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10 Years NED …. after lung and brain mets.. NEVER EVER GIVE UP HOPE

Forums Caregiver Community 10 Years NED …. after lung and brain mets.. NEVER EVER GIVE UP HOPE

  • Post
    Carole K
    Participant

    Hi Everyone,

    Hi Everyone,

         It has been awhile since I have posted.  I lived here at one point from 1999 until around 2007.  It was my life, my support, my escape, my everything as I walked the walk of lung mets and brain met.  I had just gotten divorced when dx with my brain met and this is where I would come  to laugh, to cry and get opinions.  MPIP was my ROCK and I would like to think all of us were ROCKS for each other.  I remember the laughs we had in chat and at times we had to take a deep breath when a newbie came in.  We all knew each other, we knew our families, we got together in Asheville twice, florida, Vancouver, Camano Island, and Dallas.  I know I personally would never have gotten through those difficult times withoiut everyone here. 

    Kathie and Tim, Don W, Dian from Spokane, Angie, Mustang Sally, Charlie S, Kim K, KIm Iowa, The Indiana ladies, Claire and Meghan, Guten Tag, Nan, Leslie F and David, Dan and Jackie T, Kag adn her husband Jim, Johno, John from florida, Bill MTL, Pam and Mike Ok, Claudia V., Mary P, Dawn C, Debbie R, Debbie NC, Barbie Girl, Melissa L, Melanie, Heather who had moved to canada to be wtih the love of her life,Whoha, Bill Fla, M arie and Ed, Wendy, Mr.Ed, Shannon, Amy B., Jackie Doss, David from Richmond and later WI..Carver, Janner, Lennie, Misty, Swatts,Jack NYC,and my friends Bonnie and Chip who are still with me on this journey despite loosing thier spouses……   and oh so many many more.    I love and miss all of you soooooooooooooo much. 

    I was dx in '95 and did well until the middle of my divorce…  and 4 1/2 yrs. later.. Wham!!!!!!! Lung Mets..  then ten months later Wham!!!  Brain Met.  I decided to do alternative therapy.  Why?  I knew my options and I knew the survival rate. I PERSONALLY did not want to be sick if I had a short time to live. I had just gotten divorced..  LIFE IS TO LIVE TO LOVE AND TO LAUGH..  and that was what I wanted to do…..

    I chose to do Anthroposophy medicine giving myself injections.  of mistletoe, astragalus and formica.  it worked for me.  I also decided to be very very selfish I NEEDED TO TAKE CARE OF CAROLE.  As patients and caregivers we have to do that.  We have to take the time for ourselves , down time and just time for ME..  BE SELFISH,  DO WHAT YOU WANT TO DO.. TAKE CARE OF YOU. 

    I know how difficult this journey can be NEVER EVER GIVE UP HOPE and do the treatment YOU WANT TO DO.  YOU KNOW YOUR BODY,  IF YOU DON'T AGREE WITH YOUR DOCTOR, TELL HIM.  I left a doctor because he would not respect I WAS THE PATIENT..  it was MY LIFE. 

    Ten years has not been without it's mountains to climb.  I keep putting one foot in front of the other…  In this time I have built a new house, lived in Sanibel Florida and Asheville, NC before coming back to reality and live life at the beach.  I have been blessed to see both of my daughters get married to wonderful young men and to see the love of my life.. MY GRANDSON come to this world.  I alwasy knew a perfect man would come along.. He is 2 1/2 and the love of my life, he makes me laugh, laugh til tears roll down my face, we talk and then Mommy has to be ther translator.  lol.  He makes my heart smile.  I am so blessed.

    MELANOMA HAS BROUGHT ME TEARS

    MELANOMA HAS BROUGHT ME FEARS

    MELANOMA HAS BROUGH TME PAIN,

    MELANOMA HAS BROUGHT ME ANGER

    MELANOMA HAS BROUGHT ME RAGE

    MELANOMA HAS BROUGHT ME FRUSTRATION

    MELANOMA HAS BROUGHT ME SORROW

    IT HAS ALSO

    MELANOMA HAS BROUGHT ME SMILES

    MELANOMA HAS BROUGHT ME JOY

    MELANOMA HAS BROUGHT ME HAPPINESS

    MELANOMA HAS BROUGHT ME COURAGE

    MELANOMA HAS BROUGHT ME STRENGTH

    MELANOMA HAS BROUGHT ME FAITH

    MELANOMA HAS BROUGHT M E HOPE

    MELANOMA HAS BROUGHT ME LAUGHTER

    MELANOMA HAS BROUGHT ME THE OPPORTUNITY TO MAKE AMENDS AND TO NOT LEAVE ANY QUESTIONS UNANSWERED FOR MY DAUGHTERS.  IT HAS GIVEN ME THE OPPORTUNITY TO SAY GOOD BYE..  SOME PEOPLE NEVER HAVE THAT CHANCE. 

    IT DOESN'T MEAN LIFE IS PERFECT BY ANY MEANS.  Just look for the gifts this beast has brought us.  take the time to tell everyone in your life how much you love themi, write them letters for them to treasure, take lots of pictures, make lots of memories.  Hang TOUIGH AND KEEP MOVING FORWARD.  To each of you I wish you love, light and joy in your life

    Love and Light

    Carole

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  • Replies
      Suzan AB
      Participant

      Wow, Thanks Carole,

      I received hard news today, confirmation that I have lesions in my lungs that are growing.  I am a very distracted individual, my husband says that we suffer from Fragmented Task Disorder Syndrome which manifest itself in distraction.  So I do the same thing with my illness, pay attention one minute, then escape the next by getting myself distracted.  I pop in and view comments, then I pop out.  Pontificate a bit like I know something, when in fact I should just ask for help!

      It is very hard to come to this board and say out loud (or type on the screen) that I have a problem called stage IV melanoma to my lungs and chest wall.  Hell, I wish Sharon from Reno was still around…

      Anyways, thank you for the hope in your post.  I would like to know more about your treatments and you can email me, I am on the board.

      My best and congrats on the new man in your world…grandkids are the bestest thing in the whole wide world!

      Suzan AB

      In shock!

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      Suzan AB
      Participant

      Wow, Thanks Carole,

      I received hard news today, confirmation that I have lesions in my lungs that are growing.  I am a very distracted individual, my husband says that we suffer from Fragmented Task Disorder Syndrome which manifest itself in distraction.  So I do the same thing with my illness, pay attention one minute, then escape the next by getting myself distracted.  I pop in and view comments, then I pop out.  Pontificate a bit like I know something, when in fact I should just ask for help!

      It is very hard to come to this board and say out loud (or type on the screen) that I have a problem called stage IV melanoma to my lungs and chest wall.  Hell, I wish Sharon from Reno was still around…

      Anyways, thank you for the hope in your post.  I would like to know more about your treatments and you can email me, I am on the board.

      My best and congrats on the new man in your world…grandkids are the bestest thing in the whole wide world!

      Suzan AB

      In shock!

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        elefk
        Participant

        I am also stage 4 and new to this. I am also interested in hearing about treatments.

        Earl

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        elefk
        Participant

        I am also stage 4 and new to this. I am also interested in hearing about treatments.

        Earl

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      killmel
      Participant

      Carole,

       

      Thank you for posting. You give us all hope.

      I believe in quality of life and I am  now facing to pick a treatment for my stage 3.

      I am very interested holistic treatment and in knowing more about Anthroposophy medicine & giving yourself injections   of mistletoe, astragalus and formica.

      Here is my email: [email protected]. I sincerely would appreciate you sending me an email with your email address or phone number so I can ask you some questions if you have time.

      Thank you so much,

      Wendy

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      killmel
      Participant

      Carole,

       

      Thank you for posting. You give us all hope.

      I believe in quality of life and I am  now facing to pick a treatment for my stage 3.

      I am very interested holistic treatment and in knowing more about Anthroposophy medicine & giving yourself injections   of mistletoe, astragalus and formica.

      Here is my email: [email protected]. I sincerely would appreciate you sending me an email with your email address or phone number so I can ask you some questions if you have time.

      Thank you so much,

      Wendy

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      ValinMtl
      Participant

      Thank you Carole for this.  It is so inspiring.  You're right this diagnosis gives us time to tell those in our lives how much we love them and create memories.

      Suzan so sorry about about your new challenges, I too often think about Sharon from Reno, Kathie A. from Poway, as well as other fallen warriors who fought so hard against the beast and still had time to give support to others…  Val

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      ValinMtl
      Participant

      Thank you Carole for this.  It is so inspiring.  You're right this diagnosis gives us time to tell those in our lives how much we love them and create memories.

      Suzan so sorry about about your new challenges, I too often think about Sharon from Reno, Kathie A. from Poway, as well as other fallen warriors who fought so hard against the beast and still had time to give support to others…  Val

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      glewis923
      Participant

      Dear Carole-  I was dx with lung mets (for sure- just "suspicious spots" for 6 mts.) Aug. 2010.  I have just been dx with 9 sus- centimeter brain "mets" TUMORS !!!  anyway,  your story gives me some much needed hope.  I'm getting "conventional" treatment I guess, but would really like to know what you did- treatment -wise.  

      Please email me :    [email protected]   with any info. you can.  Just copy same of other requests! 

      Thank You so much,  Love, Grady & Family.

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      glewis923
      Participant

      Dear Carole-  I was dx with lung mets (for sure- just "suspicious spots" for 6 mts.) Aug. 2010.  I have just been dx with 9 sus- centimeter brain "mets" TUMORS !!!  anyway,  your story gives me some much needed hope.  I'm getting "conventional" treatment I guess, but would really like to know what you did- treatment -wise.  

      Please email me :    [email protected]   with any info. you can.  Just copy same of other requests! 

      Thank You so much,  Love, Grady & Family.

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      Jydnew
      Participant

      What wonderful news!  Your message is so powerful and life affirming.  May you have many many more years of NED!

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      Jydnew
      Participant

      What wonderful news!  Your message is so powerful and life affirming.  May you have many many more years of NED!

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      BethA in VA
      Participant

      What a nice post.  I remember you and have often thought of you. Always loved your signature.  I'm glad you posted and are giving hope to many.  And I'm glad u r happy.  Beth   3/B

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      BethA in VA
      Participant

      What a nice post.  I remember you and have often thought of you. Always loved your signature.  I'm glad you posted and are giving hope to many.  And I'm glad u r happy.  Beth   3/B

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      JoanR
      Participant

      Carole, your post was wonderful, It will provide so much encouragement for the ones who are fighting now. It is 10 years since I fisrt found MPIP and had the priviledge to get to know so many warriors and survivors. We now have our dear friend Pat in a fight against breast cancer, and I know all who have met here will be sending her prayers and good wishes.  Recently, a lady I met in Victoria who was dx, has been instrumental in having the first ban on underage tanning in Canada….All of these steps are a result of this Melanoma community. Please keep in touch and stay well and continue to live well……Love to you Joan

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      JoanR
      Participant

      Carole, your post was wonderful, It will provide so much encouragement for the ones who are fighting now. It is 10 years since I fisrt found MPIP and had the priviledge to get to know so many warriors and survivors. We now have our dear friend Pat in a fight against breast cancer, and I know all who have met here will be sending her prayers and good wishes.  Recently, a lady I met in Victoria who was dx, has been instrumental in having the first ban on underage tanning in Canada….All of these steps are a result of this Melanoma community. Please keep in touch and stay well and continue to live well……Love to you Joan

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      JakeinNY
      Participant

      Congratulations Carole!!!

      Keep posting at least once per year.

      I would think that many people would like to know of any changes in lifestyle that you made…diet, etc. that could work for another person.

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      JakeinNY
      Participant

      Congratulations Carole!!!

      Keep posting at least once per year.

      I would think that many people would like to know of any changes in lifestyle that you made…diet, etc. that could work for another person.

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      Janner
      Participant

      Keep on keeping on, Carole!  Nice to hear from you.  Dian posted an anniversary for you a couple of days ago as well.

      Best wishes,

      Janner

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      Janner
      Participant

      Keep on keeping on, Carole!  Nice to hear from you.  Dian posted an anniversary for you a couple of days ago as well.

      Best wishes,

      Janner

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      jag
      Participant

      Carole, 

      Thanks for giving hope, I never knew anybody who had survived with brain mets, until I searched and found your patnet.  10 years is an amazing stretch.  I hope it lasts at least 30 more.

      God Bless

      John 

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      jag
      Participant

      Carole, 

      Thanks for giving hope, I never knew anybody who had survived with brain mets, until I searched and found your patnet.  10 years is an amazing stretch.  I hope it lasts at least 30 more.

      God Bless

      John 

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      BarbieGirl
      Participant

      Carole….I love you!!  I miss you, too, and the "bashes" we used to have.  Oh, you left out Michigan and Mexico (NY), but who's counting?  =) We defnitely need another bash soon (but can't do it this summer, unless it's around the Ft. Lauderdale/Miami area—Barbie Convention, ya know!)   

      Dear sweet lady, YOU are the one that was, and still is a ROCK for so many of us!   Thank you for giving HOPE to all of us!

      I'll try to call you soon and we'll catch up—-been WAY too long!!  Love you "muchly"!!

      *hugz*

      ~Lisa~

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      BarbieGirl
      Participant

      Carole….I love you!!  I miss you, too, and the "bashes" we used to have.  Oh, you left out Michigan and Mexico (NY), but who's counting?  =) We defnitely need another bash soon (but can't do it this summer, unless it's around the Ft. Lauderdale/Miami area—Barbie Convention, ya know!)   

      Dear sweet lady, YOU are the one that was, and still is a ROCK for so many of us!   Thank you for giving HOPE to all of us!

      I'll try to call you soon and we'll catch up—-been WAY too long!!  Love you "muchly"!!

      *hugz*

      ~Lisa~

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      MRFUser2011
      Participant

      Carole, thank you for your beautiful post!  I am newly dx stage IV and like many others here, would like more info about the treatments you gave yourself.  My email is: [email protected] and a copy of whatever you send is welcomed.  I am new to this board and can see how much hope your post will bring to many.

      Blessings to you, Shari

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      MRFUser2011
      Participant

      Carole, thank you for your beautiful post!  I am newly dx stage IV and like many others here, would like more info about the treatments you gave yourself.  My email is: [email protected] and a copy of whatever you send is welcomed.  I am new to this board and can see how much hope your post will bring to many.

      Blessings to you, Shari

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      molly
      Participant

       Carole,

      What a great post!  Thanks for sharing and giving hope and encouragement.

      So glad to hear you are doing well and enjoying that grandson.  

       molly

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      molly
      Participant

       Carole,

      What a great post!  Thanks for sharing and giving hope and encouragement.

      So glad to hear you are doing well and enjoying that grandson.  

       molly

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      dian in spokane
      Participant

      Carole! I am so glad you found your way to the board to make this post. So many people will gain encouragement from it.

      I hope you continue to stay NED forever!

       

      dian

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      dian in spokane
      Participant

      Carole! I am so glad you found your way to the board to make this post. So many people will gain encouragement from it.

      I hope you continue to stay NED forever!

       

      dian

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      Rncab218
      Participant

      Congratulations Carole!!

      I read posts almost daily but dont post myself often but when i saw this i just wanted to thank you for all you do.  When i was diagnosed in may 2009., i somehow found your email online and your help got me through a very tough time.  I'm glad you are still doing well and thank you again for all your help and kindness

      Cindy

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      Rncab218
      Participant

      Congratulations Carole!!

      I read posts almost daily but dont post myself often but when i saw this i just wanted to thank you for all you do.  When i was diagnosed in may 2009., i somehow found your email online and your help got me through a very tough time.  I'm glad you are still doing well and thank you again for all your help and kindness

      Cindy

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      King
      Participant

      Carole,

       

      I am so happy that you posted this wonderful news.  I'm sure it has given hope to many people especially newbies that don't know your story.

       

      You are such an inspiration and I'll never forget all the support that you gave to Tim and me especially in the early days/years for me.  It was great to meet everyone in person and you were such a big part of making that happen, too.

       

      Miss you a lot.  Celebrate big and don't be a stranger.

       

      Stay Strong
      King

      Stage IV 7/05 Liver mets

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      King
      Participant

      Carole,

       

      I am so happy that you posted this wonderful news.  I'm sure it has given hope to many people especially newbies that don't know your story.

       

      You are such an inspiration and I'll never forget all the support that you gave to Tim and me especially in the early days/years for me.  It was great to meet everyone in person and you were such a big part of making that happen, too.

       

      Miss you a lot.  Celebrate big and don't be a stranger.

       

      Stay Strong
      King

      Stage IV 7/05 Liver mets

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      DebbieH
      Participant

      10 YEARS, Carole – amazing!  I well remember those nights in chat, so much laughing and sharing and tears too.  I don't know where I'd be without this place and everyone who was here in the early days and those who came along later.

      I'm so happy to know you're enjoying time with your girls and grandson.  Just knowing you're doing so well gives hope to so many on this board.  I'm SO glad we met and hope we can meet up again some time.  Thanks for sharing your wonderful news with all of us. 

      DebbieH, stage IIIC, NED 9+ years

       

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      DebbieH
      Participant

      10 YEARS, Carole – amazing!  I well remember those nights in chat, so much laughing and sharing and tears too.  I don't know where I'd be without this place and everyone who was here in the early days and those who came along later.

      I'm so happy to know you're enjoying time with your girls and grandson.  Just knowing you're doing so well gives hope to so many on this board.  I'm SO glad we met and hope we can meet up again some time.  Thanks for sharing your wonderful news with all of us. 

      DebbieH, stage IIIC, NED 9+ years

       

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      dawn dion
      Participant

      Wow Carol – you are so inspiring.  I am so new to this god aweful thing called melenoma.   I was just diganosed Stage 4 and really thinking that there is just no hope – Reading all of these posts and the wonderful people that have carried on the battle for years gives me hope.   I just tested positive for BRAF and they want me to begin treatment soon.   One of the things I plan to do is diet – even though the Drs. don't put much into that.   Can you share what you did?  I would be very interested.

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      dawn dion
      Participant

      Wow Carol – you are so inspiring.  I am so new to this god aweful thing called melenoma.   I was just diganosed Stage 4 and really thinking that there is just no hope – Reading all of these posts and the wonderful people that have carried on the battle for years gives me hope.   I just tested positive for BRAF and they want me to begin treatment soon.   One of the things I plan to do is diet – even though the Drs. don't put much into that.   Can you share what you did?  I would be very interested.

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      KellieSue
      Participant

      Thank you for posting your story. It gives me hope that I too can be celebrating my 10 year anniversary after Stage IV melanoma.

      Kellie(from Iowa) Stage IV since 2008

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      KellieSue
      Participant

      Thank you for posting your story. It gives me hope that I too can be celebrating my 10 year anniversary after Stage IV melanoma.

      Kellie(from Iowa) Stage IV since 2008

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      cfw9186
      Participant

      I would also love to hear about the treatment you did;  please send to [email protected]

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      cfw9186
      Participant

      I would also love to hear about the treatment you did;  please send to [email protected]

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      benp
      Participant
      Hi Carole,

      Cngratulations! I have just read your post, and I am in a similar boat (lung + brain mets) and would also be ver curious to know more about your treatment. If you could send an email to [email protected] I would be very appreciative.

      Thanks,
      Ben.

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      benp
      Participant
      Hi Carole,

      Cngratulations! I have just read your post, and I am in a similar boat (lung + brain mets) and would also be ver curious to know more about your treatment. If you could send an email to [email protected] I would be very appreciative.

      Thanks,
      Ben.

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