Another Subject Needs Answers.... When does Chemo Stop??? Ever???

idlehunters
idlehunters Member Posts: 1,787
edited March 2014 in Colorectal Cancer #1
I am kinda confused. I went NED Dec 1st. Totally estatic. I thought chemo would end and My life would go back to as normal as possible. What I didn't expect is for my Onc. to tell me I would NEVER be chemo free. That I am stage IV and I have to realize I have a chronic illness like diabetis... no cure...only treatment. He said right now my body is in a good place because of being NED but statitics show 80% or more stage IV have recurrance..... and when it comes back...it is the STRONGEST cancer cells that return....and they may not die with my current treatment....and that is why doctors run out of options and throw their hands up and say they can do no more. HIS suggestion is for me to stay on my current drip coctail for at least 2-3 more treatments. After a PET/CT in 9 weeks...if CEA and still in remission...then we go to pill form of 5FU...and see if I can stay in remission on that and if I do...then I will ALWAYS be on it....forever....FOREVER???? This makes me REAL sad. When does it ever end??? or does it? I'm sorry.... these stupid pain pills for my back get me thinking about all this stuff...and what other options I have like John23 is always talking about. Now I'm crying like a baby....geez..

Jennie
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Comments

  • Nana b
    Nana b Member Posts: 3,030
    Thinking......
    Hmmmmm, interesting. I am stage four and my ONC has not told me anything about living on chemo. If my CEA level goes up we do more scans, or a scan every 6 months. Not sure if I could do ever lasting chemo.....

    Dont cry, okay.. cry......,HELL! I mean HEAVEN,let's cry together!

    XXXXXX
  • idlehunters
    idlehunters Member Posts: 1,787
    Nana b said:

    Thinking......
    Hmmmmm, interesting. I am stage four and my ONC has not told me anything about living on chemo. If my CEA level goes up we do more scans, or a scan every 6 months. Not sure if I could do ever lasting chemo.....

    Dont cry, okay.. cry......,HELL! I mean HEAVEN,let's cry together!

    XXXXXX

    LOLOLOLOLOLOL
    OK.....I LOVE YOU!!!...CRYING!!!

    Jennie lol...and laughing...what a mess!
  • PhillieG
    PhillieG Member Posts: 4,866
    Chemo
    Hi Jennie, I ran into a guy I had met during one of my hospital stays last week at SK. He's been NED for about a year. I mean NED. He has not been on any chemo only scans every 4-6 months at the moment. He started in 2002, I've been at it 6 years. I would consider your doctors recommendation to stay on for a few more times and take it from there. I do know that I would not want to stop too soon (as much as I WANT to stop) because I feel I could regret it IF it came back.

    There are also ways to deal with this like John23 does. We all need to live life a day at a time
    -p
  • damama24
    damama24 Member Posts: 174
    PhillieG said:

    Chemo
    Hi Jennie, I ran into a guy I had met during one of my hospital stays last week at SK. He's been NED for about a year. I mean NED. He has not been on any chemo only scans every 4-6 months at the moment. He started in 2002, I've been at it 6 years. I would consider your doctors recommendation to stay on for a few more times and take it from there. I do know that I would not want to stop too soon (as much as I WANT to stop) because I feel I could regret it IF it came back.

    There are also ways to deal with this like John23 does. We all need to live life a day at a time
    -p

    chemo forever
    I am stage IV also. My onc never talks of cure only prolonging my life. in other words probably on chemo for duration as long as cancer is kept in check. I don't like idea of bring on chemo for life but at this time I am inoperable so chemo is all I have right now. Deb
  • PhillieG
    PhillieG Member Posts: 4,866
    damama24 said:

    chemo forever
    I am stage IV also. My onc never talks of cure only prolonging my life. in other words probably on chemo for duration as long as cancer is kept in check. I don't like idea of bring on chemo for life but at this time I am inoperable so chemo is all I have right now. Deb

    I don't ask, they don't tell me
    This is sort of how I approach my situation. The goal is to cure me. If that is realistic or not only time, technology, and my will to live will determine that. I learned years ago that even IF I asked her the old "how much time do I have doc?" question she would say "who knows?" They don't know and any doc who tells you they do know has got a major problem in my opinion or they are full of "it". Unless they open you up and you are filled with cancer they can only GUESS. Hopefully we all will be NED but maybe we won't. I really try to not get caught up in giving things a name like that. I find it does absolutely nothing good for me. When I had my first operation 5+ years ago I was told that I would likely go home in 5-7 days. I was there 16 days. Ever since then I decided to take things as they come and not ask for specifics about certain things because I know they are not fortune tellers. I know this is not what many want to hear, this is only how I find it the easiest for me to deal with things.
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    PhillieG said:

    I don't ask, they don't tell me
    This is sort of how I approach my situation. The goal is to cure me. If that is realistic or not only time, technology, and my will to live will determine that. I learned years ago that even IF I asked her the old "how much time do I have doc?" question she would say "who knows?" They don't know and any doc who tells you they do know has got a major problem in my opinion or they are full of "it". Unless they open you up and you are filled with cancer they can only GUESS. Hopefully we all will be NED but maybe we won't. I really try to not get caught up in giving things a name like that. I find it does absolutely nothing good for me. When I had my first operation 5+ years ago I was told that I would likely go home in 5-7 days. I was there 16 days. Ever since then I decided to take things as they come and not ask for specifics about certain things because I know they are not fortune tellers. I know this is not what many want to hear, this is only how I find it the easiest for me to deal with things.

    NED.......
    is an idea, kind of a way to get some relief from the grind. It does stand for No Evidence of Disease, but it also stands for No Activity Showing up at This Time.....So then is the age old "5 year mark" if you should stay NED for 5 years then they consider you cured. But it really is as Phil puts it, however the easiest way to deal with it might be for you . I tend to keep NED as None, notta, gone, and that keeps me in a good mood. I do not dwell on the fact that it could come back, I'll deal with that when I need to, and for now its not needed, I found that to not borrow trouble especially in this game is the best post op treatment for me there is........Love and Hope, Buzz
  • dianetavegia
    dianetavegia Member Posts: 1,942
    Jennie
    I met an older (than me so older than dirt) lady at my oncs office during my first chemo. Her name was Maxine and she was Stage IV cc. Maxine showed pictures of her new dog and chatted away for about an hour while she got some really quick infusion. I think it was Avastin. Anyhow, she was very healthy looking and full of life. She didn't say much about her illness but said she got chemo every 3 weeks and would for the rest of her life to keep 'this stuff from coming back'. She answered 'many years' when I asked how long she'd been 'coming here'.

    Jennie, your doctor also told you that 20% never get sick again. I nominate YOU.

    Diane
  • just4Brooks
    just4Brooks Member Posts: 980
    Live for today
    Jennie, Live for today, Who knows?? You could get hit by a bus tonight or trip again at work and hit your head. Make sure by the end of everyday that the people you love understand that you love them. See each day as a gift and dont get wraped up in the "I'm going to die" because we arnt getting out of this alive anyways. It's how we LIVE that makes up special, Not how we die..


    Life is funny sometimes

    Brooks
  • Shayenne
    Shayenne Member Posts: 2,342

    Live for today
    Jennie, Live for today, Who knows?? You could get hit by a bus tonight or trip again at work and hit your head. Make sure by the end of everyday that the people you love understand that you love them. See each day as a gift and dont get wraped up in the "I'm going to die" because we arnt getting out of this alive anyways. It's how we LIVE that makes up special, Not how we die..


    Life is funny sometimes

    Brooks

    I doubt
    I will ever be NED, and really don't look to be anymore, I just look to be alive the next day, and appreciate what I have now, and I will also be on that Avastin and 5fu every 3 weeks as well, to keep the disease stabilized, and if that works for many years for me as well, I'd be happy! I'm at a good place now, and hope to stay there with this disease, I really am not dwelling on the spreads or "What Ifs" as well, I just can't live like that, so just living for the day is the best for me :)

    Hugsss!
    ~Donna
  • pokismom
    pokismom Member Posts: 153
    Same boat
    Hi Jennie,
    This is a good question as for I am in the same boat as you. My doctor has said the very same thing to me, that once we start we will take breaks here and there if everything is going okay but I will be on chemo for the rest of my life. I think I'm finally accepting this, not sure how I will react once I start treatment. But, it's comforting to hear all these stories of others who are hanging in there and are Ned and just living their life. I hope that you and I can be like them. It's hard to swallow coming straight from the doc like that but I know you'll be okay.
    Much love
    Donna
  • KATE58
    KATE58 Member Posts: 299
    pokismom said:

    Same boat
    Hi Jennie,
    This is a good question as for I am in the same boat as you. My doctor has said the very same thing to me, that once we start we will take breaks here and there if everything is going okay but I will be on chemo for the rest of my life. I think I'm finally accepting this, not sure how I will react once I start treatment. But, it's comforting to hear all these stories of others who are hanging in there and are Ned and just living their life. I hope that you and I can be like them. It's hard to swallow coming straight from the doc like that but I know you'll be okay.
    Much love
    Donna

    I AM STAGE IV ,AND WAS TOLD
    I AM STAGE IV ,AND WAS TOLD I WILL PROBABLY ALWAYS NEED CHEMO
    IN SOME FORM I HAVE HAD 3 REMISSIONS FOR 10 MONTHS,FOR 7 MONTHS AND FOR 4 MONTHS
    I DO NOT RECEIVE CHEMO DURING REMISSIONS.,TO REST MY BONE MARROW AND LET MY BLOOD BUILD BACK UP.
    MY DOCTOR TOLD ME WITH STAGE IV,THEY ARE LOOKING TO KEEP THINGS STABLE,
    NOT TO CURE.
    LESSER STAGES HAVE MORE CHANCE OF CURE.
    I HAVE ALREADY EXCEEDED THEIR EXPECTATIONS.
    GOOD LICK AND GOD BLESS
    kATE
  • ittapp
    ittapp Member Posts: 383
    Jennie, I feel the same
    Jennie, I feel the same way....chemo forever and that is so depressing, I think I could deal with 5 FU only, if I were NED..I just pray for that sooo much, but they say I am not resectable so I am not even sure that will happen. I just have to keep my spirits up and it is so hard to do. But I am so happy for you being NED and you are such an inspiration for me. If I am correct you are NED without a liver resection right? I love ya Jennie and pray for you everyday. Patti
  • geotina
    geotina Member Posts: 2,111
    Forever
    Our oncologist never said chemo for life to us but I assumed that is what would happen as a Stage IV with liver/lung mets. Right now George is stable, nothing new growing, many have disappeared completely and the rest show significant shrinkage. He is now on IV 5FU and Leucovorin weekly (only takes about an hour) adding Avastin every other week. It is working for him so far. Our onc did say that if things keep working George will be around for a good long time. He has never used the word cure either. Never know what is around the corner. So have a good cry and then go out and LIVE. Tina
  • Julie 44
    Julie 44 Member Posts: 476
    geotina said:

    Forever
    Our oncologist never said chemo for life to us but I assumed that is what would happen as a Stage IV with liver/lung mets. Right now George is stable, nothing new growing, many have disappeared completely and the rest show significant shrinkage. He is now on IV 5FU and Leucovorin weekly (only takes about an hour) adding Avastin every other week. It is working for him so far. Our onc did say that if things keep working George will be around for a good long time. He has never used the word cure either. Never know what is around the corner. So have a good cry and then go out and LIVE. Tina

    HUH
    Funny this topic came up because I have been feeling down and out and sorry for myself...Had a terrible case of the WHY ME'S.. I have been talking with a good friend and he said get off my sorry a** and live my life..Do what I like to do and see the beauty in things..Just live and don't let Cancer be my life...He got me out of my funk which I will always be grateful to him for..So take this advice and just DO IT life will seem better.....JULIE
    P.S. Hoke I am talking about you lol lol lol
  • chicoturner
    chicoturner Member Posts: 282
    chemo forever....
    I like the sound of forever! My onc said stage 4 means it is in your blood and can pop up when and wherever...so I am sure that meant ongoing chemo. I have been on treatment coming up on 2 years, never NED, but we keep trying! I choose to accept this as a chronic illness that I can "live" with. I hope you will accept this treatment and have peace about it! My prayers are with you. Jean
  • tiny one
    tiny one Member Posts: 465
    You are in charge
    Please remember that you are in charge. You can tell them no more chemo or you can continue to take treatment. Each one of us is so different in what we chose to do. Some will continue no matter what. Please focus on doing things you like to do not on cancer. Most oncologist will say NED not cancer free. When there's been a healing, most Dr's will say, it could come back. Well it could not also.
  • PhillieG
    PhillieG Member Posts: 4,866
    You say tomahto, and I say tomato

    LiveStrong

    I hate to keep using the old bus analogy so I won't.
    I'll just say that any one of us can get run over by a streetcar today...
  • John23
    John23 Member Posts: 2,122
    Forever?
    Getting hit by a bus or trolly (a "streetcar"?), would be easy,
    compared to this ^%$%.

    This is like getting hit by that proverbial bus, and remaining
    pinned under the damned thing for the rest of your life....
    Waiting for it to move, one way or the other, wondering
    what body section it'll crush next...

    Egads.

    So I compare it to "old age". We get old, and then we are faced
    with the end of life. No matter how hard we try to remain alive
    forever, we will all come to the end eventually.

    There was a time that the average life span was between 50 and 70;
    has it really changed that much? I look through the Obits and notice the
    ages are all around 50-70, with some modest exceptions.

    My mother had lung cancer and they gave her 6-9 months. Seventeen
    years later, she died of lung cancer. She never stopped smoking her 3-4 packs
    a day. She was in her 70s when she died, and otherwise in decent health.

    My neighbor died two years ago, after a long term of meds for
    A-Fib. The meds caused his liver to quit. He had been on a heart
    transplant list to get a heart..... He was taken off the list due to
    a too weak liver. And he couldn't get a liver, because his heart
    was too weak. He was in his 70s.

    I'm in my Medicare age.... am I "due"? (hell, I'm overdue!)

    Once one fully accepts the premise that life includes death, life begins to
    mean more than getting a new HDTV, or grabbing that next great sale item.

    So... I have colon cancer... and so it's in so many lymph nodes
    that I should expect it to be throughout my entire body...

    I remain waiting for the other shoe to drop, hoping I'll have enough time
    to get everything set for my family before my time comes.

    I'm finding that I'm getting more out of life now, than when I walked
    around feeling sorry for those that had cancer; -I- have cancer.

    It may be the beginning of the end of my life cycle, but it's not
    the end of life - It's the beginning.

    When we were born, it was the beginning of the end. Did we enjoy
    life less because of that premise?

    It's time now, to be more alive than before.
  • PhillieG
    PhillieG Member Posts: 4,866
    John23 said:

    Forever?
    Getting hit by a bus or trolly (a "streetcar"?), would be easy,
    compared to this ^%$%.

    This is like getting hit by that proverbial bus, and remaining
    pinned under the damned thing for the rest of your life....
    Waiting for it to move, one way or the other, wondering
    what body section it'll crush next...

    Egads.

    So I compare it to "old age". We get old, and then we are faced
    with the end of life. No matter how hard we try to remain alive
    forever, we will all come to the end eventually.

    There was a time that the average life span was between 50 and 70;
    has it really changed that much? I look through the Obits and notice the
    ages are all around 50-70, with some modest exceptions.

    My mother had lung cancer and they gave her 6-9 months. Seventeen
    years later, she died of lung cancer. She never stopped smoking her 3-4 packs
    a day. She was in her 70s when she died, and otherwise in decent health.

    My neighbor died two years ago, after a long term of meds for
    A-Fib. The meds caused his liver to quit. He had been on a heart
    transplant list to get a heart..... He was taken off the list due to
    a too weak liver. And he couldn't get a liver, because his heart
    was too weak. He was in his 70s.

    I'm in my Medicare age.... am I "due"? (hell, I'm overdue!)

    Once one fully accepts the premise that life includes death, life begins to
    mean more than getting a new HDTV, or grabbing that next great sale item.

    So... I have colon cancer... and so it's in so many lymph nodes
    that I should expect it to be throughout my entire body...

    I remain waiting for the other shoe to drop, hoping I'll have enough time
    to get everything set for my family before my time comes.

    I'm finding that I'm getting more out of life now, than when I walked
    around feeling sorry for those that had cancer; -I- have cancer.

    It may be the beginning of the end of my life cycle, but it's not
    the end of life - It's the beginning.

    When we were born, it was the beginning of the end. Did we enjoy
    life less because of that premise?

    It's time now, to be more alive than before.

    50 to 70?
    I personally think that is rather young John. Most all of my relatives either lived into their 80s or are still alive in their 90s. Right now I'd sign up for 70 since I don't expect to make that by any means. I guess it has to do with what is the "normal" that one is used to. In some families making it to 60 might be a big deal while in others, they died at 89 - in the prime of their lives. I do find that many of us are preoccupied with dying from cancer and just dying in general. It's part of the "circle of life Simba" or the seasons. Out of life death, out of death life.
    Doing the constant chemo (or constant treatment of choice) is a drag, there's no kidding one's self about that but it comes with the cancer package.

    I still think that in a weird kind of way, we are the really lucky ones.
    We've heard the knock at the door.
    Life goes on within us or without us.
  • dianetavegia
    dianetavegia Member Posts: 1,942
    PhillieG said:

    50 to 70?
    I personally think that is rather young John. Most all of my relatives either lived into their 80s or are still alive in their 90s. Right now I'd sign up for 70 since I don't expect to make that by any means. I guess it has to do with what is the "normal" that one is used to. In some families making it to 60 might be a big deal while in others, they died at 89 - in the prime of their lives. I do find that many of us are preoccupied with dying from cancer and just dying in general. It's part of the "circle of life Simba" or the seasons. Out of life death, out of death life.
    Doing the constant chemo (or constant treatment of choice) is a drag, there's no kidding one's self about that but it comes with the cancer package.

    I still think that in a weird kind of way, we are the really lucky ones.
    We've heard the knock at the door.
    Life goes on within us or without us.

    Good Grief John
    I'm not stuck under any bus AND have a precious friend who got out of his truck to check on a shifting piece of equipment while on I-285 in Atlanta. His body was strewn over 90 feet. His family has to ride past that spot every day for the rest of their careers...

    My mother is 78 and healthy. My Dad is 82 and healthy. My grandmother died in her sleep at 92, etc. I've got great, great aunts still alive and doing fine. I think I always figured I'd live FOREVER.

    Circle of life, is right. Even the Bible says there's a time to live and a time to die. I'm 59 and hope to see 103. If I do, I want to be a model on the Colondar! In SPANDEX!