Question for any "Old Timers" out there

PhillieG
PhillieG Member Posts: 4,866
edited March 2014 in Colorectal Cancer #1
I don't mean age wise, I mean people who have been dealing with colon cancer for an extended period of time with at no time being NED. I was dx 5 years ago last week and I've been in treatment ever since with the exception of 2 small breaks (maybe 6-8 weeks off due to not being able to stand it anymore) and have racked up well over 170 rounds of various chemo (folfox, 5FU, CPT11, FYDR? and maybe others, I don't recall at the moment). I am on Erbitux and CPT11 for over 3 years at this time. I did just stop the CPT11 in early January due to the severe cramping it caused me and that I have reached the point of feeling like WTF??, Will I never be NED?? I have small 'something' in my right lung that we do not know what they are but they are stable. I have had 3 operations on my right lung plus 1 RFA there and 2 operations that included the left lung. Due to scar tissue, I am not able to have another operation, at least in my right lung. Not sure about the left one but the trouble area is the right lung. So, after giving you my past 5 years in one giant paragraph, has anyone else been in treatment as long as this or an I the lucky one? I really just feel like I will be on this FOREVER and if that's the way it goes, then that's the way it goes. At least we can keep it stable at this point. BTW: I'm only 51, not that it matters but my kids are still young (9 and 15) and that matters.

On a side note, I get another CT scan this coming Monday (3/2) and get results the following Monday.

Thanks
-phil
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Comments

  • kimby
    kimby Member Posts: 797
    Old Biddy?
    Phil,

    I'm so sorry you have been doing this for so long. I was dx August 07, so I'm not as 'old' as you. The problem is, many of us stage IV's won't be around in 5 yrs to be in tx. In the last 19 mos I've had 5 surgeries and I'm currently on the last FDA approved drugs for CRc (mitomycin, avastin, xeloda). Disease has progressed on every chemo cocktail I've tried and currently my liver is not operable (we tried in January, failed surgery) so we are doing some rads on that baby.

    I can only imagine how difficult it is to still be on chemo after 5yrs - it sucks! But, yes, you are the 'lucky one' that gets to still be here after 5yrs and you still have options. I know it's hard to keep at it, but as you said, you have young kids and that matters. How is your quality of life? Are you still doing things that are important to you? Are you having as much fun as your avitar indicates? Only you know the answers. You hold the key to your future at this point.

    Congrats on 5 yrs! Celebrate that (or anything else you can think of)!

    "old biddy" (not so much!)

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

    Old Biddy?
    Phil,

    I'm so sorry you have been doing this for so long. I was dx August 07, so I'm not as 'old' as you. The problem is, many of us stage IV's won't be around in 5 yrs to be in tx. In the last 19 mos I've had 5 surgeries and I'm currently on the last FDA approved drugs for CRc (mitomycin, avastin, xeloda). Disease has progressed on every chemo cocktail I've tried and currently my liver is not operable (we tried in January, failed surgery) so we are doing some rads on that baby.

    I can only imagine how difficult it is to still be on chemo after 5yrs - it sucks! But, yes, you are the 'lucky one' that gets to still be here after 5yrs and you still have options. I know it's hard to keep at it, but as you said, you have young kids and that matters. How is your quality of life? Are you still doing things that are important to you? Are you having as much fun as your avitar indicates? Only you know the answers. You hold the key to your future at this point.

    Congrats on 5 yrs! Celebrate that (or anything else you can think of)!

    "old biddy" (not so much!)

    Kimby

    thanks
    I know it could be much, much worse. I still have some options open I think as far as chemo goes. My quality of life (QOL) is mostly good. I have (had) to work, and luckily have been able to work for the past 5 years. There are times though while either being in the hospital or in treatment when it gets to be too much and I question the QOL that I have.
    I should be thankful for what I have...
    Thanks for your response Kimby, best of luck to you.
    -p
  • kimby
    kimby Member Posts: 797
    PhillieG said:

    thanks
    I know it could be much, much worse. I still have some options open I think as far as chemo goes. My quality of life (QOL) is mostly good. I have (had) to work, and luckily have been able to work for the past 5 years. There are times though while either being in the hospital or in treatment when it gets to be too much and I question the QOL that I have.
    I should be thankful for what I have...
    Thanks for your response Kimby, best of luck to you.
    -p

    Phil...
    I didn't mean to sound patronizing. Yes, we should all be grateful for what we have. You are still allowed to gripe. canzer sucks! chemo sucks! You have been through a lot and it's not over yet. It is so difficult when you don't have an end date for tx to look forward to.

    If life is good, keep going. Don't slow down and certainly don't stop! I'll be here for you to complain to as long as I can gripe, too! LOL

    Let's have a big party in another 5 yrs, chemo or not!

    Kimby
  • Shayenne
    Shayenne Member Posts: 2,342
    kimby said:

    Phil...
    I didn't mean to sound patronizing. Yes, we should all be grateful for what we have. You are still allowed to gripe. canzer sucks! chemo sucks! You have been through a lot and it's not over yet. It is so difficult when you don't have an end date for tx to look forward to.

    If life is good, keep going. Don't slow down and certainly don't stop! I'll be here for you to complain to as long as I can gripe, too! LOL

    Let's have a big party in another 5 yrs, chemo or not!

    Kimby

    That's scary...
    Are most of us not going to survive to 5 years? I thought there were people living with this for longer, now you got me wondering if that's all I'm fighting for..just 5 more years, if I reach that..
  • glinka65
    glinka65 Member Posts: 132
    Shayenne said:

    That's scary...
    Are most of us not going to survive to 5 years? I thought there were people living with this for longer, now you got me wondering if that's all I'm fighting for..just 5 more years, if I reach that..

    thats scary
    u aint goin anywhere!!!!!!! me either! keep the faith
  • kimby
    kimby Member Posts: 797
    Shayenne said:

    That's scary...
    Are most of us not going to survive to 5 years? I thought there were people living with this for longer, now you got me wondering if that's all I'm fighting for..just 5 more years, if I reach that..

    Many/Most
    I didn't say "most", I said "many". Yes, people die of stage iv colon canzer. Sad but true. It IS scary so I don't EVER look at the stats. You are not a statistic. You say: "if that's all I'm fighting for...". I am fighting for 5 more years. I told my docs if they can give me 5 yrs, the technology and research can give me 5 more. From 10 I can get 10 more....My philosophy is "5 will get you 10" if you know what I mean. Yes, all I'm fighting for is 5 more years.

    But you also need to realize that there are degrees of stage IV also. I really wish they would break that down more but some have a better prognosis than others. canzer really SUCKS! (have I already said that? LOL)

    Kimby
  • fez1
    fez1 Member Posts: 47
    kimby said:

    Many/Most
    I didn't say "most", I said "many". Yes, people die of stage iv colon canzer. Sad but true. It IS scary so I don't EVER look at the stats. You are not a statistic. You say: "if that's all I'm fighting for...". I am fighting for 5 more years. I told my docs if they can give me 5 yrs, the technology and research can give me 5 more. From 10 I can get 10 more....My philosophy is "5 will get you 10" if you know what I mean. Yes, all I'm fighting for is 5 more years.

    But you also need to realize that there are degrees of stage IV also. I really wish they would break that down more but some have a better prognosis than others. canzer really SUCKS! (have I already said that? LOL)

    Kimby

    I Agree
    I agree with you so much, Kimby! I "hear" what Phil is saying. To be up front, I do not have cancer- my husband was diagnosed in July'05 with Stage IV. He's not as long a survivor as Phil but as, with all of you, he's been through it all; 2 surgeries, 2 RFA's, FOLFOX, FOLFIRI, ERBITUX, stereotactic radiation and now we're hoping that he's a candidate for SirSpheres. No matter what he's tried his liver tumors come back and they are clustered in an inoperable area of the liver. It totally sucks! He often feels as Phil does, "when does it stop". I then remind him, and not so gently at times, that this is how it is... you try whatever might work, you get a response one way or the other and then you go from there. You stay alive to get to the next new treatment.... We both get so weary and sick to death of cancer. But he feels that he can't give up, that he wants to live and that he'd try anything, even if it had a 1% chance of success.
  • Shayenne
    Shayenne Member Posts: 2,342
    fez1 said:

    I Agree
    I agree with you so much, Kimby! I "hear" what Phil is saying. To be up front, I do not have cancer- my husband was diagnosed in July'05 with Stage IV. He's not as long a survivor as Phil but as, with all of you, he's been through it all; 2 surgeries, 2 RFA's, FOLFOX, FOLFIRI, ERBITUX, stereotactic radiation and now we're hoping that he's a candidate for SirSpheres. No matter what he's tried his liver tumors come back and they are clustered in an inoperable area of the liver. It totally sucks! He often feels as Phil does, "when does it stop". I then remind him, and not so gently at times, that this is how it is... you try whatever might work, you get a response one way or the other and then you go from there. You stay alive to get to the next new treatment.... We both get so weary and sick to death of cancer. But he feels that he can't give up, that he wants to live and that he'd try anything, even if it had a 1% chance of success.

    Yes...
    ...I guess I do have to realize as well, that I may not make it as well as I want too, all we can do is hope and pray that these treatments they give us help us to get to that mark, I will try, that's for sure, I sure am not ready to go anytime too soon!
  • PhillieG
    PhillieG Member Posts: 4,866
    kimby said:

    Phil...
    I didn't mean to sound patronizing. Yes, we should all be grateful for what we have. You are still allowed to gripe. canzer sucks! chemo sucks! You have been through a lot and it's not over yet. It is so difficult when you don't have an end date for tx to look forward to.

    If life is good, keep going. Don't slow down and certainly don't stop! I'll be here for you to complain to as long as I can gripe, too! LOL

    Let's have a big party in another 5 yrs, chemo or not!

    Kimby

    Not patronizing at all
    Kimby, you didn't sound that way at all. There was a woman who used to post here by the name of Jana Miller. She was so nice and such a fighter, she passed away last October I found out. Every once in a while when I'd bit ch and moan about things she'd tell me "at least I have options". Funny, you can't say the word b i t c h unless you put spaces between the letters. She had no surgical options at all and was in much worse shape than I was. It was the sort of "slap in the face" that I needed. I plan on being around for a while yet but after 5 years, I do not have the same optimism and energy that I used to have. I was 46 when dx and I did this thing where I kayaked 1-2 miles every single day in a row for 81 days up until my 1st operation. I have kept things positive (mostly) since then but after 5 years of rolling that boulder up the hill every day only to have it roll back down at night, I get tired of it. Someone on here put is nicely, "it's a grind" they said.

    Statistically speaking (and this goes with older data) I've read it is only a 5-10% 5 yr survival rate for Stage IV people. So I'm in that lucky group. Butt, you can't believe all that stuff either, it counts people who were 90 when they were dx and chances are they might not have made 100. I believe 90% of it is in your head and your attitude. Right now, mine isn't the best but I get like this before scans and this is a biggie since it will determine what my protocol will be for the coming months. Then again, I could get hit by a bus cross the street in NYC...Go figure.
    Thanks everyone for your input. It's very valuable to me and I appreciate it a lot.
    -phil
  • kimby
    kimby Member Posts: 797
    PhillieG said:

    Not patronizing at all
    Kimby, you didn't sound that way at all. There was a woman who used to post here by the name of Jana Miller. She was so nice and such a fighter, she passed away last October I found out. Every once in a while when I'd bit ch and moan about things she'd tell me "at least I have options". Funny, you can't say the word b i t c h unless you put spaces between the letters. She had no surgical options at all and was in much worse shape than I was. It was the sort of "slap in the face" that I needed. I plan on being around for a while yet but after 5 years, I do not have the same optimism and energy that I used to have. I was 46 when dx and I did this thing where I kayaked 1-2 miles every single day in a row for 81 days up until my 1st operation. I have kept things positive (mostly) since then but after 5 years of rolling that boulder up the hill every day only to have it roll back down at night, I get tired of it. Someone on here put is nicely, "it's a grind" they said.

    Statistically speaking (and this goes with older data) I've read it is only a 5-10% 5 yr survival rate for Stage IV people. So I'm in that lucky group. Butt, you can't believe all that stuff either, it counts people who were 90 when they were dx and chances are they might not have made 100. I believe 90% of it is in your head and your attitude. Right now, mine isn't the best but I get like this before scans and this is a biggie since it will determine what my protocol will be for the coming months. Then again, I could get hit by a bus cross the street in NYC...Go figure.
    Thanks everyone for your input. It's very valuable to me and I appreciate it a lot.
    -phil

    Go For It!
    Phil - b i t ch away! You have earned it with all you've been through.

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

    Go For It!
    Phil - b i t ch away! You have earned it with all you've been through.

    Kimby

    7 words you can't say on CSN.com
    With all of the **** we are going through, you'd think they'd let us let the expletives fly!
    **** a duck!
    -phil
  • pamness
    pamness Member Posts: 519 Member
    I saw your post and let me say - you have my respect and
    are an inspiration. I was diagnosed stage IIIA, and have been ned for 18 months. However, I have had odd test results and may be facing a stage IV diagnoses.

    I had a horrible time with intial chemo, it seems to me you have gone above and beyond, hopefully and sounds like, you are going to be the lucky one. I think that not only are you going to be "lucky" for you and you family but for others who are facing the stage IV type of ambiguity.

    All my best,

    Pam
  • PhillieG
    PhillieG Member Posts: 4,866
    pamness said:

    I saw your post and let me say - you have my respect and
    are an inspiration. I was diagnosed stage IIIA, and have been ned for 18 months. However, I have had odd test results and may be facing a stage IV diagnoses.

    I had a horrible time with intial chemo, it seems to me you have gone above and beyond, hopefully and sounds like, you are going to be the lucky one. I think that not only are you going to be "lucky" for you and you family but for others who are facing the stage IV type of ambiguity.

    All my best,

    Pam

    Thank you
    Pam for your kind words. I hope that I can be of some help to someone. People I work with know of my openness to talk about cancer and there have been times when someone they know has been dx with some sort of cancer and they approach me to talk about it. I feel I have been able to help them in some way. Sometimes I believe that I got cancer so I can be of help to others, then other times I feel I got a "bum deal". I tend to brace for the worst though so I can pleasantly surprised if I get a positive result.

    With cancer you never really know what is going to happen, everyone can respond very differently than others do to the same protocols. I've had it rather rough at times. It's nasty stuff that can save or prolong our lives. There have been other times it was more of an inconvenience to me. It certainly can wear on the mind after a long time. I think that's where I'm at lately.

    Being NED for 18 months is wonderful Pam and having an odd test result doesn't mean you're at stage IV. I hope that things work out and you stay NED. But you do know now that people can be stage IV and can live a pretty good life. If you saw me I doubt you'd know anything was wrong with me.

    be/stay well
    -phil
  • crazylady
    crazylady Member Posts: 543
    I can relate!
    Hi Phil,

    I truly understand how you feel. It will be 5 years next month since my dx. I was also 46 at the time. The longest I have been off chemo is 3 months. It always comes back or probably was never really gone. I have a permanent colostomy and have had surgery on each lung and done a lot of chemo. I have lost track of exactly what I've been on Last October I was hospitalized due to side effects from CPT11 and was forced to take a 3 month break. Scans in January were the worst they've ever been. I am currently on Xeloda and Avastin and due to have scans the middle of March. I seem to be running out of chemo options. Unfortunately, I have not been able to work for the last 3 years.

    I am extremely grateful that I have made it this far and plan to be around for a lot longer. I have 7 children, the youngest just turned 17 and will be a high school senior next year. It does matter to me that I'm only 51. If I was a lot older I could at least make some sense of this. I don't feel like I've truly begun to live yet! I am also really sick of being in treatment all the time. Cancer sucks, has altered my life and not for the better.

    It is not my intention to bring anyone down. This is my personal experience. I know that there are people who have had better experiences and some that have had much worse. I wish everyone the best!

    Take care,
    Jamie
  • taraHK
    taraHK Member Posts: 1,952
    Long haul
    @!^%[email protected] It's fine to be Ms. Pollyanna -- but I have been thro 4 surgeries and 4 rounds of chemo in the last 5 years! But, what's the alternative. And I don't just mean the grave. I mean what's the alternative for trying to keep a positive attitude and 'count blessings' (literally, at those dark 3am moments). I certainly understand what you are talking about, Phil. We hang in there together.....And scan time is not a good time. I just had scans which were all clear but even so through me into a tizzy and I am now doing a little Xanax therapy.....thank heavens for modern pharmaceuticals.....

    All the best,
    Tara
  • PhillieG
    PhillieG Member Posts: 4,866
    crazylady said:

    I can relate!
    Hi Phil,

    I truly understand how you feel. It will be 5 years next month since my dx. I was also 46 at the time. The longest I have been off chemo is 3 months. It always comes back or probably was never really gone. I have a permanent colostomy and have had surgery on each lung and done a lot of chemo. I have lost track of exactly what I've been on Last October I was hospitalized due to side effects from CPT11 and was forced to take a 3 month break. Scans in January were the worst they've ever been. I am currently on Xeloda and Avastin and due to have scans the middle of March. I seem to be running out of chemo options. Unfortunately, I have not been able to work for the last 3 years.

    I am extremely grateful that I have made it this far and plan to be around for a lot longer. I have 7 children, the youngest just turned 17 and will be a high school senior next year. It does matter to me that I'm only 51. If I was a lot older I could at least make some sense of this. I don't feel like I've truly begun to live yet! I am also really sick of being in treatment all the time. Cancer sucks, has altered my life and not for the better.

    It is not my intention to bring anyone down. This is my personal experience. I know that there are people who have had better experiences and some that have had much worse. I wish everyone the best!

    Take care,
    Jamie

    Similar situation CrazyLady (from a CrazyGuy)
    It was shocking to be only 46 with no history of cancer and really no symptoms of cancer either. I had one of those tumors that hugged the wall and didn't cause a blockage. Fortunately I avoided a colostomy, not much of the colon was affected. I guess it went right from there to the liver and lungs. That CPT11 is nasty stuff, I get severe cramping and bowel issues, mostly constipation. I am on a 2 month break from that but still on Erbitux. I am supposed to have a CT scan tomorrow but we are expecting 8 inches of snow in the NYC area so I am most likely going to have to reschedule that. I am very grateful that I'm not dead (I wanted to name this band I was in the "Grateful We're Not Dead" where one guy had triple bypass surgery, the other guy was 2 big macs away from a heart attack and me with the cancer but they had no sense of humor at all) but I feel lucky to make it this long. The worst part is my youngest turns 9 this month. I hope I can make it until he's out of high school. Cancer does suck and it gives us all a "new normal" that is usually not good.
    There are others who have it worse and others that have it better and still others that have no idea what lies ahead or can understand that being around for 5 years with it isn't always the greatest thing in the world.
    Thanks for your input Jamie, I wish you the best.
    -phil
  • PhillieG
    PhillieG Member Posts: 4,866
    taraHK said:

    Long haul
    @!^%[email protected] It's fine to be Ms. Pollyanna -- but I have been thro 4 surgeries and 4 rounds of chemo in the last 5 years! But, what's the alternative. And I don't just mean the grave. I mean what's the alternative for trying to keep a positive attitude and 'count blessings' (literally, at those dark 3am moments). I certainly understand what you are talking about, Phil. We hang in there together.....And scan time is not a good time. I just had scans which were all clear but even so through me into a tizzy and I am now doing a little Xanax therapy.....thank heavens for modern pharmaceuticals.....

    All the best,
    Tara

    Hi Tara
    I'm not sure what would be harder, never stopping treatment like my case or stopping and having it come back (3 times yet). I certainly feel that if I do become NED, it will get me in the end@!^%[email protected]!^%. True, we could roll up and wait to die but that's no fun at all. I agree, thank goodness for xanax and zoloft and my friend Herb who keeps that nasty Ralph away.
    Hang in there Tara and thanks for your response. You beat me in the longevity contest. That's great you've keep up the battle and are ahead of the game
    -phil
  • impactzone
    impactzone Member Posts: 539 Member
    So sorry and thanks for your
    So sorry and thanks for your comments. 3 years here with my 50th birthday last week. I keep playing whack a mole as well. 2 kids 14 and 12 and I teach at the high school with my 14 year old. They are the reason I keep fighting. I admire anyone who lasts and can stay fighting this long. As in previous discussions, fighting is the wrong word. That implies if I only eat more blueberries it might finish the fight. You struggles inspire others and perhaps the next great drug will come up soon and advances in surgery might happen as well. Thank you for your courage.
    Chip
  • PhillieG
    PhillieG Member Posts: 4,866

    So sorry and thanks for your
    So sorry and thanks for your comments. 3 years here with my 50th birthday last week. I keep playing whack a mole as well. 2 kids 14 and 12 and I teach at the high school with my 14 year old. They are the reason I keep fighting. I admire anyone who lasts and can stay fighting this long. As in previous discussions, fighting is the wrong word. That implies if I only eat more blueberries it might finish the fight. You struggles inspire others and perhaps the next great drug will come up soon and advances in surgery might happen as well. Thank you for your courage.
    Chip

    Riding the Wave of Technology
    Thanks for the comments Chip, I've read many of your posts and you are quite a inspirational guy. I like to draw a comparison to what many of us are going through and surfing. I've never surfed, but I often feel like I am on the crest of the wave (of technological breakthroughs) and just hoping that they keep coming up with new therapies before the wave crashes on me and I wipe out. I've be fortunate that both Avastin and Erbitux have come out and kept my on top of the wave.

    I'm not crazy about "fighting" either. I also don't care for "survivor". I'm "living with cancer". I didn't survive anything...but I DO love blueberries.

    I have to postpone my scan for a bit due to nasty weather in the NYC area. Did you coin the phrase "scanxitey"? Whoever did, it's brilliant!
    -p
  • Julie 44
    Julie 44 Member Posts: 476
    PhillieG said:

    Riding the Wave of Technology
    Thanks for the comments Chip, I've read many of your posts and you are quite a inspirational guy. I like to draw a comparison to what many of us are going through and surfing. I've never surfed, but I often feel like I am on the crest of the wave (of technological breakthroughs) and just hoping that they keep coming up with new therapies before the wave crashes on me and I wipe out. I've be fortunate that both Avastin and Erbitux have come out and kept my on top of the wave.

    I'm not crazy about "fighting" either. I also don't care for "survivor". I'm "living with cancer". I didn't survive anything...but I DO love blueberries.

    I have to postpone my scan for a bit due to nasty weather in the NYC area. Did you coin the phrase "scanxitey"? Whoever did, it's brilliant!
    -p

    not just you
    I guess we all feel way down and really pissed off that this is happening to us.. Right now I am sooooo tired of all of this treatment..I am 44 stage 3 and had a tumor removed now I am on my 8th treatment..I am sooo sick and tired of feeling crappy and I feel like I am on the biggest roller coaster ride of my life..Good days bad days,emontional and not emontional,sick not sick blah blah blah...Like you said we should be thankful but enough is enough...I just don't want to deal with this anymore either!!!!!
    I guess we don't have much of a choice seeing what other options we have but......I guess just know you are not alone and I feel for ALL of us going through this....It really sticks but this is what we are given to deal with I just wish I knew why???? Any clue why us????
    Thanks for letting me vent too I am trying not to get to depressed but it really is sooo hard how much more can I take???