› Forums › General Melanoma Community › Ten years out from stage IV diagnosis..niine years NED
- This topic has 39 replies, 13 voices, and was last updated 8 years, 3 months ago by
wasserd.
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- January 15, 2017 at 11:25 pm
In a couple of a days, I will be at nine years, stage IV NED. It's wierd, but I feel a bit guilty, ( I have lost 5 dear people to cancer in the last few years). I feel like I am bragging when so many here are in the midst of struggling with the mental and physical effects of the disease…..However, I want to offer HOPE. There are long term NED survivors and long term stable disease status survivors of melanoma. Most of us just rarely check in here anymore.
My daughters grew up, I went back to work as a preschool teacher and am working at my dream school- best job I have ever had. I met a wonderful person who accepts my uncertain health and is a suportive partner. I have SO much to be grateful for, but, I struggle with exhastion, worry over possible symptoms of reccurrence, and the fact that others see me as "cured" when I know I can't ever really use that term.
My history: I had a met to my mediastinum, biopsied in an open thoracotamy, that could not be removed because it accluded my pulmonary artery, so I did 11 rounds, over a year, of Temodar ( temozolamide) and have not done any preventative treatment. The only major change has been following a strict vegan diet. I try to deal with stress well, but, stress is always there in one form or another!
So, I wish ALL of you the very best of luck and health and peace of mind. Every one of you are BRAVE and are my HEROES. Much love, fellow warriors.
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- January 16, 2017 at 1:28 am
absolutely love to hear these stories…
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- January 16, 2017 at 1:28 am
absolutely love to hear these stories…
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- January 16, 2017 at 1:28 am
absolutely love to hear these stories…
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- January 16, 2017 at 1:34 am
It never gets old hearing positve outcomes. Thanks for sharing.
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- January 16, 2017 at 1:34 am
It never gets old hearing positve outcomes. Thanks for sharing.
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- January 16, 2017 at 1:34 am
It never gets old hearing positve outcomes. Thanks for sharing.
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- January 16, 2017 at 1:48 am
Awesome! Enjoy life. Thanks for sharing.
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- January 16, 2017 at 1:48 am
Awesome! Enjoy life. Thanks for sharing.
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- January 16, 2017 at 1:48 am
Awesome! Enjoy life. Thanks for sharing.
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- January 16, 2017 at 2:14 am
I'll also chime in. It was 25 years ago, in January 1992 that I had just been accepted at NIH. I went through 3 rounds of IL-2 and became NED. I was 35 then, and I just turned 61 yesterday. I'm grateful for my good fortune. My best to all of you.
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- January 16, 2017 at 2:14 am
I'll also chime in. It was 25 years ago, in January 1992 that I had just been accepted at NIH. I went through 3 rounds of IL-2 and became NED. I was 35 then, and I just turned 61 yesterday. I'm grateful for my good fortune. My best to all of you.
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- January 16, 2017 at 2:14 am
I'll also chime in. It was 25 years ago, in January 1992 that I had just been accepted at NIH. I went through 3 rounds of IL-2 and became NED. I was 35 then, and I just turned 61 yesterday. I'm grateful for my good fortune. My best to all of you.
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- January 16, 2017 at 8:02 am
Thanking you for sharing! Hearing your story gives me hope for the future. I very happy for your success. Wishing you a lifetime of NED.
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- January 16, 2017 at 8:02 am
Thanking you for sharing! Hearing your story gives me hope for the future. I very happy for your success. Wishing you a lifetime of NED.
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- January 16, 2017 at 8:02 am
Thanking you for sharing! Hearing your story gives me hope for the future. I very happy for your success. Wishing you a lifetime of NED.
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- January 17, 2017 at 2:25 am
Good to hear.
I totally get the survivors guilt.
I totally get too that when having been at Stage IV using the word "cured" seems like inviting a dance with the devil.
It almost seems terrible, awful, shamefull and disrespectful of others when someone has died from melanoma only for a survivor to offer hope to others by virtue of living.
It is fullfilling to see you post,
It was also fullfilling to see Rick post as well……………we met seven years ago in Chapel Hill.
Thanks for posting.
Charlie S
NED
Not Expecting Death
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- January 17, 2017 at 2:25 am
Good to hear.
I totally get the survivors guilt.
I totally get too that when having been at Stage IV using the word "cured" seems like inviting a dance with the devil.
It almost seems terrible, awful, shamefull and disrespectful of others when someone has died from melanoma only for a survivor to offer hope to others by virtue of living.
It is fullfilling to see you post,
It was also fullfilling to see Rick post as well……………we met seven years ago in Chapel Hill.
Thanks for posting.
Charlie S
NED
Not Expecting Death
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- January 17, 2017 at 2:25 am
Good to hear.
I totally get the survivors guilt.
I totally get too that when having been at Stage IV using the word "cured" seems like inviting a dance with the devil.
It almost seems terrible, awful, shamefull and disrespectful of others when someone has died from melanoma only for a survivor to offer hope to others by virtue of living.
It is fullfilling to see you post,
It was also fullfilling to see Rick post as well……………we met seven years ago in Chapel Hill.
Thanks for posting.
Charlie S
NED
Not Expecting Death
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- January 18, 2017 at 7:22 pm
Congratulations on continued good health!! And thank you so much for sharing your story. Reading the stories of HOPE help me to stay positive that this is not a death sentence. I am one year NED after IIIB diagnosis in September 2015. I was able to get 3 doses of Yervoy prior to having a side effect and my fingers are crossed every day that it found and DESTROYED any trace evidence of this ugly monster!!! Sending hugs and prayers for many many more years as NED!!!
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- January 18, 2017 at 7:22 pm
Congratulations on continued good health!! And thank you so much for sharing your story. Reading the stories of HOPE help me to stay positive that this is not a death sentence. I am one year NED after IIIB diagnosis in September 2015. I was able to get 3 doses of Yervoy prior to having a side effect and my fingers are crossed every day that it found and DESTROYED any trace evidence of this ugly monster!!! Sending hugs and prayers for many many more years as NED!!!
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- January 18, 2017 at 7:22 pm
Congratulations on continued good health!! And thank you so much for sharing your story. Reading the stories of HOPE help me to stay positive that this is not a death sentence. I am one year NED after IIIB diagnosis in September 2015. I was able to get 3 doses of Yervoy prior to having a side effect and my fingers are crossed every day that it found and DESTROYED any trace evidence of this ugly monster!!! Sending hugs and prayers for many many more years as NED!!!
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- January 19, 2017 at 4:46 am
Thank you so much for sharing this! After another good MRI result today, I'm thinking about all the things you talk about. May your health continue!
Deborah
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- January 19, 2017 at 4:46 am
Thank you so much for sharing this! After another good MRI result today, I'm thinking about all the things you talk about. May your health continue!
Deborah
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- January 19, 2017 at 4:46 am
Thank you so much for sharing this! After another good MRI result today, I'm thinking about all the things you talk about. May your health continue!
Deborah
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