Need Experiences of Stage 4 Recurring Cancer with Mets to Liver and Lung

devotion10
devotion10 Member Posts: 623 Member
edited March 2014 in Colorectal Cancer #1

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  • grammadebbie
    grammadebbie Member Posts: 464
    #2
    Welcome

    I'm sure someone with Stage 4 will be responding. I'm Stage 3c and was diagnosed Oct. 17th and have not had a recurrence. I just wanted to welcome you to our family here. You will receive great information here and alot of caring and support. Don't let the stats on the web scare you. They are outdated, people here will be able to give you more accurate information. Glad you found this forum, sorry you had to but this is a great place when you need it.

    Welcome to the family,


    Debbie (gramma)
  • robinvan
    robinvan Member Posts: 1,012
    #3
    Hi Devotion
    Boy have you come to the right place. We have a fairly large contingent of recurrent stage 4 survivors. Some are NED. Others, like me are still dealing with recurrences.

    My history is on my profile page. I had a liver resection right of the bat (2004) and then a recurrence in the liver 2 years later (2006). The recurrence was zapped with RFA (radio frequency ablation) and my liver has been clear since.

    Last Summer I was diagnosed with a local recurrence. I had a tumour at the site of the original colon resection which had spread to the sacrum. I've had radiation and am now on Erbitux.

    When we got the news of the first recurrence it was devastating. I thought I was a goner! But eventually, as options emerged, we settled into a sense of "we've done this before, we can do it again".

    Again with this latest recurrence. It was devastating and very discouraging. But we carry on. I'm still here and hoping to enjoy whatever days are left.

    I posted a story on my recurrences on my blog. You can find it here...A Cancer Journal

    Others will post. Phil, Craig, there are many.

    Rob; in Vancouver
    “You may have to fight a battle more than once to win it.” Margaret Thatcher
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #4
    grammadebbie said:

    Welcome

    I'm sure someone with Stage 4 will be responding. I'm Stage 3c and was diagnosed Oct. 17th and have not had a recurrence. I just wanted to welcome you to our family here. You will receive great information here and alot of caring and support. Don't let the stats on the web scare you. They are outdated, people here will be able to give you more accurate information. Glad you found this forum, sorry you had to but this is a great place when you need it.

    Welcome to the family,


    Debbie (gramma)

    Hello!
    Welcome! I am stage IV. DX in April, 09. Immmediate removal of 11" of large intestine. Baseball size tumor had perforated the colon wall and was growing on back abdomin wall. Surgery removed it all. BUT...had to wait 8 weeks for chemo to start after surgery. Went to MD Anderson in Texas for second opinion. By the time chemo started I had 4 mets to liver and 15 mets in lungs...all inoperable. I was put on Folfiri. Breathing was getting difficult. I was scared ..... BAD!!! I found this place.... these people..... and God. Between the mix of them all...... I found the courage and strength I needed to FIGHT.....I was NOT gonna die...no way...my family needs me too much!!! On December 1st, 2009..... I was informed I was in remission....NED! ALL.....and I mean ALL cancer was gone...none in liver...none in lungs....PET/CT all clear....CEA in normal range!!! I just couldn't believe it!!! I was taken off my chemo drip last week and will go on a pill from now on. Since I am stage IV I know I will always face the possibility of recurrance....BUT......NOT TODAY!!!! ... one day at a time..... and soooooooooo very thankful for each and every day.

    Peace........... Jennie :))
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #5
    robinvan said:

    Hi Devotion
    Boy have you come to the right place. We have a fairly large contingent of recurrent stage 4 survivors. Some are NED. Others, like me are still dealing with recurrences.

    My history is on my profile page. I had a liver resection right of the bat (2004) and then a recurrence in the liver 2 years later (2006). The recurrence was zapped with RFA (radio frequency ablation) and my liver has been clear since.

    Last Summer I was diagnosed with a local recurrence. I had a tumour at the site of the original colon resection which had spread to the sacrum. I've had radiation and am now on Erbitux.

    When we got the news of the first recurrence it was devastating. I thought I was a goner! But eventually, as options emerged, we settled into a sense of "we've done this before, we can do it again".

    Again with this latest recurrence. It was devastating and very discouraging. But we carry on. I'm still here and hoping to enjoy whatever days are left.

    I posted a story on my recurrences on my blog. You can find it here...A Cancer Journal

    Others will post. Phil, Craig, there are many.

    Rob; in Vancouver
    “You may have to fight a battle more than once to win it.” Margaret Thatcher

    Rob
    Love the Quote! You rock!!!

    Jennie
  • Unknown
    Unknown
    #6
    This comment has been removed by the Moderator
  • zenmonk
    zenmonk Member Posts: 198
    #7
    surviving
    I had a rectal tumor removed and then 11 months later it spread to my liver. I was inoperable at the time. Got on folfox and had great results. My tumors shrank or died enough so that I became eligible for a liver resection. Had that on jun10 of 09. All clear so far. I am stage 4. Next pet scan is this month so of course I am going through apprehension about that. There are 3 people that I know of were I get treated who are stage 4 and have been alive 12 years, 10 years and 8 years respectivly. There are plenty of survival stories. I had a hard time finding them at first.
  • Brenda3.16
    Brenda3.16 Member Posts: 209
    #8
    zenmonk said:

    surviving
    I had a rectal tumor removed and then 11 months later it spread to my liver. I was inoperable at the time. Got on folfox and had great results. My tumors shrank or died enough so that I became eligible for a liver resection. Had that on jun10 of 09. All clear so far. I am stage 4. Next pet scan is this month so of course I am going through apprehension about that. There are 3 people that I know of were I get treated who are stage 4 and have been alive 12 years, 10 years and 8 years respectivly. There are plenty of survival stories. I had a hard time finding them at first.

    Hi
    I was DX in March 09 with stage 4 cc with mets to the liver and lung. I spent a month being terrified. I didn't eat or sleep. Finding this board really gave me hope and helped me start living my life. I did Folfox, and am currently taking Xeloda. I will be adding Avastin next week. I felt really good most of time. I still work full time as a teacher. I have a 14 year old daughter who is the center of my life. I can't even imagine not being around for a long time to take care of her. I am currently told that I am not a candidate for surgery.

    This board has been so important to me. It has given me so much hope.

    Brenda
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #9
    stage IV here
    Hi,

    I was diagnosed 2-1/2 yrs ago at age 41 as stage IV rectal cancer w/ mets to liver and lungs in Aug. 2007. I had treatment and then recurrences in Aug. 2008 and again in July 2009. I'm currently still in treatment. It's not been an easy road, but I feel like I've actually fared pretty well during chemo. I've literally only had two colds in 2-1/2 yrs and no other illnesses, infections, or any other complications at all. I'm so grateful for that. The irony is that I've felt so "healthy" since I've gotten cancer- lol!(other than major joint pain- but no actual sicknesses other than the cancer). So far as treatments, I had Folfox w/ Avastin, radiation on the rectal tumor (in which my rectal tumor disappeared), then liver surgery to remove 55% of my liver and gallbladder, and I took Folfiri w/ Avastin two different times. After my last scan in Nov. 30 showed progression while on chemo, I decided to go the alternative route. I've been treated by a Dr. Cantrell in Nashville, TN (I live in southern Calif.) since mid December & have been taking interferon and lovastatin. My next scan will be Feb. 12th & I'll see how I'm doing now. Definitely kind of scary, but I've remained pretty positive throughout, which definitely makes a difference, and my faith in God has sustained me too.
    I definitely have a decent quality of life and have remained a busy mom of 3, doing pretty much everything I ever did before (except maybe a little more slowly at times).
    There are most definitely other stage IV'ers on the board who are now NED (no evidence of disease)! Make sure to not let outdated statistics get you down. Official statistics are always going to be outdated by the very nature of being a statistic- the info has to be at least 5 years old. Survival rates are getting better.
    I'm sure many others will chime in. If you want to talk more, I'd love to hear from you. You can send me a PM (private message), if you want.

    Take care, keep the chin up, and put your fear and anger at the cancer into fighting it with all you've got!! Make sure that you have a doctor who is wanting to fight it hard, too. A lot of times one doctor or surgeon will say "that's all we can do", then another somewhere else will have a different thing to try. Never, ever give up!!

    Lisa
  • Kerry S
    Kerry S Member Posts: 606 Member
    #10
    Stage 4
    stage 4 dx 5/08 rectum - node - liver
    Transanal removel of rectum tumor

    6 weeks chemo/rad 5FU

    Liver embolazation

    Now NED 13 months

    Its fine to look at the stats. Just put yourself mentally in the winners circle.
  • geotina
    geotina Member Posts: 2,111 Member
    #11
    Devotion10
    My husband was diagnosed somewhat advanced Stage IV, mets to liver and lungs, 3/09. Had colon resection and completed initial chemo. He has done outstanding according to our oncologist, "you never see this happen and if you do it is very, very, rare". Many of the mets have completely disappeared and the rest are significantly smaller. To look at him, you would not know how truly sick he really was. He continues to work full time, has a little too good of an appetite and does whatever he wants. He gets very tired in the evening but heck, he is on chemo and working full time and up by 6:00 a.m. Don't look at stats and if you do, then look at the publication date, they are very outdated. Look at our bio to see our story. If you want to know anything specific just send me a pm or post it on here. Stay Strong - Tina
  • papajedi
    papajedi Member Posts: 110
    #12
    idlehunters said:

    Hello!
    Welcome! I am stage IV. DX in April, 09. Immmediate removal of 11" of large intestine. Baseball size tumor had perforated the colon wall and was growing on back abdomin wall. Surgery removed it all. BUT...had to wait 8 weeks for chemo to start after surgery. Went to MD Anderson in Texas for second opinion. By the time chemo started I had 4 mets to liver and 15 mets in lungs...all inoperable. I was put on Folfiri. Breathing was getting difficult. I was scared ..... BAD!!! I found this place.... these people..... and God. Between the mix of them all...... I found the courage and strength I needed to FIGHT.....I was NOT gonna die...no way...my family needs me too much!!! On December 1st, 2009..... I was informed I was in remission....NED! ALL.....and I mean ALL cancer was gone...none in liver...none in lungs....PET/CT all clear....CEA in normal range!!! I just couldn't believe it!!! I was taken off my chemo drip last week and will go on a pill from now on. Since I am stage IV I know I will always face the possibility of recurrance....BUT......NOT TODAY!!!! ... one day at a time..... and soooooooooo very thankful for each and every day.

    Peace........... Jennie :))

    Jeanie, YEAH!!!!!!!!!!!
    God is so incredibly loving and faithful...........be sure you watch for the scared newcomers and TELL them............it can happen!!!!!!!!!!!!!

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