Need to Hear Positive Stories

Well, I'm not exactly a shining beacon of hope at the moment, but I do know how you feel. First diagnosed in Jan 2011 at stage III with 1 affected lypmh node of the 20 or so they removed. All well and good until June 2012 when I had a recurrance in the area of the lympn node resection, scans and MRI all said that was the only spot and thinking was that it was a missed lymph node. I was a bit bothered, but a little more surgery and we thought we'd be done. Just before Thanksgiving I had a small bump on my abdomen biopsied and it came back as distant metastasis. 

Each time it comes back it gets harder for me. Like you, I'm not a pessimist and have always had every determination to beat this, especially considering I just turned 32- far too many things I still want to accomplish with my life.  However, it's very very frustrating and scary each time something pops up- especially when you had recent scans, etc that showed nothing. It can be terrifying how quickly something seems to appear. 

Thankfully I have a wonderful husband who is there for me- I can be upset and scared, cry, scream, and do whatever I need to do and he's always there to pick up the pieces and tell me I'm going to be ok. Eventually I regain my senses and we keep going- you will too. I'm sure you know by now that the treatment options are getting better and better every day and there are more options coming all the time. Try not to get too down, but it's ok to be upset for a while. 

Best of luck to you and hoping this is the last time you ever have to deal with this frustration.

-Eva

Well, I'm not exactly a shining beacon of hope at the moment, but I do know how you feel. First diagnosed in Jan 2011 at stage III with 1 affected lypmh node of the 20 or so they removed. All well and good until June 2012 when I had a recurrance in the area of the lympn node resection, scans and MRI all said that was the only spot and thinking was that it was a missed lymph node. I was a bit bothered, but a little more surgery and we thought we'd be done. Just before Thanksgiving I had a small bump on my abdomen biopsied and it came back as distant metastasis. 

Each time it comes back it gets harder for me. Like you, I'm not a pessimist and have always had every determination to beat this, especially considering I just turned 32- far too many things I still want to accomplish with my life.  However, it's very very frustrating and scary each time something pops up- especially when you had recent scans, etc that showed nothing. It can be terrifying how quickly something seems to appear. 

Thankfully I have a wonderful husband who is there for me- I can be upset and scared, cry, scream, and do whatever I need to do and he's always there to pick up the pieces and tell me I'm going to be ok. Eventually I regain my senses and we keep going- you will too. I'm sure you know by now that the treatment options are getting better and better every day and there are more options coming all the time. Try not to get too down, but it's ok to be upset for a while. 

Best of luck to you and hoping this is the last time you ever have to deal with this frustration.

-Eva

Well, I'm not exactly a shining beacon of hope at the moment, but I do know how you feel. First diagnosed in Jan 2011 at stage III with 1 affected lypmh node of the 20 or so they removed. All well and good until June 2012 when I had a recurrance in the area of the lympn node resection, scans and MRI all said that was the only spot and thinking was that it was a missed lymph node. I was a bit bothered, but a little more surgery and we thought we'd be done. Just before Thanksgiving I had a small bump on my abdomen biopsied and it came back as distant metastasis. 

Each time it comes back it gets harder for me. Like you, I'm not a pessimist and have always had every determination to beat this, especially considering I just turned 32- far too many things I still want to accomplish with my life.  However, it's very very frustrating and scary each time something pops up- especially when you had recent scans, etc that showed nothing. It can be terrifying how quickly something seems to appear. 

Thankfully I have a wonderful husband who is there for me- I can be upset and scared, cry, scream, and do whatever I need to do and he's always there to pick up the pieces and tell me I'm going to be ok. Eventually I regain my senses and we keep going- you will too. I'm sure you know by now that the treatment options are getting better and better every day and there are more options coming all the time. Try not to get too down, but it's ok to be upset for a while. 

Best of luck to you and hoping this is the last time you ever have to deal with this frustration.

-Eva

Hi Josh, as you know I am dealing with my own new Stage 3 diagnosis but wanted to give you some encouragement. I have been a nurse for 30 years and am currently working as a Corporate Quality Specialist, trying to ensure that our patients get the appropriate and best standard of care. I have been researching Melanoma for the past 3 months now and though it’s scary as hell, this is what I do for a living…..really a lot harder now that I am doing it for myself. Just wanted you to know that if it’s a local or even regional occurrence, that is better, It’s not distant. If they didn’t find that it’s a node, that is better, less chance for distant spread. If your LDH isn’t showing anything like an elevation, that is better related to your reoccurrence. LDH is used in late stage 3 and 4 and has some prognostic value to the worse if it is elevated. And helps MDs know response to a particular treatment by showing a decrease in an elevated level. This isn’t typically used for earlier stages as there is no value. I had a long talk session with my surgeon Dr. Sabel, who is known nationally for his research on Melanoma. We discussed the Cox models and Starz models in relation to prognosis. There are a lot of variables on prognosis as related to Breslow Depth, SNL positivity ( which I had), where the cells are located within the node, other nodes being positive, ulceration, mitosis, etc. of the primary, etc. so I guess what I am saying is the same everyone else is, each person is unique, not a prognosis number. I have seen many posts while researching the internet of others having reoccurrences and they are doing well several years out still NED. I understand how you are feeling, I too am typically a very private and stoic person, but have been a basket case for the past 3 months, even totaled my car in an accident. Something I have never done. I went to the MD and got a prescription for an antidepressant because I am so overcome by anxiety, something else that has never happened to me. So, I had to take a stand back and look at it clinically, this is what I do in my job, but it sure is easier when it isn’t personal! I elected to have a groin dissection which is scheduled for 10 days from now. Here is my feel good story for you. My husband was diagnosed stage 3 back in 1986. He has a skin graft the size of an orange on his back, very close to his neck. The Dr. Said high chance of reoccurrence. The depth of the graft goes down to right above his spine. He is still alive and kicking! Hasn’t even had a reoccurrence. So, yes, people live and even with a reoccurrence, as I have seen on Melanoma forums, they are still kicking and living life. This is something for us to hang on to. Will be thinking of you.

Hi Josh, as you know I am dealing with my own new Stage 3 diagnosis but wanted to give you some encouragement. I have been a nurse for 30 years and am currently working as a Corporate Quality Specialist, trying to ensure that our patients get the appropriate and best standard of care. I have been researching Melanoma for the past 3 months now and though it’s scary as hell, this is what I do for a living…..really a lot harder now that I am doing it for myself. Just wanted you to know that if it’s a local or even regional occurrence, that is better, It’s not distant. If they didn’t find that it’s a node, that is better, less chance for distant spread. If your LDH isn’t showing anything like an elevation, that is better related to your reoccurrence. LDH is used in late stage 3 and 4 and has some prognostic value to the worse if it is elevated. And helps MDs know response to a particular treatment by showing a decrease in an elevated level. This isn’t typically used for earlier stages as there is no value. I had a long talk session with my surgeon Dr. Sabel, who is known nationally for his research on Melanoma. We discussed the Cox models and Starz models in relation to prognosis. There are a lot of variables on prognosis as related to Breslow Depth, SNL positivity ( which I had), where the cells are located within the node, other nodes being positive, ulceration, mitosis, etc. of the primary, etc. so I guess what I am saying is the same everyone else is, each person is unique, not a prognosis number. I have seen many posts while researching the internet of others having reoccurrences and they are doing well several years out still NED. I understand how you are feeling, I too am typically a very private and stoic person, but have been a basket case for the past 3 months, even totaled my car in an accident. Something I have never done. I went to the MD and got a prescription for an antidepressant because I am so overcome by anxiety, something else that has never happened to me. So, I had to take a stand back and look at it clinically, this is what I do in my job, but it sure is easier when it isn’t personal! I elected to have a groin dissection which is scheduled for 10 days from now. Here is my feel good story for you. My husband was diagnosed stage 3 back in 1986. He has a skin graft the size of an orange on his back, very close to his neck. The Dr. Said high chance of reoccurrence. The depth of the graft goes down to right above his spine. He is still alive and kicking! Hasn’t even had a reoccurrence. So, yes, people live and even with a reoccurrence, as I have seen on Melanoma forums, they are still kicking and living life. This is something for us to hang on to. Will be thinking of you.

Hi Josh, as you know I am dealing with my own new Stage 3 diagnosis but wanted to give you some encouragement. I have been a nurse for 30 years and am currently working as a Corporate Quality Specialist, trying to ensure that our patients get the appropriate and best standard of care. I have been researching Melanoma for the past 3 months now and though it’s scary as hell, this is what I do for a living…..really a lot harder now that I am doing it for myself. Just wanted you to know that if it’s a local or even regional occurrence, that is better, It’s not distant. If they didn’t find that it’s a node, that is better, less chance for distant spread. If your LDH isn’t showing anything like an elevation, that is better related to your reoccurrence. LDH is used in late stage 3 and 4 and has some prognostic value to the worse if it is elevated. And helps MDs know response to a particular treatment by showing a decrease in an elevated level. This isn’t typically used for earlier stages as there is no value. I had a long talk session with my surgeon Dr. Sabel, who is known nationally for his research on Melanoma. We discussed the Cox models and Starz models in relation to prognosis. There are a lot of variables on prognosis as related to Breslow Depth, SNL positivity ( which I had), where the cells are located within the node, other nodes being positive, ulceration, mitosis, etc. of the primary, etc. so I guess what I am saying is the same everyone else is, each person is unique, not a prognosis number. I have seen many posts while researching the internet of others having reoccurrences and they are doing well several years out still NED. I understand how you are feeling, I too am typically a very private and stoic person, but have been a basket case for the past 3 months, even totaled my car in an accident. Something I have never done. I went to the MD and got a prescription for an antidepressant because I am so overcome by anxiety, something else that has never happened to me. So, I had to take a stand back and look at it clinically, this is what I do in my job, but it sure is easier when it isn’t personal! I elected to have a groin dissection which is scheduled for 10 days from now. Here is my feel good story for you. My husband was diagnosed stage 3 back in 1986. He has a skin graft the size of an orange on his back, very close to his neck. The Dr. Said high chance of reoccurrence. The depth of the graft goes down to right above his spine. He is still alive and kicking! Hasn’t even had a reoccurrence. So, yes, people live and even with a reoccurrence, as I have seen on Melanoma forums, they are still kicking and living life. This is something for us to hang on to. Will be thinking of you.

Josh:

I am not a melanoma patient, but have the very good fortune of interacting with a lot of patients on a routine basis.  Earlier today I was at one of our patient symposia.  We had two people in the room who are 10+ year Stage IV survivors.  One is now the chair of our board!  We had another board member there who is also a Stage IV patient, and has been Stage IV for about 4 years.  She is still in active treatment but is going strong.

In the morning I will be in Morristown, NJ for our Miles for Melanoma event there.  I know one person who is planning to attend who has had a series of recurrences off and on for about 15 years.  He is busy and active and has a good career and great quality of life.  From time to time the melanoma rears its ugly head.  He deals with it and moves on.

This board is full of long-time survivors and their stories are a great source of hope and encouragement.

We all know that melanoma is a serious diagnosis, but these patients are a great reminder that your life and your melanoma is not defined by statistics or the history of how a large group of patients have done in the past.

Tim–MRF 

Josh:

I am not a melanoma patient, but have the very good fortune of interacting with a lot of patients on a routine basis.  Earlier today I was at one of our patient symposia.  We had two people in the room who are 10+ year Stage IV survivors.  One is now the chair of our board!  We had another board member there who is also a Stage IV patient, and has been Stage IV for about 4 years.  She is still in active treatment but is going strong.

In the morning I will be in Morristown, NJ for our Miles for Melanoma event there.  I know one person who is planning to attend who has had a series of recurrences off and on for about 15 years.  He is busy and active and has a good career and great quality of life.  From time to time the melanoma rears its ugly head.  He deals with it and moves on.

This board is full of long-time survivors and their stories are a great source of hope and encouragement.

We all know that melanoma is a serious diagnosis, but these patients are a great reminder that your life and your melanoma is not defined by statistics or the history of how a large group of patients have done in the past.

Tim–MRF 

Josh:

I am not a melanoma patient, but have the very good fortune of interacting with a lot of patients on a routine basis.  Earlier today I was at one of our patient symposia.  We had two people in the room who are 10+ year Stage IV survivors.  One is now the chair of our board!  We had another board member there who is also a Stage IV patient, and has been Stage IV for about 4 years.  She is still in active treatment but is going strong.

In the morning I will be in Morristown, NJ for our Miles for Melanoma event there.  I know one person who is planning to attend who has had a series of recurrences off and on for about 15 years.  He is busy and active and has a good career and great quality of life.  From time to time the melanoma rears its ugly head.  He deals with it and moves on.

This board is full of long-time survivors and their stories are a great source of hope and encouragement.

We all know that melanoma is a serious diagnosis, but these patients are a great reminder that your life and your melanoma is not defined by statistics or the history of how a large group of patients have done in the past.

Tim–MRF 

Josh, I'm one of the long-term survivors.  Even though it took several months for me to be diagnosed back in 1991, and I was Stage 4 at diagnosis, I'm here today in good health.  I was 35 when diagnosed, and now I'm 57.  Now I'm more concerned with the normal consequences of aging than I am about melanoma, though I'm still vigilant about protecting my skin.

When I was diagnosed and learned that I had numerous tumors in both lungs, I was referred from my local oncologist here in NC to Duke who in turn referred me to NIH.  Even though my TIL culture failed and I didn't begin IL-2 therapy until probably 4-5 months after diagnosis, I was most fortunate to have a complete response to therapy and have never had a recurrence.

I don't know why I did well, when those around me at the NIH clinic who I met and made friends with, and who I really enjoyed getting to know, did not also do well.  I remain most thankful for my great fortune.  It's very exciting to me to see the developments in melanoma treatment when, for so long, not many options were there.

If you saw the movie "The Shawshank Redemption," you may remember the line, "Hope is a good thing, maybe the best of things."  There's a lot of truth in that statement.  Hope can really keep you going when things are otherwise bad. 

Best wishes to you for good health and happiness.

Josh, I'm one of the long-term survivors.  Even though it took several months for me to be diagnosed back in 1991, and I was Stage 4 at diagnosis, I'm here today in good health.  I was 35 when diagnosed, and now I'm 57.  Now I'm more concerned with the normal consequences of aging than I am about melanoma, though I'm still vigilant about protecting my skin.

When I was diagnosed and learned that I had numerous tumors in both lungs, I was referred from my local oncologist here in NC to Duke who in turn referred me to NIH.  Even though my TIL culture failed and I didn't begin IL-2 therapy until probably 4-5 months after diagnosis, I was most fortunate to have a complete response to therapy and have never had a recurrence.

I don't know why I did well, when those around me at the NIH clinic who I met and made friends with, and who I really enjoyed getting to know, did not also do well.  I remain most thankful for my great fortune.  It's very exciting to me to see the developments in melanoma treatment when, for so long, not many options were there.

If you saw the movie "The Shawshank Redemption," you may remember the line, "Hope is a good thing, maybe the best of things."  There's a lot of truth in that statement.  Hope can really keep you going when things are otherwise bad. 

Best wishes to you for good health and happiness.

Josh, I'm one of the long-term survivors.  Even though it took several months for me to be diagnosed back in 1991, and I was Stage 4 at diagnosis, I'm here today in good health.  I was 35 when diagnosed, and now I'm 57.  Now I'm more concerned with the normal consequences of aging than I am about melanoma, though I'm still vigilant about protecting my skin.

When I was diagnosed and learned that I had numerous tumors in both lungs, I was referred from my local oncologist here in NC to Duke who in turn referred me to NIH.  Even though my TIL culture failed and I didn't begin IL-2 therapy until probably 4-5 months after diagnosis, I was most fortunate to have a complete response to therapy and have never had a recurrence.

I don't know why I did well, when those around me at the NIH clinic who I met and made friends with, and who I really enjoyed getting to know, did not also do well.  I remain most thankful for my great fortune.  It's very exciting to me to see the developments in melanoma treatment when, for so long, not many options were there.

If you saw the movie "The Shawshank Redemption," you may remember the line, "Hope is a good thing, maybe the best of things."  There's a lot of truth in that statement.  Hope can really keep you going when things are otherwise bad. 

Best wishes to you for good health and happiness.

Josh, I know how very upsetting it is when faced with a recurrence. I was first diagnosed with mel in 2002. A recurrence in 2005 put me in stg IV category. 2005! Eight years ago 🙂   . So, take heart..there are many of us around this board that have been on this journey for some time. I am sorry for this set-back for you, but want you to take hope and find encouragement here.

Tina

Josh, I know how very upsetting it is when faced with a recurrence. I was first diagnosed with mel in 2002. A recurrence in 2005 put me in stg IV category. 2005! Eight years ago 🙂   . So, take heart..there are many of us around this board that have been on this journey for some time. I am sorry for this set-back for you, but want you to take hope and find encouragement here.

Tina

Josh, I know how very upsetting it is when faced with a recurrence. I was first diagnosed with mel in 2002. A recurrence in 2005 put me in stg IV category. 2005! Eight years ago 🙂   . So, take heart..there are many of us around this board that have been on this journey for some time. I am sorry for this set-back for you, but want you to take hope and find encouragement here.

Tina

Josh,

First of all, there is never a time when you can be too vigilante about melanoma, so don't worry about questioning your doctors or having a down day now and again.

I've been dealing with mel for 24 yrs, the last 8 as a stage IV (NED since 2007). It is an insidious little beast that can tear down the strongest of people from time to time. Sounds like you already have a handle on how best to pick yourself up by reaching out to others and seeking to maintain a positive attitude as much as possible.

So allow yourself the opportunities to battle the beast mentally and emotionally. Put it in its rightful place in the attic of your mind and then out and enjoy the beauty of the day, the company of good friends, and the love of a strong family.

Take care; God Bless,

Karen

 

 

 

Josh,

First of all, there is never a time when you can be too vigilante about melanoma, so don't worry about questioning your doctors or having a down day now and again.

I've been dealing with mel for 24 yrs, the last 8 as a stage IV (NED since 2007). It is an insidious little beast that can tear down the strongest of people from time to time. Sounds like you already have a handle on how best to pick yourself up by reaching out to others and seeking to maintain a positive attitude as much as possible.

So allow yourself the opportunities to battle the beast mentally and emotionally. Put it in its rightful place in the attic of your mind and then out and enjoy the beauty of the day, the company of good friends, and the love of a strong family.

Take care; God Bless,

Karen

 

 

 

Josh,

First of all, there is never a time when you can be too vigilante about melanoma, so don't worry about questioning your doctors or having a down day now and again.

I've been dealing with mel for 24 yrs, the last 8 as a stage IV (NED since 2007). It is an insidious little beast that can tear down the strongest of people from time to time. Sounds like you already have a handle on how best to pick yourself up by reaching out to others and seeking to maintain a positive attitude as much as possible.

So allow yourself the opportunities to battle the beast mentally and emotionally. Put it in its rightful place in the attic of your mind and then out and enjoy the beauty of the day, the company of good friends, and the love of a strong family.

Take care; God Bless,

Karen