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

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  • Shayenne
    Shayenne Member Posts: 2,342
    #42
    Sundanceh said:

    The Italian Stallion :)
    Well it took a little over 7-months but I've seen my Chicky now get her "Italian" blood a boilin' :)

    I sure don't want to be on her bad side, that's for sure, LOL :)

    Italian women are known for their passion - in love and war. If I'm going into a battle, then I want Chicky right beside me watching over me :)

    Anne - we all know what you meant and we love you!
    Tina - you were very diplomatic and kept your cool!

    I'm outta' here...don't hurt me :)

    -Craig

    Tina....
    I'm glad you talked to Anne, I did too, I know that hurt her, and no apologies were necessary, Anne was being kind, and your post was alot nicer then mine, sometimes you can only be so nice so long lol...here she is, calling her a "newbie" like newbies aren't allowed in our discussions, when everyone is, Anne is no newbie, even if she were, her opinions would be very welcomed here, as anyone elses. So true about how Mike would love what that person is in...8 years of life with the cancer, what I would give if I knew I even had that long!

    You make me laugh Lion, you can turn me being so grumpy into someone who is just laughing now..are you saying I wasn't diplomatic like Tina? LOL..I'm kidding, I know exactly what you are saying, and you are choosing to be the true gentleman, and not comment to her at all, (but I know what you're thinking) LOL...

    I would never hurt you ;)

    Hugsss!
    ~Donna
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #43
    azsunwmn said:

    Exclusive Club We're In, Isn't It!
    Wish I wasn't a member but I can see there are many wise people that have this terrible disease. I have been on such a roller coaster trying to decide whether I want to take chemo forever or not. Even my husband wants me to end the ups and downs of this decision. This May 23, it will be the 8th anniversary of my diagnosis of Stage IV. I have lasted a lot longer than anyone expected me to. My liver's been resected, I had a tumor in my lungs that blocked 95% of my airway and pneumonia from the radiation in my lungs and four rounds of chemo. At this point, I just feel tired of fighting. Does anyone fault me for feeling like I am giving up?

    Lucky Us
    I wish I could be like Groucho "I wouldn't join any club that would have someone like me as a member" or something close to that!
    There is a book by Barbara Ehrenreich called
    "Bright-sided
    How the Relentless Promotion of Positive
    Thinking Has Undermined America".
    It has to do with how many americans now-a-days feel that they are not allowed to think about things negatively at all... An interesting concept to me.

    While I certainly can see how your post and feelings are causing a lot of opinions from people on the site, there seems to be... can't think of a good word here...people often feel they know what is best for everyone else. I have to go back to the old "quality of life" thing. Some people want to live to be 100 or more. I just want to live as long as I am relatively healthy and positively enjoying life. My Dad used to say "May you live as long as you want to and want to as long as you live".

    You do have to understand, and I imagine that you do Azsunwmn, that when you make a post like you did on a site like this that there will be comments from one and all. This is, after all, a survivors site. I think that we all need to realize that no matter how hard we try to get through this, there may some a point when enough is enough. We all have our own threshold that we will face (or not face) at some point.
    I wish you peace
    --phil
  • Nana b
    Nana b Member Posts: 3,030 Member
    #44
    azsunwmn said:

    Do Not Use the Term "Give Up"
    You are a "newbie" to this discussion. Anyone who has fought cancer for 8 years and has done as much as I have to live as long as I have, resents those words "don't give up", even though your intentions were good. You have alot to learn about cancer survivorship.

    Goodness
    Keep on lurking, we need positive communication on this board.
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    #45
    azsunwmn said:

    Do Not Use the Term "Give Up"
    You are a "newbie" to this discussion. Anyone who has fought cancer for 8 years and has done as much as I have to live as long as I have, resents those words "don't give up", even though your intentions were good. You have alot to learn about cancer survivorship.

    Everyone's personal story and battle is different
    You do not have the right to tell ANYONE that they are a "newbie" so they "have a lot to learn about cancer survivorship."

    I'm sorry you have had a rough road. But you don't know what roads any of the rest of us have walked down. You don't have the right to assume. Your reply was rather rude to someone who was only trying to encourage you.

    Sure, I have my days that I get tired of everyone saying "stay positive" because there are days that you just aren't (even if most days you are). But when people say it with good intentions, I'm not going to bite their heads off for it - or tell them they have a lot to learn about cancer.

    You'd probably call me a "newbie" too if you just decided to assume. But I fought cervical cancer for a few years (NED 5 years now) before starting my current battle with colon cancer, and have had one odd problem after another. We all have our own paths that led us here, and others do not know all the details. I'd say some that have only been dx'd a short time, but have had lots of problems with surgeries and/or treatments are no more "newbies" than someone that has only had one successful surgery w/o any complications, even if they've had years of chemo.

    I wish you the best, whether you give up altogether now, or if you decide to try alternative ways to survive, rather than chemo. Only YOU can decide what is best for you now.
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    #46
    Sorry Jennie
    If at any point you feel you need a break, I'd just tell your onc that you really need one. Due the 2-3 more treatments now as he suggests, and if the PET/CT and CEA are good, ask if you can have a break before starting Xeloda.

    I can tell you I have a friend who has been on Xeloda for well over a year (pancreatic cancer), and has very little side effects. He's stage IV and went through all sorts of awful clinical trials, etc. He was thrilled with Xeloda, and it worked well for him for a long time. Unfortunately he recently has some growth again in some tumors and has to go back to another drug he had before (which he hates).

    In the end, it is your choice. If you are NED and stay NED for a while, and you choose to discontinue chemo if you have issues with quality of life, then do it. A lot of Stage IV people that go NED stay NED even w/o chemo, or at least take breaks from chemo.

    Maybe you'd feel better getting a second opinion at this point? You might want to consider that too.

    I hope your back is healing. You've been through a lot lately.
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #47
    Kathryn_in_MN said:

    Sorry Jennie
    If at any point you feel you need a break, I'd just tell your onc that you really need one. Due the 2-3 more treatments now as he suggests, and if the PET/CT and CEA are good, ask if you can have a break before starting Xeloda.

    I can tell you I have a friend who has been on Xeloda for well over a year (pancreatic cancer), and has very little side effects. He's stage IV and went through all sorts of awful clinical trials, etc. He was thrilled with Xeloda, and it worked well for him for a long time. Unfortunately he recently has some growth again in some tumors and has to go back to another drug he had before (which he hates).

    In the end, it is your choice. If you are NED and stay NED for a while, and you choose to discontinue chemo if you have issues with quality of life, then do it. A lot of Stage IV people that go NED stay NED even w/o chemo, or at least take breaks from chemo.

    Maybe you'd feel better getting a second opinion at this point? You might want to consider that too.

    I hope your back is healing. You've been through a lot lately.

    Thanks so Much Kathryn
    Appreciate the input. A lot is MUCH better now.... and I have opted for the Xeloda..... Thanks my dear friend......

    Jennie
  • marmite
    marmite Member Posts: 5
    #48
    I CAN SO RELATE TO YOU
    Hi Jennie,

    I was really interested to read your post as I got almost the exact same news in early Dec. I was diagnosed in October 2007 and really believed I would beat this disease, no matter what the odds. In August 2009 I was NED, by December my cancer was growing again - this is the fourth time this has happened. This time my Oncologist put it much more bluntly - told me I would be on chemo for the rest of my life - and for the first time since my diagnosis, I fell apart.

    Am still struggling to pick the pieces back up but your email actually encourages me. If 20% of stage iv don't have recurrance - well that's higher that I expected and some of us have to be in that 20% to make the statistics work. Plus the 'no cure' - well that's only at the current time and it's only one person's opinion. Things are changing all the time in terms of treatments. I really hope you're one of the lucky ones.

    My Oncologist is amazing but he doesn't know everything and a lot of medical decisions are based upon supposition and statistics. I feel exactly the same way - that "doctors run out of options and throw their hands up and say they can do no more". But that's not good enough until I feel they've exhausted every possible option. Like you, the 5FU treatment works which is a miracle - but I believe there has to be more.

    Good luck, am thinking of you. x
  • kimby
    kimby Member Posts: 797
    #49
    Jennie
    Dear friend, I'm so sorry I'm replying so late. You don't have to be on chemo forever. If your next scan is clear ask for a chemo break. Frequent scans will keep you up to date on your status and you can go back to chemo IF you have to. Don't let your doctor be in charge. This is YOUR battle. Yes, you may have a great team of doctors but remember that you are the coach! You get to decide how things go. Sounds like strong words but you know how to sweeten it up so the doc can swallow this medicine. LOL

    Prayers to you my friend,

    Kimby
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #50
    kimby said:

    Jennie
    Dear friend, I'm so sorry I'm replying so late. You don't have to be on chemo forever. If your next scan is clear ask for a chemo break. Frequent scans will keep you up to date on your status and you can go back to chemo IF you have to. Don't let your doctor be in charge. This is YOUR battle. Yes, you may have a great team of doctors but remember that you are the coach! You get to decide how things go. Sounds like strong words but you know how to sweeten it up so the doc can swallow this medicine. LOL

    Prayers to you my friend,

    Kimby

    Kimby is right *
    You can ask/tell them you need a break. First, it's ALWAYS your call. There could be times when taking a break might not be in your best interest and you and your team know when that it. There are also times when taking a break will not make a difference (if any) in where you are at with "it". I've asked a for a few breaks over the years, just a month or so, and I'm still here.
    (I'm not NED either but I'm still here!)
    -p

    *Kimby, yes, you can show this to your husband.
    ;-)
  • karafranny
    karafranny Member Posts: 14
    #51
    hi jennie,
    try not to be too
    hi jennie,

    try not to be too sad, i know how you feel im stage 4 colon cancer & recently learned that i will be enduring chemo probably for the rest of my life i was diagnosed last year. had surgery half of my colon removed & 70% of my liver. i still feel it everyday. i started folfox last june, after 8 cycles & another ct scan it isnt working i now have 1cm lesions in my lungs. i had reoccurrences before i started chemo. this cancer sucks!!!! but i try to stay positive & live 1 day at a time. my oncologist doesnt share alot, i geuss he doesnt want everyone to freak out on him. im going for a 2nd opinion this friday at dana faber boston, ma. you never know a cure could be right around the corner???
    i hate like feeling this has become my life. i try not to focus all the time on it.
    i wish you luck. and dont give up hope!!! im 45 & my grandfather had colon cancer???
  • grouchy
    grouchy Member Posts: 1
    #52
    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

    life of chemo
    My colon cancer is gone and did not return but my husband has lung cancer plus tumor on adrenal gland so is inoperable and also too many for radiation. Onc said chemo forever. After reading this site I know that is how some people have to survive. He is quite upset at the thought of having chemo the rest of his life, but he is very lucky it only makes him real tired and no side effects of the chemo. Some pain from the cancer, but nothing real bad now. Sounds like many people only have the choice of surviving with chemo if they want to keep the cancer from growing more.
  • CaryRenault
    CaryRenault Member Posts: 11
    #53
    just4Brooks said:

    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

    newbie agrees

    I just wanted to let you know I love your post. It is soo TRUE and to the point.
  • CaryRenault
    CaryRenault Member Posts: 11
    #54
    kimby said:

    Jennie
    Dear friend, I'm so sorry I'm replying so late. You don't have to be on chemo forever. If your next scan is clear ask for a chemo break. Frequent scans will keep you up to date on your status and you can go back to chemo IF you have to. Don't let your doctor be in charge. This is YOUR battle. Yes, you may have a great team of doctors but remember that you are the coach! You get to decide how things go. Sounds like strong words but you know how to sweeten it up so the doc can swallow this medicine. LOL

    Prayers to you my friend,

    Kimby

    Yes, I agree
    Thanks for your post. It lets me know that as I start to face another battle of a different
    source that I am the BOSS here! It is my battle as you say.
  • bdee
    bdee Member Posts: 304
    #55
    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

    Same with me
    Deb,
    Word for word your post is exactly what I would have to write.

    Debbie in Arkansas

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