Well its official....Stage IV

vman1300
vman1300 Member Posts: 80
edited March 2014 in Colorectal Cancer #1
My wife and I just left the onc's office. I had a MRI done today to compare the findings of the CT/PET.

I am now a stage IV patient with mets to my liver. At 36 years old with no history of CC, this is a MAJOR shock now to say the least.

I start Folfox with Avastin on Oct 5th. What is keeping me going is ALL the survival stories of other IV's. I just pray that I can join those as NED in a year or so...

Kevin
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Comments

  • kbienapfl
    kbienapfl Member Posts: 61
    #2
    Oh, Kevin, I am so, so sorry. Just know we've got your back and will be here for you.

    Continue with your positive attitude and your faith in God. My prayers are with you and will continue to be during this very challenging time.

    A fellow Stage IV fighter,
    Kathy
  • vman1300
    vman1300 Member Posts: 80
    #3
    kbienapfl said:

    Oh, Kevin, I am so, so sorry. Just know we've got your back and will be here for you.

    Continue with your positive attitude and your faith in God. My prayers are with you and will continue to be during this very challenging time.

    A fellow Stage IV fighter,
    Kathy

    Kathy,

    My wife and I will be praying for you as well. I KNOW prayer works and if it were not for God giving me symptoms, I would still be walking around with 2 tumors in my colon.

    We are in the same battle and I am here if you need me or my wife for anything.

    Kevin
  • Monicaemilia
    Monicaemilia Member Posts: 455 Member
    #4
    Kevin: I am sorry to hear your news. I also know the feeling of shock at finding out that I was Stage IV at 38 years old. It´s taken a year and a half (you can read more on my personal web page) and I am finally NED, and so will you. Just be strong and believe, believe, believe that you will be okay. Faith can move mountains. You can do this, and we will all be there right along with you. Monica
  • katienavs
    katienavs Member Posts: 88 Member
    #5
    Hi Kevin,
    I am sorry to hear of the news you received today. I understand the shock. I was diagnosed in June 2006 at the age of 24.
    I am doing wonderfully today and have no evidence of disease! There is soo much hope! Hang in there!
    Katie
  • apache4
    apache4 Member Posts: 272 Member
    #6
    Just hearing the Stage IV shocked me soooo much! I can imagine how you feel. That was a year ago. When the CT and PET scans showed so many liver mets that they could not count them I figured I was surely doomed, but 16 chemos later the damned things are dead except for one small one. The chemo sucks but it sure can work! Are you getting the Oxaliplatin also? Think positive and keep a mental image of those beasts dying from the chemo. Prayers are a big help also as I had plenty of those and know that faith plays a big role. My thoughts will be with you.
  • jenalynet
    jenalynet Member Posts: 361 Member
    #7
    Hi Kevin,
    I'm sorry to hear that you are Stage4..I am also Stage 4 and have been NED for 16 months now. I was given little or no hope at first but with a great team of doctors and a good attitude, I am here today. Please keep the good attitude and I will keep you in my thoughts and prayers. Audrey
  • shmurciakova
    shmurciakova Member Posts: 906 Member
    #8
    Hi Kevin,
    I am sorry to hear that you are Stage IV. However, I am a Stage IV survivor too. I was diagnosed at the age of 31 and I am happy to report to you that I am now 37! I have been off chemo for over 4 years now (following a liver resection) and have been NED now for nearly 3 years (knock on wood!), that following a lung resection for 2 pesky lung mets. So, I hope that helps you realize that you can beat this thing! I am a strong believer in mind/body medicine. Someone once told me to change "I hope" to "I am", or in your case "I will" (join the NED in a year or so). Best wishes to you and hang in there...Oh yeah, I also have no family history...
    -Susan H.
  • impactzone
    impactzone Member Posts: 555 Member
    #9
    Sorry to hear. I was 46 when I got the news on 8/26/06, Stage 4 with large liver met, no family history. I had colon surgery 9/1/06, 5 months of chemo (Erbitux, Oxyliplatin, Xeloda), a pulmonary embolism in Dec. Liver resection at Stanford in Feb, and 5 more months of chemo post surgery (including Avastin). I had a scan last in June and there was at that time NED. I recognize that there is a good chance it will return but have learned a lot. Just my advice, you have more time than you think, don't rush, get information find a good onc and liver surgeon. Get all your meds you might need, eat healthy but don't go crazy with fad diet, take great care of your teeth and mouth, get flu shot now and take care of yourself. I am a high school teacher and coach. I immediately got on an antidepressant early and that seemed to help moderate the highs and lows. I was kinda embarassed to take it but it worked for me. I am now off that and teaching full time and coaching full time. You can make it and it will be a hard journey but you will meet many wonderful people. There is no way you want this wished on anyone but I found it was easier on me than the people around me. I could be sick or sleep but they often couldn't do anything - or so they felt. Looking back, just being there, driving, touching, talking were great. There are many great sites out there including MD Anderson and Stanford that have good news about statistics if that is your worry. Please feel free to e mail me and we'll get through this. You will find you are much stronger than you ever were and you will love life more than ever.
  • jerseysue
    jerseysue Member Posts: 624 Member
    #10
    I'm really sorry that you received news of stage IV. I too was shocked and even now 2 years later and still fighting I still think what the heck. With that said lots of luck with all your chemo and lots of luck getting and staying NED.
  • taraHK
    taraHK Member Posts: 1,952 Member
    #11
    I am so sorry to hear this news. But, you are right, there are some GREAT survivor stories (and survivors!) out there. And you will be joining them! Wishing you all the best on your journey.
    TAra
  • vman1300
    vman1300 Member Posts: 80
    #12
    Monicaemilia said:

    Kevin: I am sorry to hear your news. I also know the feeling of shock at finding out that I was Stage IV at 38 years old. It´s taken a year and a half (you can read more on my personal web page) and I am finally NED, and so will you. Just be strong and believe, believe, believe that you will be okay. Faith can move mountains. You can do this, and we will all be there right along with you. Monica

    Monica,

    Thanks for the reply. I cant say the shock is over but I do BELIEVE that I will be NED in a year or so.

    Kevin
  • vman1300
    vman1300 Member Posts: 80
    #13
    katienavs said:

    Hi Kevin,
    I am sorry to hear of the news you received today. I understand the shock. I was diagnosed in June 2006 at the age of 24.
    I am doing wonderfully today and have no evidence of disease! There is soo much hope! Hang in there!
    Katie

    Katie,

    Thanks for the reply. What really helps is reading stories of survival. It does give me hope!

    Kevin
  • vman1300
    vman1300 Member Posts: 80
    #14
    apache4 said:

    Just hearing the Stage IV shocked me soooo much! I can imagine how you feel. That was a year ago. When the CT and PET scans showed so many liver mets that they could not count them I figured I was surely doomed, but 16 chemos later the damned things are dead except for one small one. The chemo sucks but it sure can work! Are you getting the Oxaliplatin also? Think positive and keep a mental image of those beasts dying from the chemo. Prayers are a big help also as I had plenty of those and know that faith plays a big role. My thoughts will be with you.

    I have 5 mets and I already believe they are gone even before treatment has started. I am getting Oxaliplatin as one of the 3 parts to Folfox.

    I will be saying a prayer for youas well, for that one last MET to let go of its hold on your body.

    Kevin
  • vman1300
    vman1300 Member Posts: 80
    #15
    jenalynet said:

    Hi Kevin,
    I'm sorry to hear that you are Stage4..I am also Stage 4 and have been NED for 16 months now. I was given little or no hope at first but with a great team of doctors and a good attitude, I am here today. Please keep the good attitude and I will keep you in my thoughts and prayers. Audrey

    Thanks Audrey!

    Congrats on being NED for 16 monts and prayers sent for a lifetime of being NED. I have 100% faith in my Onc team that they are making the right decision and I have 100% faith in my Savior that He will bring us both through this trial.

    Kevin
  • vman1300
    vman1300 Member Posts: 80
    #16
    shmurciakova said:

    Hi Kevin,
    I am sorry to hear that you are Stage IV. However, I am a Stage IV survivor too. I was diagnosed at the age of 31 and I am happy to report to you that I am now 37! I have been off chemo for over 4 years now (following a liver resection) and have been NED now for nearly 3 years (knock on wood!), that following a lung resection for 2 pesky lung mets. So, I hope that helps you realize that you can beat this thing! I am a strong believer in mind/body medicine. Someone once told me to change "I hope" to "I am", or in your case "I will" (join the NED in a year or so). Best wishes to you and hang in there...Oh yeah, I also have no family history...
    -Susan H.

    Susan,

    Thanks for the kind words and for adding to my vision of hope. I will be joining the NED group in a year or so!

    Kevin
  • spongebob
    spongebob Member Posts: 2,565 Member
    #17
    Kevin -

    I have been away from the board quite a bit and don't think I have properly welcomed you. So sorry to hear about your Dx, but as you have probably seen there are sooooo many Stage 4 survivors here. It's really amazing how far they have come with cancer treatments in just the past few years. And, something I am fond of saying; "Your attitude is 80%of your cure." and you DEFINITELY have a great attitude. Keep it going. Know that we're all behind you every step of the way.

    Keeping you and your family in my prayers.

    -SpongeBob
  • vman1300
    vman1300 Member Posts: 80
    #18
    impactzone said:

    Sorry to hear. I was 46 when I got the news on 8/26/06, Stage 4 with large liver met, no family history. I had colon surgery 9/1/06, 5 months of chemo (Erbitux, Oxyliplatin, Xeloda), a pulmonary embolism in Dec. Liver resection at Stanford in Feb, and 5 more months of chemo post surgery (including Avastin). I had a scan last in June and there was at that time NED. I recognize that there is a good chance it will return but have learned a lot. Just my advice, you have more time than you think, don't rush, get information find a good onc and liver surgeon. Get all your meds you might need, eat healthy but don't go crazy with fad diet, take great care of your teeth and mouth, get flu shot now and take care of yourself. I am a high school teacher and coach. I immediately got on an antidepressant early and that seemed to help moderate the highs and lows. I was kinda embarassed to take it but it worked for me. I am now off that and teaching full time and coaching full time. You can make it and it will be a hard journey but you will meet many wonderful people. There is no way you want this wished on anyone but I found it was easier on me than the people around me. I could be sick or sleep but they often couldn't do anything - or so they felt. Looking back, just being there, driving, touching, talking were great. There are many great sites out there including MD Anderson and Stanford that have good news about statistics if that is your worry. Please feel free to e mail me and we'll get through this. You will find you are much stronger than you ever were and you will love life more than ever.

    Thanks for the reply. I pray for my wife and family everyday, for God to give them the strength to help with this trial as well.

    I am working with the best onc and surgeon in Asheville.

    I already know this is beaten.

    Kevin
  • vman1300
    vman1300 Member Posts: 80
    #19
    jerseysue said:

    I'm really sorry that you received news of stage IV. I too was shocked and even now 2 years later and still fighting I still think what the heck. With that said lots of luck with all your chemo and lots of luck getting and staying NED.

    Thanks for the reply Sue!

    We are fighting together.

    Kevin
  • vman1300
    vman1300 Member Posts: 80
    #20
    taraHK said:

    I am so sorry to hear this news. But, you are right, there are some GREAT survivor stories (and survivors!) out there. And you will be joining them! Wishing you all the best on your journey.
    TAra

    Tara,

    Thanks for the warm wishes! I know I am going to beat this thing!

    Kevin
  • vman1300
    vman1300 Member Posts: 80
    #21
    spongebob said:

    Kevin -

    I have been away from the board quite a bit and don't think I have properly welcomed you. So sorry to hear about your Dx, but as you have probably seen there are sooooo many Stage 4 survivors here. It's really amazing how far they have come with cancer treatments in just the past few years. And, something I am fond of saying; "Your attitude is 80%of your cure." and you DEFINITELY have a great attitude. Keep it going. Know that we're all behind you every step of the way.

    Keeping you and your family in my prayers.

    -SpongeBob

    SB,

    Thanks for the reply and welcome. Your story was actually the 1st one I read here. We do seem to have a lot in common, especially on the humor front....

    Many have told me attitude plays a major role in treatment. I try my best to stay positive 95% of the time, striving for 100%.....

    I am so ready to start my treatment and I can already see those pesky METS dying.

    Thanks for the prayers my friend!

    Kevin

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