WOW

Better yet, just stay and I'll go.  I haven't checked in here much lately so, no problem there.  But, if you want to deal with melanoma you might want to toughen up a bit if you can't take hearing that our treatments suck.  I can't tell you how many people I know, mostly who are doing well after interferon and who go to the same doctors I went to, have left the board because of people going on and ON about how they wouldn't do interferon.  One woman told me new people don't want to hear interferon success stories, they want something that will cure them and they won't be sick. 

Good luck versus bad, that's what it all comes down to.  Make your choices and don't look back.  Hope that what you've done can buy some time until something comes along that works – not just give us another few months and we're supposed to celebrate having such a wonderful new drug. Anyway, if I bother you, you just stay, as I've got a lot of other stuff going on right now that , thankfully doesn't include cancer.  I think 10 years here has been enough.

DebbieH, stage IIIC, NED over 10 years after INTERFERON

Better yet, just stay and I'll go.  I haven't checked in here much lately so, no problem there.  But, if you want to deal with melanoma you might want to toughen up a bit if you can't take hearing that our treatments suck.  I can't tell you how many people I know, mostly who are doing well after interferon and who go to the same doctors I went to, have left the board because of people going on and ON about how they wouldn't do interferon.  One woman told me new people don't want to hear interferon success stories, they want something that will cure them and they won't be sick. 

Good luck versus bad, that's what it all comes down to.  Make your choices and don't look back.  Hope that what you've done can buy some time until something comes along that works – not just give us another few months and we're supposed to celebrate having such a wonderful new drug. Anyway, if I bother you, you just stay, as I've got a lot of other stuff going on right now that , thankfully doesn't include cancer.  I think 10 years here has been enough.

DebbieH, stage IIIC, NED over 10 years after INTERFERON

Better yet, just stay and I'll go.  I haven't checked in here much lately so, no problem there.  But, if you want to deal with melanoma you might want to toughen up a bit if you can't take hearing that our treatments suck.  I can't tell you how many people I know, mostly who are doing well after interferon and who go to the same doctors I went to, have left the board because of people going on and ON about how they wouldn't do interferon.  One woman told me new people don't want to hear interferon success stories, they want something that will cure them and they won't be sick. 

Good luck versus bad, that's what it all comes down to.  Make your choices and don't look back.  Hope that what you've done can buy some time until something comes along that works – not just give us another few months and we're supposed to celebrate having such a wonderful new drug. Anyway, if I bother you, you just stay, as I've got a lot of other stuff going on right now that , thankfully doesn't include cancer.  I think 10 years here has been enough.

DebbieH, stage IIIC, NED over 10 years after INTERFERON

Don't let what others say get to you…I went from stage nothing to stage 4 and interferon was never offered.

Interferon isn't always recommended by oncologists…many people have done it and progressed while others didn't  progressed. Like everything else we have in the trials…nothing brings a certain cure. Even today the debate over the few people who get a durable response to anything is still subjective. Was it the IL-2 or perhaps the interferon that brought the durable response or not…all those things are in question. For me I was surgically made NED March 26, 2010… I didn't begin my trial until fall….yet I remain NED…is it the trial drugs or the surgery or by nature that my melanoma isn't agressive as others..I was told IL-2 isn't worth the hell you go through and durable results are slim  in most cases…some people will argue, but numbers don't lie.. Because something works for me doesn't mean it will work for others… I would like to tell the world anti pd 1 is the magic bullet…but I know it didn't work for some and we have lost a few people in our trial. At best for me- I want it to work!   Lynn

Don't let what others say get to you…I went from stage nothing to stage 4 and interferon was never offered.

Interferon isn't always recommended by oncologists…many people have done it and progressed while others didn't  progressed. Like everything else we have in the trials…nothing brings a certain cure. Even today the debate over the few people who get a durable response to anything is still subjective. Was it the IL-2 or perhaps the interferon that brought the durable response or not…all those things are in question. For me I was surgically made NED March 26, 2010… I didn't begin my trial until fall….yet I remain NED…is it the trial drugs or the surgery or by nature that my melanoma isn't agressive as others..I was told IL-2 isn't worth the hell you go through and durable results are slim  in most cases…some people will argue, but numbers don't lie.. Because something works for me doesn't mean it will work for others… I would like to tell the world anti pd 1 is the magic bullet…but I know it didn't work for some and we have lost a few people in our trial. At best for me- I want it to work!   Lynn

Don't let what others say get to you…I went from stage nothing to stage 4 and interferon was never offered.

Interferon isn't always recommended by oncologists…many people have done it and progressed while others didn't  progressed. Like everything else we have in the trials…nothing brings a certain cure. Even today the debate over the few people who get a durable response to anything is still subjective. Was it the IL-2 or perhaps the interferon that brought the durable response or not…all those things are in question. For me I was surgically made NED March 26, 2010… I didn't begin my trial until fall….yet I remain NED…is it the trial drugs or the surgery or by nature that my melanoma isn't agressive as others..I was told IL-2 isn't worth the hell you go through and durable results are slim  in most cases…some people will argue, but numbers don't lie.. Because something works for me doesn't mean it will work for others… I would like to tell the world anti pd 1 is the magic bullet…but I know it didn't work for some and we have lost a few people in our trial. At best for me- I want it to work!   Lynn

I do tell why I do things, I do not say that anyone is automatically wrong for what they believe to be the best chance for them.  Charlie and I have both wanted non-standard things done for us.  Was it our belief of what we wanted, was it the actual treatment that made the difference?  Hard to be absolutely sure.  I will state my reasons for doing what i do.  I do not knock others for what they believe is correct for them.  If mental attitude can help, more power to it.  My daughter believes that my attitude is one of the reasons I am still here.  I even had one of the top Oncology doctors/researchers in the world tell me that what I wanted to do in 2008 was not ready for primetime.   Ihad my Oncologist do what I felt was correct for me.  Is that why I am still here?  Who knows!  Do i think the other Onc was wrong in my case?  I strongly suspect so.  Mny people told me that theyhad heard bad things about the treatment I wanted.  I appreciated hearing what they had seen/heard.  Did I change my mind as to what I wanted?  I did further research and talked with and emailed several other Oncologists to get additional information on the questions they brought up and pushed for what I believed correct for my case.  I had no anomosity towards anyone that believed I was facing disaster.  I have since developed much respect for the help many of these same people have provided others in the years then. 

  We all do what we feel is the best option available to us at the time and still wish we had even better options.  One of the biggest problems is that no Oncologist nor patient can be 100% sure of the correct thing for ourselves, much less for others.  I do not think that most people here intend to actually cut others, most just tell why they thought the way they did and tried what they did.

Debbie and Bubbles, I hope you both understand that each of you contribute things that neither Charlie, Jimmy nor myself can contribute.  I cannot help anyone with details about the PD1 trials, I cannot give anyone a realistic hope that they will not go from stage III to stage IV based on my own experience.  We each have seperate, but valuable experiences to share with others fighting this disease.  Debbie has been helpful to many people over the years and I have not seen her being mean spirited to others.  I hope you will drop any anommosity and both continue to help others that need your input here.               GO FOR THE GOOD.

I do tell why I do things, I do not say that anyone is automatically wrong for what they believe to be the best chance for them.  Charlie and I have both wanted non-standard things done for us.  Was it our belief of what we wanted, was it the actual treatment that made the difference?  Hard to be absolutely sure.  I will state my reasons for doing what i do.  I do not knock others for what they believe is correct for them.  If mental attitude can help, more power to it.  My daughter believes that my attitude is one of the reasons I am still here.  I even had one of the top Oncology doctors/researchers in the world tell me that what I wanted to do in 2008 was not ready for primetime.   Ihad my Oncologist do what I felt was correct for me.  Is that why I am still here?  Who knows!  Do i think the other Onc was wrong in my case?  I strongly suspect so.  Mny people told me that theyhad heard bad things about the treatment I wanted.  I appreciated hearing what they had seen/heard.  Did I change my mind as to what I wanted?  I did further research and talked with and emailed several other Oncologists to get additional information on the questions they brought up and pushed for what I believed correct for my case.  I had no anomosity towards anyone that believed I was facing disaster.  I have since developed much respect for the help many of these same people have provided others in the years then. 

  We all do what we feel is the best option available to us at the time and still wish we had even better options.  One of the biggest problems is that no Oncologist nor patient can be 100% sure of the correct thing for ourselves, much less for others.  I do not think that most people here intend to actually cut others, most just tell why they thought the way they did and tried what they did.

Debbie and Bubbles, I hope you both understand that each of you contribute things that neither Charlie, Jimmy nor myself can contribute.  I cannot help anyone with details about the PD1 trials, I cannot give anyone a realistic hope that they will not go from stage III to stage IV based on my own experience.  We each have seperate, but valuable experiences to share with others fighting this disease.  Debbie has been helpful to many people over the years and I have not seen her being mean spirited to others.  I hope you will drop any anommosity and both continue to help others that need your input here.               GO FOR THE GOOD.

I do tell why I do things, I do not say that anyone is automatically wrong for what they believe to be the best chance for them.  Charlie and I have both wanted non-standard things done for us.  Was it our belief of what we wanted, was it the actual treatment that made the difference?  Hard to be absolutely sure.  I will state my reasons for doing what i do.  I do not knock others for what they believe is correct for them.  If mental attitude can help, more power to it.  My daughter believes that my attitude is one of the reasons I am still here.  I even had one of the top Oncology doctors/researchers in the world tell me that what I wanted to do in 2008 was not ready for primetime.   Ihad my Oncologist do what I felt was correct for me.  Is that why I am still here?  Who knows!  Do i think the other Onc was wrong in my case?  I strongly suspect so.  Mny people told me that theyhad heard bad things about the treatment I wanted.  I appreciated hearing what they had seen/heard.  Did I change my mind as to what I wanted?  I did further research and talked with and emailed several other Oncologists to get additional information on the questions they brought up and pushed for what I believed correct for my case.  I had no anomosity towards anyone that believed I was facing disaster.  I have since developed much respect for the help many of these same people have provided others in the years then. 

  We all do what we feel is the best option available to us at the time and still wish we had even better options.  One of the biggest problems is that no Oncologist nor patient can be 100% sure of the correct thing for ourselves, much less for others.  I do not think that most people here intend to actually cut others, most just tell why they thought the way they did and tried what they did.

Debbie and Bubbles, I hope you both understand that each of you contribute things that neither Charlie, Jimmy nor myself can contribute.  I cannot help anyone with details about the PD1 trials, I cannot give anyone a realistic hope that they will not go from stage III to stage IV based on my own experience.  We each have seperate, but valuable experiences to share with others fighting this disease.  Debbie has been helpful to many people over the years and I have not seen her being mean spirited to others.  I hope you will drop any anommosity and both continue to help others that need your input here.               GO FOR THE GOOD.

Although I feel the amount of "misinformation" given here is low, I do understand what you are saying. Whatever way you wish to look at it, the herd here is being thinned out. Since the board has been redone, it has lost many of the stage four people that were "considerate" enough to tell everyone what was going on concerning their treatment. Now, newbies, be they stage four or otherwise are just not coming here like they used too, or just not staying when they do arrive due the bickering and in your face nature that has now manifested itself here.

This board is not what it once was, and I suspect within a year or so, it will be a shell with only a few diehards that remain.

Although I feel the amount of "misinformation" given here is low, I do understand what you are saying. Whatever way you wish to look at it, the herd here is being thinned out. Since the board has been redone, it has lost many of the stage four people that were "considerate" enough to tell everyone what was going on concerning their treatment. Now, newbies, be they stage four or otherwise are just not coming here like they used too, or just not staying when they do arrive due the bickering and in your face nature that has now manifested itself here.

This board is not what it once was, and I suspect within a year or so, it will be a shell with only a few diehards that remain.

Although I feel the amount of "misinformation" given here is low, I do understand what you are saying. Whatever way you wish to look at it, the herd here is being thinned out. Since the board has been redone, it has lost many of the stage four people that were "considerate" enough to tell everyone what was going on concerning their treatment. Now, newbies, be they stage four or otherwise are just not coming here like they used too, or just not staying when they do arrive due the bickering and in your face nature that has now manifested itself here.

This board is not what it once was, and I suspect within a year or so, it will be a shell with only a few diehards that remain.

I think that fighting a life threatening disease is sooo stressful, that tempers get high and tolerance low! That is understandable considering the stress that all stages of melanoma face. I would hope that NO ONE leaves a support forum, such as mpip, based on a disagreement. It’s just like family, we don’t always have to agree and get along, just respect each other and listen! I also felt at times, that people are much too opinionated regarding certain choices we all have to make regarding treatment, but I just take what I want and leave the rest (Charlie quote). My husband did a year of interferon, and two months later progressed to stage IV, with lung mets, now he is fighting brain mets. I am totally convinced that his year of interferon held him stable for the 18 months he was NED, and we don’t regret a single injection of interferon! Our choice, our view, I respect others who take a different direction. I have come to love this Board, and read about everyone daily, and I hope to offer support and knowledge when I can. I also turn to this Board, when I need uplifting, some really nice, knowledgeable, and kind people post here.
Now, we are making our way thru WBR, and as Katy assured people in her recent post, it can be totally manageable, and Phil is doing well! Thanks Katy! And, thanks to EVERYONE who contributes to mpip! Valerie (Phil’s wife)

I think that fighting a life threatening disease is sooo stressful, that tempers get high and tolerance low! That is understandable considering the stress that all stages of melanoma face. I would hope that NO ONE leaves a support forum, such as mpip, based on a disagreement. It’s just like family, we don’t always have to agree and get along, just respect each other and listen! I also felt at times, that people are much too opinionated regarding certain choices we all have to make regarding treatment, but I just take what I want and leave the rest (Charlie quote). My husband did a year of interferon, and two months later progressed to stage IV, with lung mets, now he is fighting brain mets. I am totally convinced that his year of interferon held him stable for the 18 months he was NED, and we don’t regret a single injection of interferon! Our choice, our view, I respect others who take a different direction. I have come to love this Board, and read about everyone daily, and I hope to offer support and knowledge when I can. I also turn to this Board, when I need uplifting, some really nice, knowledgeable, and kind people post here.
Now, we are making our way thru WBR, and as Katy assured people in her recent post, it can be totally manageable, and Phil is doing well! Thanks Katy! And, thanks to EVERYONE who contributes to mpip! Valerie (Phil’s wife)

I think that fighting a life threatening disease is sooo stressful, that tempers get high and tolerance low! That is understandable considering the stress that all stages of melanoma face. I would hope that NO ONE leaves a support forum, such as mpip, based on a disagreement. It’s just like family, we don’t always have to agree and get along, just respect each other and listen! I also felt at times, that people are much too opinionated regarding certain choices we all have to make regarding treatment, but I just take what I want and leave the rest (Charlie quote). My husband did a year of interferon, and two months later progressed to stage IV, with lung mets, now he is fighting brain mets. I am totally convinced that his year of interferon held him stable for the 18 months he was NED, and we don’t regret a single injection of interferon! Our choice, our view, I respect others who take a different direction. I have come to love this Board, and read about everyone daily, and I hope to offer support and knowledge when I can. I also turn to this Board, when I need uplifting, some really nice, knowledgeable, and kind people post here.
Now, we are making our way thru WBR, and as Katy assured people in her recent post, it can be totally manageable, and Phil is doing well! Thanks Katy! And, thanks to EVERYONE who contributes to mpip! Valerie (Phil’s wife)

Bubbles,

I live in fear every day of going from III to IV.  My main hospital (Sloan) where I've done ipi, doesn't even believe in Interferon and doesn't use it.    I say main, because I've also gone to Yale/New Haven for IL-2–I have no idea what their policy is.  I have scans end of this week & next and I'm scared out of my wits!

This fear of stage IV and this stupid, crappy, mean, indiscriminant, disease often makes me say crappy, mean, indiscriminant  things to those I love most in the world–what I'm trying to say, Bubbles, is that it just wouldn't be the same without you!

But I know you have to do what's best for yourself and for your own well-being, both physical and mental, so whatever your decision, I respect it, and I wish you the best and certainly thank you for your wisdom.

warm wishes,

karen

Bubbles,

I live in fear every day of going from III to IV.  My main hospital (Sloan) where I've done ipi, doesn't even believe in Interferon and doesn't use it.    I say main, because I've also gone to Yale/New Haven for IL-2–I have no idea what their policy is.  I have scans end of this week & next and I'm scared out of my wits!

This fear of stage IV and this stupid, crappy, mean, indiscriminant, disease often makes me say crappy, mean, indiscriminant  things to those I love most in the world–what I'm trying to say, Bubbles, is that it just wouldn't be the same without you!

But I know you have to do what's best for yourself and for your own well-being, both physical and mental, so whatever your decision, I respect it, and I wish you the best and certainly thank you for your wisdom.

warm wishes,

karen

Bubbles,

I live in fear every day of going from III to IV.  My main hospital (Sloan) where I've done ipi, doesn't even believe in Interferon and doesn't use it.    I say main, because I've also gone to Yale/New Haven for IL-2–I have no idea what their policy is.  I have scans end of this week & next and I'm scared out of my wits!

This fear of stage IV and this stupid, crappy, mean, indiscriminant, disease often makes me say crappy, mean, indiscriminant  things to those I love most in the world–what I'm trying to say, Bubbles, is that it just wouldn't be the same without you!

But I know you have to do what's best for yourself and for your own well-being, both physical and mental, so whatever your decision, I respect it, and I wish you the best and certainly thank you for your wisdom.

warm wishes,

karen

I am sorry we are losing another valuable contributor in Bubbles.  We need info from folks on Trials.  Whenever a Stage 3er asks about Interferon it's bound to raise emotions.  I try to give my reasoning for NOT going that route but make it perfectly clear it is a very personal decision with no right or wrong answer.  I know a few people believe strongly one way or another but in all fairness, we need to give everyone a chance to research and make up their own minds.  All we can do is share our experience and support their decisions once made.

Love to you all,

Mary

Stage 3

I am sorry we are losing another valuable contributor in Bubbles.  We need info from folks on Trials.  Whenever a Stage 3er asks about Interferon it's bound to raise emotions.  I try to give my reasoning for NOT going that route but make it perfectly clear it is a very personal decision with no right or wrong answer.  I know a few people believe strongly one way or another but in all fairness, we need to give everyone a chance to research and make up their own minds.  All we can do is share our experience and support their decisions once made.

Love to you all,

Mary

Stage 3

I am sorry we are losing another valuable contributor in Bubbles.  We need info from folks on Trials.  Whenever a Stage 3er asks about Interferon it's bound to raise emotions.  I try to give my reasoning for NOT going that route but make it perfectly clear it is a very personal decision with no right or wrong answer.  I know a few people believe strongly one way or another but in all fairness, we need to give everyone a chance to research and make up their own minds.  All we can do is share our experience and support their decisions once made.

Love to you all,

Mary

Stage 3

Don't get too troubled, Bubbles about this site.  As the founder, Jeff Patterson, often said, "take what you want and leave the rest"  Wise fellow that one.

What one sees here, and what many have yet to understand, is that a cancer diagnosis is very closely aligned  to the human process of grief…..be it through the eyes of a patient or caregiver…..and quite often what is represented in posts here reflects that. 

Denial, anger, shock, depression, isolation, pain,, guilt, ,why me,  bargaining, reflection, lonliness, reconstruction, working through acceptance, remorse, emotional protection and eventually HOPE. 

Posters here will express, experience and share impatience, intolerance, frustration, lack on consensus, excruiating waits, confusing results, and a maze of options,  all in absence of a concise  way forward.

Just like many find down the street at the local Oncology office.

This is our lot. 

Some here, (like me), are like the crazy Uncle up in the attic, but all of us, in one way or another, are expressing the raw pain and grief of cancer in one fashion or another.

Just take what you want and leave the rest. 

Just like melanoma, there are no definite answers here or anywhere else, but at least we know where the boat is to cling too during the storm and whom we  might  can share an oar with .

Cheers,

Charlie S

 

Don't get too troubled, Bubbles about this site.  As the founder, Jeff Patterson, often said, "take what you want and leave the rest"  Wise fellow that one.

What one sees here, and what many have yet to understand, is that a cancer diagnosis is very closely aligned  to the human process of grief…..be it through the eyes of a patient or caregiver…..and quite often what is represented in posts here reflects that. 

Denial, anger, shock, depression, isolation, pain,, guilt, ,why me,  bargaining, reflection, lonliness, reconstruction, working through acceptance, remorse, emotional protection and eventually HOPE. 

Posters here will express, experience and share impatience, intolerance, frustration, lack on consensus, excruiating waits, confusing results, and a maze of options,  all in absence of a concise  way forward.

Just like many find down the street at the local Oncology office.

This is our lot. 

Some here, (like me), are like the crazy Uncle up in the attic, but all of us, in one way or another, are expressing the raw pain and grief of cancer in one fashion or another.

Just take what you want and leave the rest. 

Just like melanoma, there are no definite answers here or anywhere else, but at least we know where the boat is to cling too during the storm and whom we  might  can share an oar with .

Cheers,

Charlie S

 

Don't get too troubled, Bubbles about this site.  As the founder, Jeff Patterson, often said, "take what you want and leave the rest"  Wise fellow that one.

What one sees here, and what many have yet to understand, is that a cancer diagnosis is very closely aligned  to the human process of grief…..be it through the eyes of a patient or caregiver…..and quite often what is represented in posts here reflects that. 

Denial, anger, shock, depression, isolation, pain,, guilt, ,why me,  bargaining, reflection, lonliness, reconstruction, working through acceptance, remorse, emotional protection and eventually HOPE. 

Posters here will express, experience and share impatience, intolerance, frustration, lack on consensus, excruiating waits, confusing results, and a maze of options,  all in absence of a concise  way forward.

Just like many find down the street at the local Oncology office.

This is our lot. 

Some here, (like me), are like the crazy Uncle up in the attic, but all of us, in one way or another, are expressing the raw pain and grief of cancer in one fashion or another.

Just take what you want and leave the rest. 

Just like melanoma, there are no definite answers here or anywhere else, but at least we know where the boat is to cling too during the storm and whom we  might  can share an oar with .

Cheers,

Charlie S

 

Bubbles rocks!

Read what helps you, skip what does not. Most of these postings help us all. Even the authorities do not have the answers, and they admit it. Fortunately if any one our kids ge this they will be in a better place then we are, and we are in a better place than our parents were.

Bubbles rocks!

Read what helps you, skip what does not. Most of these postings help us all. Even the authorities do not have the answers, and they admit it. Fortunately if any one our kids ge this they will be in a better place then we are, and we are in a better place than our parents were.

Bubbles rocks!

Read what helps you, skip what does not. Most of these postings help us all. Even the authorities do not have the answers, and they admit it. Fortunately if any one our kids ge this they will be in a better place then we are, and we are in a better place than our parents were.