please any good news stories of non reacurrance

Dear Lee,

I fear you are not going to be hearing too many happy bedtime stories regarding melanoma.  Two different oncologists have looked at me very sadly and said, "Melanoma is the diagnosis that gives cancer a bad name."  I was diagnosed with melanoma in 2003 when only 39 years of age. I progressed to stage IV with brain and lung mets in 2009.  I am not telling you this to depress you, rather to encourage you to change your perspective.  Has this been a battle?  Absolutely!  Would I erase melanoma from my life and yours and everybody else on this forum if I could? In a heartbeat!!!  But, I can't.  Some folks live for many, many years with melanoma categorized as Stage III. (Made it a while myself!)  The bottom line is that none of us get out of this world alive!  I work, I play, I love, I dance.  I enjoy my friends and family.  I still do the things I love.  Do I have the scars and pain that show I also deal with melanoma everyday?  In spades.  But, it is still a wonderful life.  And yours can be too.

Wishing you the very best.  Celeste 

Dear Lee,

I fear you are not going to be hearing too many happy bedtime stories regarding melanoma.  Two different oncologists have looked at me very sadly and said, "Melanoma is the diagnosis that gives cancer a bad name."  I was diagnosed with melanoma in 2003 when only 39 years of age. I progressed to stage IV with brain and lung mets in 2009.  I am not telling you this to depress you, rather to encourage you to change your perspective.  Has this been a battle?  Absolutely!  Would I erase melanoma from my life and yours and everybody else on this forum if I could? In a heartbeat!!!  But, I can't.  Some folks live for many, many years with melanoma categorized as Stage III. (Made it a while myself!)  The bottom line is that none of us get out of this world alive!  I work, I play, I love, I dance.  I enjoy my friends and family.  I still do the things I love.  Do I have the scars and pain that show I also deal with melanoma everyday?  In spades.  But, it is still a wonderful life.  And yours can be too.

Wishing you the very best.  Celeste 

Dear Lee,

I fear you are not going to be hearing too many happy bedtime stories regarding melanoma.  Two different oncologists have looked at me very sadly and said, "Melanoma is the diagnosis that gives cancer a bad name."  I was diagnosed with melanoma in 2003 when only 39 years of age. I progressed to stage IV with brain and lung mets in 2009.  I am not telling you this to depress you, rather to encourage you to change your perspective.  Has this been a battle?  Absolutely!  Would I erase melanoma from my life and yours and everybody else on this forum if I could? In a heartbeat!!!  But, I can't.  Some folks live for many, many years with melanoma categorized as Stage III. (Made it a while myself!)  The bottom line is that none of us get out of this world alive!  I work, I play, I love, I dance.  I enjoy my friends and family.  I still do the things I love.  Do I have the scars and pain that show I also deal with melanoma everyday?  In spades.  But, it is still a wonderful life.  And yours can be too.

Wishing you the very best.  Celeste 

Hi Lee, I was diagnosed Stage IIIc in 2003, did a biochemotherapy clinical trial, and haven't had a recurrence.  There are LOTS of long term Stage III survivors out there.  Best wishes to you.

Rich

http://www.hotelmelanoma.blogspot.com

Hi Lee, I was diagnosed Stage IIIc in 2003, did a biochemotherapy clinical trial, and haven't had a recurrence.  There are LOTS of long term Stage III survivors out there.  Best wishes to you.

Rich

http://www.hotelmelanoma.blogspot.com

Hi Lee, I was diagnosed Stage IIIc in 2003, did a biochemotherapy clinical trial, and haven't had a recurrence.  There are LOTS of long term Stage III survivors out there.  Best wishes to you.

Rich

http://www.hotelmelanoma.blogspot.com

Hi Lee,

There are lots of people out there many years out after their diagnosis with no recurrences.  The thing is, if you were say….5 years out, would YOU still be posting on this BB?  Most people move on after being NED for a suitable time.  If they are not in active treatment, there is less reason to live and breathe melanoma, and more incentive to move on and live life!  There are some veterans that stick around to help, but most move on over time.  So don't be discouraged by your lack of response.  I happen to know many who have left this site but are still alive and kicking and doing well many years out.

Hang in there,

Janner

Hi Lee,

There are lots of people out there many years out after their diagnosis with no recurrences.  The thing is, if you were say….5 years out, would YOU still be posting on this BB?  Most people move on after being NED for a suitable time.  If they are not in active treatment, there is less reason to live and breathe melanoma, and more incentive to move on and live life!  There are some veterans that stick around to help, but most move on over time.  So don't be discouraged by your lack of response.  I happen to know many who have left this site but are still alive and kicking and doing well many years out.

Hang in there,

Janner

Hi Lee,

There are lots of people out there many years out after their diagnosis with no recurrences.  The thing is, if you were say….5 years out, would YOU still be posting on this BB?  Most people move on after being NED for a suitable time.  If they are not in active treatment, there is less reason to live and breathe melanoma, and more incentive to move on and live life!  There are some veterans that stick around to help, but most move on over time.  So don't be discouraged by your lack of response.  I happen to know many who have left this site but are still alive and kicking and doing well many years out.

Hang in there,

Janner

I can hardly call myself a veteran, Lee, but I am a stage 4 living a normal life while awaiting my next scan results..  I was stage 3C for almost 2 years, after surgery, radiation and Interferon.  I'm a former marathon runner who has gone back to running to keep in shape for whatever lies ahead for me in the melanoma battle.  I work full time including a fair amount of travel.  Every day I try to do what I need to do to keep my body and mind healthy….run, rest, call a friend, spend some time with family.  .Try to enjoy life.  Melanoma sucks and it takes an enormous toll on patient, caregiver and family. But there's still life to be enjoyed. 

FrankD

I can hardly call myself a veteran, Lee, but I am a stage 4 living a normal life while awaiting my next scan results..  I was stage 3C for almost 2 years, after surgery, radiation and Interferon.  I'm a former marathon runner who has gone back to running to keep in shape for whatever lies ahead for me in the melanoma battle.  I work full time including a fair amount of travel.  Every day I try to do what I need to do to keep my body and mind healthy….run, rest, call a friend, spend some time with family.  .Try to enjoy life.  Melanoma sucks and it takes an enormous toll on patient, caregiver and family. But there's still life to be enjoyed. 

FrankD

I can hardly call myself a veteran, Lee, but I am a stage 4 living a normal life while awaiting my next scan results..  I was stage 3C for almost 2 years, after surgery, radiation and Interferon.  I'm a former marathon runner who has gone back to running to keep in shape for whatever lies ahead for me in the melanoma battle.  I work full time including a fair amount of travel.  Every day I try to do what I need to do to keep my body and mind healthy….run, rest, call a friend, spend some time with family.  .Try to enjoy life.  Melanoma sucks and it takes an enormous toll on patient, caregiver and family. But there's still life to be enjoyed. 

FrankD

Hello Lee,

I remember too well all the things my oncologist told me, and the stats I heard from the one I went to for my second opinion as well – not one word of hope from anyone.  Then I found THIS place and saw others who were doing well years after their "bad" news – thank God the Patterson's gave us this site!

I was stage 1A in 1995 and they told me it would never be back – then went to 3C in 2001.  I have been fine since then, over 10 years.  There are plenty on this site who are also at least 10 years out.  DebbieW and StanN and I started out with this at about the same time, with the same stage, did interferon and we're all still healthy and living great lives.  There are many, MANY others who have done bio-chemo and are still fine and others who did no chemical treatments but did the watch and wait routine who are still fine 10 years out. 

I know how hard this is in the early days.  I can tell you that with more time behind the diagnosis you will feel better.  I never think of it returning anymore, I know it can, but I just refuse to let it consume me.  Hang in there, try to stay busy and one day I hope you realize that you haven't thought about "it" for several days.  Then it becomes weeks, etc.  Good luck to you.  I'm glad you found this place.  I don't know what I would have done without it.

DebbieH, stage IIIC, NED 10+ years after interferon

Hello Lee,

I remember too well all the things my oncologist told me, and the stats I heard from the one I went to for my second opinion as well – not one word of hope from anyone.  Then I found THIS place and saw others who were doing well years after their "bad" news – thank God the Patterson's gave us this site!

I was stage 1A in 1995 and they told me it would never be back – then went to 3C in 2001.  I have been fine since then, over 10 years.  There are plenty on this site who are also at least 10 years out.  DebbieW and StanN and I started out with this at about the same time, with the same stage, did interferon and we're all still healthy and living great lives.  There are many, MANY others who have done bio-chemo and are still fine and others who did no chemical treatments but did the watch and wait routine who are still fine 10 years out. 

I know how hard this is in the early days.  I can tell you that with more time behind the diagnosis you will feel better.  I never think of it returning anymore, I know it can, but I just refuse to let it consume me.  Hang in there, try to stay busy and one day I hope you realize that you haven't thought about "it" for several days.  Then it becomes weeks, etc.  Good luck to you.  I'm glad you found this place.  I don't know what I would have done without it.

DebbieH, stage IIIC, NED 10+ years after interferon

Hello Lee,

I remember too well all the things my oncologist told me, and the stats I heard from the one I went to for my second opinion as well – not one word of hope from anyone.  Then I found THIS place and saw others who were doing well years after their "bad" news – thank God the Patterson's gave us this site!

I was stage 1A in 1995 and they told me it would never be back – then went to 3C in 2001.  I have been fine since then, over 10 years.  There are plenty on this site who are also at least 10 years out.  DebbieW and StanN and I started out with this at about the same time, with the same stage, did interferon and we're all still healthy and living great lives.  There are many, MANY others who have done bio-chemo and are still fine and others who did no chemical treatments but did the watch and wait routine who are still fine 10 years out. 

I know how hard this is in the early days.  I can tell you that with more time behind the diagnosis you will feel better.  I never think of it returning anymore, I know it can, but I just refuse to let it consume me.  Hang in there, try to stay busy and one day I hope you realize that you haven't thought about "it" for several days.  Then it becomes weeks, etc.  Good luck to you.  I'm glad you found this place.  I don't know what I would have done without it.

DebbieH, stage IIIC, NED 10+ years after interferon

Lee, I, too, was made aware of my extremely poor prognosis when I became satge IV  right after I turned 42. In a few weeks I will be turning 47 and I have spent four wonderful years with no evidence of disease. I wish you the very best of luck for the future and I want to offer you some hope. When I am under a lot of stress, I still get anxiety about my prognosis, but I really never dreamed I would be this lucky.

Lee, I, too, was made aware of my extremely poor prognosis when I became satge IV  right after I turned 42. In a few weeks I will be turning 47 and I have spent four wonderful years with no evidence of disease. I wish you the very best of luck for the future and I want to offer you some hope. When I am under a lot of stress, I still get anxiety about my prognosis, but I really never dreamed I would be this lucky.

Lee, I, too, was made aware of my extremely poor prognosis when I became satge IV  right after I turned 42. In a few weeks I will be turning 47 and I have spent four wonderful years with no evidence of disease. I wish you the very best of luck for the future and I want to offer you some hope. When I am under a lot of stress, I still get anxiety about my prognosis, but I really never dreamed I would be this lucky.

Hi Lee!

3b ~ 10 1/2 years for me!

Best Wishes Always,

Cynthia C

Hi Lee!

3b ~ 10 1/2 years for me!

Best Wishes Always,

Cynthia C

Hi Lee!

3b ~ 10 1/2 years for me!

Best Wishes Always,

Cynthia C

Lee,

Sorry to hear your melanoma has advanced.  Unfortunately I can't give you a happy success story but I can tell you I'm in the same boat as you and maybe you'll find some comfort in that.  I was stage I in 2006 and recently progressed to stage 3C a couple months ago when I discovered swelling in my armpit.  I'm 43, otherwise healthy with young kids.  I went through the same anxiety you are having.  Stay as positive as you can.  As you know the prognosis can be depressing and the conflicting information about the treatments can be extremely frustrating.  What I've concluded is there may not be a single cure out there but there's a lot of things I can do to little by little increase my odds and I'm doing everyone of them I can.  Conventional treatment (I'm in a clinical trial also), exercise, nutrition, supplements, spiritual, and mental.  This site is a tremendous resource so I encourage you to use it and ask questions.  There are several posters from all over the world but most are from the US so getting a UK perspective would benefit all.  I'll add you to my prayers Lee.  Hopefully you and I will be like some of the others on this board 10 years from now giving someone hope from our success story!

Brian

Lee,

Sorry to hear your melanoma has advanced.  Unfortunately I can't give you a happy success story but I can tell you I'm in the same boat as you and maybe you'll find some comfort in that.  I was stage I in 2006 and recently progressed to stage 3C a couple months ago when I discovered swelling in my armpit.  I'm 43, otherwise healthy with young kids.  I went through the same anxiety you are having.  Stay as positive as you can.  As you know the prognosis can be depressing and the conflicting information about the treatments can be extremely frustrating.  What I've concluded is there may not be a single cure out there but there's a lot of things I can do to little by little increase my odds and I'm doing everyone of them I can.  Conventional treatment (I'm in a clinical trial also), exercise, nutrition, supplements, spiritual, and mental.  This site is a tremendous resource so I encourage you to use it and ask questions.  There are several posters from all over the world but most are from the US so getting a UK perspective would benefit all.  I'll add you to my prayers Lee.  Hopefully you and I will be like some of the others on this board 10 years from now giving someone hope from our success story!

Brian

Lee,

Sorry to hear your melanoma has advanced.  Unfortunately I can't give you a happy success story but I can tell you I'm in the same boat as you and maybe you'll find some comfort in that.  I was stage I in 2006 and recently progressed to stage 3C a couple months ago when I discovered swelling in my armpit.  I'm 43, otherwise healthy with young kids.  I went through the same anxiety you are having.  Stay as positive as you can.  As you know the prognosis can be depressing and the conflicting information about the treatments can be extremely frustrating.  What I've concluded is there may not be a single cure out there but there's a lot of things I can do to little by little increase my odds and I'm doing everyone of them I can.  Conventional treatment (I'm in a clinical trial also), exercise, nutrition, supplements, spiritual, and mental.  This site is a tremendous resource so I encourage you to use it and ask questions.  There are several posters from all over the world but most are from the US so getting a UK perspective would benefit all.  I'll add you to my prayers Lee.  Hopefully you and I will be like some of the others on this board 10 years from now giving someone hope from our success story!

Brian

I am stage 4 and have been NED since March 26, 2010. I was never told my stages…it was on my neck as a feckle-had it removed…came back about 4 years or so later in same place as a purple eraser looking blister thing…had it removed again in Nov/Dec 2000 and also 5 sentinal lymph nodes …. all clear…then one day out of the blue in June 2009 there it was ksssing my superior vena cave and cutting of the blood supply to the top of my body. It was 6.8 cent. Had it removed after some radiation and temodar because the creature was growing again…I am in a trial and I am still here. To me thats great news!

I am stage 4 and have been NED since March 26, 2010. I was never told my stages…it was on my neck as a feckle-had it removed…came back about 4 years or so later in same place as a purple eraser looking blister thing…had it removed again in Nov/Dec 2000 and also 5 sentinal lymph nodes …. all clear…then one day out of the blue in June 2009 there it was ksssing my superior vena cave and cutting of the blood supply to the top of my body. It was 6.8 cent. Had it removed after some radiation and temodar because the creature was growing again…I am in a trial and I am still here. To me thats great news!

I am stage 4 and have been NED since March 26, 2010. I was never told my stages…it was on my neck as a feckle-had it removed…came back about 4 years or so later in same place as a purple eraser looking blister thing…had it removed again in Nov/Dec 2000 and also 5 sentinal lymph nodes …. all clear…then one day out of the blue in June 2009 there it was ksssing my superior vena cave and cutting of the blood supply to the top of my body. It was 6.8 cent. Had it removed after some radiation and temodar because the creature was growing again…I am in a trial and I am still here. To me thats great news!

Hi Lee

I used to do exactly the same – went on Google and typed in any variety of "good" "news" "outcomes" "stage IIIB" "melanoma" "survival" etc.

I was 26 when my primary was removed and 35 when I found the lump under my right arm – so stage IIIB also.  I had a complete lymph node removal and also attended a complementary cancer treatment centre focussing on diet and lifestyle changes (including meditation) to improve my chances of being on the right side of the stats.  I had a 4 month immune treament trial that involved an immune stimulant with the NY-ESO-1 protein (which was found on my tumour). 

I just had my 10 year scans 2 weeks ago and am now 10 years NED with stage IIIB.  I am now 45 (about to turn 46) and while the risk is never "gone" for us stage III-ers, it gets less every year you cross off.  I *never* whine about getting older at birthdays that's for sure 😉  I live and work on contract in Asia where I spend a lot of time travelling.  I

There are definitely good news stories of people having great outcomes at IIIB.  I've been on and off this board for 4 or more years and I can tell you there are a LOT of stage III-ers who are out living their lives who don't check in as often (or at all) but they're there. 

For what it's worth, the most valuable thing for me, was cognitive behaviour therapy (counselling) with a specialist cancer counsellor because that helped me deal with the fear you're describing.  It's crushing and it gets worse when treatment stops (because then you really feel like you're "waiting".  it took me quite some time and a skilled counsellor, but I have some good self-help strategies for managing panic and fear and those are literally life saving too I think – because they help my immune system stay good rather than collapsing with all the adrenalin caused by panic….

Hang in there.  You too could be posting good news in 10 years !

AlisonC

Stage IIIB

NED since 2001

Hi Lee

I used to do exactly the same – went on Google and typed in any variety of "good" "news" "outcomes" "stage IIIB" "melanoma" "survival" etc.

I was 26 when my primary was removed and 35 when I found the lump under my right arm – so stage IIIB also.  I had a complete lymph node removal and also attended a complementary cancer treatment centre focussing on diet and lifestyle changes (including meditation) to improve my chances of being on the right side of the stats.  I had a 4 month immune treament trial that involved an immune stimulant with the NY-ESO-1 protein (which was found on my tumour). 

I just had my 10 year scans 2 weeks ago and am now 10 years NED with stage IIIB.  I am now 45 (about to turn 46) and while the risk is never "gone" for us stage III-ers, it gets less every year you cross off.  I *never* whine about getting older at birthdays that's for sure 😉  I live and work on contract in Asia where I spend a lot of time travelling.  I

There are definitely good news stories of people having great outcomes at IIIB.  I've been on and off this board for 4 or more years and I can tell you there are a LOT of stage III-ers who are out living their lives who don't check in as often (or at all) but they're there. 

For what it's worth, the most valuable thing for me, was cognitive behaviour therapy (counselling) with a specialist cancer counsellor because that helped me deal with the fear you're describing.  It's crushing and it gets worse when treatment stops (because then you really feel like you're "waiting".  it took me quite some time and a skilled counsellor, but I have some good self-help strategies for managing panic and fear and those are literally life saving too I think – because they help my immune system stay good rather than collapsing with all the adrenalin caused by panic….

Hang in there.  You too could be posting good news in 10 years !

AlisonC

Stage IIIB

NED since 2001

Hi Lee

I used to do exactly the same – went on Google and typed in any variety of "good" "news" "outcomes" "stage IIIB" "melanoma" "survival" etc.

I was 26 when my primary was removed and 35 when I found the lump under my right arm – so stage IIIB also.  I had a complete lymph node removal and also attended a complementary cancer treatment centre focussing on diet and lifestyle changes (including meditation) to improve my chances of being on the right side of the stats.  I had a 4 month immune treament trial that involved an immune stimulant with the NY-ESO-1 protein (which was found on my tumour). 

I just had my 10 year scans 2 weeks ago and am now 10 years NED with stage IIIB.  I am now 45 (about to turn 46) and while the risk is never "gone" for us stage III-ers, it gets less every year you cross off.  I *never* whine about getting older at birthdays that's for sure 😉  I live and work on contract in Asia where I spend a lot of time travelling.  I

There are definitely good news stories of people having great outcomes at IIIB.  I've been on and off this board for 4 or more years and I can tell you there are a LOT of stage III-ers who are out living their lives who don't check in as often (or at all) but they're there. 

For what it's worth, the most valuable thing for me, was cognitive behaviour therapy (counselling) with a specialist cancer counsellor because that helped me deal with the fear you're describing.  It's crushing and it gets worse when treatment stops (because then you really feel like you're "waiting".  it took me quite some time and a skilled counsellor, but I have some good self-help strategies for managing panic and fear and those are literally life saving too I think – because they help my immune system stay good rather than collapsing with all the adrenalin caused by panic….

Hang in there.  You too could be posting good news in 10 years !

AlisonC

Stage IIIB

NED since 2001

My husband is nearly 10 years out from a stage iiia diagnosis (will be 10 years NED in February) with no recurrances.  He was 26 at the time of his diagnosis, and back then, was given a 50/50 chance of surviving 5 years, though obviously, those are not the statistics currently quoted for stage iiia.  He is coming up on his 36th birthday and even after 10 years, there are many nights that I go to sleep with intense gratefulness that he is here with me and our daughter (soon to be 2 daughters).

My husband is nearly 10 years out from a stage iiia diagnosis (will be 10 years NED in February) with no recurrances.  He was 26 at the time of his diagnosis, and back then, was given a 50/50 chance of surviving 5 years, though obviously, those are not the statistics currently quoted for stage iiia.  He is coming up on his 36th birthday and even after 10 years, there are many nights that I go to sleep with intense gratefulness that he is here with me and our daughter (soon to be 2 daughters).

My husband is nearly 10 years out from a stage iiia diagnosis (will be 10 years NED in February) with no recurrances.  He was 26 at the time of his diagnosis, and back then, was given a 50/50 chance of surviving 5 years, though obviously, those are not the statistics currently quoted for stage iiia.  He is coming up on his 36th birthday and even after 10 years, there are many nights that I go to sleep with intense gratefulness that he is here with me and our daughter (soon to be 2 daughters).

Hi Lee

Best of luck with this thing. I am British too – but living/workign in Bangkok.

Don't want to tempt fate – but so far so good….

My (not so exciting!) story.

Oct  07 Noticed swollen lymph node in leg.

Hi Lee

Best of luck with this thing. I am British too – but living/workign in Bangkok.

Don't want to tempt fate – but so far so good….

My (not so exciting!) story.

Oct  07 Noticed swollen lymph node in leg.

Hi Lee

Best of luck with this thing. I am British too – but living/workign in Bangkok.

Don't want to tempt fate – but so far so good….

My (not so exciting!) story.

Oct  07 Noticed swollen lymph node in leg.