› Forums › General Melanoma Community › Back because it is Back
- This topic has 39 replies, 13 voices, and was last updated 8 years, 6 months ago by vivian.
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- March 29, 2016 at 3:05 am
I guess for me, it is never going to end; maybe that is good maybe that is bad.
1987 Stage III unknown primary, hot lymph nodes , surgery and silence until 1996 then recurrence to Stage IV.
Slew of surgeries, interferon, interleukin, seven recurrences through 2008; then quiet again.
And now, 29 years later, here we go again.
Swollen belly, big leg pain and bad scan.
I kind of thought (with my fingers crossed) that maybe I had paid my dues; but just saying so does not make it so.
I know the rules say no swearing………………………but I am so fucking tired of melanoma
Charlie S
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- March 29, 2016 at 3:28 am
Hey Charlie,
I was hoping that the reason I hadn't seen you for a while was you were out living life! As much as I'm glad to see you, I'm sorry that it is because the beast is back. So maybe there are some new therapies you haven't tried? The last couple of years have been extraordinary in terms of new options for melanoma warriors. Fingers crossed this time you find the combo that finally gets rid of the beast!
Cheers my friend!
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- March 29, 2016 at 3:28 am
Hey Charlie,
I was hoping that the reason I hadn't seen you for a while was you were out living life! As much as I'm glad to see you, I'm sorry that it is because the beast is back. So maybe there are some new therapies you haven't tried? The last couple of years have been extraordinary in terms of new options for melanoma warriors. Fingers crossed this time you find the combo that finally gets rid of the beast!
Cheers my friend!
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- March 29, 2016 at 3:28 am
Hey Charlie,
I was hoping that the reason I hadn't seen you for a while was you were out living life! As much as I'm glad to see you, I'm sorry that it is because the beast is back. So maybe there are some new therapies you haven't tried? The last couple of years have been extraordinary in terms of new options for melanoma warriors. Fingers crossed this time you find the combo that finally gets rid of the beast!
Cheers my friend!
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- March 29, 2016 at 3:33 am
I was born in 1987… so I can't even imagine dealing with the rollercoaster of melanoma my entire lifetime! So sorry it is back, but like Janner said, the new therapies out now could be the magic bullet that keeps the beast at bay for good. And, I think you're totally entitled to swear for this news!
All the best to you,
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- March 29, 2016 at 3:33 am
I was born in 1987… so I can't even imagine dealing with the rollercoaster of melanoma my entire lifetime! So sorry it is back, but like Janner said, the new therapies out now could be the magic bullet that keeps the beast at bay for good. And, I think you're totally entitled to swear for this news!
All the best to you,
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- March 29, 2016 at 3:33 am
I was born in 1987… so I can't even imagine dealing with the rollercoaster of melanoma my entire lifetime! So sorry it is back, but like Janner said, the new therapies out now could be the magic bullet that keeps the beast at bay for good. And, I think you're totally entitled to swear for this news!
All the best to you,
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- March 29, 2016 at 12:58 pm
Oh Charlie-
Noted the rules about swearing, but i couldnt have said it any better and dont blame you.
SO sorry to hear its back again….hard to believe now 8 years since all quiet in 2008…..hoping with some new drugs it will be gone and quiet again….
Please keep us posted, and "swear away".
Best,
jenny
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- March 29, 2016 at 12:58 pm
Oh Charlie-
Noted the rules about swearing, but i couldnt have said it any better and dont blame you.
SO sorry to hear its back again….hard to believe now 8 years since all quiet in 2008…..hoping with some new drugs it will be gone and quiet again….
Please keep us posted, and "swear away".
Best,
jenny
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- March 29, 2016 at 12:58 pm
Oh Charlie-
Noted the rules about swearing, but i couldnt have said it any better and dont blame you.
SO sorry to hear its back again….hard to believe now 8 years since all quiet in 2008…..hoping with some new drugs it will be gone and quiet again….
Please keep us posted, and "swear away".
Best,
jenny
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- March 29, 2016 at 7:01 pm
Hi Charlie! I think you summed it up perfectly! I and so many others can relate to the frustration, but no one more than you! However, I think of you as the "Rocky" in the melanoma ring and I know you will have a knock out with this beast once and for all. Let's keep that score 29 – 0! Your story has continued to inspire me and give me hope…..and as long as there is hope, anything is possible!
Cheering for Charlie!
Swanee
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- March 29, 2016 at 7:01 pm
Hi Charlie! I think you summed it up perfectly! I and so many others can relate to the frustration, but no one more than you! However, I think of you as the "Rocky" in the melanoma ring and I know you will have a knock out with this beast once and for all. Let's keep that score 29 – 0! Your story has continued to inspire me and give me hope…..and as long as there is hope, anything is possible!
Cheering for Charlie!
Swanee
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- March 29, 2016 at 7:01 pm
Hi Charlie! I think you summed it up perfectly! I and so many others can relate to the frustration, but no one more than you! However, I think of you as the "Rocky" in the melanoma ring and I know you will have a knock out with this beast once and for all. Let's keep that score 29 – 0! Your story has continued to inspire me and give me hope…..and as long as there is hope, anything is possible!
Cheering for Charlie!
Swanee
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- March 29, 2016 at 11:39 pm
Yo Charlie,
Melanoma is definitely a matherfarking corksucking bastage (I just borrowed these from the Johnny Dangerously film) I was hoping you stepped away because as somebody else said, you were 'all better and finally done fighting the beast enjoying life on a tropical island laying in a hammock in the shade while being fed grapes' by a very attractive(and 29 years younger) ladyfriend 'instead of fighting the old batch named melanoma. As you have always done, I know you will inspire this board and get through this (while fighting doctors and bucking the healthcare system at the same time). with flying colors. People here are right when they say there are many new therapies. So much so that I haven't really been able to keep up myself. I hope this is the last fight for you with the old batch, and I kind of hope you go away because, well, you sort of scare me when you are in full battle mode(whether it be about you or someone else).
Peace
John
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- March 29, 2016 at 11:39 pm
Yo Charlie,
Melanoma is definitely a matherfarking corksucking bastage (I just borrowed these from the Johnny Dangerously film) I was hoping you stepped away because as somebody else said, you were 'all better and finally done fighting the beast enjoying life on a tropical island laying in a hammock in the shade while being fed grapes' by a very attractive(and 29 years younger) ladyfriend 'instead of fighting the old batch named melanoma. As you have always done, I know you will inspire this board and get through this (while fighting doctors and bucking the healthcare system at the same time). with flying colors. People here are right when they say there are many new therapies. So much so that I haven't really been able to keep up myself. I hope this is the last fight for you with the old batch, and I kind of hope you go away because, well, you sort of scare me when you are in full battle mode(whether it be about you or someone else).
Peace
John
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- March 29, 2016 at 11:39 pm
Yo Charlie,
Melanoma is definitely a matherfarking corksucking bastage (I just borrowed these from the Johnny Dangerously film) I was hoping you stepped away because as somebody else said, you were 'all better and finally done fighting the beast enjoying life on a tropical island laying in a hammock in the shade while being fed grapes' by a very attractive(and 29 years younger) ladyfriend 'instead of fighting the old batch named melanoma. As you have always done, I know you will inspire this board and get through this (while fighting doctors and bucking the healthcare system at the same time). with flying colors. People here are right when they say there are many new therapies. So much so that I haven't really been able to keep up myself. I hope this is the last fight for you with the old batch, and I kind of hope you go away because, well, you sort of scare me when you are in full battle mode(whether it be about you or someone else).
Peace
John
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- March 30, 2016 at 3:30 am
Charlie,
very sorry to hear the years, surgeries and treatments you have suffered. My 18 yr old son did interleukin and interferon and many surgeries along w radiation and keytruda. All this in the last 19 months and never a decent scan. I dream of 29 years for him. But truthfully….your frustration seems appropriate. Those very words go through all our minds daily I think. To live w the constant melanoma cloud hanging over. Just not sure how anyone could keep going w cheer. I hope the newest stuff out kicks this crap once and for all for you! Go for it!!
Keep us posted. This battle is a little easier with support and knowledge of people are in it too!!
Kerri
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- March 30, 2016 at 3:30 am
Charlie,
very sorry to hear the years, surgeries and treatments you have suffered. My 18 yr old son did interleukin and interferon and many surgeries along w radiation and keytruda. All this in the last 19 months and never a decent scan. I dream of 29 years for him. But truthfully….your frustration seems appropriate. Those very words go through all our minds daily I think. To live w the constant melanoma cloud hanging over. Just not sure how anyone could keep going w cheer. I hope the newest stuff out kicks this crap once and for all for you! Go for it!!
Keep us posted. This battle is a little easier with support and knowledge of people are in it too!!
Kerri
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- March 30, 2016 at 3:30 am
Charlie,
very sorry to hear the years, surgeries and treatments you have suffered. My 18 yr old son did interleukin and interferon and many surgeries along w radiation and keytruda. All this in the last 19 months and never a decent scan. I dream of 29 years for him. But truthfully….your frustration seems appropriate. Those very words go through all our minds daily I think. To live w the constant melanoma cloud hanging over. Just not sure how anyone could keep going w cheer. I hope the newest stuff out kicks this crap once and for all for you! Go for it!!
Keep us posted. This battle is a little easier with support and knowledge of people are in it too!!
Kerri
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- March 30, 2016 at 3:52 am
Hi Charlie – I was wondering where our favorite bartender was. I'm so sorry to hear you're dealing with this again. Like Jan says, there are more options now, hopefully one that can help you. Please let us know what your plan is once you have one. I'll be interested in hearing what your next step is, you've always done things your own way and it's worked well for you in the past. Good luck with everything Charlie!
DebbieH
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- March 30, 2016 at 3:52 am
Hi Charlie – I was wondering where our favorite bartender was. I'm so sorry to hear you're dealing with this again. Like Jan says, there are more options now, hopefully one that can help you. Please let us know what your plan is once you have one. I'll be interested in hearing what your next step is, you've always done things your own way and it's worked well for you in the past. Good luck with everything Charlie!
DebbieH
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- March 30, 2016 at 3:52 am
Hi Charlie – I was wondering where our favorite bartender was. I'm so sorry to hear you're dealing with this again. Like Jan says, there are more options now, hopefully one that can help you. Please let us know what your plan is once you have one. I'll be interested in hearing what your next step is, you've always done things your own way and it's worked well for you in the past. Good luck with everything Charlie!
DebbieH
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- March 30, 2016 at 10:50 am
Sorry to hear this news, Charlie…. and swear away… I did when I read your post! As others have noted there are a number of new treatments since 2008. I hope you find a combo that works for you. Your posts on this board gave many of us hope back in the day when we had none and helped us become advocates (aka fighters) in our own treatment plans. Let us know if we can return the favor. Hang in there!
-Rocco, IV since 2005, NED since 2009, IPI (10mg/kg) responder
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- March 30, 2016 at 10:50 am
Sorry to hear this news, Charlie…. and swear away… I did when I read your post! As others have noted there are a number of new treatments since 2008. I hope you find a combo that works for you. Your posts on this board gave many of us hope back in the day when we had none and helped us become advocates (aka fighters) in our own treatment plans. Let us know if we can return the favor. Hang in there!
-Rocco, IV since 2005, NED since 2009, IPI (10mg/kg) responder
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- March 30, 2016 at 10:50 am
Sorry to hear this news, Charlie…. and swear away… I did when I read your post! As others have noted there are a number of new treatments since 2008. I hope you find a combo that works for you. Your posts on this board gave many of us hope back in the day when we had none and helped us become advocates (aka fighters) in our own treatment plans. Let us know if we can return the favor. Hang in there!
-Rocco, IV since 2005, NED since 2009, IPI (10mg/kg) responder
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- March 30, 2016 at 3:03 pm
Nooooooooo! Oh Charlie, I'm so sorry to hear this. You certainly have been through the wringer. I hope and pray that your next treatment completely kicks Mel to the curb!
Shalom,
Julie
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- March 30, 2016 at 3:03 pm
Nooooooooo! Oh Charlie, I'm so sorry to hear this. You certainly have been through the wringer. I hope and pray that your next treatment completely kicks Mel to the curb!
Shalom,
Julie
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- March 30, 2016 at 3:03 pm
Nooooooooo! Oh Charlie, I'm so sorry to hear this. You certainly have been through the wringer. I hope and pray that your next treatment completely kicks Mel to the curb!
Shalom,
Julie
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- March 30, 2016 at 6:50 pm
Charlie,
I first started on this board back in 2007 when my husband was first diagnosed – you were there giving hope. This disease sucks, not doubt, nothing good about it.
I just want to say – I'm sorry you are dealing with it again.
Rebecca
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- March 30, 2016 at 9:59 pm
Well, shoot, Charlie, I hate to see this post from you! When I first joined this forum in 2010 with an agressive stage 3, one of the first posts I read was your "Roll Call for the Undead", in which you asked for all stage 4 people to chime in. It was incredibly helpful to me to see how many people there were living life years after reaching stage 4. So, thank you for all your funny and profound posts over these years. I'm holding you in the light and hoping you can kick this freaking thing again!
Lear
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- March 30, 2016 at 9:59 pm
Well, shoot, Charlie, I hate to see this post from you! When I first joined this forum in 2010 with an agressive stage 3, one of the first posts I read was your "Roll Call for the Undead", in which you asked for all stage 4 people to chime in. It was incredibly helpful to me to see how many people there were living life years after reaching stage 4. So, thank you for all your funny and profound posts over these years. I'm holding you in the light and hoping you can kick this freaking thing again!
Lear
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- March 30, 2016 at 9:59 pm
Well, shoot, Charlie, I hate to see this post from you! When I first joined this forum in 2010 with an agressive stage 3, one of the first posts I read was your "Roll Call for the Undead", in which you asked for all stage 4 people to chime in. It was incredibly helpful to me to see how many people there were living life years after reaching stage 4. So, thank you for all your funny and profound posts over these years. I'm holding you in the light and hoping you can kick this freaking thing again!
Lear
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- March 30, 2016 at 6:50 pm
Charlie,
I first started on this board back in 2007 when my husband was first diagnosed – you were there giving hope. This disease sucks, not doubt, nothing good about it.
I just want to say – I'm sorry you are dealing with it again.
Rebecca
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- March 30, 2016 at 6:50 pm
Charlie,
I first started on this board back in 2007 when my husband was first diagnosed – you were there giving hope. This disease sucks, not doubt, nothing good about it.
I just want to say – I'm sorry you are dealing with it again.
Rebecca
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