› Forums › General Melanoma Community › Long Term Survivors
- This topic has 26 replies, 8 voices, and was last updated 7 years, 2 months ago by dibo.
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- November 30, 2016 at 12:41 pm
Hi Everyone,
Someone posted below asking if there are any long term survivors. Yes, there are several long term survivors . I will post on my fb page and on the fb Melanoma pages asking them to come here to check in. One is Kathie K, David from Wi, Debbie H, and there are more. I will do my best to get them here. They are all awesome people. I saw Fen replied to your post as well as Janne. Both are a huge source of information. Hang in there..
Love and Light
Carole K
- Replies
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- November 30, 2016 at 1:01 pm
Thank you Carole (i have emailed you 2-3 times without response…)
I think any stage is welcome since this is so unpredictable. And if people know their original caracteristics, (Breslow, ulceration, mitoses) since it seems to really make a difference in survival.
My two cents
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- December 2, 2016 at 11:10 am
HI Sole,
My deeepest apologies. I have ahd issues with my iphone and my computer big time since I upgraded the phone. When I was able to gt to the page there was only one email from you. I hope you recieved my reply to your seond email.
Big Hugs and know you will make he right deicions taht is best for YOU. I am so happy you are proactive in this decision. Sending you big hugs. and lots of love.
Love and Light
Carole K
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- December 2, 2016 at 11:10 am
HI Sole,
My deeepest apologies. I have ahd issues with my iphone and my computer big time since I upgraded the phone. When I was able to gt to the page there was only one email from you. I hope you recieved my reply to your seond email.
Big Hugs and know you will make he right deicions taht is best for YOU. I am so happy you are proactive in this decision. Sending you big hugs. and lots of love.
Love and Light
Carole K
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- December 2, 2016 at 11:10 am
HI Sole,
My deeepest apologies. I have ahd issues with my iphone and my computer big time since I upgraded the phone. When I was able to gt to the page there was only one email from you. I hope you recieved my reply to your seond email.
Big Hugs and know you will make he right deicions taht is best for YOU. I am so happy you are proactive in this decision. Sending you big hugs. and lots of love.
Love and Light
Carole K
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- November 30, 2016 at 1:01 pm
Thank you Carole (i have emailed you 2-3 times without response…)
I think any stage is welcome since this is so unpredictable. And if people know their original caracteristics, (Breslow, ulceration, mitoses) since it seems to really make a difference in survival.
My two cents
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- November 30, 2016 at 1:01 pm
Thank you Carole (i have emailed you 2-3 times without response…)
I think any stage is welcome since this is so unpredictable. And if people know their original caracteristics, (Breslow, ulceration, mitoses) since it seems to really make a difference in survival.
My two cents
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- December 1, 2016 at 3:20 am
Well I guess you could say I was lucky, then unlucky, then lucky again.
First I was diagnosed as stage 1A, "lucky you caught it so early", 8 mm deep, mitotic rate of less than 1, no ulceration, no regression (this was the lucky part). Then it went to my lymphnodes 6 years later. And grew out from the nodes into a muscle in my back so the muscle was also removed so now stage 3C (obviously the unlucky part). However, after interferon, I have been fine now for over 15 years from that diagnosis.
In case they don't see this and respond, I personally know several other people at my stage who are also doing fine and we were all diagnosed around the same time (2001/2002). We all did interferon around the same time. Back then, interferon was thought to do more than we think today. Then we thought it may help the survival rate, now they talk more in time to progression.
All I can say is that we need to do whatever we can to buy time in the hope that there will be better treatment options for us down the road. If all interferon did for me was to prolong recurrence then I'm still glad I did it. These have been wonderful 15 years. Our daughter was married, we have had 7 more grandchildren and life is grand. Good luck to us all.
DebbieH, stage 3C, NED 15+ years and still kicking…
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- December 2, 2016 at 11:13 am
Debbie H
Thank you so much for responding here. You are one of the ones I was thinking of and hopefully others will come forward. As you said on my fb page. Where would we have been without MPIP. Those days were so so difficlt and this place helped keep my sanity, of sourts. How e laughed in chat, how e cried in chat and what a wealth of information f and suport for all of us. Sending you big hugs and lots of love.
Love and Light
Carole
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- December 2, 2016 at 11:13 am
Debbie H
Thank you so much for responding here. You are one of the ones I was thinking of and hopefully others will come forward. As you said on my fb page. Where would we have been without MPIP. Those days were so so difficlt and this place helped keep my sanity, of sourts. How e laughed in chat, how e cried in chat and what a wealth of information f and suport for all of us. Sending you big hugs and lots of love.
Love and Light
Carole
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- December 2, 2016 at 11:13 am
Debbie H
Thank you so much for responding here. You are one of the ones I was thinking of and hopefully others will come forward. As you said on my fb page. Where would we have been without MPIP. Those days were so so difficlt and this place helped keep my sanity, of sourts. How e laughed in chat, how e cried in chat and what a wealth of information f and suport for all of us. Sending you big hugs and lots of love.
Love and Light
Carole
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- December 1, 2016 at 3:20 am
Well I guess you could say I was lucky, then unlucky, then lucky again.
First I was diagnosed as stage 1A, "lucky you caught it so early", 8 mm deep, mitotic rate of less than 1, no ulceration, no regression (this was the lucky part). Then it went to my lymphnodes 6 years later. And grew out from the nodes into a muscle in my back so the muscle was also removed so now stage 3C (obviously the unlucky part). However, after interferon, I have been fine now for over 15 years from that diagnosis.
In case they don't see this and respond, I personally know several other people at my stage who are also doing fine and we were all diagnosed around the same time (2001/2002). We all did interferon around the same time. Back then, interferon was thought to do more than we think today. Then we thought it may help the survival rate, now they talk more in time to progression.
All I can say is that we need to do whatever we can to buy time in the hope that there will be better treatment options for us down the road. If all interferon did for me was to prolong recurrence then I'm still glad I did it. These have been wonderful 15 years. Our daughter was married, we have had 7 more grandchildren and life is grand. Good luck to us all.
DebbieH, stage 3C, NED 15+ years and still kicking…
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- December 1, 2016 at 3:20 am
Well I guess you could say I was lucky, then unlucky, then lucky again.
First I was diagnosed as stage 1A, "lucky you caught it so early", 8 mm deep, mitotic rate of less than 1, no ulceration, no regression (this was the lucky part). Then it went to my lymphnodes 6 years later. And grew out from the nodes into a muscle in my back so the muscle was also removed so now stage 3C (obviously the unlucky part). However, after interferon, I have been fine now for over 15 years from that diagnosis.
In case they don't see this and respond, I personally know several other people at my stage who are also doing fine and we were all diagnosed around the same time (2001/2002). We all did interferon around the same time. Back then, interferon was thought to do more than we think today. Then we thought it may help the survival rate, now they talk more in time to progression.
All I can say is that we need to do whatever we can to buy time in the hope that there will be better treatment options for us down the road. If all interferon did for me was to prolong recurrence then I'm still glad I did it. These have been wonderful 15 years. Our daughter was married, we have had 7 more grandchildren and life is grand. Good luck to us all.
DebbieH, stage 3C, NED 15+ years and still kicking…
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- December 1, 2016 at 11:03 am
Hi Carole,
Just happened to be logged in and saw your post. Add my name to the roll call. Diagnosed at Stage IV in Aug 2005, reached NED status finally through the MDX-010 (Ipi) compassionate use trial in early 2009 and have stayed that way ever since. No treatment since my 5th dose in Feb 2009. My profile on this site is up to date for those interested.
I fought like hell when I had to, worked with an amazing team at DFCI, advocated for myself, used this site to gain understanding, support and at times a fighting spirit (thanks Charlie S!). I also rediscovered and leaned heavily on my faith to get me through.
Not an easy road, but I am still very much here enjoying life and everything it brings! Hang in there eveyone!
Rocco
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- December 1, 2016 at 11:03 am
Hi Carole,
Just happened to be logged in and saw your post. Add my name to the roll call. Diagnosed at Stage IV in Aug 2005, reached NED status finally through the MDX-010 (Ipi) compassionate use trial in early 2009 and have stayed that way ever since. No treatment since my 5th dose in Feb 2009. My profile on this site is up to date for those interested.
I fought like hell when I had to, worked with an amazing team at DFCI, advocated for myself, used this site to gain understanding, support and at times a fighting spirit (thanks Charlie S!). I also rediscovered and leaned heavily on my faith to get me through.
Not an easy road, but I am still very much here enjoying life and everything it brings! Hang in there eveyone!
Rocco
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- December 1, 2016 at 11:03 am
Hi Carole,
Just happened to be logged in and saw your post. Add my name to the roll call. Diagnosed at Stage IV in Aug 2005, reached NED status finally through the MDX-010 (Ipi) compassionate use trial in early 2009 and have stayed that way ever since. No treatment since my 5th dose in Feb 2009. My profile on this site is up to date for those interested.
I fought like hell when I had to, worked with an amazing team at DFCI, advocated for myself, used this site to gain understanding, support and at times a fighting spirit (thanks Charlie S!). I also rediscovered and leaned heavily on my faith to get me through.
Not an easy road, but I am still very much here enjoying life and everything it brings! Hang in there eveyone!
Rocco
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- January 10, 2017 at 1:24 pm
I haven't been on this forum in a while, but saw your post and thought I'd chime in. I was originally diagnosed at Stage 4 with unknown primary. Following surgery and Gamma radiation (during surgery), I survived. I am now approaching 9 years NED! I'm still anxious, however, learning that there is still life ahead.
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- January 10, 2017 at 1:24 pm
I haven't been on this forum in a while, but saw your post and thought I'd chime in. I was originally diagnosed at Stage 4 with unknown primary. Following surgery and Gamma radiation (during surgery), I survived. I am now approaching 9 years NED! I'm still anxious, however, learning that there is still life ahead.
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- January 10, 2017 at 1:24 pm
I haven't been on this forum in a while, but saw your post and thought I'd chime in. I was originally diagnosed at Stage 4 with unknown primary. Following surgery and Gamma radiation (during surgery), I survived. I am now approaching 9 years NED! I'm still anxious, however, learning that there is still life ahead.
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- July 7, 2017 at 1:18 pm
Thanks Carol K. I am checking in too. I have been a long term poster on this Board and currently 17 years NED after Stage 3b melanoma, some may remember me. My treatment back then was surgery and radiation therapy for local control. I am sending my best wishes to everyone battling this disease.
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- September 1, 2017 at 1:42 am
Hi!
I'm a little late to the party, but I haven't visited here for awhile. This is year 20 for me! I was diagnosed stage III in 1997 and participated in the clinical trial at John Wayne Cancer Institute in Santa Monica. I have been NED since. I pray for all of you in the thick of it.
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