› Forums › General Melanoma Community › NED for 10 years Stage III :)
- This topic has 51 replies, 13 voices, and was last updated 13 years, 4 months ago by
Jydnew.
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- November 5, 2011 at 2:40 am
Hi fellow MPIP-ers….I feel like I’ve been waiting so long for this moment and I know how helpful it was to me, when I was newly diagnosed at stage III, to hear good news stories. I’m aware that there are a lot of people struggling at the moment with stage IV (I have a good friend who is also) but good news also has a place here and I’m grateful to be able to share mine.
I got my 10 year scan results yesterday….brain MRI, whole body PET and a bunch of smaller things…. All NED.
I am thrilled and I know I owe a lot of it to the support I received. Thanks to everyone here for being part of that.
AlisonC
Stage IIIB
NED since 2001
- Replies
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- November 5, 2011 at 11:03 pm
This is such great news. My daugther is newly diagnosed Stage 3b and facing a big decision next week–wait and see or the ipi/interferon trial. All the doctors are pushing her to do "something", but I believe she may decide to go the other direction. Do you mind sharing the approach you chose 10 years ago? Every story, every bit of info we can get is greatly appreciated. Again, congratulations on your wonderful news. Brad
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- November 5, 2011 at 11:03 pm
This is such great news. My daugther is newly diagnosed Stage 3b and facing a big decision next week–wait and see or the ipi/interferon trial. All the doctors are pushing her to do "something", but I believe she may decide to go the other direction. Do you mind sharing the approach you chose 10 years ago? Every story, every bit of info we can get is greatly appreciated. Again, congratulations on your wonderful news. Brad
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- November 5, 2011 at 11:03 pm
This is such great news. My daugther is newly diagnosed Stage 3b and facing a big decision next week–wait and see or the ipi/interferon trial. All the doctors are pushing her to do "something", but I believe she may decide to go the other direction. Do you mind sharing the approach you chose 10 years ago? Every story, every bit of info we can get is greatly appreciated. Again, congratulations on your wonderful news. Brad
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- November 6, 2011 at 2:47 am
Hi BradI’m sorry your daughter is going through this….I think as awful as it is to be the person diagnosed, it is almost worse to be their parent. I remember my parents anguish (especially my mother when I rang to tell her) when I was diagnosed and it’s still very raw in all our memories.
I was diagnosed and treated in Australia. Interferon was strongly recommended against, for the variable outcomes reported and the punishing physical and psychological consequences. It was available if I’d wanted it but everyone on my medical team made it clear they weren’t in favour. I took part in a 4 month clinical trial that paired an investigational immune stimulating drug (ISCOM) with a protein found on my tumour (NY-ESO-1). The immune complex was injected every 3 weeks and I had a reaction a lot like from a typhoid shot….pain, weakness, ache etc, but mainly confined to the arm the injection was given in.
If you google NY-ESO-1 trials I am sure you will find info but your daughter would need to be positive for that protein. Overall it was another immune system approach though, so GM-CSF etc would be comparable I would think.
I have to add that I also attended a 10 day residential program at a complementary health centre in which I was taught about diet modification (no sugar, fresh healthy with few additives), meditation (helps to control physical things like circulating cortisol from the inevitable stress and the psychological factors such as panic and obsessing over stats) and exercise etc. That had intensive counseling from specialist cancer counsellors and that was immensely valuable. The centre was all about complying with the medical treatment, but doing everything beyond that that you could do to maximize your chances of being on the right side of the statistics.
Honestly, the surgeon saved my life but the complementary program saved my sanity and gave me my life back. I still do everything they taught me every day (organic juices, meditation) and it’s helped me for longer than the medical program (sometimes the end of the clinical trial is the hardest part….until then you feel like you’re “active” but after then you’re just “waiting” and that takes some getting used to…going on with your life while waiting for what might (or might not) happen. Similar programs in the U.S seem to be offered by the Commonweal cancer centre. I was at http://www.Gawler.org.
So, medical treatment through the Ludwig research institute (they are global…you can google them) and complementary through the Gawler foundation….and I have been vigilant about maintaining my health ever since. Who knows if that made the difference or whether I was just lucky, but it’s given me some feeling of control in a very scary situation.
Good luck for your daughter that she’s posting the same thing in 10 years 🙂
AlisonC
Stage IIIB
NED since 2001 -
- November 6, 2011 at 2:47 am
Hi BradI’m sorry your daughter is going through this….I think as awful as it is to be the person diagnosed, it is almost worse to be their parent. I remember my parents anguish (especially my mother when I rang to tell her) when I was diagnosed and it’s still very raw in all our memories.
I was diagnosed and treated in Australia. Interferon was strongly recommended against, for the variable outcomes reported and the punishing physical and psychological consequences. It was available if I’d wanted it but everyone on my medical team made it clear they weren’t in favour. I took part in a 4 month clinical trial that paired an investigational immune stimulating drug (ISCOM) with a protein found on my tumour (NY-ESO-1). The immune complex was injected every 3 weeks and I had a reaction a lot like from a typhoid shot….pain, weakness, ache etc, but mainly confined to the arm the injection was given in.
If you google NY-ESO-1 trials I am sure you will find info but your daughter would need to be positive for that protein. Overall it was another immune system approach though, so GM-CSF etc would be comparable I would think.
I have to add that I also attended a 10 day residential program at a complementary health centre in which I was taught about diet modification (no sugar, fresh healthy with few additives), meditation (helps to control physical things like circulating cortisol from the inevitable stress and the psychological factors such as panic and obsessing over stats) and exercise etc. That had intensive counseling from specialist cancer counsellors and that was immensely valuable. The centre was all about complying with the medical treatment, but doing everything beyond that that you could do to maximize your chances of being on the right side of the statistics.
Honestly, the surgeon saved my life but the complementary program saved my sanity and gave me my life back. I still do everything they taught me every day (organic juices, meditation) and it’s helped me for longer than the medical program (sometimes the end of the clinical trial is the hardest part….until then you feel like you’re “active” but after then you’re just “waiting” and that takes some getting used to…going on with your life while waiting for what might (or might not) happen. Similar programs in the U.S seem to be offered by the Commonweal cancer centre. I was at http://www.Gawler.org.
So, medical treatment through the Ludwig research institute (they are global…you can google them) and complementary through the Gawler foundation….and I have been vigilant about maintaining my health ever since. Who knows if that made the difference or whether I was just lucky, but it’s given me some feeling of control in a very scary situation.
Good luck for your daughter that she’s posting the same thing in 10 years 🙂
AlisonC
Stage IIIB
NED since 2001-
- November 6, 2011 at 4:33 am
Allison, please copy this over to update your profile. It is great so see you posting and and hope to see you post in another 5 and 10 years! So happy for you.
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- November 6, 2011 at 4:33 am
Allison, please copy this over to update your profile. It is great so see you posting and and hope to see you post in another 5 and 10 years! So happy for you.
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- November 6, 2011 at 4:33 am
Allison, please copy this over to update your profile. It is great so see you posting and and hope to see you post in another 5 and 10 years! So happy for you.
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- November 6, 2011 at 1:58 pm
Allison, thank you so much for sharing your story. This is so helpful, hopeful and inspiring, especially since she has made the same decision regarding interferon based on our own research. I will share your note today with my daughter. She is currently exploring nutritional treatments and looking at retreats for young people with cancer in various parts of the world. Hopefully she will get the ipi arm and it will give us some piece of mind in the years ahead. At 24, she has a lot of living left to do and your story gives us a glimpse of what is possible. All the best,
Brad
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- November 6, 2011 at 1:58 pm
Allison, thank you so much for sharing your story. This is so helpful, hopeful and inspiring, especially since she has made the same decision regarding interferon based on our own research. I will share your note today with my daughter. She is currently exploring nutritional treatments and looking at retreats for young people with cancer in various parts of the world. Hopefully she will get the ipi arm and it will give us some piece of mind in the years ahead. At 24, she has a lot of living left to do and your story gives us a glimpse of what is possible. All the best,
Brad
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- November 6, 2011 at 1:58 pm
Allison, thank you so much for sharing your story. This is so helpful, hopeful and inspiring, especially since she has made the same decision regarding interferon based on our own research. I will share your note today with my daughter. She is currently exploring nutritional treatments and looking at retreats for young people with cancer in various parts of the world. Hopefully she will get the ipi arm and it will give us some piece of mind in the years ahead. At 24, she has a lot of living left to do and your story gives us a glimpse of what is possible. All the best,
Brad
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- November 6, 2011 at 2:47 am
Hi BradI’m sorry your daughter is going through this….I think as awful as it is to be the person diagnosed, it is almost worse to be their parent. I remember my parents anguish (especially my mother when I rang to tell her) when I was diagnosed and it’s still very raw in all our memories.
I was diagnosed and treated in Australia. Interferon was strongly recommended against, for the variable outcomes reported and the punishing physical and psychological consequences. It was available if I’d wanted it but everyone on my medical team made it clear they weren’t in favour. I took part in a 4 month clinical trial that paired an investigational immune stimulating drug (ISCOM) with a protein found on my tumour (NY-ESO-1). The immune complex was injected every 3 weeks and I had a reaction a lot like from a typhoid shot….pain, weakness, ache etc, but mainly confined to the arm the injection was given in.
If you google NY-ESO-1 trials I am sure you will find info but your daughter would need to be positive for that protein. Overall it was another immune system approach though, so GM-CSF etc would be comparable I would think.
I have to add that I also attended a 10 day residential program at a complementary health centre in which I was taught about diet modification (no sugar, fresh healthy with few additives), meditation (helps to control physical things like circulating cortisol from the inevitable stress and the psychological factors such as panic and obsessing over stats) and exercise etc. That had intensive counseling from specialist cancer counsellors and that was immensely valuable. The centre was all about complying with the medical treatment, but doing everything beyond that that you could do to maximize your chances of being on the right side of the statistics.
Honestly, the surgeon saved my life but the complementary program saved my sanity and gave me my life back. I still do everything they taught me every day (organic juices, meditation) and it’s helped me for longer than the medical program (sometimes the end of the clinical trial is the hardest part….until then you feel like you’re “active” but after then you’re just “waiting” and that takes some getting used to…going on with your life while waiting for what might (or might not) happen. Similar programs in the U.S seem to be offered by the Commonweal cancer centre. I was at http://www.Gawler.org.
So, medical treatment through the Ludwig research institute (they are global…you can google them) and complementary through the Gawler foundation….and I have been vigilant about maintaining my health ever since. Who knows if that made the difference or whether I was just lucky, but it’s given me some feeling of control in a very scary situation.
Good luck for your daughter that she’s posting the same thing in 10 years 🙂
AlisonC
Stage IIIB
NED since 2001 -
- November 6, 2011 at 4:11 am
Alison,
Congratulations!!! This is wonderful news and is very inspiring. We all need to hang onto hope and stories like yours make it less difficult. Enjoy!
Stay Strong
King
Stage IV 7/05 Liver Mets
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- November 6, 2011 at 7:57 am
Great news! I love to hear how well you've done! There really are good stories but many are off living and many don't think to come back to the board to let us know when they are doing. Those in the middle of battle need to refocus and see that there are also successful stories.
Celebrate Allison!
Linda
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- November 6, 2011 at 7:57 am
Great news! I love to hear how well you've done! There really are good stories but many are off living and many don't think to come back to the board to let us know when they are doing. Those in the middle of battle need to refocus and see that there are also successful stories.
Celebrate Allison!
Linda
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- November 6, 2011 at 7:57 am
Great news! I love to hear how well you've done! There really are good stories but many are off living and many don't think to come back to the board to let us know when they are doing. Those in the middle of battle need to refocus and see that there are also successful stories.
Celebrate Allison!
Linda
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- November 6, 2011 at 8:01 am
Great news! I love to hear how well you've done! There really are good stories but many are off living and many don't think to come back to the board to let us know when they are doing. Those in the middle of battle need to refocus and see that there are also successful stories.
Celebrate Allison!
Linda
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- November 6, 2011 at 8:01 am
Great news! I love to hear how well you've done! There really are good stories but many are off living and many don't think to come back to the board to let us know when they are doing. Those in the middle of battle need to refocus and see that there are also successful stories.
Celebrate Allison!
Linda
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- November 6, 2011 at 8:01 am
Great news! I love to hear how well you've done! There really are good stories but many are off living and many don't think to come back to the board to let us know when they are doing. Those in the middle of battle need to refocus and see that there are also successful stories.
Celebrate Allison!
Linda
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- November 6, 2011 at 8:18 pm
Congrats, Alison!! I'm coming up on 11 years myself!! It's a great milestone—–here's to another few decades of NED!!!! *Hugz*
~Lisa~
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- November 6, 2011 at 8:18 pm
Congrats, Alison!! I'm coming up on 11 years myself!! It's a great milestone—–here's to another few decades of NED!!!! *Hugz*
~Lisa~
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- November 6, 2011 at 8:18 pm
Congrats, Alison!! I'm coming up on 11 years myself!! It's a great milestone—–here's to another few decades of NED!!!! *Hugz*
~Lisa~
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- November 6, 2011 at 10:28 pm
Woo hooooooo! I log onto this page quite often just to read posts like yours! As a stage III warrior, paranoia sometimes consumes my thoughts. Thank you for sharing this with us. It gives us all hope! CONGRATULATIONS! Here is to many, many more NED years!
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- November 6, 2011 at 10:28 pm
Woo hooooooo! I log onto this page quite often just to read posts like yours! As a stage III warrior, paranoia sometimes consumes my thoughts. Thank you for sharing this with us. It gives us all hope! CONGRATULATIONS! Here is to many, many more NED years!
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- November 6, 2011 at 10:28 pm
Woo hooooooo! I log onto this page quite often just to read posts like yours! As a stage III warrior, paranoia sometimes consumes my thoughts. Thank you for sharing this with us. It gives us all hope! CONGRATULATIONS! Here is to many, many more NED years!
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- November 7, 2011 at 8:25 pm
HUGE Congratulations!!!!
My husband is 9.5 years NED from stage iiia – it will be 10 years (fingers and toes crossed) in February/March 2012. I'm curious… what will your doctor's protocol be from this point on? My husband's oncologist said no more CT scans. Just a chest xray once a year and semi-annual bloodwork and oncology appointments (as well as semi-annual dermatology appointments. He will be 36 when he hits the 10 year NEDiversary. Any changes for you?
Again – such wonderful news! Congratulations and my most sincere hopes that you never encounter melanoma again.
Wendy
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- November 7, 2011 at 8:25 pm
HUGE Congratulations!!!!
My husband is 9.5 years NED from stage iiia – it will be 10 years (fingers and toes crossed) in February/March 2012. I'm curious… what will your doctor's protocol be from this point on? My husband's oncologist said no more CT scans. Just a chest xray once a year and semi-annual bloodwork and oncology appointments (as well as semi-annual dermatology appointments. He will be 36 when he hits the 10 year NEDiversary. Any changes for you?
Again – such wonderful news! Congratulations and my most sincere hopes that you never encounter melanoma again.
Wendy
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- November 7, 2011 at 8:25 pm
HUGE Congratulations!!!!
My husband is 9.5 years NED from stage iiia – it will be 10 years (fingers and toes crossed) in February/March 2012. I'm curious… what will your doctor's protocol be from this point on? My husband's oncologist said no more CT scans. Just a chest xray once a year and semi-annual bloodwork and oncology appointments (as well as semi-annual dermatology appointments. He will be 36 when he hits the 10 year NEDiversary. Any changes for you?
Again – such wonderful news! Congratulations and my most sincere hopes that you never encounter melanoma again.
Wendy
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