Calling all Stage IV Suvivors

jcavanaugh
jcavanaugh Member Posts: 100
edited March 2014 in Colorectal Cancer #1
My dad was diagnosed with stage IV colon cancer in May 2002. Still going strong. It came back to his liver last year (2 small spots). Since being on Oxiplatin, one has disappeared and the other will be zapped in two weaks with radiofrequency ablation. Oncologist who told us on our first visit that there is a 25% chance for cure of Stage IV, is changing is mind (or not very clear). Now, he says my dad is simply adding years to his life. I do not understand this. Adding years to someone's life and cure are not the same thing!! My dad will reach is 3 year mark this May. It has not gone outside of his liver. All of the surgeons and radiologist say this great news. They tell us we can keep on zapping forever. Why is the oncologist never in that camp? Is there really a 25% cure rate? Any answers would help.

Comments

  • Rondog
    Rondog Member Posts: 26
    #2
    I got a diagnosed with Stage IV that spread to my lymph nodes and my liver, too many spots to count on my liver is what they said...I'm 37, have undergone 13 rounds of two different chemo regimens and am still not in remission...yet...all my blood work and CEA levels are normal and have been for months..

    I get scared and read stats that say with Stage IV that has gotten into the lymph nodes, the survival rate is 3-5 years...you cant go by stats...everyone is different....As far at what the Oncologist's say, I get the same, after 8 rounds, was told he thought it would gone, but after 13, Doesnt think it will be gone..? Go figure...Its easier said then done, believe, I'm so tired of all this crap, but you kinda just have to go with the flow and take each day and situation as it comes....

    Good Luck and God Bless
  • ron50
    ron50 Member Posts: 1,723 Member
    #3
    Hi Cav and Rondog,
    Say hello to your dad for me cav I used to talk to him a couple of years ago. I don't understand the doctors thoughts on st 4 ca I was stage three but it was very aggressive and was into 6 lymph nodes and although I had no mets they kept saying that it would happen ,probably in my liver and if that ocurred there would be only a 15% chance to use surgery to remove it. It hasn't metastasized and it hasn't shown up back at the original site. I was told at 5 yrs I was cured and now past seven years I am beyond their revised time limit for cure. So I guess there really is a chance for a cure added to the fact that we don't know what is gonna happen tomorrow , who knows what new treatment is just around the corner. While we are alive and fighting we are still in the contest , hang in Cav and Ron my thoughts are with you . Ron.
  • JKendall
    JKendall Member Posts: 186
    #4
    Hi Cav...My wife was diagnosed with stage 4 back in October, with mets to her ovaries and two lymph nodes. Nothing visible in any scans in the liver or lungs though.

    I'll tell you, I get so frustrated with doctors. I know they're human too, and they can't fix everything, or even accurately diagnose problems. But everytime we think we're hearing good or positive news, there's a "but" attached to the end of it.

    Your pet scan was clear, BUT they can't see anything smaller than 1/8 inch...

    Your CT scan was clear, BUT...

    or you get the gloom and doom attitude:

    well we'll have to change your treatment protocol because we never expected your scans to come back clear and we were just going to treat you to extend your life....

    GEEZ!!!

    The onc keeps saying "If I had a magic wand..." I want to take that wand and stuff it where it will feel magical to her sometimes.

    Sorry. Sorry. Sorry. Venting and digressing.

    I feel your pain and frustration, Cav. All I can say is keep your faith and stay strong for your dad, like he would for you if it were reversed. Even if you can't fix what's broke, you can keep encouraging and supporting him.

    We'll be here to help encourage and support you.

    Let us know how things go.

    Jimmy
  • andreae
    andreae Member Posts: 236
    #5
    Hi guys,

    I'm a stage IV survivor. Diagnosed stage III in January 2003, went through treatment, progressed to my lungs by September 2003 and they said "palliative". Well, I was 21 years old and here these people are telling me palliative?! I was ready to go dig my grave myself. I then realized that palliative just meant that PERHAPS they couldn't cure me, but they could INDEFINITELY treat me and add MANY, MANY years to my life. Hell, I could be "palliative" and dealing with this disease till I'm 80 years old. I'll take it! I don't care if they can't cure me if they can keep me going for another 6 or 7 decades! Although I know it is hard, do not focus on their lingo. Many oncologists NEVER use the term cure, only remission. I know people that have been cancerless for over 20 years and doctors still say remission. I guess nobody likes the word cure in cancer circles... Well, except for the patients!

    Colorectal cancer prognosis is improving everyday. CPT-11 came out in 1996, oxaliplatin 2002, Cetuximab and Avastin in 2004. They are starting to mix in ablation. THERE IS HOPE. Do not listen to your doctor. Your father will be in fine form 20 years down the line and the doctor will still be saying "Well, we are only adding years to his life and he's still in remission." No matter what they call it, years are years are no disease is good:)

    Stay strong. Fight hard. Have hope.

    Lots of love,
    Andrea
  • spongebob
    spongebob Member Posts: 2,565 Member
    #6
    Ahoy... Just to be sure, are you Vincent's son?

    It is so weird... we're here at Colon-Palooza having a beer - yes, Emily, BEER!! And we were just talking about Voncent and wondering what he was up to. Please send him my best regards.

    I'll lift a glass of good Irish whiskey to him tonight.

    Cheers

    - SpongeBob
  • mikew42
    mikew42 Member Posts: 114 Member
    #7
    I have stage 4 and am now in remission. I go in Monday for my first 3 month scans. I have also read that there is a 25% chance of cure if in remissMy onc. has even said that 5 years non-recurrence, he considers that a cure, although..it could come back. I think that if the cancer is responding to the chemo like your dad's, that is a good sign. Mike
  • rejoyous
    rejoyous Member Posts: 259
    #8
    Have you read Lance Armstrong's autobiography, It's Not about the Bike? He didn't have colonn cancer, but he certainly had an extremely grim prognosis. Someone loaned me this book as soon as she heard I had cancer and it was a great spirit booster. Each case is different.

    I am so appreciative of all the messages on this thread. It's precious to have all of your support.
  • livin
    livin Member Posts: 318 Member
    #9
    I was diagnosed stage iv in October 2004 after my colon cancer stage3 metast. to my liver had liver resection presently doing chemo was told there are slim-slim chances that people are cured but usually you can only be treated. I guess since I have had 2 other Cancers, Breast and the Colon I was glad that I could be treated prolonged life anything sounds good to me at this stage. As long as I am still here still strong and able to get around and do for myself alot of people don't even know I have been through so much. I look better than some healthy people and have good days where I fool by self. Thanks to God, I keep the faith and have hope and never ever give up. Livin

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