life expectancy
I asked a simple question , just curious, what are their stats on life expectancy for stage 4B endometrial cancer,
she said , more than 2 years 10 % 5 years 0% , no one lived past 5 years at u of m,
very disapointing,
so the question about getting blood tests a little more often than every 3 months was answered
is seems that it is not important if the cancer will guaranteed take my life,
have not found any one with stage 4b endometrial cancer that have lived more than 5 years, yet,
so off to sell off all the books I was going to read eventually some time, and give away all the clothes I was going to try to fit into when I eventyally lose weight, eventually is probably not going to happen
also getting on that living will my first doctor kept shoving in front of my face to fill out.
cathy
Comments
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Statsunknown said:This comment has been removed by the Moderator
Cathy...note the above! I also looked at the web...saw the stats and it's the last time I bothered. Stats are just that and I don't intend to be one!! Talking with a surgeon recently who's wife had the same rare aggressive/invasive nusiance as I have...he researched and could find very little so where do these stats come from?? His wife is fit and well after many years. I am two years, no scan change and intend to stay that way.
Positive is the way to go.0 -
Past issuesunknown said:This comment has been removed by the Moderator
Patricia...I am fortunate, loved child of great parents, comfortable life now, family/career that I wouldn't have missed so I guess that I do not have regrets and this helps to face life and colours the attitude that you bring to it. I admire your strength for facing up to past wrongs, am sure that you will take the hard step tomorrow and hope that it eases your mind and way forward. Clean slate for 2010. Cathy.....I hope that your life is blessed and positive.0 -
How can 'adjuvant chemo' kill hidden cancer cells ??cleo said:Past issues
Patricia...I am fortunate, loved child of great parents, comfortable life now, family/career that I wouldn't have missed so I guess that I do not have regrets and this helps to face life and colours the attitude that you bring to it. I admire your strength for facing up to past wrongs, am sure that you will take the hard step tomorrow and hope that it eases your mind and way forward. Clean slate for 2010. Cathy.....I hope that your life is blessed and positive.
I don't really understand why the adjuvant chemo they give you after the debulking surgery of an INITIAL cancer diagnosis is supposed to be able to kill any hiding stray cancer cells,...and yet when you have a recurrance or distant metastisis, you are told that the second attempt at chemo has no chance of killing all of the hiding stray cancer cells any more. Why not? If chemo can kill all of these sneaky cells early on, why does that hope disapppear when you get chemo after a recurrance? Doesn't it seem logical that you could get really (REALLY!) lucky, and with the second go-round, you'd kill every one of those stray cancer cells and go into an endlesss remission (i.e. CURE !) ?
I'm not expecting this 'cure' for myself, but I'm just saying: where is the logic in this?? Or am I missing something? Is it a matter of oncologists 'managing' patient expectations at different stages of the disease? Naturally it is at least based on their personal experiences over the years, and on statistical evidence. But logic opens up the small window of hope that it is never too late to fight and win.
And, Patricia, this logic offers the comfort that there seems to be no 'right and wrong' to personal treatments decisions. You cannot second-guess yourself or blame yourself, regardless of what happens down the road with any disease progression. So much of the decision (for the patient AND the oncologist) seems to be based on what you need psychologically to get you through the upcoming months. I don't want to sound cynical, because I am not a cynic. I'm just saying, we all make our best decision based on the flawed information and limited options available. No right or wrong, just our best guess. Please don't be hard on yourself! I look back, and I know I would have still done all I did, treatment-wise, even though in retrospect it looks like I might have been better off without all the unsuccessful adjuvant chemo and radiation. Because I continue to travel down the same path of taking the most aggressive therapy my weakened body can handle while still maintaining an acceptable quality of life. And because I do 'fight on', the tiny flame of hope never really goes out. And so, even if your battle uses alternative strategies, 'fight on' in the way that best allows you to greet each day with joy and hope and deternination and peace.
And don't give away those books and 'skinny clothes'!! One of the great luxuries of chemo is the hours to READ, and I am enjoying that tremendously! (Pre-cancer I only got to read for pleasure on my vacations!) And this time, due to the low-residue diet, I'm not even gaining weight on my chemo and may yet again squeeze into those slinky black skinny pants!0 -
Linda,lindaprocopio said:How can 'adjuvant chemo' kill hidden cancer cells ??
I don't really understand why the adjuvant chemo they give you after the debulking surgery of an INITIAL cancer diagnosis is supposed to be able to kill any hiding stray cancer cells,...and yet when you have a recurrance or distant metastisis, you are told that the second attempt at chemo has no chance of killing all of the hiding stray cancer cells any more. Why not? If chemo can kill all of these sneaky cells early on, why does that hope disapppear when you get chemo after a recurrance? Doesn't it seem logical that you could get really (REALLY!) lucky, and with the second go-round, you'd kill every one of those stray cancer cells and go into an endlesss remission (i.e. CURE !) ?
I'm not expecting this 'cure' for myself, but I'm just saying: where is the logic in this?? Or am I missing something? Is it a matter of oncologists 'managing' patient expectations at different stages of the disease? Naturally it is at least based on their personal experiences over the years, and on statistical evidence. But logic opens up the small window of hope that it is never too late to fight and win.
And, Patricia, this logic offers the comfort that there seems to be no 'right and wrong' to personal treatments decisions. You cannot second-guess yourself or blame yourself, regardless of what happens down the road with any disease progression. So much of the decision (for the patient AND the oncologist) seems to be based on what you need psychologically to get you through the upcoming months. I don't want to sound cynical, because I am not a cynic. I'm just saying, we all make our best decision based on the flawed information and limited options available. No right or wrong, just our best guess. Please don't be hard on yourself! I look back, and I know I would have still done all I did, treatment-wise, even though in retrospect it looks like I might have been better off without all the unsuccessful adjuvant chemo and radiation. Because I continue to travel down the same path of taking the most aggressive therapy my weakened body can handle while still maintaining an acceptable quality of life. And because I do 'fight on', the tiny flame of hope never really goes out. And so, even if your battle uses alternative strategies, 'fight on' in the way that best allows you to greet each day with joy and hope and deternination and peace.
And don't give away those books and 'skinny clothes'!! One of the great luxuries of chemo is the hours to READ, and I am enjoying that tremendously! (Pre-cancer I only got to read for pleasure on my vacations!) And this time, due to the low-residue diet, I'm not even gaining weight on my chemo and may yet again squeeze into those slinky black skinny pants!
I've read about cancer's ability to mutate when threatened. My crap shoot theory states that treatment does the best it possibly can, but there are unknown factors that our docs can't reliably predict and definitely not control.
The "bell curve" is the norm. Our cancer is already off that bell curve. Maybe the cancer cells mutate during treatment and become immune to the assault they are given. They want to live and so they take off into other parts of the body or develop a protective shield against the chemo and radiation and take hold as soon as the assault is over.
That darned ca125 is unpredictable and unreliable. Perhaps we get a false sense of security with those low numbers. Every since my doc told me it's only reliable when HIGH, I really have little comfort in the low numbers I've had and fear the high numbers. I'm also in the process of asking for additional markers - the HE3, HK6, and C-RP - plus the ca125. I hope this will give more info.
I think that harnessing the mind to help the body is an added thing we CAN do to compliment our medical treatment. Let me know if you want any more info about this.
Blessings and peace to you. Love, Mary Ann0 -
Patricia,daisy366 said:Linda,
I've read about cancer's ability to mutate when threatened. My crap shoot theory states that treatment does the best it possibly can, but there are unknown factors that our docs can't reliably predict and definitely not control.
The "bell curve" is the norm. Our cancer is already off that bell curve. Maybe the cancer cells mutate during treatment and become immune to the assault they are given. They want to live and so they take off into other parts of the body or develop a protective shield against the chemo and radiation and take hold as soon as the assault is over.
That darned ca125 is unpredictable and unreliable. Perhaps we get a false sense of security with those low numbers. Every since my doc told me it's only reliable when HIGH, I really have little comfort in the low numbers I've had and fear the high numbers. I'm also in the process of asking for additional markers - the HE3, HK6, and C-RP - plus the ca125. I hope this will give more info.
I think that harnessing the mind to help the body is an added thing we CAN do to compliment our medical treatment. Let me know if you want any more info about this.
Blessings and peace to you. Love, Mary Ann
I applaud your decision to be heard and make your perpetrator accountable. This will not only help you but hopefully will benefit other women in the future.
You are brave and strong. Perhaps cancer helps us in this - we all need to be to fight on.
May the FORCE be with you, woman. You are a warrior.
Blessings and courage and strength to you. Mary Ann0 -
Cathy,daisy366 said:Patricia,
I applaud your decision to be heard and make your perpetrator accountable. This will not only help you but hopefully will benefit other women in the future.
You are brave and strong. Perhaps cancer helps us in this - we all need to be to fight on.
May the FORCE be with you, woman. You are a warrior.
Blessings and courage and strength to you. Mary Ann
Wow, what a hard thing to hear. And how brave you are for even asking this question!!!!! I think preparing for the inevitable is a good thing and I am doing this right along with you.
But...I think we all need HOPE and please don't lose yours. Harness your imagination and visualize your immune system strong and eliminating the cancer invaders.
Blessings and peace to you. Mary Ann0 -
Linda, the simple answer to the questionlindaprocopio said:How can 'adjuvant chemo' kill hidden cancer cells ??
I don't really understand why the adjuvant chemo they give you after the debulking surgery of an INITIAL cancer diagnosis is supposed to be able to kill any hiding stray cancer cells,...and yet when you have a recurrance or distant metastisis, you are told that the second attempt at chemo has no chance of killing all of the hiding stray cancer cells any more. Why not? If chemo can kill all of these sneaky cells early on, why does that hope disapppear when you get chemo after a recurrance? Doesn't it seem logical that you could get really (REALLY!) lucky, and with the second go-round, you'd kill every one of those stray cancer cells and go into an endlesss remission (i.e. CURE !) ?
I'm not expecting this 'cure' for myself, but I'm just saying: where is the logic in this?? Or am I missing something? Is it a matter of oncologists 'managing' patient expectations at different stages of the disease? Naturally it is at least based on their personal experiences over the years, and on statistical evidence. But logic opens up the small window of hope that it is never too late to fight and win.
And, Patricia, this logic offers the comfort that there seems to be no 'right and wrong' to personal treatments decisions. You cannot second-guess yourself or blame yourself, regardless of what happens down the road with any disease progression. So much of the decision (for the patient AND the oncologist) seems to be based on what you need psychologically to get you through the upcoming months. I don't want to sound cynical, because I am not a cynic. I'm just saying, we all make our best decision based on the flawed information and limited options available. No right or wrong, just our best guess. Please don't be hard on yourself! I look back, and I know I would have still done all I did, treatment-wise, even though in retrospect it looks like I might have been better off without all the unsuccessful adjuvant chemo and radiation. Because I continue to travel down the same path of taking the most aggressive therapy my weakened body can handle while still maintaining an acceptable quality of life. And because I do 'fight on', the tiny flame of hope never really goes out. And so, even if your battle uses alternative strategies, 'fight on' in the way that best allows you to greet each day with joy and hope and deternination and peace.
And don't give away those books and 'skinny clothes'!! One of the great luxuries of chemo is the hours to READ, and I am enjoying that tremendously! (Pre-cancer I only got to read for pleasure on my vacations!) And this time, due to the low-residue diet, I'm not even gaining weight on my chemo and may yet again squeeze into those slinky black skinny pants!
is, it can't kill them all, not even the first time. Taxol, according to something I read yesterday is effective for ER-/PR- "only modestly to the odds of survival." UPSC for the most part is ER/PR-. Endometrial-adenocarcinoma is usually positive for both those markers.
I am putting this url out there without having been there. This way I can't make a filtering decision on your behalf. It may be anything. aduvantonline.com It is said to be a risk assessment and prognostic tool used by many oncologist to determine best worst case scenario. The article also refers to Adriamycin as having been nicknamed "the red death". I don't know why, but it doesn't sound too good.
The reason I didn't initially treat my cancer with chemo was wholly an intuitive reason. I went searching for the reason after the decision.
In the readings one thing I came across on occasion was that cancer stepped up its production and spread when it "felt" under-attack. I didn't know this in the beginning. so, how I interpret that is that, the more you fight your cancer with chemical warfare, the more your cancer cells step up their abilities to hide or cloak, reproduce and the faster they spread to new areas.
They also change what they are. Your initial cancer, evolves into something else. Just as bacteria evolve in response to antibiotics, your cancer cells evolve in response to both chemical and radiation attacks. It's the reason why when it returns, your cancer cells should be reevaluated as to their response to any treatment. Unfortunately, most of the women who get treatment never even have gotten the initial evaluation of their cancer's response to the choice of treatment. Truth is that often the likelihood the usual chemo will work is minimal, something, but minimal. If, no, as more women become aware that chemo may not work as well as their doctors are saying, and that it may in fact cause their cancer to grow faster, metastasise faster and become resistant to treatment, there is reason to be hopeful they will insist on having assays, and offered alternative and complementary therapy.
If women refused chemo without their doctors taking these basic steps, it would be the beginning of doctors being forced to search harder for answers. Did any of us actually have a truthful informed consent???? Did any of your doctors actually tell you before chemo that the likelihood of a cure or even long term remission was minimal. Didn't they all, like mine say they didn't know? didn't have any statistics. That's one of the things my doctor told me that made me forgo treatment. If he didn't know if his treatment was effective or not, first how concerned was he really with my survival and second what kind of a man was he if he didn't care whether what he was doing was working or not, and he continued to "treat women, knowingly causing them to suffer hugely.He told me if I didn't get chemo I would be dead in about a year and a half. I went to the first chemo talk, was scheduled for port insertion, was informed about a bunch of things about what to do but no one ever said what the side effects or long term effects would be. I know I was not informed. The doctor's office called me for months afterward trying to get me to come back in for treatment. Refused to give me either a PET or CT. Never mind. Just remembering.
The world is about motivation. Refuse treatment if you have been given no reasonable base for accepting it, take away a doctor's income-they get reimbursed from the drug companies for the drugs they give you, sometimes there are extra bonuses if they prescribe more of a particular drug in a particular period--take away their income, take away their motivation, change their behavior.
Without incentive to change, there is little change. Most of us are not giving them this incentive. These drugs have been around for decades, they don't work any better now than they used to. They do tend to work better with nutritionally based adjuvant therapy. There are foods that make radiation less toxic and more useful. the same is true of chemo. And there is a lot to be said for those things that make our minds and bodies feel less stressed. Hopelessness is known shortener of life. Fight.
The status quo-status sucks.
Maybe a slew of women with signs that say - not sure what yet, but I may just use my artistic talents to make myself a sign. Take stand. Make a sign. Be all you can be--become a real pain in the proverbial butt.
NEVERTHELESS--NOBODY GIVE UP JUST YET.
WOULD YOU PLEASE, PLEASE, PLEASE TRY USING SOME OF THE OTHER WAYS TO FIGHT YOUR CANCER TIL YOU CAN FIGURE OUT SOMETHING ELSE.
I do think though if your doctors are handing out end of life signs that you qualify for all experimental treatments, that's all the stuff that's in trial right now.
My mother, whom I've recently discussed this situation with, is mad as hell. Told me I'd really upset her, which I feel really badly about, but she suggested we contact our congressmen and governors regarding the cancer situation and how we are being used without being informed of our prospects.
She may be 90 or wait almost 90, but she's very, very savvy. I'm thinking about contacting my congress woman and here in Michigan we have a woman governor, which my mother also mentioned.
Cathy, I beg you not to give up. The world if full of people who were told they were going to be dead soon. Don't believe everything you hear. Make a plan. A plan to fight. Not a plan to give away all your stuff,, what kind of a plan is that??? I can certainly understand if you're depressed, especially more so since there was hope and then there was non. I understand that is particularly common when you've been given reason to hopeful, you've done all you should and then hope is taken. You can ride your horse over here. Don't know where he'd stay, but you could come here. I could make you tea. We could do puzzles and eat weird things and laugh at old comedies.
Claudia
Matter of fact, if everyone showed up here it would be swell. I have notebooks and notebooks and files upon files of ways to get out of this not quite so dead as they tend to predict. I don't have a sofa, but I could get something to sit on, I know with you guys here, things would not be dull. WE COULD MAKE A PLAN. Or we could go where it's warmer. Maybe camp out for a bit. I'm going to start another crop of wheatgrass. NUmmy.0 -
Claudiacalifornia_artist said:Linda, the simple answer to the question
is, it can't kill them all, not even the first time. Taxol, according to something I read yesterday is effective for ER-/PR- "only modestly to the odds of survival." UPSC for the most part is ER/PR-. Endometrial-adenocarcinoma is usually positive for both those markers.
I am putting this url out there without having been there. This way I can't make a filtering decision on your behalf. It may be anything. aduvantonline.com It is said to be a risk assessment and prognostic tool used by many oncologist to determine best worst case scenario. The article also refers to Adriamycin as having been nicknamed "the red death". I don't know why, but it doesn't sound too good.
The reason I didn't initially treat my cancer with chemo was wholly an intuitive reason. I went searching for the reason after the decision.
In the readings one thing I came across on occasion was that cancer stepped up its production and spread when it "felt" under-attack. I didn't know this in the beginning. so, how I interpret that is that, the more you fight your cancer with chemical warfare, the more your cancer cells step up their abilities to hide or cloak, reproduce and the faster they spread to new areas.
They also change what they are. Your initial cancer, evolves into something else. Just as bacteria evolve in response to antibiotics, your cancer cells evolve in response to both chemical and radiation attacks. It's the reason why when it returns, your cancer cells should be reevaluated as to their response to any treatment. Unfortunately, most of the women who get treatment never even have gotten the initial evaluation of their cancer's response to the choice of treatment. Truth is that often the likelihood the usual chemo will work is minimal, something, but minimal. If, no, as more women become aware that chemo may not work as well as their doctors are saying, and that it may in fact cause their cancer to grow faster, metastasise faster and become resistant to treatment, there is reason to be hopeful they will insist on having assays, and offered alternative and complementary therapy.
If women refused chemo without their doctors taking these basic steps, it would be the beginning of doctors being forced to search harder for answers. Did any of us actually have a truthful informed consent???? Did any of your doctors actually tell you before chemo that the likelihood of a cure or even long term remission was minimal. Didn't they all, like mine say they didn't know? didn't have any statistics. That's one of the things my doctor told me that made me forgo treatment. If he didn't know if his treatment was effective or not, first how concerned was he really with my survival and second what kind of a man was he if he didn't care whether what he was doing was working or not, and he continued to "treat women, knowingly causing them to suffer hugely.He told me if I didn't get chemo I would be dead in about a year and a half. I went to the first chemo talk, was scheduled for port insertion, was informed about a bunch of things about what to do but no one ever said what the side effects or long term effects would be. I know I was not informed. The doctor's office called me for months afterward trying to get me to come back in for treatment. Refused to give me either a PET or CT. Never mind. Just remembering.
The world is about motivation. Refuse treatment if you have been given no reasonable base for accepting it, take away a doctor's income-they get reimbursed from the drug companies for the drugs they give you, sometimes there are extra bonuses if they prescribe more of a particular drug in a particular period--take away their income, take away their motivation, change their behavior.
Without incentive to change, there is little change. Most of us are not giving them this incentive. These drugs have been around for decades, they don't work any better now than they used to. They do tend to work better with nutritionally based adjuvant therapy. There are foods that make radiation less toxic and more useful. the same is true of chemo. And there is a lot to be said for those things that make our minds and bodies feel less stressed. Hopelessness is known shortener of life. Fight.
The status quo-status sucks.
Maybe a slew of women with signs that say - not sure what yet, but I may just use my artistic talents to make myself a sign. Take stand. Make a sign. Be all you can be--become a real pain in the proverbial butt.
NEVERTHELESS--NOBODY GIVE UP JUST YET.
WOULD YOU PLEASE, PLEASE, PLEASE TRY USING SOME OF THE OTHER WAYS TO FIGHT YOUR CANCER TIL YOU CAN FIGURE OUT SOMETHING ELSE.
I do think though if your doctors are handing out end of life signs that you qualify for all experimental treatments, that's all the stuff that's in trial right now.
My mother, whom I've recently discussed this situation with, is mad as hell. Told me I'd really upset her, which I feel really badly about, but she suggested we contact our congressmen and governors regarding the cancer situation and how we are being used without being informed of our prospects.
She may be 90 or wait almost 90, but she's very, very savvy. I'm thinking about contacting my congress woman and here in Michigan we have a woman governor, which my mother also mentioned.
Cathy, I beg you not to give up. The world if full of people who were told they were going to be dead soon. Don't believe everything you hear. Make a plan. A plan to fight. Not a plan to give away all your stuff,, what kind of a plan is that??? I can certainly understand if you're depressed, especially more so since there was hope and then there was non. I understand that is particularly common when you've been given reason to hopeful, you've done all you should and then hope is taken. You can ride your horse over here. Don't know where he'd stay, but you could come here. I could make you tea. We could do puzzles and eat weird things and laugh at old comedies.
Claudia
Matter of fact, if everyone showed up here it would be swell. I have notebooks and notebooks and files upon files of ways to get out of this not quite so dead as they tend to predict. I don't have a sofa, but I could get something to sit on, I know with you guys here, things would not be dull. WE COULD MAKE A PLAN. Or we could go where it's warmer. Maybe camp out for a bit. I'm going to start another crop of wheatgrass. NUmmy.
I don't think all docs are motivated by greed. There are protocols set up - e.g. the NCCN guidelines - which most docs utilize.
I think alternative therapies should be used alongside western medicine. Or perhaps given a chance to work before western protocols are used.
Do you know if there's any research that compares results of alternative versus western medicine for treatment of aggressive cancers?0 -
Cathy sorry to hear your news
I know how hard it would be to hear that news. But as others have said you are not a statistic. I hope you will keep all those books and those clothes and continue to fight. Show those doctors that you are not a statistic. When I was diagnosed with Stage III-C UPSC last January, I read a lot on the internet about UPSC. Everything I read was so dismal, that I quit reading. Then my daughter found this site. It has so much hopeful and encouraging information from ladies who are going through or completing treatment.
I know you have to be depressed right now, which is totally understandable. Hang in there and take one day at a time. None of us know what our outcomes will be. Determine what is important to you and enjoy those things. I hope your physical therapy is helping your abdominal pain. In peace and caring.0 -
I wonder about the chemo toolindaprocopio said:How can 'adjuvant chemo' kill hidden cancer cells ??
I don't really understand why the adjuvant chemo they give you after the debulking surgery of an INITIAL cancer diagnosis is supposed to be able to kill any hiding stray cancer cells,...and yet when you have a recurrance or distant metastisis, you are told that the second attempt at chemo has no chance of killing all of the hiding stray cancer cells any more. Why not? If chemo can kill all of these sneaky cells early on, why does that hope disapppear when you get chemo after a recurrance? Doesn't it seem logical that you could get really (REALLY!) lucky, and with the second go-round, you'd kill every one of those stray cancer cells and go into an endlesss remission (i.e. CURE !) ?
I'm not expecting this 'cure' for myself, but I'm just saying: where is the logic in this?? Or am I missing something? Is it a matter of oncologists 'managing' patient expectations at different stages of the disease? Naturally it is at least based on their personal experiences over the years, and on statistical evidence. But logic opens up the small window of hope that it is never too late to fight and win.
And, Patricia, this logic offers the comfort that there seems to be no 'right and wrong' to personal treatments decisions. You cannot second-guess yourself or blame yourself, regardless of what happens down the road with any disease progression. So much of the decision (for the patient AND the oncologist) seems to be based on what you need psychologically to get you through the upcoming months. I don't want to sound cynical, because I am not a cynic. I'm just saying, we all make our best decision based on the flawed information and limited options available. No right or wrong, just our best guess. Please don't be hard on yourself! I look back, and I know I would have still done all I did, treatment-wise, even though in retrospect it looks like I might have been better off without all the unsuccessful adjuvant chemo and radiation. Because I continue to travel down the same path of taking the most aggressive therapy my weakened body can handle while still maintaining an acceptable quality of life. And because I do 'fight on', the tiny flame of hope never really goes out. And so, even if your battle uses alternative strategies, 'fight on' in the way that best allows you to greet each day with joy and hope and deternination and peace.
And don't give away those books and 'skinny clothes'!! One of the great luxuries of chemo is the hours to READ, and I am enjoying that tremendously! (Pre-cancer I only got to read for pleasure on my vacations!) And this time, due to the low-residue diet, I'm not even gaining weight on my chemo and may yet again squeeze into those slinky black skinny pants!
I wonder about the same thing Linda. I also wonder why everyone gets 6 chemo treatments regardless of stages. It would seem to me that a stage 1a would need less chemo then a 3a? If it works the first time around, why wouldn't it work the second time around? I know I've heard serous goes dormant. I am not sure what that means and I think we need more research to figure it out. If it was dormant during first round of chemo then would it possibly not be dormant during another round for recurrance? Why wouldn't the chemo work then? I sometimes feel we are giving up too early.
I've had breast cancer and the chemo did work for this. So I know progress has been made. We need more work on EC cancers.0 -
Prognosis
Dear Kathy,
Mary Ann turned me on to guided imagery,I used Belleruth when I had breast and am using her now. Mary Ann likes Simonton and I am trying him now. He has some amazing stories of people who beat the odds. They gave my father two years for colon cancer and he lived over five. We don't know how much time we all have with this cancer but we have choices to hit it with healthy behaviors. Meditation has been found to help. Give it a try. While I was in chemo I saw by a a woman who had lung cancer (beat it) and now was doing well with ovarian cancer after they had removed a tumor the size of a dinner plate.
The statistics are just statistics. I love to hear stories of stage IV patients who have exceeded everyone's expectations.
Diane0 -
StatisticsSongflower said:Prognosis
Dear Kathy,
Mary Ann turned me on to guided imagery,I used Belleruth when I had breast and am using her now. Mary Ann likes Simonton and I am trying him now. He has some amazing stories of people who beat the odds. They gave my father two years for colon cancer and he lived over five. We don't know how much time we all have with this cancer but we have choices to hit it with healthy behaviors. Meditation has been found to help. Give it a try. While I was in chemo I saw by a a woman who had lung cancer (beat it) and now was doing well with ovarian cancer after they had removed a tumor the size of a dinner plate.
The statistics are just statistics. I love to hear stories of stage IV patients who have exceeded everyone's expectations.
Diane
"The statistics are just statistics. I love to hear stories of stage IV patients who have exceeded everyone's expectations."
Exactly.
My onc/doc and I are in agreement about the crap shoot theory. He says one day they will find out why some Stage 4's live and some Stage 1's die and that will be the beginning of a real cure for this festering toad that tries to take us over. We'll all be able to stand up and say "take that you bloody beast."
In the meanwhile, what we can do is live life with the most passion we can give it while we can still give it. Personally, I'm going out kicking and screaming...no "quietly into that good night" for me. Death will have to fight for my body.0 -
Well Said Out LawOutlaw_Josie said:Statistics
"The statistics are just statistics. I love to hear stories of stage IV patients who have exceeded everyone's expectations."
Exactly.
My onc/doc and I are in agreement about the crap shoot theory. He says one day they will find out why some Stage 4's live and some Stage 1's die and that will be the beginning of a real cure for this festering toad that tries to take us over. We'll all be able to stand up and say "take that you bloody beast."
In the meanwhile, what we can do is live life with the most passion we can give it while we can still give it. Personally, I'm going out kicking and screaming...no "quietly into that good night" for me. Death will have to fight for my body.
Aloha All,
Stats are an average...some live, some don't; Again the recurrence rate overall is 43% which means 57% don't recur; no one knows; the cancer mutates that why when it comes back, it's harder to knock back; UPSC "seeds" itself MICROSCOPICALLY in all parts of the body; the chemo has the best chance of SYSTEMICALLY killing off all the cells that have "seeded" elsewhere; my onco encouraged me to have 2 extra doses (total 8) of Carbo/Taxol because he had a "suspicion, a gut feeling there are still some bugs in there" because the CA 125 kept dropping in a straight line instead of leveling out during the last 2 cycles (5&6); it is a crap shoot; so is life...it's the human condition;
please remember "healing" is more an ART than a science; there are so many variables to our situation, so many loose threads still untied;
So in the meantime...live without regret...we all make the best decision we can make at the time...let go of the woulda, coulda, shoulda...it's just a waste of energy; do you grief work; for indeed there is much to grieve...BUT WE AIN'T DEAD YET!!!!!!
learn to dance in the rain; make lemonade out of lemons; paint, love, eat laugh; this is hard to hear when emotionally you feel down...but it's true none the less...
love you all
Marie
ps we ALL have to die eventually; we have the "advantage" of knowing how but no one knows when....so make use of your time0 -
Do I really know "HOW" I am going to dielivenow09 said:Well Said Out Law
Aloha All,
Stats are an average...some live, some don't; Again the recurrence rate overall is 43% which means 57% don't recur; no one knows; the cancer mutates that why when it comes back, it's harder to knock back; UPSC "seeds" itself MICROSCOPICALLY in all parts of the body; the chemo has the best chance of SYSTEMICALLY killing off all the cells that have "seeded" elsewhere; my onco encouraged me to have 2 extra doses (total 8) of Carbo/Taxol because he had a "suspicion, a gut feeling there are still some bugs in there" because the CA 125 kept dropping in a straight line instead of leveling out during the last 2 cycles (5&6); it is a crap shoot; so is life...it's the human condition;
please remember "healing" is more an ART than a science; there are so many variables to our situation, so many loose threads still untied;
So in the meantime...live without regret...we all make the best decision we can make at the time...let go of the woulda, coulda, shoulda...it's just a waste of energy; do you grief work; for indeed there is much to grieve...BUT WE AIN'T DEAD YET!!!!!!
learn to dance in the rain; make lemonade out of lemons; paint, love, eat laugh; this is hard to hear when emotionally you feel down...but it's true none the less...
love you all
Marie
ps we ALL have to die eventually; we have the "advantage" of knowing how but no one knows when....so make use of your time
Marie, you say that we have the advantage of knowing how we are going to die. Personally, I plan on living to my 90s and dying in my sleep. I think that's a possibility for many of us, no matter what the doctors say.0 -
Lfe ExpectancyRewriter said:Do I really know "HOW" I am going to die
Marie, you say that we have the advantage of knowing how we are going to die. Personally, I plan on living to my 90s and dying in my sleep. I think that's a possibility for many of us, no matter what the doctors say.
I agree that I plan on living into my 90's. I'm soon to be a grandmother and plan on being there for my great grandchildren. I always told my aunt and my mom during their cancer struggle to never, never, never give up.0 -
statisticsOutlaw_Josie said:Statistics
"The statistics are just statistics. I love to hear stories of stage IV patients who have exceeded everyone's expectations."
Exactly.
My onc/doc and I are in agreement about the crap shoot theory. He says one day they will find out why some Stage 4's live and some Stage 1's die and that will be the beginning of a real cure for this festering toad that tries to take us over. We'll all be able to stand up and say "take that you bloody beast."
In the meanwhile, what we can do is live life with the most passion we can give it while we can still give it. Personally, I'm going out kicking and screaming...no "quietly into that good night" for me. Death will have to fight for my body.
hello Josie,
well you say you love to hear stories of stage IV patients who have exceeded everyones expectations,
I have found 3 so far, who have made it to 1 year and 2 more who died at 2 years where are you finding these stories?
I have ben through the ringer going to an awful oncologist for most of my treatment, and then one for one day and then one for after care which gets me mutiple people responding to my phone call questions, never my "in office oncologist" and 1 of them told me the stats at U of M that is why I now am disapointed ,
cathy0 -
Mary Anndaisy366 said:Claudia
I don't think all docs are motivated by greed. There are protocols set up - e.g. the NCCN guidelines - which most docs utilize.
I think alternative therapies should be used alongside western medicine. Or perhaps given a chance to work before western protocols are used.
Do you know if there's any research that compares results of alternative versus western medicine for treatment of aggressive cancers?
Hey, in response to your post on Jan 1, I absolutley believe western and alternative approaches should be used together, and agree they are truly complementary therapies.
It is imperitive that there be accurate testing of tissue done prior to all treatment. If more doctors were well versed on the advantage of using the two together, there would be advice given to take turmeric and countless other inhancing therapies, and how much, with what other foods etc, as even the government has done studies showing that for those taking taxol as a chemo drug, or having radiation therapy, turmeric improves the outcome in both situations, by a large margin.
I am not anti chemo, I'm simply more cautious and questioing of the treatment, vs the benefit vs the quality of life. I really think much more information should be given to most patients than they're getting now on the all their choices.
Why is it women who have stratight enometrial cancer and not the higher risk ones are, for the most, part not being tested for hormone receptivity. Most of those tumors are hormone receptive and would respond to hormnal treatment with or without chemo. When I asked my surgeon, prior to surgery to test for hormone receptors, he refused, saying he only did that for breast cancer patients. And yet, when I finally was able to get my tissue tested, one year after the surgery, the adenocarcinoma part of my tumor was 60% ER and 40% PR positive. I would have benefitted that first year from hormone therapy. Women who still have the option of having children ARE offered hormone therapy in some cases, in lieu of chemo and radiation, probably because they might be more likely to ask more questions and even to refuse removal of the uterus. In those cases, wonder if they are accompanied by husbands who want to become fathers and are in their with their wives/girlfriends etc, asking for more options. In that case the doctor has to offer something other than chemo, that something is observation and hormone therapy.
Basically, what I'm saying is most people need motivation to change and we're just not providing that motivation. I have considered writing to the administrative board at the hospital where I was treated and proposing that they look into other options. Because the treatment options I received were inflexible, they lost me as a patient. If they had offered complementary therapy of a sort I would have gone it and participated in that. And they would have also benfefitted financially, which they are obligated to do as all corporations are similarly obligated.
Wouldn't it be a better world if in addition to the therapy that's now standard, wouldn't it just be loverly if we were offered, a true cancer fighting diet guideline, instruction in guided imagery, information of how the act of exercising ramps up the immune system, how massage therapy also helps to stimulate the immune system, and there's deep breathing. Would n't it be a better world if women with cancer were embraced, and treated as a valuable worth saving community. What if we were offered somewhere to gather and be proactive, to encourage one another. There is here and here is wonderful, but a friendly face and conversation on things to do, that would be stellar. don't you think you would feel more hopeful being in a group of people like yourselves all gung ho to assist yourself in you the fight of your lives.
Did you know that the great artists were almost all members of artistic groups who encouraged and challenged each other to do better, were inspired by other's success and new visions. Were no doubt admired by their peers?sp. Degas used to paint on Mary Cassatts canvases, personally, that would have ticked me off, but it worked for them.
I will be writing that letter. Might even volunteer to provide suggestions on how it could operate. Would get me out of the house and interacting with others, which is where I truly shine and blosssom. The hippie in me will, apparently, never die. People's Park!
Wouldn't it just be a dream come true. Josie, methinks I may benefit from your help on this one.
Your friend in the struggle to be an old lady, really, really old, like my mom, who survived breast cancer (no treatment either) and she's ninety now. Fifteen year survivor, that's encouraging,
Claudia
I need coffee. Waiting for the internet to go, just thought I'd chime in here. I do think you all are doing a fantastic job of loving and offering support and advice to one another. I did look for help for Patricia, but couldn't find any info that might help. Were it not for my family, I would most likely be on the street now myself. I find my anxiety is such that I am unable to hold gainful employment. Doesn't seem to stop me from having a million thoughts.
My greatest love and admiration to all of you, you are each a treasure and a joy, even in these trying times.0
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