One question with 2 alternatives, and of course my opinion, which is just like a butt, normally stin
In my opinion since this is what I see to be a link to somewhere in cyberland that is causing a little stir in the ranks. Would a better route be to make the topic maybe.."Concerning the toxicity of chemo to the liver" as the topic then post the "link" to the information stating what parts to look for, and this gives the member especially someone new that has no idea what is up or down the chance to not look at this and freak...instead its like a box inside a box. you can open one but if you open the second then your on your own.
Links to scripts, posts, or other medical, Naturopathic, or whatever seems to be an answer for some of the open posts that for me some are disheartening...I am one to get a mindset and if the sky is falling I have already made up my mind that no matter if the whole sky falls it won't hit me, because I don't will it to do so. I have tried to get my emotional state to where I focus on nothing but good things. There was a post not to long ago that spoke of % and time and different stages...It was not a good day after that, and I have been here a while, but no matter who you are or what we try and do we HAVE to get along in here. Some of us have no one else, this is it, and if we let those people down then we are doomed to fail.....
I don't give a damn about hearing percentages or stages or lima bean sprouts growing out my anal orifice (which of one I do not have) or natural anything, my choice is traditional run of the mill old down home chemo..only because thats where my mindset is and Im not going to change. I am also not going to try and downtalk any other type of treatment because what works for you is your personal way of fighting and I like everyone else fight their own battles the way they see fit. Its my game, win or lose.if it kills me so what, if you choke to death on a bean sprout your just as dead......what we need to try and do is to consider our audience, our new audience and also consider how most all of us were when we first arrived. Then consider the emotional trauma that one got when we first heard that we had cancer , oh hell im dead in a week, nope, don't happen that way, but to the untrained patient thats enough to send them to places that they never need to travel, the road to fear and hopelessness....and when those brand new leave they are lost forever.
Everyone has their idea what will save them or maybe keep them alive or make them live longer than someone else....let me ask all of you this, how will you ever know that it was to never come back in the first place or come back with a vengence no matter what type of treatment or none that you did or did not do. If the Drs and scientists have no cure then how can you have the perfect remedy.....you can't, none of us can, but we keep hollering at each other that my penis is larger than yours or my eyebrows are prettier than yours, or my butts got a nicer curve than yours, rather than, I certainly hope that no matter what type of treatment you do, I sincerely wish the best in its curative effect
I have my thoughts on all of it and normally an opinion as well, I will work through anything that bothers me or makes me start thinking to much...That when I have trouble, but just try and consider that if we can link some of the more in depth stuff so that the untrained eye has to work to see then it might serve as a two fold, one to keep in depth more to the point medical info where untrained eyes can't read it unless they care to travel, and it also lets us see that there may be things that involve us directly and those can be the ones to go to the links to find the down low stuff that intrigues or expands the knowledge.......or, we can do nothing at all...........buzz
Comments
-
thanks buzz
for all that you say and for all of who you are.i am not good with words but i know how i feel inside.with my recurrence i tried the oxy and since i had 10 treatments in 2009 (preventative or mop up whatever you want to call it)i have permenant damage from that particular cocktail.so since we dont want further permanent damage i agreed to go the other route and use irinotecan.for those who dont know i have 2 spots on my lung that need to be gone before my liver surgery which my liver has 3 spots.for someone to put some kind of statistics that irinotecan post operative will result in death is not very hopeful for those of us having a hard time coping with this.enough said once again thanks my friend for your words and support..love ya and give wife hugs for me.....Godbless...johnnybegood0 -
wise wordsjohnnybegood said:thanks buzz
for all that you say and for all of who you are.i am not good with words but i know how i feel inside.with my recurrence i tried the oxy and since i had 10 treatments in 2009 (preventative or mop up whatever you want to call it)i have permenant damage from that particular cocktail.so since we dont want further permanent damage i agreed to go the other route and use irinotecan.for those who dont know i have 2 spots on my lung that need to be gone before my liver surgery which my liver has 3 spots.for someone to put some kind of statistics that irinotecan post operative will result in death is not very hopeful for those of us having a hard time coping with this.enough said once again thanks my friend for your words and support..love ya and give wife hugs for me.....Godbless...johnnybegood
Once again Buzz your words are thoughtful and wise. I too was a little upset by the topic of iriontecan. I have been on iriontecan and vectibix for a year now. Before that I did folfox for 4 months but had to stop due to severe side effects from the oxi. I have had no surgeries at all as I've been deemed inoperable. But, always in the back of my mind I hope that the chemo will maybe make surgery a possibility some day,(if I can stay alive and tolerate the chemo long enough). Then to read that about iriontecan was scarey. It was like whats the use, damned if I do and damned if I don't. Oh well such is life.
I'm mostly one of those lurkers people talk about. I don't post much but do read alot. To be honest the reason I don't post often is I'm not looking for a cheering section. When I do post it's usually because things aren't going so well and I know the people here understand the fear and angst that causes. I know that sometimes I sound as if I'm giving up and people will say never give up, don't quit. I'm not giving up and I feel like I've broken some rule somewhere that says to never have negative thoughts. I'm stage IV with large mets to liver and a mass in pelvic region. Chances are I will never be operable but it is what it is.
I guess what I'm trying to say is some days I just want a little sympathy and acknowledgement of my rotten situation not someone telling me to never give up. If that ever happens it will be my decision and no amount of cheering and rah rahs will change my mind.
Deb0 -
Buzz
Seeing as I don't happen to have a penis (THANK YOU GOD!!!) you win on being bigger.
Winter Marie0 -
Just wanted to
I just want to add a bit of humor in here, thought now would be as good a time as any. I'm still laughing over your penis reference, a good hearty laugh, thank you Buzz, just when I really needed one!!
Winter Marie0 -
.Buckwirth said:Thanks Buzz
I seem to remember the other thread you speak of.
I do believe the author saw the error of his ways and deleted it. Wisdom comes to us in small bits.
Your a good friend Buzz, and a true voice for the board.
Blake
.0 -
Deb, I come here for sympathy as well, for I know ..damama24 said:wise words
Once again Buzz your words are thoughtful and wise. I too was a little upset by the topic of iriontecan. I have been on iriontecan and vectibix for a year now. Before that I did folfox for 4 months but had to stop due to severe side effects from the oxi. I have had no surgeries at all as I've been deemed inoperable. But, always in the back of my mind I hope that the chemo will maybe make surgery a possibility some day,(if I can stay alive and tolerate the chemo long enough). Then to read that about iriontecan was scarey. It was like whats the use, damned if I do and damned if I don't. Oh well such is life.
I'm mostly one of those lurkers people talk about. I don't post much but do read alot. To be honest the reason I don't post often is I'm not looking for a cheering section. When I do post it's usually because things aren't going so well and I know the people here understand the fear and angst that causes. I know that sometimes I sound as if I'm giving up and people will say never give up, don't quit. I'm not giving up and I feel like I've broken some rule somewhere that says to never have negative thoughts. I'm stage IV with large mets to liver and a mass in pelvic region. Chances are I will never be operable but it is what it is.
I guess what I'm trying to say is some days I just want a little sympathy and acknowledgement of my rotten situation not someone telling me to never give up. If that ever happens it will be my decision and no amount of cheering and rah rahs will change my mind.
Deb
as soon as I post up within minutes there will be a friend that comes to my rescue, and yes, sympathy and acknowledgement is what we all want because of what we've been dealt, this is the place for that because we all know "exactly" how the survivor feels, and we feel it with them. Sympathy is always there, but because we are mostly all survivors, we normally don't think about expressing feelings of sadness to each other but to keep the life we do enjoy, whatever type that may be as upbeat and joyful as possible, Lord knows we have enough down time. This is a place to vent, cry, yell, gripe, this is the place..and do it as much as possible, it purges the soul, and then know in your heart that each of us want the same, and to all be in the same race, sometimes we forget some of the runners run a slightly different course, and we must be sure to not only catch that difference, but to be sure and accommodate whats needed. Thanks for reminding me that its not all about being a cheering section, and yes, I like my times when a good hug or someone tell me" Im really sorry that you go through what you do" would do so much more for me than, smile its easier than frowning. again thank you for thumping me in the head, I need it every once in a while......and Deb, never feel as if my heart felt sympathy doesn't exude for each of us here, as we all do, we know what we go through not just physically but mentally as well, and sometimes we forget that we are of all reaches of this world, with all different needs, and each looking for their own softener. May Love, Hope and Calm find a place in your heart........buzz0 -
how can you have the perfect remedy
hi buzz,
sorry to ame you have come up with this post
alas bag just burst. yuk goto go.....
the newbies will then likely miss the message.
i see the value, many other backed it up.
some don't
what more important someones life or feelings ?
irinotecan kills, this study is mentioned in any side effect info.
is this a coverup. surely these facts are crucial to informed consent.
hugs,
pete0 -
Don't shoot the messengerpete43lost_at_sea said:how can you have the perfect remedy
hi buzz,
sorry to ame you have come up with this post
alas bag just burst. yuk goto go.....
the newbies will then likely miss the message.
i see the value, many other backed it up.
some don't
what more important someones life or feelings ?
irinotecan kills, this study is mentioned in any side effect info.
is this a coverup. surely these facts are crucial to informed consent.
hugs,
pete
Pete, I feel so grateful that you find good information and post it here for us who are affected and have a need-to-know...hugs are wonderful too, but I do need to still be breathing to enjoy those hugs.
Thanks again,
Janine0 -
SensitivityBuzzard said:Deb, I come here for sympathy as well, for I know ..
as soon as I post up within minutes there will be a friend that comes to my rescue, and yes, sympathy and acknowledgement is what we all want because of what we've been dealt, this is the place for that because we all know "exactly" how the survivor feels, and we feel it with them. Sympathy is always there, but because we are mostly all survivors, we normally don't think about expressing feelings of sadness to each other but to keep the life we do enjoy, whatever type that may be as upbeat and joyful as possible, Lord knows we have enough down time. This is a place to vent, cry, yell, gripe, this is the place..and do it as much as possible, it purges the soul, and then know in your heart that each of us want the same, and to all be in the same race, sometimes we forget some of the runners run a slightly different course, and we must be sure to not only catch that difference, but to be sure and accommodate whats needed. Thanks for reminding me that its not all about being a cheering section, and yes, I like my times when a good hug or someone tell me" Im really sorry that you go through what you do" would do so much more for me than, smile its easier than frowning. again thank you for thumping me in the head, I need it every once in a while......and Deb, never feel as if my heart felt sympathy doesn't exude for each of us here, as we all do, we know what we go through not just physically but mentally as well, and sometimes we forget that we are of all reaches of this world, with all different needs, and each looking for their own softener. May Love, Hope and Calm find a place in your heart........buzz
Part of having cancer includes the psychological and emotional
changes we manage to go through, whether we like to or not.
"After you are diagnosed with cancer, you may feel shock,
disbelief, fear, anxiety, guilt, sadness, grief, depression, and anger.
Each person may have some or all of these feelings, and
each will handle them in a different way. "
(From: The emotional impact of a cancer diagnosis)
There's been plenty of those emotions right here in River Valley lately.
It's to be expected of course, since it's very natural to react in that
manner after a cancer diagnosis!
But should we demand that no-one sets off an emotion that
we are trying to avoid experiencing? There are so many changes
to each of us, emotionally, that happen in the blink of an eye,
how can we stifle all the things that can set any one of those off?
We can't. And stifling information can do no good at all, for anyone.
Two posts on this thread caught my brain:
"i tried the oxy and since i had 10 treatments in 2009
(preventative or mop up whatever you want to call it) i have
permenant damage from that particular cocktail. so since we dont
want further permanent damage i agreed to go the other route and
use irinotecan"
and:
"I have been on iriontecan and vectibix for a year now. Before
that I did folfox for 4 months but had to stop due to severe side
effects from the oxi."
If those people had known in advance of the "permanent damage",
and/or the "severe side effects" of the drugs they were being
prescribed, wouldn't they have asked for something else?
So we have one person with "permanent damage" and another
that's suffered needlessly, both having wasted time with a drug they
could have chosen not to take, had they known in advance, of the
side effects involved.
I started to read at this web site's forum back in 2006, because
I could read about the perils and the good, of chemo and radiation.
That is how any individual can make a choice that will do more
good than bad; you do it by being educated with what you are
about to do, and by being aware of the pitfalls. How else can
you survive?
Over the years here, I have watched as so much hope fell apart
for one after another, always wondering when it's going to be my turn.
My day will come soon enough; no-one lives forever. As our friend
Phil once said: "I won't die of cancer if I die of something else first".
Maybe that's the answer to cancer (?)
If anyone feels depressed reading anything on this board that
has been posted for it's information value, they oughta' realize that
that same information just might save another friend's life.
What's more important, "feelings", or someone else's life?
Everyone with a diagnosis of cancer that is reading at this forum
now, has a right to get as much information they can, to be able
to make the best decision for -their- battle against cancer.
It doesn't matter if it's chemo, radiation, TCM or peach mash,
no-one can predict what might help with an individual's personal
battle. Tests and studies mean little to someone that would prefer
not to do chemo, or an alternative. What is important to each of
them, is knowing what is going to harm them.
What is even more important, is knowing what might actually
kill them.
And when that information breaks, it should be posted in the most
conspicuous manner possible.
I don't like to see hopeful people taking a turn for the worse,
or ending up having a permanent disability for their remaining
time, especallly if their cancer remains active.
I care about life; about helping someone else stay alive, and
the way to do that, is to provide as much information as possible,
so that educated choices can be made.
"Where there is no vision, the People perish"
My two centavos.
Best hopes for better health to ya'll!
John0 -
Pete:pete43lost_at_sea said:how can you have the perfect remedy
hi buzz,
sorry to ame you have come up with this post
alas bag just burst. yuk goto go.....
the newbies will then likely miss the message.
i see the value, many other backed it up.
some don't
what more important someones life or feelings ?
irinotecan kills, this study is mentioned in any side effect info.
is this a coverup. surely these facts are crucial to informed consent.
hugs,
pete
Cancer also kills. Those with STAGE IV know this and what they are up against. They also know the side effects of the drugs they take. Some may chose to let the cancer take over and kill them, others chose to do whatever it takes to live.
Many agreed with your revised post and did not see the title to the original post, i.e., DEATH IS AN OPTION.
Enough already you have made your point.
Sorry Buzz that your post is getting hyjacked -
Tina0 -
I never said I had a perfect remedy, no one does.......pete43lost_at_sea said:how can you have the perfect remedy
hi buzz,
sorry to ame you have come up with this post
alas bag just burst. yuk goto go.....
the newbies will then likely miss the message.
i see the value, many other backed it up.
some don't
what more important someones life or feelings ?
irinotecan kills, this study is mentioned in any side effect info.
is this a coverup. surely these facts are crucial to informed consent.
hugs,
pete
and this isn't personnel to you or anyone else. in my last sentence it says or we can do nothing. I am here to protect those that are vulnerable. and until they become learned about different aspects of this disease and that a dx doesn't have to end up tragically as most newbies think it does, then can we not have a little courtesy towards our fellow survivors ...I understand that all content medicinal or naturopathic can be great and maybe this is bad for you or that will cause you to grow a third eye, but for the newbies that are scared chitless to begin with, do we have to throw out things that they know nothing about at their feet. Im not saying do not post them, Im just asking to put a link on the post so then they have a choice to open or not. In most cases a link is unnecessary, but when it comes to death, or percentages, then yes in my opinion I think "links" should be used. Its not my site, and this is only my opinion,
Coverup ? for what...the newbies will get this message if they want it through the link provided if they care to view it.
I see the value myself of this information, I also see the value of ensuring that a common courtesy to others new at this should try and be worked out....and on the other hand....if there are no feelings, then what good is life.............
Pete, you are a great man, a great father and husband, this is not about you and I, I am simply trying to entertain another way to pass info along that newbies may not be ready to try and digest just yet....thats all....I give, Im done with this thread and all it has to do with..I am continuing on with the regular scheduled program....with you in survival, buzz0 -
I like this.John23 said:Sensitivity
Part of having cancer includes the psychological and emotional
changes we manage to go through, whether we like to or not.
"After you are diagnosed with cancer, you may feel shock,
disbelief, fear, anxiety, guilt, sadness, grief, depression, and anger.
Each person may have some or all of these feelings, and
each will handle them in a different way. "
(From: The emotional impact of a cancer diagnosis)
There's been plenty of those emotions right here in River Valley lately.
It's to be expected of course, since it's very natural to react in that
manner after a cancer diagnosis!
But should we demand that no-one sets off an emotion that
we are trying to avoid experiencing? There are so many changes
to each of us, emotionally, that happen in the blink of an eye,
how can we stifle all the things that can set any one of those off?
We can't. And stifling information can do no good at all, for anyone.
Two posts on this thread caught my brain:
"i tried the oxy and since i had 10 treatments in 2009
(preventative or mop up whatever you want to call it) i have
permenant damage from that particular cocktail. so since we dont
want further permanent damage i agreed to go the other route and
use irinotecan"
and:
"I have been on iriontecan and vectibix for a year now. Before
that I did folfox for 4 months but had to stop due to severe side
effects from the oxi."
If those people had known in advance of the "permanent damage",
and/or the "severe side effects" of the drugs they were being
prescribed, wouldn't they have asked for something else?
So we have one person with "permanent damage" and another
that's suffered needlessly, both having wasted time with a drug they
could have chosen not to take, had they known in advance, of the
side effects involved.
I started to read at this web site's forum back in 2006, because
I could read about the perils and the good, of chemo and radiation.
That is how any individual can make a choice that will do more
good than bad; you do it by being educated with what you are
about to do, and by being aware of the pitfalls. How else can
you survive?
Over the years here, I have watched as so much hope fell apart
for one after another, always wondering when it's going to be my turn.
My day will come soon enough; no-one lives forever. As our friend
Phil once said: "I won't die of cancer if I die of something else first".
Maybe that's the answer to cancer (?)
If anyone feels depressed reading anything on this board that
has been posted for it's information value, they oughta' realize that
that same information just might save another friend's life.
What's more important, "feelings", or someone else's life?
Everyone with a diagnosis of cancer that is reading at this forum
now, has a right to get as much information they can, to be able
to make the best decision for -their- battle against cancer.
It doesn't matter if it's chemo, radiation, TCM or peach mash,
no-one can predict what might help with an individual's personal
battle. Tests and studies mean little to someone that would prefer
not to do chemo, or an alternative. What is important to each of
them, is knowing what is going to harm them.
What is even more important, is knowing what might actually
kill them.
And when that information breaks, it should be posted in the most
conspicuous manner possible.
I don't like to see hopeful people taking a turn for the worse,
or ending up having a permanent disability for their remaining
time, especallly if their cancer remains active.
I care about life; about helping someone else stay alive, and
the way to do that, is to provide as much information as possible,
so that educated choices can be made.
"Where there is no vision, the People perish"
My two centavos.
Best hopes for better health to ya'll!
John
Love and hugs,
I like this.
Love and hugs, Gail0 -
*The above postBuckwirth said:Thanks Buzz
I seem to remember the other thread you speak of.
I do believe the author saw the error of his ways and deleted it. Wisdom comes to us in small bits.
Your a good friend Buzz, and a true voice for the board.
Blake
Is entirely in reference to the author and the author's actions. Any similarity to others is entirely coincidental and unintentional.
(note added by request - editing of original was not an option)0 -
i'll try it your wayBuzzard said:I never said I had a perfect remedy, no one does.......
and this isn't personnel to you or anyone else. in my last sentence it says or we can do nothing. I am here to protect those that are vulnerable. and until they become learned about different aspects of this disease and that a dx doesn't have to end up tragically as most newbies think it does, then can we not have a little courtesy towards our fellow survivors ...I understand that all content medicinal or naturopathic can be great and maybe this is bad for you or that will cause you to grow a third eye, but for the newbies that are scared chitless to begin with, do we have to throw out things that they know nothing about at their feet. Im not saying do not post them, Im just asking to put a link on the post so then they have a choice to open or not. In most cases a link is unnecessary, but when it comes to death, or percentages, then yes in my opinion I think "links" should be used. Its not my site, and this is only my opinion,
Coverup ? for what...the newbies will get this message if they want it through the link provided if they care to view it.
I see the value myself of this information, I also see the value of ensuring that a common courtesy to others new at this should try and be worked out....and on the other hand....if there are no feelings, then what good is life.............
Pete, you are a great man, a great father and husband, this is not about you and I, I am simply trying to entertain another way to pass info along that newbies may not be ready to try and digest just yet....thats all....I give, Im done with this thread and all it has to do with..I am continuing on with the regular scheduled program....with you in survival, buzz
buzz,
i'll try it your way
no worries and have a great day
i'll pm you about the coverup
hugs,
pete0
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