Stage 4 survivors?

livefreeordie
livefreeordie Member Posts: 45
edited March 2014 in Colorectal Cancer #1
Hi, I am stage 4 with lymh, liver and lung mets.
On chemo, 4 treatments so far. They wont operate
unless the chemo shinks it..
I am only 46 years old. The survivor stats are
scary. I think maybe the stats are so bad because
this was an "older person" cancer?
Anybody NED after stage 4 out there?
thanks

Comments

  • Betsydoglover
    Betsydoglover Member Posts: 1,248
    Hi livefreeordie (are you from New Hampshire?) -

    The stats are scary, but please know a few things:
    1) most internet stats are outdated
    2) most of the newer drug stats come from clinical trials, which by definition included the "sickest" patients
    3) you are an individual and none of the stats apply to you personally.

    There are many Stage IV survivors on this site. I am one - you will hear from others. I had liver mets but have been NED (no evidence of disease) since my second chemo cycle (23 months ago)(Xeloda/oxaliplatin/Avastin). I went on to complete 6 chemo cycles and have been NED since (20 months with no chemo). I never had a liver resection. I am tested every 3 months and so far, so good.

    Stage IV is not at all hopeless. There are many treatments and many surgical procedures.

    Welcome to our site and please keep us posted on your status. We can all share many experiences with you.

    Take care,
    Betsy
  • robinvan
    robinvan Member Posts: 1,012
    Hi livefree, welcome!
    I'm a stage 4 survivor, going on 3 years. I was 46 when diagnosed too. Statistics can't predict the response of an individual. They're based on large populations and not very helpful for folks in our situations. There are a lot of stage 4 survivors on this site. I'm sure many of us felt scared to begin with, and periodically throughout the journey. Yah... it's scary stuff.
    I've had liver resection and RFA, both worked well. I've not had to deal with lung mets.
    Check out Karen's story from the NYTimes (a few threads below). She had a liver resection after chemo. Sometimes you have to get to the right place.
    Rob; in Vancouver
  • alta29
    alta29 Member Posts: 435
    Plenty...Dx 2 1/2 years ago...currently dancing with NED... but we do share him....Do noy look at stats...read positive stories from here...and BELIEVE
    God bless
  • apache4
    apache4 Member Posts: 272
    Hi! I know that when I was diagnosed a year ago I read all those stats, etc. and was convinced I would not make it a year. After 15 rounds of chemo the tumors in my liver have shrunk and I am on a holiday from chemo for awhile. I am here for the journey and wondering what the Dr. has up his sleeve next. CT scan next week will give us a clue. This site is wonderful...I have felt so much more hopeful since discovering it and the wonderful people here.
  • jams67
    jams67 Member Posts: 925
    SEARCH stage 4 and you will find many of us on this site. I've been NED with stage iv for 2 years. Liver and colon resection with 10 positive lymph nodes.
    The treaments you are going through are not easy but they are doable. Hang in there and welcome to the semi-colons.
    Jo Ann
  • livefreeordie
    livefreeordie Member Posts: 45
    jams67 said:

    SEARCH stage 4 and you will find many of us on this site. I've been NED with stage iv for 2 years. Liver and colon resection with 10 positive lymph nodes.
    The treaments you are going through are not easy but they are doable. Hang in there and welcome to the semi-colons.
    Jo Ann

    OK, thanks for the positive news :)
    The onc said it would take a miracle.. nice guy?
    I got a second opinion, (from Dana Farb) and
    they agreed on the chemo first option.
    And yes, I am from NH :)
    Thanks again.
  • jerseysue
    jerseysue Member Posts: 624
    Stage 4 April 2005, recurrence 2006 in the stomach as of March 2007 NED. I do a maintence chemo which is avastin which I'm sure you will be getting. When I first went to my onc I told everyone that he is sounded more like a mortician then anything else. I stuck with him and I now like his approach.
  • hopefulone
    hopefulone Member Posts: 1,043
    Hi, my husband is stage IV, not NED , has liver mets also, no lung mets. We were told same thing, not operable..at least not yet. 8th treatment today. He has had some shrinkage. I just sent ct to another doc to be reviewed for possible options. We're exploring microspheres , rfa, etc. Not giving up by a long shot , so don't you ! Stats are old and newer drugs have come out in recent years. He just turned 54 and has a lot of living to do yet. God Bless and keep us posted. Diane
  • tessie01711
    tessie01711 Member Posts: 2
    jams67 said:

    SEARCH stage 4 and you will find many of us on this site. I've been NED with stage iv for 2 years. Liver and colon resection with 10 positive lymph nodes.
    The treaments you are going through are not easy but they are doable. Hang in there and welcome to the semi-colons.
    Jo Ann

    Hi
    I was just wondering- I'm new to all of this!And I thought maybe your cancer is like mine-I'm scared of this whole thing and thought you can help me with what you have gone through.I have stage 4 colon cancer-1st they took me to surgery and removed the big mass in my colon and took out 1/2 my bladder. but now they are saying it is still in my liver-but can't do liver surgery unless cancer in liver is reduced-also found some still around my bladder and liver- I think lymph nodes. I'm doing my 1st cemo treatment I had it 2 days ago (Oxaliplatin,avastin,flourouracil injection,and also some kind of machine I wear home that slowly injects cemo into me) I have the machine removed today. I can't drink or touch anything cold. Can you tell me if I can drink cold fluids after machine is removed
    Thanks Tess
  • livefreeordie
    livefreeordie Member Posts: 45

    Hi
    I was just wondering- I'm new to all of this!And I thought maybe your cancer is like mine-I'm scared of this whole thing and thought you can help me with what you have gone through.I have stage 4 colon cancer-1st they took me to surgery and removed the big mass in my colon and took out 1/2 my bladder. but now they are saying it is still in my liver-but can't do liver surgery unless cancer in liver is reduced-also found some still around my bladder and liver- I think lymph nodes. I'm doing my 1st cemo treatment I had it 2 days ago (Oxaliplatin,avastin,flourouracil injection,and also some kind of machine I wear home that slowly injects cemo into me) I have the machine removed today. I can't drink or touch anything cold. Can you tell me if I can drink cold fluids after machine is removed
    Thanks Tess

    Yes, in fact, drinking cold is dangerous. The Onc or the nurses should have told you that!!
    For me it lasted a couple of days.. some people get it for much longer.. I think its the Oxaliplatin.
    Did they at least tell you you might get sick/nausha? and give you meds for that?
  • Janetfj
    Janetfj Member Posts: 1

    Hi
    I was just wondering- I'm new to all of this!And I thought maybe your cancer is like mine-I'm scared of this whole thing and thought you can help me with what you have gone through.I have stage 4 colon cancer-1st they took me to surgery and removed the big mass in my colon and took out 1/2 my bladder. but now they are saying it is still in my liver-but can't do liver surgery unless cancer in liver is reduced-also found some still around my bladder and liver- I think lymph nodes. I'm doing my 1st cemo treatment I had it 2 days ago (Oxaliplatin,avastin,flourouracil injection,and also some kind of machine I wear home that slowly injects cemo into me) I have the machine removed today. I can't drink or touch anything cold. Can you tell me if I can drink cold fluids after machine is removed
    Thanks Tess

    I also am Stage IV with lymph/liver. I had many tumors on my liver. I was also treated with the same meds you are on. I did have the same sensitivity to the cold. I have taken 8 treatments (4 rounds of 2 cycles each). My tumors have shrunk dramatically & I am taking a break from chemo - I developed neuropathy in my feet & fingers & have had lots of issues with diahrrea.

    My doctor said that I will probably always need to live with this, but we can manage it for many years. He compared it with managing diabetes.

    So, keep your spirits up & be sure to report any side effects to your doctor. There's often things they can do.
  • handybranch
    handybranch Member Posts: 6
    I am stage 4 and have been since 2004 ,dont look at anything it is all in your head .ATTIDUDE ,it will help .I had my chemo and my surgerys all that stuff .They all say I have a good outlook , I live for today and tomarrow.Head up and go strong .good luck !