permanent liver damage from chemo, irinotecan may lead to increased mortality after liver surgery UP

124

Comments

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900

    Again???
    It seems like every time I stay away from here for a few days, when I come back there's some brouhaha going on. We all need each other and I hope y'all learn to play nice :(

    Pete, I thank you for presenting information that cancer survivors can use to better their health and to make good treatment decisions for themselves. Personally, I appreciate most just these sorts of opinions and facts presented for here...the emotional support is wonderful, but gaining information is my top priority here.

    ~hugs~
    Janine

    thanks janine
    hi janine,

    sometimes they shoot the messenger. lucky i got a bullet proof vest.
    your kind words are healing the bite marks.

    i wish irinotecan was the harmless drug they present, you the liver deaths are not mentioned in the drug side effects anywhere on the net. fun about that. joking its really sad.

    hugs,
    pete
  • Kenny H.
    Kenny H. Member Posts: 502

    thanks janine
    hi janine,

    sometimes they shoot the messenger. lucky i got a bullet proof vest.
    your kind words are healing the bite marks.

    i wish irinotecan was the harmless drug they present, you the liver deaths are not mentioned in the drug side effects anywhere on the net. fun about that. joking its really sad.

    hugs,
    pete

    Thanks pete.
    Let us know if

    Thanks pete.
    Let us know if the Adoment helps.
  • PhillieG
    PhillieG Member Posts: 4,866
    One size does NOT fit all
    One person's cure is another person's poison.
    Cancer kills, that's a fact. All the rest of this stuff are studies and/or opinions. If cancer were that easy to beat there would be a cure. It's not the same for everyone as how to to beat it. I've been off/on irinotecan for the better part of 5 years in my 7+ year journey with cancer. I believe that it helped me but of course no one will ever know if something worked or not since if I didn't take it, maybe I'd be here anyway. I do know people who didn't do things the way I did in the order I did and they are no longer here. What exactly does that mean? I have no idea. I know what has worked for me to date and see no reason to break something that is not broken.

    This is like all of the other Hot Topics (God/religion/politics/cancer cures).
    All of us are never going to agree.
    Just like cancer, that's a fact!

    -phil
    Whatever floats your boat.
    I liked that there was a warning at the beginning of the post at least.
  • geotina
    geotina Member Posts: 2,111
    PhillieG said:

    One size does NOT fit all
    One person's cure is another person's poison.
    Cancer kills, that's a fact. All the rest of this stuff are studies and/or opinions. If cancer were that easy to beat there would be a cure. It's not the same for everyone as how to to beat it. I've been off/on irinotecan for the better part of 5 years in my 7+ year journey with cancer. I believe that it helped me but of course no one will ever know if something worked or not since if I didn't take it, maybe I'd be here anyway. I do know people who didn't do things the way I did in the order I did and they are no longer here. What exactly does that mean? I have no idea. I know what has worked for me to date and see no reason to break something that is not broken.

    This is like all of the other Hot Topics (God/religion/politics/cancer cures).
    All of us are never going to agree.
    Just like cancer, that's a fact!

    -phil
    Whatever floats your boat.
    I liked that there was a warning at the beginning of the post at least.

    Hi Phil:
    Glad to see you posting and checking in on us. The original post had no warning, it was changed midstream.

    Best wishes - Tina
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    PhillieG said:

    One size does NOT fit all
    One person's cure is another person's poison.
    Cancer kills, that's a fact. All the rest of this stuff are studies and/or opinions. If cancer were that easy to beat there would be a cure. It's not the same for everyone as how to to beat it. I've been off/on irinotecan for the better part of 5 years in my 7+ year journey with cancer. I believe that it helped me but of course no one will ever know if something worked or not since if I didn't take it, maybe I'd be here anyway. I do know people who didn't do things the way I did in the order I did and they are no longer here. What exactly does that mean? I have no idea. I know what has worked for me to date and see no reason to break something that is not broken.

    This is like all of the other Hot Topics (God/religion/politics/cancer cures).
    All of us are never going to agree.
    Just like cancer, that's a fact!

    -phil
    Whatever floats your boat.
    I liked that there was a warning at the beginning of the post at least.

    hi phil,
    hi phil,

    at lewast the warning is appreciated, but what about the message ?

    i am glad you and many go well with irinotecan,

    why this side effect ain't documented in your chemo doc

    well thats a question all users may want to ask.

    why you tough stage 4 don't know about this ? well, its your issue ?

    it effects me in a general way, because i wll make informed consent and our medical systems have room to improve.

    awareness means we can take evasive action.

    i'll bet at least a few onc don't know about this, why don't they tell you guys otherwise ?

    as really informed medical consumers we actively push the quality of our care up.

    the real benefit of this thread has been lost in discussion.

    knowledge and science and saves lives.

    we take our treatments, do we want to know the side effects ?

    thanks for replying, "why is this a hot topic ?" because you stage 4 are not informed.

    maybe peoples anger or frustration should be directed towards the cancer fight, maybe thye can ask onc why ? or gee how is my liver ? can i take SAMe like folfoxers, will this help me ?

    pete
  • PhillieG
    PhillieG Member Posts: 4,866

    hi phil,
    hi phil,

    at lewast the warning is appreciated, but what about the message ?

    i am glad you and many go well with irinotecan,

    why this side effect ain't documented in your chemo doc

    well thats a question all users may want to ask.

    why you tough stage 4 don't know about this ? well, its your issue ?

    it effects me in a general way, because i wll make informed consent and our medical systems have room to improve.

    awareness means we can take evasive action.

    i'll bet at least a few onc don't know about this, why don't they tell you guys otherwise ?

    as really informed medical consumers we actively push the quality of our care up.

    the real benefit of this thread has been lost in discussion.

    knowledge and science and saves lives.

    we take our treatments, do we want to know the side effects ?

    thanks for replying, "why is this a hot topic ?" because you stage 4 are not informed.

    maybe peoples anger or frustration should be directed towards the cancer fight, maybe thye can ask onc why ? or gee how is my liver ? can i take SAMe like folfoxers, will this help me ?

    pete

    Fair Warning?
    Hmmm, I understand that the warning was an afterthought. Might have been a good idea to put it there before the $hit hit the fan.

    Too much ibuprofen can cause liver damage for crying out loud, I'm really not that worried about the chemo. I wanted aggressive treatment and I'm happy as hell that I've gotten it. I was aware of what I was getting into from the get-go. I was also aware that doing nothing or other treatments was not for me.

    As far as your post goes, I read some of it but I didn't care to finish it. I saw no benefit for me in it. I'm comfortable with my choices. I am not sure how helpful it was to others either. I am having a hard time making sense of this post I am responding to, lots of typos...
    I don't even know how to respond to ""why is this a hot topic ?" because you stage 4 are not informed" I'm not sure I know what you're trying to say to me.

    I kind of equate your post with when I see someone post that the are "finally NED!!!"
    Do you have any idea how many times in the past few years I've read that only to read 3 months later that "it's back..I'm so bummed". I could post that they shouldn't celebrate too soon but I congratulate them or I say nothing. The same goes for the 12 round/cycle/dose of chemo stuff. "Only 3 more until I'm done with chemo!!!" I heard that myself once... 243 chemo's ago. I don't tell them "well don't bank on it". So I feel that warning people of potential risks and making something out to be the boogey-man are different issues.

    You ask "why is this a hot topic?". You're joking, right? There are hundreds of ways to beat cancer or die trying. People don't agree on treatments just like they debate God's existence of if Glen Beck is moron...
    ('not sure' and 'positively' respectively)
    -phil
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    PhillieG said:

    Fair Warning?
    Hmmm, I understand that the warning was an afterthought. Might have been a good idea to put it there before the $hit hit the fan.

    Too much ibuprofen can cause liver damage for crying out loud, I'm really not that worried about the chemo. I wanted aggressive treatment and I'm happy as hell that I've gotten it. I was aware of what I was getting into from the get-go. I was also aware that doing nothing or other treatments was not for me.

    As far as your post goes, I read some of it but I didn't care to finish it. I saw no benefit for me in it. I'm comfortable with my choices. I am not sure how helpful it was to others either. I am having a hard time making sense of this post I am responding to, lots of typos...
    I don't even know how to respond to ""why is this a hot topic ?" because you stage 4 are not informed" I'm not sure I know what you're trying to say to me.

    I kind of equate your post with when I see someone post that the are "finally NED!!!"
    Do you have any idea how many times in the past few years I've read that only to read 3 months later that "it's back..I'm so bummed". I could post that they shouldn't celebrate too soon but I congratulate them or I say nothing. The same goes for the 12 round/cycle/dose of chemo stuff. "Only 3 more until I'm done with chemo!!!" I heard that myself once... 243 chemo's ago. I don't tell them "well don't bank on it". So I feel that warning people of potential risks and making something out to be the boogey-man are different issues.

    You ask "why is this a hot topic?". You're joking, right? There are hundreds of ways to beat cancer or die trying. People don't agree on treatments just like they debate God's existence of if Glen Beck is moron...
    ('not sure' and 'positively' respectively)
    -phil

    Hey, Phil!
    Phil,

    We differ somewhat in some of our beliefs, but I do respect and like you so much. You are so sensible, and you're such an example for others with the quiet way you've gone about continuing to live with cancer for so long.

    Glad you posted again!

    *hugs*
    Gail
  • PhillieG
    PhillieG Member Posts: 4,866
    tootsie1 said:

    Hey, Phil!
    Phil,

    We differ somewhat in some of our beliefs, but I do respect and like you so much. You are so sensible, and you're such an example for others with the quiet way you've gone about continuing to live with cancer for so long.

    Glad you posted again!

    *hugs*
    Gail

    Hi Gail
    Sorry about that crack about Glen Beck
    ;-)

    Thank you Gail, I like and respect you too. We all don't agree on everything but that's life!
    -p
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    PhillieG said:

    Hi Gail
    Sorry about that crack about Glen Beck
    ;-)

    Thank you Gail, I like and respect you too. We all don't agree on everything but that's life!
    -p

    No prob!
    It's okay about Glen Beck. He's kind of a tool. *L*

    *Hugs*
    Gail
  • RickMurtagh
    RickMurtagh Member Posts: 587 Member
    Holy crap
    Holy crap! This is the post! I just skimmed it to get the gist of it because it was so long, as well as many of the responses. My tiny little brain can not read to many words in a row (unless it is a book series, one of the classics or all the Zit's comics in my bathroom). Sorry Pete, nothing against you, but when posts get too long my brain does do something of a shutdown and I end up missing stuff. Wow, guys and gals, I hope we are over it all. This is just one post after all and well, life goes on. I have this sudden worry that something I am saying might upset someone, so I will make it brief.

    I love coming here to learn more about cancer, see how everyone is doing an sometimes even venting.

    Have a great day!
  • John23
    John23 Member Posts: 2,122

    Holy crap
    Holy crap! This is the post! I just skimmed it to get the gist of it because it was so long, as well as many of the responses. My tiny little brain can not read to many words in a row (unless it is a book series, one of the classics or all the Zit's comics in my bathroom). Sorry Pete, nothing against you, but when posts get too long my brain does do something of a shutdown and I end up missing stuff. Wow, guys and gals, I hope we are over it all. This is just one post after all and well, life goes on. I have this sudden worry that something I am saying might upset someone, so I will make it brief.

    I love coming here to learn more about cancer, see how everyone is doing an sometimes even venting.

    Have a great day!

    Rick -
    Hey....

    Re:
    "I have this sudden worry that something I am saying might upset someone, so I will make it brief."

    No, no, and no. We're here to say what we want to say!

    The one thing I was afraid to see happen here, was the
    possibility that someone is going to take a position as
    you lightheartedly suggested!

    We never want to cause discomfort to anyone, but hell,
    it's impossible to satisfy everyone! (ask my wife?)

    Seriously, we talk about whatever we talk about, and
    we let the reader sort it out.

    There's really no such thing as a "newbie" in a web forum.
    If one knows how to join a forum, they certainly know
    well what goes on in a forum. You "roll with the punches",
    and disregard what you feel should be disregarded.

    A diagnosis of Cancer sets off a series of emotions, and
    anger is a major one of those! I excuse a friend for being
    a jerk, knowing that his diagnosis is new to him, and what
    he's going through. (BTDT)

    Say what's to be said. If it's really offending, Greta
    will take care of it.

    She knows people that make cement boots, and offending
    people take a "ride" in the middle of the night!

    Stay well and sane, better days a'comin'!

    John
  • morrisshoey
    morrisshoey Member Posts: 6
    John23 said:

    Rick -
    Hey....

    Re:
    "I have this sudden worry that something I am saying might upset someone, so I will make it brief."

    No, no, and no. We're here to say what we want to say!

    The one thing I was afraid to see happen here, was the
    possibility that someone is going to take a position as
    you lightheartedly suggested!

    We never want to cause discomfort to anyone, but hell,
    it's impossible to satisfy everyone! (ask my wife?)

    Seriously, we talk about whatever we talk about, and
    we let the reader sort it out.

    There's really no such thing as a "newbie" in a web forum.
    If one knows how to join a forum, they certainly know
    well what goes on in a forum. You "roll with the punches",
    and disregard what you feel should be disregarded.

    A diagnosis of Cancer sets off a series of emotions, and
    anger is a major one of those! I excuse a friend for being
    a jerk, knowing that his diagnosis is new to him, and what
    he's going through. (BTDT)

    Say what's to be said. If it's really offending, Greta
    will take care of it.

    She knows people that make cement boots, and offending
    people take a "ride" in the middle of the night!

    Stay well and sane, better days a'comin'!

    John

    I won't comment on anyone
    I won't comment on anyone elses post. I think we all need something different at different times. Pete, your post was absolutely perfectly timed for me as my husband gets ready for liver surgery. It was information I had not heard before and is an area I plan to research further. I would not have known to do this if I hadn't read your post. For me,(I know I am looking at it differently as a support person) information and knowledge makes me feel like I have some power over this beast.
  • tanstaafl
    tanstaafl Member Posts: 1,303 Member
    newbies need candid information
    Perhaps Pete needed some polish on his introduction, but I for one am glad to see candid discussions on specific chemo.

    I am tired of going to see oncologists who try to cram the maximum (price) chemo down our throats, effectively ignore harsh sequalae like Pete brings up, and ignore less damaging technical options with much better looking test results.

    One of the most sobering things is to be slapped with the reality that you've been misled about side effects and benefits. Best to get it up front, while you still have more choices. Even this past month, we've spent a lot of time being led down primrose paths of "standard medicine" to less promising treatments that promised more misery, and much more likely failure.

    We need our eyes taped wide open. We have to help each other see the pitfalls and the opportunities.
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    tanstaafl said:

    newbies need candid information
    Perhaps Pete needed some polish on his introduction, but I for one am glad to see candid discussions on specific chemo.

    I am tired of going to see oncologists who try to cram the maximum (price) chemo down our throats, effectively ignore harsh sequalae like Pete brings up, and ignore less damaging technical options with much better looking test results.

    One of the most sobering things is to be slapped with the reality that you've been misled about side effects and benefits. Best to get it up front, while you still have more choices. Even this past month, we've spent a lot of time being led down primrose paths of "standard medicine" to less promising treatments that promised more misery, and much more likely failure.

    We need our eyes taped wide open. We have to help each other see the pitfalls and the opportunities.

    english was my worst subject at school
    luckily my cut and paste skills were developed during my computer science degree.
    i appreciate your comments.

    so well said. i hope you get to the bottom, ask your onc about adomet ?
    it would be interesting their answer.

    hugs,
    pete
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900

    I won't comment on anyone
    I won't comment on anyone elses post. I think we all need something different at different times. Pete, your post was absolutely perfectly timed for me as my husband gets ready for liver surgery. It was information I had not heard before and is an area I plan to research further. I would not have known to do this if I hadn't read your post. For me,(I know I am looking at it differently as a support person) information and knowledge makes me feel like I have some power over this beast.

    you have got power over the beast
    i hope your husbands op goes well.
    pete
  • John23
    John23 Member Posts: 2,122

    english was my worst subject at school
    luckily my cut and paste skills were developed during my computer science degree.
    i appreciate your comments.

    so well said. i hope you get to the bottom, ask your onc about adomet ?
    it would be interesting their answer.

    hugs,
    pete

    Hey Pete -

    Re:
    "english was my worst subject at school"

    Mine too, but at least you have a good excuse!

    (Don't worry about it, for $%*&^% out loud. You're doing just fine!)

    My second language goes like this:
    Ifelay isway ootay ortshay otay arecay aboutway operpray anguagelay.


    John
  • Buckwirth
    Buckwirth Member Posts: 1,258
    John23 said:

    Hey Pete -

    Re:
    "english was my worst subject at school"

    Mine too, but at least you have a good excuse!

    (Don't worry about it, for $%*&^% out loud. You're doing just fine!)

    My second language goes like this:
    Ifelay isway ootay ortshay otay arecay aboutway operpray anguagelay.


    John

    Но если ваш
    Но если ваш язык не является правильным, не следует ожидать, чтобы быть понятым.
  • plh4gail
    plh4gail Member Posts: 1,238
    John23 said:

    Rick -
    Hey....

    Re:
    "I have this sudden worry that something I am saying might upset someone, so I will make it brief."

    No, no, and no. We're here to say what we want to say!

    The one thing I was afraid to see happen here, was the
    possibility that someone is going to take a position as
    you lightheartedly suggested!

    We never want to cause discomfort to anyone, but hell,
    it's impossible to satisfy everyone! (ask my wife?)

    Seriously, we talk about whatever we talk about, and
    we let the reader sort it out.

    There's really no such thing as a "newbie" in a web forum.
    If one knows how to join a forum, they certainly know
    well what goes on in a forum. You "roll with the punches",
    and disregard what you feel should be disregarded.

    A diagnosis of Cancer sets off a series of emotions, and
    anger is a major one of those! I excuse a friend for being
    a jerk, knowing that his diagnosis is new to him, and what
    he's going through. (BTDT)

    Say what's to be said. If it's really offending, Greta
    will take care of it.

    She knows people that make cement boots, and offending
    people take a "ride" in the middle of the night!

    Stay well and sane, better days a'comin'!

    John

    John?
    Hey John...what is BTDT? I think I amy have it.

    Gail
  • plh4gail
    plh4gail Member Posts: 1,238
    Buckwirth said:

    Но если ваш
    Но если ваш язык не является правильным, не следует ожидать, чтобы быть понятым.

    Now you boys are starting to
    Now you boys are starting to play nice . lol. Although I have no idea what Blake said :)

    Love and hugs always dear brothers, Gail
  • John23
    John23 Member Posts: 2,122
    plh4gail said:

    Now you boys are starting to
    Now you boys are starting to play nice . lol. Although I have no idea what Blake said :)

    Love and hugs always dear brothers, Gail

    Gail -
    "BTDT" = Been There; Done That

    Here, this might come in handy during dry spells: Acronyms

    If you copy and paste those funny letters into Google Translate
    It will let you read it, and translate what you type back into it.

    Посмотрите, как легко это?


    Enjoy good health !

    John