› Forums › General Melanoma Community › Charlie 27 Melanoma Zero
- This topic has 45 replies, 15 voices, and was last updated 11 years, 5 months ago by
vicuk.
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- June 19, 2014 at 12:14 am
1987 – Lump under my armpit turned out , after surgery and an electron mircrosope to be metastatic melanoma with an unknown primary. Nothing on my skin anywhere, just showed up inside of me eating up my surgically removed lymph nodes. Stage III right out of the gate. Just surgical removal and a "time bomb" diagnosis. Not if, but when.
1996–Pretty much forgot about the time bomb, but danged if a new lump appeared in and on my chest. Wow, nine years$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$ Yes, nine years now Stage IV.
The long and short of it is that after all of that and seven more recurrences, having a girlfried die in my arms from the same disease, I now stand before you as a testament to keep moving.
After well over two hundred injections and infusions of many drugs in addition to surgery after surgery; know this: it is possible to surviive melanoma.
I am pretty much irrelavant here because when first visiting MPIP we were all transistioning to Win 95 from win 3.1 when Jeff created this site.
Anyway, just wanted to throw it in that people DO survive melanoma.
Charlie S Stage 3 1987—–Today Stage IV and alive.
Kiss my ass melanoma.
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- June 19, 2014 at 3:49 pm
Wow. Thank you for the inspiration.
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- June 19, 2014 at 3:49 pm
Wow. Thank you for the inspiration.
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- June 19, 2014 at 3:49 pm
Wow. Thank you for the inspiration.
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- June 19, 2014 at 5:15 pm
Thank you so much for your uplifting story! It is so encouraging to read your story and hear the determination in your voice! Thank you for sharing- it helps a newbie like me stay positive! I'm only 1b- but working hard to stay positive and encouraged!
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- June 19, 2014 at 5:15 pm
Thank you so much for your uplifting story! It is so encouraging to read your story and hear the determination in your voice! Thank you for sharing- it helps a newbie like me stay positive! I'm only 1b- but working hard to stay positive and encouraged!
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- June 19, 2014 at 5:15 pm
Thank you so much for your uplifting story! It is so encouraging to read your story and hear the determination in your voice! Thank you for sharing- it helps a newbie like me stay positive! I'm only 1b- but working hard to stay positive and encouraged!
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- June 19, 2014 at 7:02 pm
Right on Brother!
I went from clean scans for two years to stage IV in January. On Clinical trial IPI and Debrafenib.
It has done well shrinking tumor so far and last IPI infusion was May 6 so still waiting to find out if IPI is taking over.
Unfortunately after part of face lost feeling this weekend found many very tiny lesions in brain so starting Whole Brain Radiation on Monday. They say with the size of tumors this is normally very effective.
I feel fine and melanoma can kiss my ass also…..I'm going to be not only a survivor but live my life in the fullest!
Good luck and great to hear your story.
Charlie
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- June 19, 2014 at 7:02 pm
Right on Brother!
I went from clean scans for two years to stage IV in January. On Clinical trial IPI and Debrafenib.
It has done well shrinking tumor so far and last IPI infusion was May 6 so still waiting to find out if IPI is taking over.
Unfortunately after part of face lost feeling this weekend found many very tiny lesions in brain so starting Whole Brain Radiation on Monday. They say with the size of tumors this is normally very effective.
I feel fine and melanoma can kiss my ass also…..I'm going to be not only a survivor but live my life in the fullest!
Good luck and great to hear your story.
Charlie
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- June 19, 2014 at 9:47 pm
Yay, Charlie – this is wonderful news! Back in 2010, when I first found this site after being diagnosed at stage 3a, you started a post entitled "Roll Call for the Undead", asking stage 4 people to sign in and show how many people do live, even with stage 4 melanoma. That was hugely uplifting to me. Lots of the people who answered you then are still posting here occasionally. I am stage 4 myself now, but NED for over a year. Nothing but surgery so far. Thank you so much for that first post and even more for this one!
Keep up the great work!
Lear
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- June 19, 2014 at 9:47 pm
Yay, Charlie – this is wonderful news! Back in 2010, when I first found this site after being diagnosed at stage 3a, you started a post entitled "Roll Call for the Undead", asking stage 4 people to sign in and show how many people do live, even with stage 4 melanoma. That was hugely uplifting to me. Lots of the people who answered you then are still posting here occasionally. I am stage 4 myself now, but NED for over a year. Nothing but surgery so far. Thank you so much for that first post and even more for this one!
Keep up the great work!
Lear
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- June 19, 2014 at 10:38 pm
Thank you, Charlie.
Thank you for halting my pity party. I'm finally getting PD1 on Tuesday. Yeah!!!!!!Just read Tim's post on ASCO and realized that those who were NOT prior treated with Ipi have/had lower success rates. Boooo. Three gamma knife procedures later, thanks for reminding me to shut up and be happy and hopeful.
BTW: BRAF Combo lasted 10 months.
love ya,
Karen
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- June 19, 2014 at 10:38 pm
Thank you, Charlie.
Thank you for halting my pity party. I'm finally getting PD1 on Tuesday. Yeah!!!!!!Just read Tim's post on ASCO and realized that those who were NOT prior treated with Ipi have/had lower success rates. Boooo. Three gamma knife procedures later, thanks for reminding me to shut up and be happy and hopeful.
BTW: BRAF Combo lasted 10 months.
love ya,
Karen
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- June 20, 2014 at 7:10 am
I love this post, Charlie!
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- June 20, 2014 at 7:10 am
I love this post, Charlie!
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- June 20, 2014 at 7:10 am
I love this post, Charlie!
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- June 19, 2014 at 10:38 pm
Thank you, Charlie.
Thank you for halting my pity party. I'm finally getting PD1 on Tuesday. Yeah!!!!!!Just read Tim's post on ASCO and realized that those who were NOT prior treated with Ipi have/had lower success rates. Boooo. Three gamma knife procedures later, thanks for reminding me to shut up and be happy and hopeful.
BTW: BRAF Combo lasted 10 months.
love ya,
Karen
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- June 19, 2014 at 9:47 pm
Yay, Charlie – this is wonderful news! Back in 2010, when I first found this site after being diagnosed at stage 3a, you started a post entitled "Roll Call for the Undead", asking stage 4 people to sign in and show how many people do live, even with stage 4 melanoma. That was hugely uplifting to me. Lots of the people who answered you then are still posting here occasionally. I am stage 4 myself now, but NED for over a year. Nothing but surgery so far. Thank you so much for that first post and even more for this one!
Keep up the great work!
Lear
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- June 19, 2014 at 7:02 pm
Right on Brother!
I went from clean scans for two years to stage IV in January. On Clinical trial IPI and Debrafenib.
It has done well shrinking tumor so far and last IPI infusion was May 6 so still waiting to find out if IPI is taking over.
Unfortunately after part of face lost feeling this weekend found many very tiny lesions in brain so starting Whole Brain Radiation on Monday. They say with the size of tumors this is normally very effective.
I feel fine and melanoma can kiss my ass also…..I'm going to be not only a survivor but live my life in the fullest!
Good luck and great to hear your story.
Charlie
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- June 20, 2014 at 7:22 pm
Oh Charlie, Irreverent, often, irrelavent never! Been trying to call you. Take care.
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- June 20, 2014 at 7:22 pm
Oh Charlie, Irreverent, often, irrelavent never! Been trying to call you. Take care.
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- June 20, 2014 at 7:22 pm
Oh Charlie, Irreverent, often, irrelavent never! Been trying to call you. Take care.
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- June 21, 2014 at 4:29 am
Awesome Charlie! Thanks so much for sharing
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- June 21, 2014 at 4:29 am
Awesome Charlie! Thanks so much for sharing
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- June 21, 2014 at 4:29 am
Awesome Charlie! Thanks so much for sharing
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- June 23, 2014 at 4:00 am
Hello Charlie!
Irrelavant??? I don't think so!! More like the Godfather of "KICK MELANOMAS ASS OUT OF THE PARK" that's how I think of you Charlie!
When I joined this site 4 yrs. ago, being diagnosed stage IV out of the gate, I was so discouraged and thought I would die soon from everything I read on the internet…..there were no good stories for stage IV patients……except yours! Your story gave me hope and I think of you every time I check in with MPIP!
Shortly after joining MPIP, you posted "Roll Call for the Undead" and I was so uplifted and given so much hope, as so many stage IV survivors came forward and posted their proof of being undead and living life to the fullest and in a most inspired way. So many people posted who don't regularly post and the stage IV' survivors came out of the woodwork, and there were so many!
What I've learned since that time, is that there are so many stage IV survivors out there and they are living their lives to the greatest potential, living one day at a time and not taking any time for granted! These stage IV survivors are enjoying every moment and believing in the possibility of a lot more days ahead to enjoy this new appreciation for life. It's a choice all of us must make, do we spend what unknown days we have living or dying?
I wish you would post more often Charlie, for you are an inspiration here and I definitely wish you would do another "Roll Call" because I think it would have to come from you to bring all the unheard survivors, who also think of you in the Godfather way and I know you are the one who could pull them out of the woodwork : ) !! There are A LOT of viewers, but not that many posters in comparison! Thanks Charlie for keeping tabs on MPIP and posting! Wishing you continued good health and a life well lived!
Cheers to you Charlie!
Swanee
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- June 23, 2014 at 4:00 am
Hello Charlie!
Irrelavant??? I don't think so!! More like the Godfather of "KICK MELANOMAS ASS OUT OF THE PARK" that's how I think of you Charlie!
When I joined this site 4 yrs. ago, being diagnosed stage IV out of the gate, I was so discouraged and thought I would die soon from everything I read on the internet…..there were no good stories for stage IV patients……except yours! Your story gave me hope and I think of you every time I check in with MPIP!
Shortly after joining MPIP, you posted "Roll Call for the Undead" and I was so uplifted and given so much hope, as so many stage IV survivors came forward and posted their proof of being undead and living life to the fullest and in a most inspired way. So many people posted who don't regularly post and the stage IV' survivors came out of the woodwork, and there were so many!
What I've learned since that time, is that there are so many stage IV survivors out there and they are living their lives to the greatest potential, living one day at a time and not taking any time for granted! These stage IV survivors are enjoying every moment and believing in the possibility of a lot more days ahead to enjoy this new appreciation for life. It's a choice all of us must make, do we spend what unknown days we have living or dying?
I wish you would post more often Charlie, for you are an inspiration here and I definitely wish you would do another "Roll Call" because I think it would have to come from you to bring all the unheard survivors, who also think of you in the Godfather way and I know you are the one who could pull them out of the woodwork : ) !! There are A LOT of viewers, but not that many posters in comparison! Thanks Charlie for keeping tabs on MPIP and posting! Wishing you continued good health and a life well lived!
Cheers to you Charlie!
Swanee
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- June 23, 2014 at 4:00 am
Hello Charlie!
Irrelavant??? I don't think so!! More like the Godfather of "KICK MELANOMAS ASS OUT OF THE PARK" that's how I think of you Charlie!
When I joined this site 4 yrs. ago, being diagnosed stage IV out of the gate, I was so discouraged and thought I would die soon from everything I read on the internet…..there were no good stories for stage IV patients……except yours! Your story gave me hope and I think of you every time I check in with MPIP!
Shortly after joining MPIP, you posted "Roll Call for the Undead" and I was so uplifted and given so much hope, as so many stage IV survivors came forward and posted their proof of being undead and living life to the fullest and in a most inspired way. So many people posted who don't regularly post and the stage IV' survivors came out of the woodwork, and there were so many!
What I've learned since that time, is that there are so many stage IV survivors out there and they are living their lives to the greatest potential, living one day at a time and not taking any time for granted! These stage IV survivors are enjoying every moment and believing in the possibility of a lot more days ahead to enjoy this new appreciation for life. It's a choice all of us must make, do we spend what unknown days we have living or dying?
I wish you would post more often Charlie, for you are an inspiration here and I definitely wish you would do another "Roll Call" because I think it would have to come from you to bring all the unheard survivors, who also think of you in the Godfather way and I know you are the one who could pull them out of the woodwork : ) !! There are A LOT of viewers, but not that many posters in comparison! Thanks Charlie for keeping tabs on MPIP and posting! Wishing you continued good health and a life well lived!
Cheers to you Charlie!
Swanee
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- June 24, 2014 at 7:49 pm
You really helped me with your posts more or less 2 years ago now. My friend was diagnosed with stage iv straight out of the gate. I did all the research as Hels didn't want anything to do with it. The new trial at the time, along with your roll call; that i told her all about, made her believe that she could do it. 2 years later, she's still here and although in a very large part to her body's response to the drugs, it's also to do with the mental impact that stories like yours have.
Cheers.
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- June 24, 2014 at 7:49 pm
You really helped me with your posts more or less 2 years ago now. My friend was diagnosed with stage iv straight out of the gate. I did all the research as Hels didn't want anything to do with it. The new trial at the time, along with your roll call; that i told her all about, made her believe that she could do it. 2 years later, she's still here and although in a very large part to her body's response to the drugs, it's also to do with the mental impact that stories like yours have.
Cheers.
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- June 24, 2014 at 7:49 pm
You really helped me with your posts more or less 2 years ago now. My friend was diagnosed with stage iv straight out of the gate. I did all the research as Hels didn't want anything to do with it. The new trial at the time, along with your roll call; that i told her all about, made her believe that she could do it. 2 years later, she's still here and although in a very large part to her body's response to the drugs, it's also to do with the mental impact that stories like yours have.
Cheers.
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