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Living the mel life Go Warriors!

Forums General Melanoma Community Living the mel life Go Warriors!

  • Post
    mom3girlsFL
    Participant

    Hi Everyone,

    Its been a while since i've posted but I linger often and lift everyone daily in my thoughts and prayers!

    I have been a warrior since 2003 stage 1, stage 3 in 2010 groin lymph node involvement. Did interferon till recurrence again, had radical lymph node dissection then watch and wait. 5 days before hitting 5 years I walk into oncologist and hear the dreaded "we've got a problem".  Honestly, before this appointment i was feeling embarrassed to even have these appointments when other people were really dealing with cancer!  So, stage 4 lung and retroperinoteal involvement late 2015.

    Anyway,  have an auto immune disease which makes treatment tricky but started with full dose tafinlar mekinist combo. Had immediate response 3 mth scan but my body was a mess! We switched to zelboraf cotellic to see if side effects would lessen, but those meds created red purplish spots all over my body head to toe! Not funny, but yeah it was! Back to lower dose taf/mek combo.

    The point of all this? Well, im still here. Still responding as of scan in june. Some days bite the big one-cant move out of bed, sleep half the day away…BUT, i also have really good days where i can be "normal"-go shopping, eat out, live! 

    I really do consider myself lucky and i hurt so deeply for those of you suffering so much.  

    I so appreciate the intelligent and informative posters out there who selflessly work to keep melanoma info current.  And, mostly, i am so grateful for this community who continually cheer each other on and encourage the fight.

    Living WITH melanoma,

    Laurie

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  • Replies
      Polymath
      Participant

      Hi Laurie,

      Good to hear positive mel stories, but as important, positive mel attitudes.  I too share the feeling that although my disease is quite serious, and I know I am living on the brink each and every day, there just is no upside to dwelling on it, and going negative.  Interestingly the past few years have found me happier in many ways as I celebrate each day, and do a big fist-pump every six-months when I visit the dentist.  You see, I made it.  Every thing is a milestone reached and every moment another blessing which must be appreciated now, since tomorrow is not a given.  Lastly, I find this board therapeutic.  It allows me to focus, and hopefully add insight to others in their plight, and strangely, it completely takes my mind off my own problem.  Its understood everyone will deal with this beast in his own way.  But fighting the beast does not mean making the fight a battle inside you.

      Gary

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      Polymath
      Participant

      Hi Laurie,

      Good to hear positive mel stories, but as important, positive mel attitudes.  I too share the feeling that although my disease is quite serious, and I know I am living on the brink each and every day, there just is no upside to dwelling on it, and going negative.  Interestingly the past few years have found me happier in many ways as I celebrate each day, and do a big fist-pump every six-months when I visit the dentist.  You see, I made it.  Every thing is a milestone reached and every moment another blessing which must be appreciated now, since tomorrow is not a given.  Lastly, I find this board therapeutic.  It allows me to focus, and hopefully add insight to others in their plight, and strangely, it completely takes my mind off my own problem.  Its understood everyone will deal with this beast in his own way.  But fighting the beast does not mean making the fight a battle inside you.

      Gary

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      Polymath
      Participant

      Hi Laurie,

      Good to hear positive mel stories, but as important, positive mel attitudes.  I too share the feeling that although my disease is quite serious, and I know I am living on the brink each and every day, there just is no upside to dwelling on it, and going negative.  Interestingly the past few years have found me happier in many ways as I celebrate each day, and do a big fist-pump every six-months when I visit the dentist.  You see, I made it.  Every thing is a milestone reached and every moment another blessing which must be appreciated now, since tomorrow is not a given.  Lastly, I find this board therapeutic.  It allows me to focus, and hopefully add insight to others in their plight, and strangely, it completely takes my mind off my own problem.  Its understood everyone will deal with this beast in his own way.  But fighting the beast does not mean making the fight a battle inside you.

      Gary

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      Bubbles
      Participant

      Amen, Laurie! Hopefully your side effects will improve along with your melanoma….but you've got it right! Someday, I might die from melanoma….but not today! Hang in there! I wish you well.  Celeste

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      Bubbles
      Participant

      Amen, Laurie! Hopefully your side effects will improve along with your melanoma….but you've got it right! Someday, I might die from melanoma….but not today! Hang in there! I wish you well.  Celeste

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      Bubbles
      Participant

      Amen, Laurie! Hopefully your side effects will improve along with your melanoma….but you've got it right! Someday, I might die from melanoma….but not today! Hang in there! I wish you well.  Celeste

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      Maria C
      Participant

      Laurie, thanks so much for sharing your mel journey with us – popping in with your story of best & worst so others can feel comfortable sharing theirs. I turn to this board most days just for the therapy of it, and the connection, even when I don't post. The information/research/in-the-trench details of fellow patients are invaluable, but the inspiration to be a "warrior" every day can only be known by those of us living with "the beast," and it's so comforting to touch and be touched by others on this horrible ride.

      I love what Gary said (usually do, btw!), about the beast not having to be a battle within you. I think that's the hardest part for me, keeping it external and not internalizing everything. I've heard people say, "Tough times don't last. Tough people do." – which really bothers me because I KNOW I'm tough but I don't really know if I'm going to last! 

      As I go to bed tonight still sore from my second craniotomy of the summer, I wish everyone sweet peace for at least a handful of hours…. 

      Be well, tonight.

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      Maria C
      Participant

      Laurie, thanks so much for sharing your mel journey with us – popping in with your story of best & worst so others can feel comfortable sharing theirs. I turn to this board most days just for the therapy of it, and the connection, even when I don't post. The information/research/in-the-trench details of fellow patients are invaluable, but the inspiration to be a "warrior" every day can only be known by those of us living with "the beast," and it's so comforting to touch and be touched by others on this horrible ride.

      I love what Gary said (usually do, btw!), about the beast not having to be a battle within you. I think that's the hardest part for me, keeping it external and not internalizing everything. I've heard people say, "Tough times don't last. Tough people do." – which really bothers me because I KNOW I'm tough but I don't really know if I'm going to last! 

      As I go to bed tonight still sore from my second craniotomy of the summer, I wish everyone sweet peace for at least a handful of hours…. 

      Be well, tonight.

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      Maria C
      Participant

      Laurie, thanks so much for sharing your mel journey with us – popping in with your story of best & worst so others can feel comfortable sharing theirs. I turn to this board most days just for the therapy of it, and the connection, even when I don't post. The information/research/in-the-trench details of fellow patients are invaluable, but the inspiration to be a "warrior" every day can only be known by those of us living with "the beast," and it's so comforting to touch and be touched by others on this horrible ride.

      I love what Gary said (usually do, btw!), about the beast not having to be a battle within you. I think that's the hardest part for me, keeping it external and not internalizing everything. I've heard people say, "Tough times don't last. Tough people do." – which really bothers me because I KNOW I'm tough but I don't really know if I'm going to last! 

      As I go to bed tonight still sore from my second craniotomy of the summer, I wish everyone sweet peace for at least a handful of hours…. 

      Be well, tonight.

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      WithinMySkin
      Participant
      I’m so sorry you’re going through this STILL, Laurie! Ugh what a roller coaster! I’m so glad that you’re posting and still have your sense of humor. I find that this forum and having a good laugh at life and the situation always helps! (I call my lymphedema leg my ‘peg leg’ when it’s all wrapped at night!) Keep fighting – we’re all here for you!

      Lauren

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      WithinMySkin
      Participant
      I’m so sorry you’re going through this STILL, Laurie! Ugh what a roller coaster! I’m so glad that you’re posting and still have your sense of humor. I find that this forum and having a good laugh at life and the situation always helps! (I call my lymphedema leg my ‘peg leg’ when it’s all wrapped at night!) Keep fighting – we’re all here for you!

      Lauren

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      WithinMySkin
      Participant
      I’m so sorry you’re going through this STILL, Laurie! Ugh what a roller coaster! I’m so glad that you’re posting and still have your sense of humor. I find that this forum and having a good laugh at life and the situation always helps! (I call my lymphedema leg my ‘peg leg’ when it’s all wrapped at night!) Keep fighting – we’re all here for you!

      Lauren

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      Mamapegela
      Participant

      Thanks everyone for your uplifting words.  It is easy to slip into living in fear of "what's next". But today we are alive and breathing, and I'm grateful to be here.  This forum helps so much.  Blessings to all of you.

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      Mamapegela
      Participant

      Thanks everyone for your uplifting words.  It is easy to slip into living in fear of "what's next". But today we are alive and breathing, and I'm grateful to be here.  This forum helps so much.  Blessings to all of you.

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      Mamapegela
      Participant

      Thanks everyone for your uplifting words.  It is easy to slip into living in fear of "what's next". But today we are alive and breathing, and I'm grateful to be here.  This forum helps so much.  Blessings to all of you.

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