› Forums › General Melanoma Community › NED 11 Years after Brain Met
- This topic has 42 replies, 10 voices, and was last updated 12 years, 9 months ago by
BarbieGirl.
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- February 25, 2012 at 4:27 am
HI Everyone,
I frequented this board from 1999 until around 2008 and certainly do miss all my old frends from MPIP. I knew so many people here, we got together in ASheville NC< MIchigan, Florida, Seattle, Vancouver and on and on. They were good times and sad times . Most importantly the support I got here could never be measured. I will all cherish everyone here and all the love we gave each other.
HI Everyone,
I frequented this board from 1999 until around 2008 and certainly do miss all my old frends from MPIP. I knew so many people here, we got together in ASheville NC< MIchigan, Florida, Seattle, Vancouver and on and on. They were good times and sad times . Most importantly the support I got here could never be measured. I will all cherish everyone here and all the love we gave each other.
For all of you I just want to say DO NOT GIVE UP. NEVER GIVE UP HOPE. I should have been dead 11 years ago and I am still kicking. Doing well, getting a bit old these days and loving life.
I was dx in 1995 with ulcerated mole on my back as a stage II. Fast forward to 2001 when dx with lung mets and in Dec. 2001 with a brain met. It was not an easy journey and yet it could have been far more difficult had it not been for this board. The support I got here cannot be measured. There was alwasy HOPE> We would often spend all night in the chat room and let me assure you , if you were depressed when you went in, you were laughing long before you left.
The one thing my oncologist told me I have never forgotten..CAROLE, DO NO LOOK AT STATISTICS.. NOONE CAN TELL YOU HOW THEY WERE ARRIVED AT. FURTHERMORE YOU ARE AN INDICIDUAL AND EVERYONE IS " DIFFERENT". I hung on to those words for dear life and here I am 11 years later having the best affair with NED, the only man I have never minded sharing…….even with men.
To all of you NEVER GIVE UP.. NEVER LOOK BACK JUST KEEP LOOKING AHEAD. WE CAN DO THIS.
Sending positive thoughts to all of you
LOVE AND LIGHT
CAROLE
- Replies
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- February 25, 2012 at 10:17 am
Carole,
So great to hear from you at an appropriate time for me. I've been stage IV since 06 but have been dealing with a brain met since Oct. SRS, then edema and 3 weeks ago a crainectomy. Right now I'm NED!!!! Been on DEX since Oct and that has been a huge issue, however, as of tomorrow I'll be weaning to 1mgs and slowly gaining strength back in the rest of my body. I'll think of you and know that I can do this also!!!!
I'm glad to share to your best man NED!
Linda
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- February 25, 2012 at 10:17 am
Carole,
So great to hear from you at an appropriate time for me. I've been stage IV since 06 but have been dealing with a brain met since Oct. SRS, then edema and 3 weeks ago a crainectomy. Right now I'm NED!!!! Been on DEX since Oct and that has been a huge issue, however, as of tomorrow I'll be weaning to 1mgs and slowly gaining strength back in the rest of my body. I'll think of you and know that I can do this also!!!!
I'm glad to share to your best man NED!
Linda
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- February 25, 2012 at 10:17 am
Carole,
So great to hear from you at an appropriate time for me. I've been stage IV since 06 but have been dealing with a brain met since Oct. SRS, then edema and 3 weeks ago a crainectomy. Right now I'm NED!!!! Been on DEX since Oct and that has been a huge issue, however, as of tomorrow I'll be weaning to 1mgs and slowly gaining strength back in the rest of my body. I'll think of you and know that I can do this also!!!!
I'm glad to share to your best man NED!
Linda
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- February 25, 2012 at 1:16 pm
Hey Carole, I remember all of the positive thoughts you sent me when I was first going through treatments for brain mets. Thank you for all of the hope. You did get me suckered in to the whole macrobiotics crap, but thanks for the hope.
11 years is a long time w/NED. I hope you stay with NED for life.
Regards
John
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- February 25, 2012 at 1:16 pm
Hey Carole, I remember all of the positive thoughts you sent me when I was first going through treatments for brain mets. Thank you for all of the hope. You did get me suckered in to the whole macrobiotics crap, but thanks for the hope.
11 years is a long time w/NED. I hope you stay with NED for life.
Regards
John
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- February 25, 2012 at 1:16 pm
Hey Carole, I remember all of the positive thoughts you sent me when I was first going through treatments for brain mets. Thank you for all of the hope. You did get me suckered in to the whole macrobiotics crap, but thanks for the hope.
11 years is a long time w/NED. I hope you stay with NED for life.
Regards
John
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- February 25, 2012 at 3:55 pm
Dear Carole, How wonderful to read your love and light message of continued NED in your life. Thank you for coming back to the old neighborhood to share this encouraging and inspirational message. I'm here seven years now. Seven (holding at Stage III, even with mastectomy and skin graft 4 yrs ago) Never would have considered that number, or more, back in '05 when it all began, without the MPIP board and that neighborhood that was here. Even not being able to attend the "bashes", we all felt part of that strength and support. I, for one, will forever remember the names and faces. Keep lighting and loving life, Carole!
Fondly,
CarolA (my sign in name, as IF people would confuse me with you!)
Amherst, NY – Stage III and holding on!!
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- February 25, 2012 at 3:55 pm
Dear Carole, How wonderful to read your love and light message of continued NED in your life. Thank you for coming back to the old neighborhood to share this encouraging and inspirational message. I'm here seven years now. Seven (holding at Stage III, even with mastectomy and skin graft 4 yrs ago) Never would have considered that number, or more, back in '05 when it all began, without the MPIP board and that neighborhood that was here. Even not being able to attend the "bashes", we all felt part of that strength and support. I, for one, will forever remember the names and faces. Keep lighting and loving life, Carole!
Fondly,
CarolA (my sign in name, as IF people would confuse me with you!)
Amherst, NY – Stage III and holding on!!
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- February 25, 2012 at 3:55 pm
Dear Carole, How wonderful to read your love and light message of continued NED in your life. Thank you for coming back to the old neighborhood to share this encouraging and inspirational message. I'm here seven years now. Seven (holding at Stage III, even with mastectomy and skin graft 4 yrs ago) Never would have considered that number, or more, back in '05 when it all began, without the MPIP board and that neighborhood that was here. Even not being able to attend the "bashes", we all felt part of that strength and support. I, for one, will forever remember the names and faces. Keep lighting and loving life, Carole!
Fondly,
CarolA (my sign in name, as IF people would confuse me with you!)
Amherst, NY – Stage III and holding on!!
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- February 25, 2012 at 9:35 pm
11 yrs – yea! Glad to hear such good news from you. You use to be on here all the time & were a big support to allot of us. Good you are doing well. Keep it up!! BethA 3/B
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- February 25, 2012 at 9:35 pm
11 yrs – yea! Glad to hear such good news from you. You use to be on here all the time & were a big support to allot of us. Good you are doing well. Keep it up!! BethA 3/B
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- February 25, 2012 at 9:35 pm
11 yrs – yea! Glad to hear such good news from you. You use to be on here all the time & were a big support to allot of us. Good you are doing well. Keep it up!! BethA 3/B
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- February 26, 2012 at 3:46 am
Hi girlfriend!
It is so nice that you posted and I'm sure you've given many others the hope they need to continue in their battles. Your "case" is often mentioned here but now the newbies get to "meet" you.
And, as you know, you were one of the first ones that I met in the MPIP chat room and we got to know each other much better after that. You taught me so much by words and your example.
Miss you. Happy Nediversary (if that's what it is)
Stay Strong
KingStage IV 7/05 Liver mets
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- February 26, 2012 at 3:46 am
Hi girlfriend!
It is so nice that you posted and I'm sure you've given many others the hope they need to continue in their battles. Your "case" is often mentioned here but now the newbies get to "meet" you.
And, as you know, you were one of the first ones that I met in the MPIP chat room and we got to know each other much better after that. You taught me so much by words and your example.
Miss you. Happy Nediversary (if that's what it is)
Stay Strong
KingStage IV 7/05 Liver mets
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- February 26, 2012 at 3:46 am
Hi girlfriend!
It is so nice that you posted and I'm sure you've given many others the hope they need to continue in their battles. Your "case" is often mentioned here but now the newbies get to "meet" you.
And, as you know, you were one of the first ones that I met in the MPIP chat room and we got to know each other much better after that. You taught me so much by words and your example.
Miss you. Happy Nediversary (if that's what it is)
Stay Strong
KingStage IV 7/05 Liver mets
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- February 26, 2012 at 6:17 am
HI Everyone,
Sorry I am doing this in this manner. I can't figure out how to reply individually. lol. Ok have a good laugh.. The computer guru over here. Don and Kathie, Linda , Beth and THE TRUE BRAIN MET HERO JOHN. It is so good to see all of you and yes as I read everyone's post I get a bit misty.. I miss all of you so much and hopefully will be able to get here more often. Life is good, and yes with it's ups and downs we keep moving along.
Kathie, Allison had a little girl two weeks ago. Haven't been able to be there. Got a bug that has decided to plant itself here. I keep telling him I beat Melanoma I can beat you. Hugs to Tim. How are the little angels doing? Growing far too quickly, I am sure. Finn will be 4 in June. Will be down your way I believe late March or early April, God willing.
Don, how you be? It's been a logn time since we have chatted. What's going on.. Have a good laugh on me.. my computer just crashed again….. not even 2 years old. Oh well, Better the computer than me. How is Diane doing?
Linda and Beth I do rememvber both of you.. Glad to see you are here helping others on this journey.
Life is good..
sending everyone big hugs
Love and Light
Carole
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- February 26, 2012 at 6:17 am
HI Everyone,
Sorry I am doing this in this manner. I can't figure out how to reply individually. lol. Ok have a good laugh.. The computer guru over here. Don and Kathie, Linda , Beth and THE TRUE BRAIN MET HERO JOHN. It is so good to see all of you and yes as I read everyone's post I get a bit misty.. I miss all of you so much and hopefully will be able to get here more often. Life is good, and yes with it's ups and downs we keep moving along.
Kathie, Allison had a little girl two weeks ago. Haven't been able to be there. Got a bug that has decided to plant itself here. I keep telling him I beat Melanoma I can beat you. Hugs to Tim. How are the little angels doing? Growing far too quickly, I am sure. Finn will be 4 in June. Will be down your way I believe late March or early April, God willing.
Don, how you be? It's been a logn time since we have chatted. What's going on.. Have a good laugh on me.. my computer just crashed again….. not even 2 years old. Oh well, Better the computer than me. How is Diane doing?
Linda and Beth I do rememvber both of you.. Glad to see you are here helping others on this journey.
Life is good..
sending everyone big hugs
Love and Light
Carole
-
- February 26, 2012 at 6:17 am
HI Everyone,
Sorry I am doing this in this manner. I can't figure out how to reply individually. lol. Ok have a good laugh.. The computer guru over here. Don and Kathie, Linda , Beth and THE TRUE BRAIN MET HERO JOHN. It is so good to see all of you and yes as I read everyone's post I get a bit misty.. I miss all of you so much and hopefully will be able to get here more often. Life is good, and yes with it's ups and downs we keep moving along.
Kathie, Allison had a little girl two weeks ago. Haven't been able to be there. Got a bug that has decided to plant itself here. I keep telling him I beat Melanoma I can beat you. Hugs to Tim. How are the little angels doing? Growing far too quickly, I am sure. Finn will be 4 in June. Will be down your way I believe late March or early April, God willing.
Don, how you be? It's been a logn time since we have chatted. What's going on.. Have a good laugh on me.. my computer just crashed again….. not even 2 years old. Oh well, Better the computer than me. How is Diane doing?
Linda and Beth I do rememvber both of you.. Glad to see you are here helping others on this journey.
Life is good..
sending everyone big hugs
Love and Light
Carole
-
- February 26, 2012 at 6:17 am
HI Everyone,
Sorry I am doing this in this manner. I can't figure out how to reply individually. lol. Ok have a good laugh.. The computer guru over here. Don and Kathie, Linda , Beth and THE TRUE BRAIN MET HERO JOHN. It is so good to see all of you and yes as I read everyone's post I get a bit misty.. I miss all of you so much and hopefully will be able to get here more often. Life is good, and yes with it's ups and downs we keep moving along.
Kathie, Allison had a little girl two weeks ago. Haven't been able to be there. Got a bug that has decided to plant itself here. I keep telling him I beat Melanoma I can beat you. Hugs to Tim. How are the little angels doing? Growing far too quickly, I am sure. Finn will be 4 in June. Will be down your way I believe late March or early April, God willing.
Don, how you be? It's been a logn time since we have chatted. What's going on.. Have a good laugh on me.. my computer just crashed again….. not even 2 years old. Oh well, Better the computer than me. How is Diane doing?
Linda and Beth I do rememvber both of you.. Glad to see you are here helping others on this journey.
Life is good..
sending everyone big hugs
Love and Light
Carole
-
- February 26, 2012 at 6:17 am
HI Everyone,
Sorry I am doing this in this manner. I can't figure out how to reply individually. lol. Ok have a good laugh.. The computer guru over here. Don and Kathie, Linda , Beth and THE TRUE BRAIN MET HERO JOHN. It is so good to see all of you and yes as I read everyone's post I get a bit misty.. I miss all of you so much and hopefully will be able to get here more often. Life is good, and yes with it's ups and downs we keep moving along.
Kathie, Allison had a little girl two weeks ago. Haven't been able to be there. Got a bug that has decided to plant itself here. I keep telling him I beat Melanoma I can beat you. Hugs to Tim. How are the little angels doing? Growing far too quickly, I am sure. Finn will be 4 in June. Will be down your way I believe late March or early April, God willing.
Don, how you be? It's been a logn time since we have chatted. What's going on.. Have a good laugh on me.. my computer just crashed again….. not even 2 years old. Oh well, Better the computer than me. How is Diane doing?
Linda and Beth I do rememvber both of you.. Glad to see you are here helping others on this journey.
Life is good..
sending everyone big hugs
Love and Light
Carole
-
- February 26, 2012 at 6:17 am
HI Everyone,
Sorry I am doing this in this manner. I can't figure out how to reply individually. lol. Ok have a good laugh.. The computer guru over here. Don and Kathie, Linda , Beth and THE TRUE BRAIN MET HERO JOHN. It is so good to see all of you and yes as I read everyone's post I get a bit misty.. I miss all of you so much and hopefully will be able to get here more often. Life is good, and yes with it's ups and downs we keep moving along.
Kathie, Allison had a little girl two weeks ago. Haven't been able to be there. Got a bug that has decided to plant itself here. I keep telling him I beat Melanoma I can beat you. Hugs to Tim. How are the little angels doing? Growing far too quickly, I am sure. Finn will be 4 in June. Will be down your way I believe late March or early April, God willing.
Don, how you be? It's been a logn time since we have chatted. What's going on.. Have a good laugh on me.. my computer just crashed again….. not even 2 years old. Oh well, Better the computer than me. How is Diane doing?
Linda and Beth I do rememvber both of you.. Glad to see you are here helping others on this journey.
Life is good..
sending everyone big hugs
Love and Light
Carole
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- February 27, 2012 at 3:58 am
Glad you're still around Carole. Keep fighting the good fight. The rest of us need to see that people like you really do exits.
David stage 4 with brain mets
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- February 27, 2012 at 3:58 am
Glad you're still around Carole. Keep fighting the good fight. The rest of us need to see that people like you really do exits.
David stage 4 with brain mets
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- February 27, 2012 at 3:58 am
Glad you're still around Carole. Keep fighting the good fight. The rest of us need to see that people like you really do exits.
David stage 4 with brain mets
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- February 29, 2012 at 9:56 am
Carole!!!!!!!!!!!!!!!!!!!!!!!!! It's been sooooooo long!! Oh God, it's so good to hear from you!! I miss you, my friend!!
I hardly ever come here anymore——just stopped by tonight because i couldn't sleep, and saw your post! Can't believe Finn is 4 now, and you have a new baby grandgirlie!!!! Pictures….. we want pictures!! (I have the same email—jolino @ flash.net.
I wish so much you'd get your butt down to Texas….AFTER you get over the bug and see that new grandgirlie, of course! I never ever go anywhere these days, with the 3 girls in school, and taking care of MamaG.
I've thought about you soo much lately—Happy 11 Years Ned!! (Just celebrated my 11 yr Nediversary in December!) Trying to deal with my back right now—PET/CT showed a 12 cm x 5 cm "something"—–they think it's inflammation, and I tend to agree—I've barely been able to get around the last couple of weeks. (This, after NOT hurting at all where the "thingy" is!) Had an MRI that only showed how bad my back really is. I'll have another PET in April to make sure it's not a "metastatic neoplasm", but I have faith it's NOT! I figure running after the kids and whooping that @$$, and lugging mom around in the wheelchair has caused the inflammation! =)
You "sound" great!! I'm gonna call ya soon, promise! Hope you get over your 'bug' soon. I love and miss you soooo much!! We need to have another MPIP bash soon! Gimme enough time and I'll have one of my sisters come stay with mom and the girls. Yes… John's STILL working full-time. I don't think he'll ever retire! Going to Barbie Convention in Orange Co. California in July—I'd LOVE to have a Meet and Greet (and Eat) in SoCal after convention is over. Maybe we can work on that.
I'm thrilled to hear you're still having that affair with NED—-ain't he just the bestest??
Talk to you soon, my friend!! LOVE AND LIGHT!!!! *hugz*
~Lisa~
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- February 29, 2012 at 9:56 am
Carole!!!!!!!!!!!!!!!!!!!!!!!!! It's been sooooooo long!! Oh God, it's so good to hear from you!! I miss you, my friend!!
I hardly ever come here anymore——just stopped by tonight because i couldn't sleep, and saw your post! Can't believe Finn is 4 now, and you have a new baby grandgirlie!!!! Pictures….. we want pictures!! (I have the same email—jolino @ flash.net.
I wish so much you'd get your butt down to Texas….AFTER you get over the bug and see that new grandgirlie, of course! I never ever go anywhere these days, with the 3 girls in school, and taking care of MamaG.
I've thought about you soo much lately—Happy 11 Years Ned!! (Just celebrated my 11 yr Nediversary in December!) Trying to deal with my back right now—PET/CT showed a 12 cm x 5 cm "something"—–they think it's inflammation, and I tend to agree—I've barely been able to get around the last couple of weeks. (This, after NOT hurting at all where the "thingy" is!) Had an MRI that only showed how bad my back really is. I'll have another PET in April to make sure it's not a "metastatic neoplasm", but I have faith it's NOT! I figure running after the kids and whooping that @$$, and lugging mom around in the wheelchair has caused the inflammation! =)
You "sound" great!! I'm gonna call ya soon, promise! Hope you get over your 'bug' soon. I love and miss you soooo much!! We need to have another MPIP bash soon! Gimme enough time and I'll have one of my sisters come stay with mom and the girls. Yes… John's STILL working full-time. I don't think he'll ever retire! Going to Barbie Convention in Orange Co. California in July—I'd LOVE to have a Meet and Greet (and Eat) in SoCal after convention is over. Maybe we can work on that.
I'm thrilled to hear you're still having that affair with NED—-ain't he just the bestest??
Talk to you soon, my friend!! LOVE AND LIGHT!!!! *hugz*
~Lisa~
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- February 29, 2012 at 9:56 am
Carole!!!!!!!!!!!!!!!!!!!!!!!!! It's been sooooooo long!! Oh God, it's so good to hear from you!! I miss you, my friend!!
I hardly ever come here anymore——just stopped by tonight because i couldn't sleep, and saw your post! Can't believe Finn is 4 now, and you have a new baby grandgirlie!!!! Pictures….. we want pictures!! (I have the same email—jolino @ flash.net.
I wish so much you'd get your butt down to Texas….AFTER you get over the bug and see that new grandgirlie, of course! I never ever go anywhere these days, with the 3 girls in school, and taking care of MamaG.
I've thought about you soo much lately—Happy 11 Years Ned!! (Just celebrated my 11 yr Nediversary in December!) Trying to deal with my back right now—PET/CT showed a 12 cm x 5 cm "something"—–they think it's inflammation, and I tend to agree—I've barely been able to get around the last couple of weeks. (This, after NOT hurting at all where the "thingy" is!) Had an MRI that only showed how bad my back really is. I'll have another PET in April to make sure it's not a "metastatic neoplasm", but I have faith it's NOT! I figure running after the kids and whooping that @$$, and lugging mom around in the wheelchair has caused the inflammation! =)
You "sound" great!! I'm gonna call ya soon, promise! Hope you get over your 'bug' soon. I love and miss you soooo much!! We need to have another MPIP bash soon! Gimme enough time and I'll have one of my sisters come stay with mom and the girls. Yes… John's STILL working full-time. I don't think he'll ever retire! Going to Barbie Convention in Orange Co. California in July—I'd LOVE to have a Meet and Greet (and Eat) in SoCal after convention is over. Maybe we can work on that.
I'm thrilled to hear you're still having that affair with NED—-ain't he just the bestest??
Talk to you soon, my friend!! LOVE AND LIGHT!!!! *hugz*
~Lisa~
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