New here…..and need some help….bad news today

Hi Janet,

I'm sorry to meet you this way and that you are joining this club. No one voluntarily joins. But I'm glad you've found us. This is a great place to good find info, and encouragement.  I trust you'll find both here.

There are folks here who have survived, and eventually thrived.  Stage 4 is scary, but there's a good size group of survivors here.  Keep reading and interacting.  

I'm not stage 4, but rather 3c.  My initial mel was found on my hand 6 years ago.  I, too ,had a bit of a mashed up beginning of treatment, as I was living and working in Asia when I was diagnosed, and the incidence of mel in Asia is pretty rare.  So when I returned to the US, I got myself to a melanoma specialist and did what was recommended at that time (I didn't qualify for any trials).  

I was NED (No Evidence of Disease) for 5 years when a year ago, I found 5 pea sized lumps next to my LDN scar.  So I did a full 4 doses of Ipi and, over the last year, I watched all 5 of those lumps melt away!  I have scans again in the middle of next month, but I am currently NED again.  And while my dr does not use the c-word ("cured") he says it's possible that this treatment is my home run and he's never seen mel return after 2 years of NED.  

So hang in there! Don't read the "odds". At best they're very old. At worse they're depressing and not a predictor of what will happen to you.  It sounds like you're in good hands at Sloan. MRI & CT/PET are the right place to start.  Let us know how things turn out for you.

Hang in there!  This is the scariest part.

Julie

Stage 3C: WLE, SNB, LND, HD-INF, GM-CSF, IPI= NERD

Hi Janet,

I'm sorry to meet you this way and that you are joining this club. No one voluntarily joins. But I'm glad you've found us. This is a great place to good find info, and encouragement.  I trust you'll find both here.

There are folks here who have survived, and eventually thrived.  Stage 4 is scary, but there's a good size group of survivors here.  Keep reading and interacting.  

I'm not stage 4, but rather 3c.  My initial mel was found on my hand 6 years ago.  I, too ,had a bit of a mashed up beginning of treatment, as I was living and working in Asia when I was diagnosed, and the incidence of mel in Asia is pretty rare.  So when I returned to the US, I got myself to a melanoma specialist and did what was recommended at that time (I didn't qualify for any trials).  

I was NED (No Evidence of Disease) for 5 years when a year ago, I found 5 pea sized lumps next to my LDN scar.  So I did a full 4 doses of Ipi and, over the last year, I watched all 5 of those lumps melt away!  I have scans again in the middle of next month, but I am currently NED again.  And while my dr does not use the c-word ("cured") he says it's possible that this treatment is my home run and he's never seen mel return after 2 years of NED.  

So hang in there! Don't read the "odds". At best they're very old. At worse they're depressing and not a predictor of what will happen to you.  It sounds like you're in good hands at Sloan. MRI & CT/PET are the right place to start.  Let us know how things turn out for you.

Hang in there!  This is the scariest part.

Julie

Stage 3C: WLE, SNB, LND, HD-INF, GM-CSF, IPI= NERD

Hi Janet,

I'm sorry to meet you this way and that you are joining this club. No one voluntarily joins. But I'm glad you've found us. This is a great place to good find info, and encouragement.  I trust you'll find both here.

There are folks here who have survived, and eventually thrived.  Stage 4 is scary, but there's a good size group of survivors here.  Keep reading and interacting.  

I'm not stage 4, but rather 3c.  My initial mel was found on my hand 6 years ago.  I, too ,had a bit of a mashed up beginning of treatment, as I was living and working in Asia when I was diagnosed, and the incidence of mel in Asia is pretty rare.  So when I returned to the US, I got myself to a melanoma specialist and did what was recommended at that time (I didn't qualify for any trials).  

I was NED (No Evidence of Disease) for 5 years when a year ago, I found 5 pea sized lumps next to my LDN scar.  So I did a full 4 doses of Ipi and, over the last year, I watched all 5 of those lumps melt away!  I have scans again in the middle of next month, but I am currently NED again.  And while my dr does not use the c-word ("cured") he says it's possible that this treatment is my home run and he's never seen mel return after 2 years of NED.  

So hang in there! Don't read the "odds". At best they're very old. At worse they're depressing and not a predictor of what will happen to you.  It sounds like you're in good hands at Sloan. MRI & CT/PET are the right place to start.  Let us know how things turn out for you.

Hang in there!  This is the scariest part.

Julie

Stage 3C: WLE, SNB, LND, HD-INF, GM-CSF, IPI= NERD

From stage nothing to Stage 4 for over 17 months and still in the fight. From what I've heard and read sloan is one of and maybe the best in the nation for melanoma. Dr Wolchok is the rock star doc there that I read about.

Artie

From stage nothing to Stage 4 for over 17 months and still in the fight. From what I've heard and read sloan is one of and maybe the best in the nation for melanoma. Dr Wolchok is the rock star doc there that I read about.

Artie

From stage nothing to Stage 4 for over 17 months and still in the fight. From what I've heard and read sloan is one of and maybe the best in the nation for melanoma. Dr Wolchok is the rock star doc there that I read about.

Artie

Janet, there is an increasing number of folks who have done well.  I was Stage 4 back in 1992 with mets to both lungs back when there were not the options available now.  I had a complete response to IL-2 and have never had a recurrence; it's now 22 years later!  Even though melanoma was a landmark event in my life, I do not think about it much now.  I hope this will be encouraging to you.  Best wishes, Rick

Janet, there is an increasing number of folks who have done well.  I was Stage 4 back in 1992 with mets to both lungs back when there were not the options available now.  I had a complete response to IL-2 and have never had a recurrence; it's now 22 years later!  Even though melanoma was a landmark event in my life, I do not think about it much now.  I hope this will be encouraging to you.  Best wishes, Rick

Janet, there is an increasing number of folks who have done well.  I was Stage 4 back in 1992 with mets to both lungs back when there were not the options available now.  I had a complete response to IL-2 and have never had a recurrence; it's now 22 years later!  Even though melanoma was a landmark event in my life, I do not think about it much now.  I hope this will be encouraging to you.  Best wishes, Rick

It is definitely a life-changer…. but not necessarily a life-ender as you can see from others that have posted on here years after being diagnosed at Stage 3 or 4.  For me, so far, it has actually improved my life in that I was forced to take a hard look at what really mattered to me.  I know time is so precious now so I don't waste any of it on stressful situations or toxic soul-sucking people.  It's been very freeing.  In a "hail mary" effort, I radically changed how I ate and approached life overall.  Tough to say what impact its having on the cancer if any, but its had a profound effect on me.  I feel better and am enjoying life in ways I never thought possible before.  My quality of life is off the charts these days.  I never would have experienced this if not for my diagnosis.  I am optimistic about the treatment options availalbe today (there are so many to try its hard to know where to start).  But that sure wasn't my attitude when I was first diagnosed.  It took about a month of necessary grieving before I could come out the other side.  None of us have a guarantee.   You could be hit by a bus tomorrow.  I hope you come to treasure and appreciate each beautiful day as it comes very soon.  And I wish you good health!

Cheers

It is definitely a life-changer…. but not necessarily a life-ender as you can see from others that have posted on here years after being diagnosed at Stage 3 or 4.  For me, so far, it has actually improved my life in that I was forced to take a hard look at what really mattered to me.  I know time is so precious now so I don't waste any of it on stressful situations or toxic soul-sucking people.  It's been very freeing.  In a "hail mary" effort, I radically changed how I ate and approached life overall.  Tough to say what impact its having on the cancer if any, but its had a profound effect on me.  I feel better and am enjoying life in ways I never thought possible before.  My quality of life is off the charts these days.  I never would have experienced this if not for my diagnosis.  I am optimistic about the treatment options availalbe today (there are so many to try its hard to know where to start).  But that sure wasn't my attitude when I was first diagnosed.  It took about a month of necessary grieving before I could come out the other side.  None of us have a guarantee.   You could be hit by a bus tomorrow.  I hope you come to treasure and appreciate each beautiful day as it comes very soon.  And I wish you good health!

Cheers

It is definitely a life-changer…. but not necessarily a life-ender as you can see from others that have posted on here years after being diagnosed at Stage 3 or 4.  For me, so far, it has actually improved my life in that I was forced to take a hard look at what really mattered to me.  I know time is so precious now so I don't waste any of it on stressful situations or toxic soul-sucking people.  It's been very freeing.  In a "hail mary" effort, I radically changed how I ate and approached life overall.  Tough to say what impact its having on the cancer if any, but its had a profound effect on me.  I feel better and am enjoying life in ways I never thought possible before.  My quality of life is off the charts these days.  I never would have experienced this if not for my diagnosis.  I am optimistic about the treatment options availalbe today (there are so many to try its hard to know where to start).  But that sure wasn't my attitude when I was first diagnosed.  It took about a month of necessary grieving before I could come out the other side.  None of us have a guarantee.   You could be hit by a bus tomorrow.  I hope you come to treasure and appreciate each beautiful day as it comes very soon.  And I wish you good health!

Cheers

Sorry to hear this but I question the stage 4 diagnosis.  Subcutaneous lesions or in- transit lesions near your primary AND STILL WITHIN THE SAME LYMPH NODE BASIN are considered stage 3.  So I would ask specifically how the stage 4 diagnosis was achieved.  

http://emedicine.medscape.com/article/2007147-overview

i question any lesions being in the close proximity of your primary or regional lymph nodes as being "distant" and distant is the only way you get to stage 4.  Now if your scans find other mets, that is different.  I point this out because staging is important when it comes to treatments.  Maybe your onc will clarify this at your appointment.

Lots of new drugs in the last few years so survival stats are meaningless.  Ask lots of questions and do your own research!

Sorry to hear this but I question the stage 4 diagnosis.  Subcutaneous lesions or in- transit lesions near your primary AND STILL WITHIN THE SAME LYMPH NODE BASIN are considered stage 3.  So I would ask specifically how the stage 4 diagnosis was achieved.  

http://emedicine.medscape.com/article/2007147-overview

i question any lesions being in the close proximity of your primary or regional lymph nodes as being "distant" and distant is the only way you get to stage 4.  Now if your scans find other mets, that is different.  I point this out because staging is important when it comes to treatments.  Maybe your onc will clarify this at your appointment.

Lots of new drugs in the last few years so survival stats are meaningless.  Ask lots of questions and do your own research!

Sorry to hear this but I question the stage 4 diagnosis.  Subcutaneous lesions or in- transit lesions near your primary AND STILL WITHIN THE SAME LYMPH NODE BASIN are considered stage 3.  So I would ask specifically how the stage 4 diagnosis was achieved.  

http://emedicine.medscape.com/article/2007147-overview

i question any lesions being in the close proximity of your primary or regional lymph nodes as being "distant" and distant is the only way you get to stage 4.  Now if your scans find other mets, that is different.  I point this out because staging is important when it comes to treatments.  Maybe your onc will clarify this at your appointment.

Lots of new drugs in the last few years so survival stats are meaningless.  Ask lots of questions and do your own research!

Hey Rick,

It is because of people like you that I opted for IL-2 4.5 years ago when I progressed from 2A to IV 7 years after the fact….  Anyway, VATS for a small lung met and 23 bags of IL-2 later am still NED almost 5 years.  Probably will die from somthing simple like a heart attack LOL, and many many years from now.

(Though the pulmonary embolus the night of my lung surgery came pretty damn close, or so it seemed at the time.).

I also am having a durable prolonged response to surgery and IL-2.

Best of luck Janet,

this place is the best and as an "official old timer", there are many more tools in the tool box to beat this thing.  Make sure to get your mel genetically tested for mutations so you know what has a better chance drug wise.

IMHO – 1.5 mm is intermediate risk.  Amelanocytic mel is a &*$%^$^&#@!  Glad it was at least caught though.

Aloha,

Kim

Hey Rick,

It is because of people like you that I opted for IL-2 4.5 years ago when I progressed from 2A to IV 7 years after the fact….  Anyway, VATS for a small lung met and 23 bags of IL-2 later am still NED almost 5 years.  Probably will die from somthing simple like a heart attack LOL, and many many years from now.

(Though the pulmonary embolus the night of my lung surgery came pretty damn close, or so it seemed at the time.).

I also am having a durable prolonged response to surgery and IL-2.

Best of luck Janet,

this place is the best and as an "official old timer", there are many more tools in the tool box to beat this thing.  Make sure to get your mel genetically tested for mutations so you know what has a better chance drug wise.

IMHO – 1.5 mm is intermediate risk.  Amelanocytic mel is a &*$%^$^&#@!  Glad it was at least caught though.

Aloha,

Kim

Hey Rick,

It is because of people like you that I opted for IL-2 4.5 years ago when I progressed from 2A to IV 7 years after the fact….  Anyway, VATS for a small lung met and 23 bags of IL-2 later am still NED almost 5 years.  Probably will die from somthing simple like a heart attack LOL, and many many years from now.

(Though the pulmonary embolus the night of my lung surgery came pretty damn close, or so it seemed at the time.).

I also am having a durable prolonged response to surgery and IL-2.

Best of luck Janet,

this place is the best and as an "official old timer", there are many more tools in the tool box to beat this thing.  Make sure to get your mel genetically tested for mutations so you know what has a better chance drug wise.

IMHO – 1.5 mm is intermediate risk.  Amelanocytic mel is a &*$%^$^&#@!  Glad it was at least caught though.

Aloha,

Kim

Hi Janet 

I am also new here. Diagnosed stage IV in June, no known primary. I only search the trial results on the web as everything else is out of date as soon as it is written. Melanoma research and treatments are in an amazing phase, so get the best doctor you can and they will be up with the latest and I wish you and your husband many happy years more together. I was not doing too well 8 weeks ago and have been getting pembrolizumab and life is almost back to normal. 

Jubes

Hi Janet 

I am also new here. Diagnosed stage IV in June, no known primary. I only search the trial results on the web as everything else is out of date as soon as it is written. Melanoma research and treatments are in an amazing phase, so get the best doctor you can and they will be up with the latest and I wish you and your husband many happy years more together. I was not doing too well 8 weeks ago and have been getting pembrolizumab and life is almost back to normal. 

Jubes

Hi Janet 

I am also new here. Diagnosed stage IV in June, no known primary. I only search the trial results on the web as everything else is out of date as soon as it is written. Melanoma research and treatments are in an amazing phase, so get the best doctor you can and they will be up with the latest and I wish you and your husband many happy years more together. I was not doing too well 8 weeks ago and have been getting pembrolizumab and life is almost back to normal. 

Jubes

JANET,

FIrst and foremost I am so sorry to hear this news.  I know it's devastating and frightening..  If you can, and I know it's hard, TAKE A DEEP BREATH  I am gld your doctor is doing the MRI and the Scans.. SMART MOVE   

It doesn't mean the melanoma has spread.  It means he wants to make sure every other organ is OK  Better to be safe than sorry.  

Where are you being treated?  Do you see a Melanoma specialist.  Who ordered the scans for you?  Smart doctor  

MPIP is by far the best place for support  I came here for many many years when I was dx with lung and then brain mets  The support was beyond anythign I could have imagined,  To this day I am still friends with and in touch with many MPIP people.  There are also some groups on FB  Janert, the one place I loved here was chat.  We would be ther for hours sometimes.  Not alwasy Melanoma talk , but we were able to lauhg at times, mostly at ourselves,  WE got incredible information here and the knowledge is amazing,  

Hang in there!!! Please know i am here for you

Love and Ligh

Carole K.

JANET,

FIrst and foremost I am so sorry to hear this news.  I know it's devastating and frightening..  If you can, and I know it's hard, TAKE A DEEP BREATH  I am gld your doctor is doing the MRI and the Scans.. SMART MOVE   

It doesn't mean the melanoma has spread.  It means he wants to make sure every other organ is OK  Better to be safe than sorry.  

Where are you being treated?  Do you see a Melanoma specialist.  Who ordered the scans for you?  Smart doctor  

MPIP is by far the best place for support  I came here for many many years when I was dx with lung and then brain mets  The support was beyond anythign I could have imagined,  To this day I am still friends with and in touch with many MPIP people.  There are also some groups on FB  Janert, the one place I loved here was chat.  We would be ther for hours sometimes.  Not alwasy Melanoma talk , but we were able to lauhg at times, mostly at ourselves,  WE got incredible information here and the knowledge is amazing,  

Hang in there!!! Please know i am here for you

Love and Ligh

Carole K.

JANET,

FIrst and foremost I am so sorry to hear this news.  I know it's devastating and frightening..  If you can, and I know it's hard, TAKE A DEEP BREATH  I am gld your doctor is doing the MRI and the Scans.. SMART MOVE   

It doesn't mean the melanoma has spread.  It means he wants to make sure every other organ is OK  Better to be safe than sorry.  

Where are you being treated?  Do you see a Melanoma specialist.  Who ordered the scans for you?  Smart doctor  

MPIP is by far the best place for support  I came here for many many years when I was dx with lung and then brain mets  The support was beyond anythign I could have imagined,  To this day I am still friends with and in touch with many MPIP people.  There are also some groups on FB  Janert, the one place I loved here was chat.  We would be ther for hours sometimes.  Not alwasy Melanoma talk , but we were able to lauhg at times, mostly at ourselves,  WE got incredible information here and the knowledge is amazing,  

Hang in there!!! Please know i am here for you

Love and Ligh

Carole K.