Calling all Stage IV's

dmdwins
dmdwins Member Posts: 454 Member
edited March 2014 in Colorectal Cancer #1
Hi everyone

I have been reading the semi-colon roll call and have noticed quite a few of you with Stage IV diagnosis that are either NED or living well with the disease. I would love to hear from any of you. Any secrets to your success- diet ,juicing , attitude-attitue-attitude. Just would like to befriend some folks that are in the same boat.(don't quite understand the add as a friend thing yet) Some days ya just feel like you are totally alone at Stage iv and great to hear of people doing well and also being able to support those that are having a rough time.

Please know that if you are not Stage IV I am not discounting the battle you are facing too. I would love to hear from you also.

Dawn
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Comments

  • lisa42
    lisa42 Member Posts: 3,625 Member
    stage IV
    Hi,

    I'm a stage IV, living with the disease for 1 yr and 8 mos. now. I can't yet say I'm fully NED, but I am still doing very well! My PET scan just recently showed NOTHING lighting up! Everything is gone except for some lung nodules, but they are all under 1 cm and, as I said, no longer light up on the PET. I started off with, of course, the rectal tumor, as well as 12+ tumors in my liver, in addition to the lung nodules. So, I would say I'm doing pretty well! I tried to keep a positive attitude as much as possible (which wasn't always easy), and I tried to stay as actively involved in "normal life". I still attended church, went out to lunch/dinner with friends, drove my kids to and from school, attended their sports activities, etc. Going through chemo didn't always make that possible every day and I did need help sometimes, but I tried to keep it as normal as possible. I also have stayed very proactive the whole time in researching any new info. and being as open and upfront with my doctors as possible. I can't say I have fully changed everything about my diet, but I have definitely made improvements. I take in more greens, try to get some organic foods, and I do take wheat grass (my kids call it green sludge). My faith in the Lord is really what got me through.

    This is not to say I didn't have tough times... I went through a liver resection, went through chemo, experienced the oxy side effects, neuropathy, and lots of new aches and pains in my joints and muscles that had never been there before. I feel like I aged a lot in this past year and a half. I had a recurrence this past August & had to go through 7 more months of chemo, BUT... now I'm ready to start "maintenance" treatment. It's so lovely to be able to say I have no "active" cancer in me at the moment and the treatment I'll be getting will be to keep things from growing! This is doable- lots of people suffer from lots of other chronic illnesses and suffer a lot of pain from them. The fact that I'm really not in much pain (except for the muscle aches and new joint pain, which I think may be rheumatoid arthritis- I need to get tested for that). Anyhow- I'm alive and doing much better than I ever imagined I could be, considering my state when I was first diagnosed (I was later told that I probably wouldn't have lasted another 4 months if I hadn't gone to the Dr. when I did).

    We're in this together- it is definitely helpful to hear encouraging stories from others.

    Lisa
  • impactzone
    impactzone Member Posts: 551 Member
    Stage 4 here
    Dx 9/06, 4 major surgeries and folfox. I'm just coming off my second lung wedge resection on 3/30. All work done at Stanford CA. I here you about the alone feelings and then doing all right. My attitude is changing all the time. Sometimes it is resigned, sometimes filled with rage, sometimes just accepting... I try all the visualizations stuff and eat healthy, (yes I do have fish and chicken) along with good exercise. In my almost 3 years now, I've seen such randomness with this disease. Some people do great and others who I know are tougher, smarter, stronger, more religious, healthier than me don't make it. I talk with a few close people and it really is my wife and kids I fight for. I wish I had the magic pill or could tell you to eat one more blueberry and it would all go away.

    I do take an antidepressant and that helps alot, along with work for me (teaching and coaching high school kids). I wish you well!
    Chip
  • snommintj
    snommintj Member Posts: 601

    Stage 4 here
    Dx 9/06, 4 major surgeries and folfox. I'm just coming off my second lung wedge resection on 3/30. All work done at Stanford CA. I here you about the alone feelings and then doing all right. My attitude is changing all the time. Sometimes it is resigned, sometimes filled with rage, sometimes just accepting... I try all the visualizations stuff and eat healthy, (yes I do have fish and chicken) along with good exercise. In my almost 3 years now, I've seen such randomness with this disease. Some people do great and others who I know are tougher, smarter, stronger, more religious, healthier than me don't make it. I talk with a few close people and it really is my wife and kids I fight for. I wish I had the magic pill or could tell you to eat one more blueberry and it would all go away.

    I do take an antidepressant and that helps alot, along with work for me (teaching and coaching high school kids). I wish you well!
    Chip

    non event
    I've pretty much treated this entire ordeal as a non event. Just something I have to do to get to the next day. But I kind of treat everything like that. I'm not gonna say I trained myself to do that or that I've worked on being this way. I just think a certain way. When I wake up every morning I brush my teeth and then go to the toilet. I don't dwell on those tasks, I do them and forget them. Same way with my cancer treatment. Once I decided on a course of action, everything I did became part of my daily routine. I did them and forgot them. There is seldom a day where I spend more than a few minutes thinking about me having cancer.
    Now, don't think I'm an emotionless robot. I cried with my wife the day I was diagnosed, not for me but for my young son. I want more than anything to be there for him. But when I finished crying I told my wife we wouldn't shed anymore tears until my fight was over. Whether they be tears of sorrow or joy, well that's still to be determined. I donate enough of my physical time dealing with this disease, I refuse to allow it to occupy any more of my time.
  • dixchi
    dixchi Member Posts: 431
    snommintj said:

    non event
    I've pretty much treated this entire ordeal as a non event. Just something I have to do to get to the next day. But I kind of treat everything like that. I'm not gonna say I trained myself to do that or that I've worked on being this way. I just think a certain way. When I wake up every morning I brush my teeth and then go to the toilet. I don't dwell on those tasks, I do them and forget them. Same way with my cancer treatment. Once I decided on a course of action, everything I did became part of my daily routine. I did them and forgot them. There is seldom a day where I spend more than a few minutes thinking about me having cancer.
    Now, don't think I'm an emotionless robot. I cried with my wife the day I was diagnosed, not for me but for my young son. I want more than anything to be there for him. But when I finished crying I told my wife we wouldn't shed anymore tears until my fight was over. Whether they be tears of sorrow or joy, well that's still to be determined. I donate enough of my physical time dealing with this disease, I refuse to allow it to occupy any more of my time.

    Wonder
    I am impressed snommintj.....don't think there are many of us who
    can say we face this problem with such acceptance but we are all
    striving for that I think. Maybe some of it comes from the family
    we grew up in......my parents were worriers, etc. so after formative
    years of being around that, I seem to be the same but everyday
    I am trying to achieve it with various aids along the way. Thanks
    for sharing your thoughts.

    Barbara
  • CherylHutch
    CherylHutch Member Posts: 1,375
    snommintj said:

    non event
    I've pretty much treated this entire ordeal as a non event. Just something I have to do to get to the next day. But I kind of treat everything like that. I'm not gonna say I trained myself to do that or that I've worked on being this way. I just think a certain way. When I wake up every morning I brush my teeth and then go to the toilet. I don't dwell on those tasks, I do them and forget them. Same way with my cancer treatment. Once I decided on a course of action, everything I did became part of my daily routine. I did them and forgot them. There is seldom a day where I spend more than a few minutes thinking about me having cancer.
    Now, don't think I'm an emotionless robot. I cried with my wife the day I was diagnosed, not for me but for my young son. I want more than anything to be there for him. But when I finished crying I told my wife we wouldn't shed anymore tears until my fight was over. Whether they be tears of sorrow or joy, well that's still to be determined. I donate enough of my physical time dealing with this disease, I refuse to allow it to occupy any more of my time.

    Attitude
    Wow JT... that is pretty darn impressive. I think you are the first person I have ever met (so to speak... I know we haven't really met) that can be so accepting of a condition that I know none of us chose to have.

    Me, I can't say that I'm even close to accepting that this is my fate and I just have to deal with it. Not that I have any answers on how to fix or get rid of it. Like you, I don't fight the treatments... it's something that I just know I have to do and will do if there's any chance the treatments will beat this monster and get it out of my life.

    When I'm feeling great and, like right now, am not under any treatments, then I can relax somewhat and denial is my friend ;) It's not that I pretend I don't have cancer... I do, and I know it's serious... but I go into denial that it is going to be terminal. Maybe in 30 years or so, but not in the near future. What is interesting... I'm sure there are a lot of other things in my life that might influence the length of my life... but I refuse to accept that this cancer is going to bring the end on closer than I am going to allow.

    So, yes, I'm fully aware that since I'm Stage IV, the cancer can flare up at any time, and in my case it seems, anywhere in my body. If/when it does, you bet I'm going to freak out each time because having new cancer areas is NOT in my plan of the cancer not having the upper hand. Even if my intellect says, "Calm down... you know this can happen and we are just going to treat it as it comes up. That's why we stick to an ongoing monitoring plan", I know I'll feel let down, emotional, and all those things we all are so aware of with this disease.

    But, the payoff is... when the cancer is stable and I don't need treatments, then I can enjoy life 100% without letting the cancer run my life... because sometimes denial is a good thing :)

    Hugggggs,

    Cheryl
  • dmdwins
    dmdwins Member Posts: 454 Member

    Stage 4 here
    Dx 9/06, 4 major surgeries and folfox. I'm just coming off my second lung wedge resection on 3/30. All work done at Stanford CA. I here you about the alone feelings and then doing all right. My attitude is changing all the time. Sometimes it is resigned, sometimes filled with rage, sometimes just accepting... I try all the visualizations stuff and eat healthy, (yes I do have fish and chicken) along with good exercise. In my almost 3 years now, I've seen such randomness with this disease. Some people do great and others who I know are tougher, smarter, stronger, more religious, healthier than me don't make it. I talk with a few close people and it really is my wife and kids I fight for. I wish I had the magic pill or could tell you to eat one more blueberry and it would all go away.

    I do take an antidepressant and that helps alot, along with work for me (teaching and coaching high school kids). I wish you well!
    Chip

    Thanks-Phil
    Hi Phil,

    Thanks for responding. Just hearing that it has been almost 3 years is inspiring. I understand what you are saying about the randomness of the disease- just seems to be no rhyme or reason sometimes to who does well and who doesn't. I figure that I must do as much as I can to fight and then the rest is in someones elses hand. I have dramatically changed my diet-not sure if it will help as far as the cancer but it is certainly making me healthier overall-my triglicerides were 37!!!

    I am in this fight for my family as well. I have set a goal to hold each of my daughters first child and they are far from that time in their life!!

    Work is a great distraction isn't it! What a good role model you are for high school kids. Keep at it.

    Dawn
  • dmdwins
    dmdwins Member Posts: 454 Member
    snommintj said:

    non event
    I've pretty much treated this entire ordeal as a non event. Just something I have to do to get to the next day. But I kind of treat everything like that. I'm not gonna say I trained myself to do that or that I've worked on being this way. I just think a certain way. When I wake up every morning I brush my teeth and then go to the toilet. I don't dwell on those tasks, I do them and forget them. Same way with my cancer treatment. Once I decided on a course of action, everything I did became part of my daily routine. I did them and forgot them. There is seldom a day where I spend more than a few minutes thinking about me having cancer.
    Now, don't think I'm an emotionless robot. I cried with my wife the day I was diagnosed, not for me but for my young son. I want more than anything to be there for him. But when I finished crying I told my wife we wouldn't shed anymore tears until my fight was over. Whether they be tears of sorrow or joy, well that's still to be determined. I donate enough of my physical time dealing with this disease, I refuse to allow it to occupy any more of my time.

    Good for you
    snommintj,
    I remember what my colon surgeon suggested after he gave me the "news". He said if you can, treat your cancer as a business. Spend the amount of time it takes to do what must be done-then close the books and go on with life until it is time to do "business" the next day, week etc. I think you are a great example of that.

    It was good to hear from you.. I wish you many many years with your young son. As a mom I too want to be there more than anything for them!

    Dawn
  • dmdwins
    dmdwins Member Posts: 454 Member
    lisa42 said:

    stage IV
    Hi,

    I'm a stage IV, living with the disease for 1 yr and 8 mos. now. I can't yet say I'm fully NED, but I am still doing very well! My PET scan just recently showed NOTHING lighting up! Everything is gone except for some lung nodules, but they are all under 1 cm and, as I said, no longer light up on the PET. I started off with, of course, the rectal tumor, as well as 12+ tumors in my liver, in addition to the lung nodules. So, I would say I'm doing pretty well! I tried to keep a positive attitude as much as possible (which wasn't always easy), and I tried to stay as actively involved in "normal life". I still attended church, went out to lunch/dinner with friends, drove my kids to and from school, attended their sports activities, etc. Going through chemo didn't always make that possible every day and I did need help sometimes, but I tried to keep it as normal as possible. I also have stayed very proactive the whole time in researching any new info. and being as open and upfront with my doctors as possible. I can't say I have fully changed everything about my diet, but I have definitely made improvements. I take in more greens, try to get some organic foods, and I do take wheat grass (my kids call it green sludge). My faith in the Lord is really what got me through.

    This is not to say I didn't have tough times... I went through a liver resection, went through chemo, experienced the oxy side effects, neuropathy, and lots of new aches and pains in my joints and muscles that had never been there before. I feel like I aged a lot in this past year and a half. I had a recurrence this past August & had to go through 7 more months of chemo, BUT... now I'm ready to start "maintenance" treatment. It's so lovely to be able to say I have no "active" cancer in me at the moment and the treatment I'll be getting will be to keep things from growing! This is doable- lots of people suffer from lots of other chronic illnesses and suffer a lot of pain from them. The fact that I'm really not in much pain (except for the muscle aches and new joint pain, which I think may be rheumatoid arthritis- I need to get tested for that). Anyhow- I'm alive and doing much better than I ever imagined I could be, considering my state when I was first diagnosed (I was later told that I probably wouldn't have lasted another 4 months if I hadn't gone to the Dr. when I did).

    We're in this together- it is definitely helpful to hear encouraging stories from others.

    Lisa

    wow-lisa
    It was great hearing from you and WOW - I think you are doing fabulous!! Your story is very encouraging to me. I was diagnosed about 1 yr and 6 months ago. I also have tried to keep our lives as normal as possible in the midst of everything - attending the girls sport activities,going to church and spending time with family. I have never been that concerned for me, because my faith is strong- It is when I think of the possibility of the girls having to grow up without me that the sadness and fear return.

    Oddly, I think I was stronger emotionally when I was in active treatment- feeling like I was fighting the battle (almost a year since last chemo May 08)Now it is just waiting and hoping until the next scan (end of May)Our lives are almost back to pre-dx with some changes- I just don't have the same -I can do it all Mom stamina as before.

    It is such wonderful news that you have no active cancer.I'm interested to hear about your maintenance chemo. It seems that it can be treated more like a chronic illness which is very encouraging. I am definetly in it for quantity of life with my kids not necessarily quality(though I feel really good right now- other than the fatigue)

    I would love to hear about your kids. They are very lucky to have a Mom like you.

    Thanks for responding!!

    Dawn
  • ruggersocks
    ruggersocks Member Posts: 78 Member
    dmdwins said:

    Thanks-Phil
    Hi Phil,

    Thanks for responding. Just hearing that it has been almost 3 years is inspiring. I understand what you are saying about the randomness of the disease- just seems to be no rhyme or reason sometimes to who does well and who doesn't. I figure that I must do as much as I can to fight and then the rest is in someones elses hand. I have dramatically changed my diet-not sure if it will help as far as the cancer but it is certainly making me healthier overall-my triglicerides were 37!!!

    I am in this fight for my family as well. I have set a goal to hold each of my daughters first child and they are far from that time in their life!!

    Work is a great distraction isn't it! What a good role model you are for high school kids. Keep at it.

    Dawn

    Stage IV here!
    I've been battling rectal cancer since May 2006. Was a Stage III then.

    Found 1 met to my liver and 1 met to my lung in July 2007.

    I've had rectal resection, radition/5fu combined, Folfox, ablation of liver met, lung surgery, folfiri. My body, at first, didn't handle folfiri well as I had a cancer-related seizure early on. 6 months of no driving just about killed me...not the cancer, hehehe.

    Scans have been every 3 months since September 2008. My next scan is tomorrow and I'll find out the results on Wednesday.

    It's getting better to live a life that's free of thinking about cancer every second of every day. It was like that in the beginning, but now I feel almost 'normal', whatever that means. I'm sure this will change if cancer ever shows up.

    Hugs to all of us! May NED be a part of our lives for a very long time :)

    Cheryl
  • dmdwins
    dmdwins Member Posts: 454 Member

    Stage IV here!
    I've been battling rectal cancer since May 2006. Was a Stage III then.

    Found 1 met to my liver and 1 met to my lung in July 2007.

    I've had rectal resection, radition/5fu combined, Folfox, ablation of liver met, lung surgery, folfiri. My body, at first, didn't handle folfiri well as I had a cancer-related seizure early on. 6 months of no driving just about killed me...not the cancer, hehehe.

    Scans have been every 3 months since September 2008. My next scan is tomorrow and I'll find out the results on Wednesday.

    It's getting better to live a life that's free of thinking about cancer every second of every day. It was like that in the beginning, but now I feel almost 'normal', whatever that means. I'm sure this will change if cancer ever shows up.

    Hugs to all of us! May NED be a part of our lives for a very long time :)

    Cheryl

    Will be thinking of you tomorrow
    I will be thinking of you and sending positive healing thoughts your way. May you hear those magic letters of NED on Wednesday.

    Dawn
  • kimby
    kimby Member Posts: 797
    Stage IV- checking in
    Yep, stage iv here. Diagnosed 8/07 at the age of 43 and living with the disease. I guess I consider this a chronic illness like diabetes or heart disease. In the last 20 mos I've had 5 surgeries, liver radiation, folfox, folfori, other chemo cocktails...more to come. 2009 has already been a tough year with treatments but here I am! I'm not able to work anymore - that was the most difficult part of the whole thing for me. I had to quit my job in January in order to pursue treatments full time. I have always enjoyed working and everything it brings but, for now, it is not to be.

    I'm not in a fight any longer, it is too exhausting for me to fight all the time. I'm in a negotiation. This canzer will be sharing my body, maybe for the rest of my life, so we need to coexist. I think that can work for me. I do what I need to do with daily treatments. But, I live my life. My only rule is to have fun every.single.day. And I do. I laugh all the time and make fun of any uncomfortable situations. Do I think my attitude or sense of humor will cure me? Probably not. Do I think it will extend my life? Who knows. What I do know is that it makes me WANT to live. When life is fun, who wants to quit?

    canzer has stolen some things from my life, but it hasn't taken my joy. it has also brought blessings too numerous to count. canzer is not a 'gift', in my opinion. I wouldn't wrap it up and give it to you for your birthday! But I am a blessed woman and this is just one of those things that life brings. I've never asked, "why me?" with the canzer, and when I celebrated my 25th wedding anniversary with the love of my life I didn't ask, "why me?" then, either. People wonder why horrible things happen to them but never why wonderful things do. I just don't get it, I guess. What makes life magnificent and personal is the good, the bad and the ugly. How you react determines your joy. I've seen people make themselves miserable when something good happens and I've seen people that are happy when bad things happen. I guess I just decided which I'd be. I don't look at my glass as half full or empty, I'm just happy to have a glass!

    Kimby
  • dmdwins
    dmdwins Member Posts: 454 Member
    kimby said:

    Stage IV- checking in
    Yep, stage iv here. Diagnosed 8/07 at the age of 43 and living with the disease. I guess I consider this a chronic illness like diabetes or heart disease. In the last 20 mos I've had 5 surgeries, liver radiation, folfox, folfori, other chemo cocktails...more to come. 2009 has already been a tough year with treatments but here I am! I'm not able to work anymore - that was the most difficult part of the whole thing for me. I had to quit my job in January in order to pursue treatments full time. I have always enjoyed working and everything it brings but, for now, it is not to be.

    I'm not in a fight any longer, it is too exhausting for me to fight all the time. I'm in a negotiation. This canzer will be sharing my body, maybe for the rest of my life, so we need to coexist. I think that can work for me. I do what I need to do with daily treatments. But, I live my life. My only rule is to have fun every.single.day. And I do. I laugh all the time and make fun of any uncomfortable situations. Do I think my attitude or sense of humor will cure me? Probably not. Do I think it will extend my life? Who knows. What I do know is that it makes me WANT to live. When life is fun, who wants to quit?

    canzer has stolen some things from my life, but it hasn't taken my joy. it has also brought blessings too numerous to count. canzer is not a 'gift', in my opinion. I wouldn't wrap it up and give it to you for your birthday! But I am a blessed woman and this is just one of those things that life brings. I've never asked, "why me?" with the canzer, and when I celebrated my 25th wedding anniversary with the love of my life I didn't ask, "why me?" then, either. People wonder why horrible things happen to them but never why wonderful things do. I just don't get it, I guess. What makes life magnificent and personal is the good, the bad and the ugly. How you react determines your joy. I've seen people make themselves miserable when something good happens and I've seen people that are happy when bad things happen. I guess I just decided which I'd be. I don't look at my glass as half full or empty, I'm just happy to have a glass!

    Kimby

    just what i want to hear
    Kimby,

    Your attitude and outlook on life are awesome. It is ispiring to see you living your life with a a sense of humor and fun AND living with the disease. I try to make steps towards that each day.

    I also haven't asked "why me" but have to admit I have asked "why my kids"? If I could just get past the possibility of them being here without me (i'm working on it)my mind could rest a bit more.

    Thanks so much for your post -it is just what I wanted to hear.

    Dawn
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    Half empty/half full/ or where the hells my glass!
    I'm a fellow stage IV person. I prefer the term "living with cancer" but I know many who like "survivor", whatever works for you. I was Dx in Feb 04. No family history of cancer, no symptoms, I would get yearly checkups, everything I should have been doing. I was 46 at the time. I am now 51 and still in treatment, have never really been dx NED. I was told 3 times after my lung operations that "they got it all" but here I am, still in treatment. I've had 5 operations and 180 something treatments of chemo. As far as coping with it, I have some similar views as Snommintj (sorry, I forgot the other names you like to be called, I think John was one of them...) except there is rarely a day that do not think about the cancer. I do not let it rule my life though. Many times people have said to me that they don't know how I do it, deal with cancer that is. I won't tell them how I "Do IT". My reply is that you'd be surprised what you are capable of doing when you are backed up into a corner. I feel I had 2 choices.
    1- Curl up and die
    2- Accept it and do all I can to fight it.
    I choose #2. At times I feel really normal even thought I am in treatment but much of that is the meds I take to help me cope with it. I'm not on cloud 9 by any means but I could not deal with it w/o an anti-depressant or anti-anxiety medication. Maybe I could but why torture myself, I feel it's fine to take advantage of that's out there for me. One thing John and I have in common is that we both have little kids. Mine are 15 and 9. I can't leave them now. I know sometime I will die, from what I don't know. If I had to guess I'd say cancer at some point but I really believe I have years ahead of me. I think if my kids were much older (and me too) that I may not be the fighter I am. Also, those how "know me" know I am not complacent and like a good fight. Maybe that has something to do with it too.

    I know that having a great support system helps too. my wife, the kids, my brother and sister and their kids, friends, coworkers, people on this site everyone helps me. Also, another way I deal with it is to try to keep doing things that I enjoy and to keep things as normal as possible. The garbage has to go out, the lawn needs cutting, I garden, play guitar, kayak, take photos. Lots of stuff.

    But in saying all of this, there certainly are times and days where it REALLY sucks and I hate it. I've been at the point of wondering if it's all worth it. So it's a roller coaster but I try to enjoy. I am glad that I have been able to inspire people (here and in the 'real world') and I do the best I can. I do believe it's ATTITUDE that does wonders.

    So that's about it Dawn.
    -phil

    This is a blurb about treatment:
    What types of treatment(s) have occurred?
    After switching doctors (I didn't like his approach to treatment, he wanted to 'control' the cancer, not cure me), I got hooked up a great team that wanted to cure me. I did 6 months of FOL-FOX chemo with Avastin. I had surgery in Sept 04 where they removed a piece of my colon (no bag), 60% of my liver, my gallbladder, and installed a hepatic pump. I had a bowel obstruction in Dec 04, had to go back to the hospital and have scar tissue removed. Started with chemo again. This time, FUDR and CPT11. I finished that in April 05. Just had a CT scan, there were spots in lungs that were there all of the time, now they think they might be getting bigger. I have had mets in my lungs and have been on Erbitux. I had surgery in my right lung in spring of 2006, both lungs in spring of 2007, and the right lung in 2008. Not sure what is going on now, I am "stable" but there are 'spots' in my lungs which may or may not be cancerous. I am still in treatment.
  • StacyGleaso
    StacyGleaso Member Posts: 1,233 Member
    All clear!
    I was diagnosed @ age 33 back in October 2001. Been clear~~NED~~ever since my surgery in January 2002. Mine was liver mets. I can only attribute my success to good doctors, good support, good attitude, and the fact that I don't think I was quite ready to leave this earth yet! Honestly, I don't know why some people are victorious in this battle and some people aren't. There is a lot of "survivor guilt" when a person is successful. I am truly grateful for every single day, though.

    I am good @ pep talks if you (or anyone) ever needs one!

    Happy Monday!

    Hugs,
    Stacy
  • dmdwins
    dmdwins Member Posts: 454 Member

    All clear!
    I was diagnosed @ age 33 back in October 2001. Been clear~~NED~~ever since my surgery in January 2002. Mine was liver mets. I can only attribute my success to good doctors, good support, good attitude, and the fact that I don't think I was quite ready to leave this earth yet! Honestly, I don't know why some people are victorious in this battle and some people aren't. There is a lot of "survivor guilt" when a person is successful. I am truly grateful for every single day, though.

    I am good @ pep talks if you (or anyone) ever needs one!

    Happy Monday!

    Hugs,
    Stacy

    PEP talks are great
    I am so glad to hear from you all!
    It is just what I needed. Both to hear of NED success stories and living with the disease success stories. I am not sure which story line will be mine (pet end of May- 1st since second surgery)but I am feeling much better about the journey either way!!

    Smiles,
    Dawn
  • PhillieG
    PhillieG Member Posts: 4,866 Member

    All clear!
    I was diagnosed @ age 33 back in October 2001. Been clear~~NED~~ever since my surgery in January 2002. Mine was liver mets. I can only attribute my success to good doctors, good support, good attitude, and the fact that I don't think I was quite ready to leave this earth yet! Honestly, I don't know why some people are victorious in this battle and some people aren't. There is a lot of "survivor guilt" when a person is successful. I am truly grateful for every single day, though.

    I am good @ pep talks if you (or anyone) ever needs one!

    Happy Monday!

    Hugs,
    Stacy

    Why
    You make a very good point Stacy, who knows why some people who have identical situations to others do not have the same success. I think that is why cancer is such a SOB to try to "cure". It's not like a broken arm where you see it's broken and there are certain ways to deal with fixing them. With cancer, it's a thing that is forever changing and can be as unique as we all are. It's a tough nut to crack but I hope someone cracks it some day. Maybe now that more experimenting could be available with stem cell research, new avenues can be open to us.

    I forgot to mention in my little blurb about how fortunate I've been with having a great medical team that did the hands on dirty work. Without them, well...who knows.

    I'll keep your pep talk offer in mind :-)
    -phil
  • Wenchie
    Wenchie Member Posts: 88
    Stage IV
    Hey Dawn, I too am a Stage IV and getting ready to start Folfiri. I had a Stage III colon/rectal surgery in 2007 and now have nodules in both lungs and have been told they're not resectable. I went to MD Anderson and they more or less told me to go home and die. I'm very depressed and would love to hear more good stories and I was wondering if you received any responses regarding juicing and diets. Take care and I'd love to hear from you and we can share battle stories.
  • kimby
    kimby Member Posts: 797
    Wenchie said:

    Stage IV
    Hey Dawn, I too am a Stage IV and getting ready to start Folfiri. I had a Stage III colon/rectal surgery in 2007 and now have nodules in both lungs and have been told they're not resectable. I went to MD Anderson and they more or less told me to go home and die. I'm very depressed and would love to hear more good stories and I was wondering if you received any responses regarding juicing and diets. Take care and I'd love to hear from you and we can share battle stories.

    Wenchie
    Don't you believe it! I just had a surgeon (in January) tell my husband to take me home and to live my dreams...I had 6 mos at most and half of them would be too sick to enjoy. I immediately found a radiation oncologist that radiated my liver mets and we are still working on more treatments. I am also on systemic chemo, but I have a much longer life expectancy than that surgeon thought. You know surgeons, if you can't cut it out you're dead>>>NOT!

    Go quickly and get more opinions! Find someone willing to save your life. Doctors don't know everything. Don't give up until YOU are ready to.

    Kimby
  • CherylHutch
    CherylHutch Member Posts: 1,375
    Wenchie said:

    Stage IV
    Hey Dawn, I too am a Stage IV and getting ready to start Folfiri. I had a Stage III colon/rectal surgery in 2007 and now have nodules in both lungs and have been told they're not resectable. I went to MD Anderson and they more or less told me to go home and die. I'm very depressed and would love to hear more good stories and I was wondering if you received any responses regarding juicing and diets. Take care and I'd love to hear from you and we can share battle stories.

    Stage IV
    Ya Wenchie... listen to Kimby!! There are a lot of us, who have varying degrees of "Stage IV" and some of us just don't fit into the mold of what doctors say the statistics are. Sheesh... go home to die?? Is that an order??? ;)

    Once they found that my colon cancer had spread to my adrenal gland and lungs, I was given the "The prognosis is not good" talk. It seems Stage 1 - III the medical profession seems to think there is always a possibility of a cure, but once you cross that like to Stage IV, your days are numbered.

    My oncologist is a brilliant woman, but she had to give me the bad news... the news all Stage IV folk seem to get. But, lucky for me, as much as my "prognosis was not good" she was not willing to just throw her hands up and say there's nothing else we can do... she took my case and got other opinions.

    The long and the short of it... others recommended surgery for the adrenal and if the lung mets started growing quickly (which was the expectation), then we would do chemo to slow down the progression and/or shrink them. The adrenal surgery happened and appears to have been successful... and now we are in "wait and see" mode on the lung mets... we are waiting to see if they plan on growing. So far, I have been 17 months without chemo while we wait... and no one is talking death is imminent anymore. Lots of other words have been used ... that I have "indolent" cancer, that my cancer is now being very "lazy", that it is soooo slow growing it's agonizingly slow... but nothing about death is around the corner ;)

    So I have gone from a death sentence to having very lazy cancer... sometimes Lazy is good :)

    Hugggggs,

    Cheryl
  • Wenchie
    Wenchie Member Posts: 88
    kimby said:

    Wenchie
    Don't you believe it! I just had a surgeon (in January) tell my husband to take me home and to live my dreams...I had 6 mos at most and half of them would be too sick to enjoy. I immediately found a radiation oncologist that radiated my liver mets and we are still working on more treatments. I am also on systemic chemo, but I have a much longer life expectancy than that surgeon thought. You know surgeons, if you can't cut it out you're dead>>>NOT!

    Go quickly and get more opinions! Find someone willing to save your life. Doctors don't know everything. Don't give up until YOU are ready to.

    Kimby

    Kimby and ...(darn it, I can't remember who wrote the other post
    I've been to my Radiologist, my surgeon, MDAnderson, sent films to Johns Hopkins, working with my Oncologist and not a single one of them is encouraging! I'm trying to get my insurance company to approve a lung biopsy so I can get into a clinical trial and start chemo again too! Apparently, I had a "solitary nodule" which would have been resectable last October but THE RADIOLOGIST MISSED IT and now I have 5 or more. Anyways, it's been 6 months with no treatment and I'm very anxious to start. I looked at surgery on the lungs and was turned down, RFA and was discouraged by both my Oncologist and Radiologist so for now, I'm trying to eat healthy and not get too depressed until I can get that damn biopsy. Geez, I have to admit I cheated and consumed way too many jellybeans! Thanks to both of you. I just found this website this evening and it's the first website I've found that is the least bit encouraging. xoxox