason being that you have this idea that surgery alone is going to cure you.  The cure word is what alarms me about your framing of logic.

Again, this is a conversation, but in 1987 I had surgery that got it all at Stage III, and it did……………….for nine years until it came roaring back as Stage IV.  Cure is a extremely premature word for you to even have in the conversation right now.

I am on your side and I am all about hope, but make no mistake of the intricate methods and ways that melanoma works.  Seeking durable remission is worthy of conversation, but at Stage III so early for you, if you even THINK you are cured………………..well you're setting yourself up for heartache, because the historical science just s not there to support that line of thought so early in.

You may, as many others, may think I am being a downer, but check my history, I'm not blowing smoke up your skirt; I'm speaking of realities.

In alllllllllllll the melanoma literature,there are not that many instances of "cure" at Stage III from surgery alone.

In fact, beyond Stage I, there is virtually NO talk of cure, only durable remission.

I totally get your hesitation about entering a trial, but I also totally get that you don't get this is a disease beyond lemon juice, vitamin d, exercise, diet and alcohol intake.

Yes, all of these  things are part of a healthy lifestyle, but  are not a cure for melanoma. 

Total guess on my part, but I get the sense you are thirty years old plus or minus and although Kelly is no assurance, you might be a woman, my sense is you are.

If you ARE a woman, and if you ARE around that age group, you might want to know what the the biggest killer of women is in your age group.  Yep melanoma.

Again, I am on your side, but I'm way beyond my first hayride with melanoma and with respect, I don't think you understand just what kind of fire you are playing with.

Cheers,

Charlie S

Hello Kelly,

Your question, although seemingly simple at first blush is very complex:; so bear with me in a conversation with you.

For clarification only……………….you had the primary melanoma removed and one node that had micro-mets , and the node with the micro mets was discovered not thru the SNB but thru prophylactic lymph node dissection…..that is to say your surgeon, as a precaution with a negative SNB did a elective lymph node dissection, and following that, the pathology revealed the metastasis in a node removed?

Though a nuance, how that infected node came to be discovered is important.

Now, beyond that, regardless of how disordered , it ,could mean that the lymph node did it's job and put melanoma in a box and your body is done with it.  Or, it could mean that beyond the "we got it all" concept of surgery; by the very nature of metastasis for Stage III, melanoma has entered, your body on a microscopic/molecular level ………….ONE cell on the scalpel, ONE cell in the bloodstream and melanoma is still there.

This is not meant to scare you, but educate you…………….the largest reason being that you have this idea that surgery alone is going to cure you.  The cure word is what alarms me about your framing of logic.

Again, this is a conversation, but in 1987 I had surgery that got it all at Stage III, and it did……………….for nine years until it came roaring back as Stage IV.  Cure is a extremely premature word for you to even have in the conversation right now.

I am on your side and I am all about hope, but make no mistake of the intricate methods and ways that melanoma works.  Seeking durable remission is worthy of conversation, but at Stage III so early for you, if you even THINK you are cured………………..well you're setting yourself up for heartache, because the historical science just s not there to support that line of thought so early in.

You may, as many others, may think I am being a downer, but check my history, I'm not blowing smoke up your skirt; I'm speaking of realities.

In alllllllllllll the melanoma literature,there are not that many instances of "cure" at Stage III from surgery alone.

In fact, beyond Stage I, there is virtually NO talk of cure, only durable remission.

I totally get your hesitation about entering a trial, but I also totally get that you don't get this is a disease beyond lemon juice, vitamin d, exercise, diet and alcohol intake.

Yes, all of these  things are part of a healthy lifestyle, but  are not a cure for melanoma. 

Total guess on my part, but I get the sense you are thirty years old plus or minus and although Kelly is no assurance, you might be a woman, my sense is you are.

If you ARE a woman, and if you ARE around that age group, you might want to know what the the biggest killer of women is in your age group.  Yep melanoma.

Again, I am on your side, but I'm way beyond my first hayride with melanoma and with respect, I don't think you understand just what kind of fire you are playing with.

Cheers,

Charlie S

Hello Kelly,

Your question, although seemingly simple at first blush is very complex:; so bear with me in a conversation with you.

For clarification only……………….you had the primary melanoma removed and one node that had micro-mets , and the node with the micro mets was discovered not thru the SNB but thru prophylactic lymph node dissection…..that is to say your surgeon, as a precaution with a negative SNB did a elective lymph node dissection, and following that, the pathology revealed the metastasis in a node removed?

Though a nuance, how that infected node came to be discovered is important.

Now, beyond that, regardless of how disordered , it ,could mean that the lymph node did it's job and put melanoma in a box and your body is done with it.  Or, it could mean that beyond the "we got it all" concept of surgery; by the very nature of metastasis for Stage III, melanoma has entered, your body on a microscopic/molecular level ………….ONE cell on the scalpel, ONE cell in the bloodstream and melanoma is still there.

This is not meant to scare you, but educate you…………….the largest reason being that you have this idea that surgery alone is going to cure you.  The cure word is what alarms me about your framing of logic.

Again, this is a conversation, but in 1987 I had surgery that got it all at Stage III, and it did……………….for nine years until it came roaring back as Stage IV.  Cure is a extremely premature word for you to even have in the conversation right now.

I am on your side and I am all about hope, but make no mistake of the intricate methods and ways that melanoma works.  Seeking durable remission is worthy of conversation, but at Stage III so early for you, if you even THINK you are cured………………..well you're setting yourself up for heartache, because the historical science just s not there to support that line of thought so early in.

You may, as many others, may think I am being a downer, but check my history, I'm not blowing smoke up your skirt; I'm speaking of realities.

In alllllllllllll the melanoma literature,there are not that many instances of "cure" at Stage III from surgery alone.

In fact, beyond Stage I, there is virtually NO talk of cure, only durable remission.

I totally get your hesitation about entering a trial, but I also totally get that you don't get this is a disease beyond lemon juice, vitamin d, exercise, diet and alcohol intake.

Yes, all of these  things are part of a healthy lifestyle, but  are not a cure for melanoma. 

Total guess on my part, but I get the sense you are thirty years old plus or minus and although Kelly is no assurance, you might be a woman, my sense is you are.

If you ARE a woman, and if you ARE around that age group, you might want to know what the the biggest killer of women is in your age group.  Yep melanoma.

Again, I am on your side, but I'm way beyond my first hayride with melanoma and with respect, I don't think you understand just what kind of fire you are playing with.

Cheers,

Charlie S

Hey Kelly,

Sorry to hear you have joined the club. I think becoming an active member of this forum is one of the best things you can do.  No doubt about it that in can be scary and even depressing at times but it can also be extremely enlightning and up lifting at other times.  I personally monitor my mood and sometimes avoid the threads that look somber if I don't think I'm in the right state of mind to read them.  There are many threads on interferon and getting all the different opinions can be very confusing.  I was in a similar situation to yours and decided to do ipi vs interferon trial and was selected into the interferon arm.  I just had my first infusion today.  I'm not going to try and convince you one way or another with the interferon.  I was in a little different situation than you in that I had a 4.4cm tumor in my lymphnodes with external capsulary activity.  I'd be glad to share some of my considerations as to why I went with the interferon if you want to PM me but I don't want to seem like I'm trying to convince you one way or another.  I can only tell you what was right for me.  Below is a great link that really had a big impact on me that I highly recommend.  It's about 90 minutes so it takes a little while but well worth it in my opinion.  I know Charlie S may seem like he came across a little strong but he's right on the money.  Make no doubt about it, you are fighting for your life.  That doesn't mean though that you need to stop living.  If anything you have to live and enjoy life more than ever.  I wish you the best in your course.  Where you are right now was the toughest time for me because I had a very tough time sorting through on the information and making my decision.  Once I made it things got a lot better.

Brian

 http://www3.mdanderson.org/streams/FullVideoPlayer.cfm?xml=publicEd/config/Anti-Cancer_cfg 
 

Hey Kelly,

Sorry to hear you have joined the club. I think becoming an active member of this forum is one of the best things you can do.  No doubt about it that in can be scary and even depressing at times but it can also be extremely enlightning and up lifting at other times.  I personally monitor my mood and sometimes avoid the threads that look somber if I don't think I'm in the right state of mind to read them.  There are many threads on interferon and getting all the different opinions can be very confusing.  I was in a similar situation to yours and decided to do ipi vs interferon trial and was selected into the interferon arm.  I just had my first infusion today.  I'm not going to try and convince you one way or another with the interferon.  I was in a little different situation than you in that I had a 4.4cm tumor in my lymphnodes with external capsulary activity.  I'd be glad to share some of my considerations as to why I went with the interferon if you want to PM me but I don't want to seem like I'm trying to convince you one way or another.  I can only tell you what was right for me.  Below is a great link that really had a big impact on me that I highly recommend.  It's about 90 minutes so it takes a little while but well worth it in my opinion.  I know Charlie S may seem like he came across a little strong but he's right on the money.  Make no doubt about it, you are fighting for your life.  That doesn't mean though that you need to stop living.  If anything you have to live and enjoy life more than ever.  I wish you the best in your course.  Where you are right now was the toughest time for me because I had a very tough time sorting through on the information and making my decision.  Once I made it things got a lot better.

Brian

 http://www3.mdanderson.org/streams/FullVideoPlayer.cfm?xml=publicEd/config/Anti-Cancer_cfg 
 

Hey Kelly,

Sorry to hear you have joined the club. I think becoming an active member of this forum is one of the best things you can do.  No doubt about it that in can be scary and even depressing at times but it can also be extremely enlightning and up lifting at other times.  I personally monitor my mood and sometimes avoid the threads that look somber if I don't think I'm in the right state of mind to read them.  There are many threads on interferon and getting all the different opinions can be very confusing.  I was in a similar situation to yours and decided to do ipi vs interferon trial and was selected into the interferon arm.  I just had my first infusion today.  I'm not going to try and convince you one way or another with the interferon.  I was in a little different situation than you in that I had a 4.4cm tumor in my lymphnodes with external capsulary activity.  I'd be glad to share some of my considerations as to why I went with the interferon if you want to PM me but I don't want to seem like I'm trying to convince you one way or another.  I can only tell you what was right for me.  Below is a great link that really had a big impact on me that I highly recommend.  It's about 90 minutes so it takes a little while but well worth it in my opinion.  I know Charlie S may seem like he came across a little strong but he's right on the money.  Make no doubt about it, you are fighting for your life.  That doesn't mean though that you need to stop living.  If anything you have to live and enjoy life more than ever.  I wish you the best in your course.  Where you are right now was the toughest time for me because I had a very tough time sorting through on the information and making my decision.  Once I made it things got a lot better.

Brian

 http://www3.mdanderson.org/streams/FullVideoPlayer.cfm?xml=publicEd/config/Anti-Cancer_cfg 
 

Kelly, welcome to our forum. Thanks for filling in the details on your profile page. If only all new people here did likewise!

The one certain thing about melanoma is its unpredictability. So, it is wise to be vigilant and not to rely solely on doctors to keep an eye on things for you. If there is anything unusual, it is always best to seek medical advice as early as possible.

Of course, it is also important to keep one's immune system as healthy as possible through having a healthy lifestyle and avoiding extremes.

Best wishes

Frank from Australia

Kelly, welcome to our forum. Thanks for filling in the details on your profile page. If only all new people here did likewise!

The one certain thing about melanoma is its unpredictability. So, it is wise to be vigilant and not to rely solely on doctors to keep an eye on things for you. If there is anything unusual, it is always best to seek medical advice as early as possible.

Of course, it is also important to keep one's immune system as healthy as possible through having a healthy lifestyle and avoiding extremes.

Best wishes

Frank from Australia

Kelly, welcome to our forum. Thanks for filling in the details on your profile page. If only all new people here did likewise!

The one certain thing about melanoma is its unpredictability. So, it is wise to be vigilant and not to rely solely on doctors to keep an eye on things for you. If there is anything unusual, it is always best to seek medical advice as early as possible.

Of course, it is also important to keep one's immune system as healthy as possible through having a healthy lifestyle and avoiding extremes.

Best wishes

Frank from Australia

Hi Kelly

I have been fortunate enough to have a long remission at Stage IIIB – I have been NED for 10 years now. There are also many others who have had a similar trajectory, so please maintain your hopefulness for a full and happy life.    I'm assuming since you are giving your stage as IIIB though, that your tumour was palpable through the skin (if it was entirely contained in the capsule that surrounds the lymph node….what is referred to as "encapsulated"…then that is much more positive news than if the capsule had ruptured due to tumour load).  But a palpable tumour is still far more tumour load than micromets (stage IIIA) and as Charlie says, even 1 cell that escapes can lie dormant and wait to recur (and it's reasonable to assume that may have already happened in your body since your Jan 2011 mel had clearly spread at the time). 

I don't know that I would take part in an interferon trial – for myself. It is a harsh treatment and quite a lot of people have strong opinions for/against in view of the fact that effect on survival is still not established reliably. I'm not strongly opposed but elected not to do interferon.   However at stage IIIB I would – in your shoes – investigate other options for adjuvant treatment.  I eventually went with a vaccine trial that combined an immune system stimulant with a protein isolated from my tumour and that lasted for 4 months.  Other immune system drugs include GMCSF.

I don't want to panic you because peace of mind with your decision is important, but please do not underestimate the aggressiveness of melanoma.  I do all the things you say (supplements, lifestyle changes, meditation) and they have helped me cope a lot, but I still took advantage of the medical options open to me.  If you don't like the one you've been offered, I would strongly recommend you do some research to see what other options may be available for stage III because if you don't do everything to stop it at this stage, your options are vastly reduced at stage IV.

Good luck

AlisonC

Stage IIIB

NED since 2001

Hi Kelly

I have been fortunate enough to have a long remission at Stage IIIB – I have been NED for 10 years now. There are also many others who have had a similar trajectory, so please maintain your hopefulness for a full and happy life.    I'm assuming since you are giving your stage as IIIB though, that your tumour was palpable through the skin (if it was entirely contained in the capsule that surrounds the lymph node….what is referred to as "encapsulated"…then that is much more positive news than if the capsule had ruptured due to tumour load).  But a palpable tumour is still far more tumour load than micromets (stage IIIA) and as Charlie says, even 1 cell that escapes can lie dormant and wait to recur (and it's reasonable to assume that may have already happened in your body since your Jan 2011 mel had clearly spread at the time). 

I don't know that I would take part in an interferon trial – for myself. It is a harsh treatment and quite a lot of people have strong opinions for/against in view of the fact that effect on survival is still not established reliably. I'm not strongly opposed but elected not to do interferon.   However at stage IIIB I would – in your shoes – investigate other options for adjuvant treatment.  I eventually went with a vaccine trial that combined an immune system stimulant with a protein isolated from my tumour and that lasted for 4 months.  Other immune system drugs include GMCSF.

I don't want to panic you because peace of mind with your decision is important, but please do not underestimate the aggressiveness of melanoma.  I do all the things you say (supplements, lifestyle changes, meditation) and they have helped me cope a lot, but I still took advantage of the medical options open to me.  If you don't like the one you've been offered, I would strongly recommend you do some research to see what other options may be available for stage III because if you don't do everything to stop it at this stage, your options are vastly reduced at stage IV.

Good luck

AlisonC

Stage IIIB

NED since 2001

Hi Kelly

I have been fortunate enough to have a long remission at Stage IIIB – I have been NED for 10 years now. There are also many others who have had a similar trajectory, so please maintain your hopefulness for a full and happy life.    I'm assuming since you are giving your stage as IIIB though, that your tumour was palpable through the skin (if it was entirely contained in the capsule that surrounds the lymph node….what is referred to as "encapsulated"…then that is much more positive news than if the capsule had ruptured due to tumour load).  But a palpable tumour is still far more tumour load than micromets (stage IIIA) and as Charlie says, even 1 cell that escapes can lie dormant and wait to recur (and it's reasonable to assume that may have already happened in your body since your Jan 2011 mel had clearly spread at the time). 

I don't know that I would take part in an interferon trial – for myself. It is a harsh treatment and quite a lot of people have strong opinions for/against in view of the fact that effect on survival is still not established reliably. I'm not strongly opposed but elected not to do interferon.   However at stage IIIB I would – in your shoes – investigate other options for adjuvant treatment.  I eventually went with a vaccine trial that combined an immune system stimulant with a protein isolated from my tumour and that lasted for 4 months.  Other immune system drugs include GMCSF.

I don't want to panic you because peace of mind with your decision is important, but please do not underestimate the aggressiveness of melanoma.  I do all the things you say (supplements, lifestyle changes, meditation) and they have helped me cope a lot, but I still took advantage of the medical options open to me.  If you don't like the one you've been offered, I would strongly recommend you do some research to see what other options may be available for stage III because if you don't do everything to stop it at this stage, your options are vastly reduced at stage IV.

Good luck

AlisonC

Stage IIIB

NED since 2001

Kelly,

You have received many thoughful responses and I wanted to close out my thoughts with one mantra that I want you to know.

It is your chance, so it is your choice.

No matter the way forward ; you decide what is best for you,because  it is YOUR choice, not that of a bunch or armchair observers, and I support anyone now or in the future that makes an informed medical decision…………………..and that includes you..

Cheers,

Charlie S

Kelly,

You have received many thoughful responses and I wanted to close out my thoughts with one mantra that I want you to know.

It is your chance, so it is your choice.

No matter the way forward ; you decide what is best for you,because  it is YOUR choice, not that of a bunch or armchair observers, and I support anyone now or in the future that makes an informed medical decision…………………..and that includes you..

Cheers,

Charlie S

Kelly,

You have received many thoughful responses and I wanted to close out my thoughts with one mantra that I want you to know.

It is your chance, so it is your choice.

No matter the way forward ; you decide what is best for you,because  it is YOUR choice, not that of a bunch or armchair observers, and I support anyone now or in the future that makes an informed medical decision…………………..and that includes you..

Cheers,

Charlie S