stage iv survivors?
Comments
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March 2004peterz54 said:jump from 2004
I believe biologicals such as Avastin began to be used about that time to augment chemo...
I was diagnosed in Feb of 2004, one month later Avastin went on the market. They did the trials at Sloan Kettering. I had been inoperable due to a large tumor on my hepatic artery. I was able to do 5 months of Avastin out of the 6 months on FOLFOX. On September 21, 2004 I had my surgery for the liver resection, colon resection, HAI pump installation, gallbladder removal, and a few lymph nodes removed. Without the Avastin I most likely would not have been able to be operated on.
My first opinion did not give me this plan, the second one did. It was good timing and I am fortunate to have a good oncologist. That can not be stressed enough. Get the opinion for the BEST oncologist you can find. They don't have to do everything, they can just offer a plan of action. If you have some hack/quack operate or advise you first, it's very hard to undo things for one, and/or possibly your window of opportunity will have passed and then it's playing catch-up. BTW: I had my 2nd opinion at Sloan. I paid for it myself. The best $350 I ever spent. I had a different doctor carry the plan of action out due to insurance issues. I was able to have the surgery at Sloan do to intervention that was done where I work on my behalf.
The next drug that came out was Erbitux. That too has helped keep things in check.
It's slowed or stopped the growth of my lung tumors. I've been on it about 6 years or so...
New drugs are coming out. I had posted a few weeks ago how my niece is currently working on new cancer drugs that target certain attributes of cancer. Colon cancer in particular.
Advances ARE being made contrary to opinions that you may read online.
-p0 -
thank you
thank you all for responding to my post i can not tell you how good it feels to have you all respond and see how many stage iv survivors there are on here, and to see that there is hope and it makes it not so harsh going thru this and going to and thru the chemo. my wife can only help so much but talking with you all helps bunches cause we are all going thru the same thing.
john0 -
just wantedwmcbane said:Another Stage 4 survivor
I wanted to wait until after today's CT scan to respond to this thread. I was dx'ed with stage 4 rectal cancer with metastatis to liver in Sept/Oct 2009. I was operable and had FOLFOX regimen, radiation, 2 surgeries, more FOLFOX, ending Sept 2010. As of today, NED. Prepare for the worse, but have hope and give it your best shot with exercise & modification of diet. Control blood sugar, control inflammation, boost immunity. Get to a top-level institution. It's possible it's just luck, but these seem to have made a difference for me.
i just wanted to say congrats to you on the ned status, and i hope to make it that far one day.
john0 -
JohnJohn23 said:John -
Overall, cancer (all types of cancer combined), has a 25% survival rate.
That statistic has not changed in nearly 40 years. Stage four colon
cancer is usually considered to provide us with a 2% survival rate.
Diagnosis is being made earlier thanks to modern technology,
but medical treatment (chemo, etc) has not advanced enough to
be of serious value.
It's great to have folks telling us that there is great renewed hope
for longevity, and how far the industry has advanced in the fight
against cancer, but the facts simply do not bear their beliefs out.
The statistics have not changed, although the time from first
diagnosis to one's final hours, has. As a Norweigian study
had once pointed out.... we're not "living longer", we're just
being diagnosed sooner.
Although a search through the archives here will indicate the
amount of individuals that are no longer able to post.... And
although the percentages of those that have died, versus those
that remain, should be noted and compared to the real statistics..
It should not be reason to give up hope; it should be reason to
plan ahead for what is considered to be the inevitable, but never
to dispel hope!
Most of us had not considered writing a will prior to our diagnosis.
Having an attorney lead you through the all the legal tangles of
real-estate transfer, motor vehicle, bank and credit contracts, etc,
will make life easier for your survivors during their difficult time
of sorrow and grief.
Insuring that our loved ones are well provided for, is something that
we usually overlook doing until we have little time left, so do it now!
As far as building confidence and hope for your own longevity?
Click on the names of those that have been here the longest
and read their profiles and what course of action they've taken
for survival.
A lot has to do with "luck"....... and.... a lot has to do with proper
treatment. Some long-timers here have oncologists that are treating
their cancer as a "chronic disease", and they have lived long lives
thanks to the knowledge and expertise of those oncologists.
Others here have taken "alternate routes"......
You have to have to have the will to survive against all odds;
you were given that will and ability at birth.... You have to learn
to listen carefully to your inner being and common sense; it is
your survival instinct talking to you. Only -you- can hear it's
words, and only -you- should make your choices accordingly.
You'll do OK, John. Take a real deep breath and believe in
yourself to make the right choices.
My best wishes to you,
John23
There is no "diagnosed earlier" for stage IV. By its very definition stage IV was discovered late. The data I posted is limited to stage IV patients, so the increased lifespans are real.
If you can't post legitimate info...0 -
I just want to point outdruidshadow said:thank you
thank you all for responding to my post i can not tell you how good it feels to have you all respond and see how many stage iv survivors there are on here, and to see that there is hope and it makes it not so harsh going thru this and going to and thru the chemo. my wife can only help so much but talking with you all helps bunches cause we are all going thru the same thing.
john
I just want to point out that although everyone has their own ideas of how to battle this disease that everyone debating it is a stage lv survivor. I for one do not believe that there hasn't been any new ideas or treatment for the last 40 years. I have met several that have found themselves NED for very long period of times. If someone doesn't want to call it a "cure" then we will call it NEDI (the I is for indefinately). lol
0 -
John
John,
You can read my history if you click on my username. Summary is that I am currently 2 years and 8 months NED since liver resection of 5 liver mets in 2/09. Next scan is this Wednesday and praying I have made it to the 3 year mark. We have a friend whose father was a great resource to us when I was first diagnosed. This Stage IV had mets to distant lymph nodes and given grim prognosis. He will be 8 years NED in May. A neighbor is 17 years out from her liver resection. I have a notebook where I have listed the names of everyone I have found online and in person greater than 5 years NED. It's quite a list.
Have faith, have hope....
Amy0 -
22 months out
John,
I am a reader, not usually a poster. But wanted to chime in.
I was dx in april 2010, stage IV with spread to Liver, Ovary, mesentary, 13/16 lymph, etc etc. After my surgery to remove a 20 cm tumor on my ovary, among other things. The pet showed remaining disease in liver and lymph. On to Folfox/Avastin for six months. Liver met "went away". Then 12months of Avastin/Xeloda afer that. Off Chemo now and monitoring. 22 months out and no progression/recurrence. 14 months NED. Not sure what the future will hold. Trying to move on. Sick of waiting for what might or might not happen.
I run into more and more Stage IV survivors.
Hang in there, friend.0 -
Not the ones you pull out of a hat. I have been here for over a year, and you have never (to my knowledge) backed up your stats. You have shown you have difficulty reading statistical data (for instance, equating median with overall). In particular you keep waving the canard of early detection, and applying it to data that references ONLY late stage cancers.John23 said:Loveya', Phil. You know
Loveya', Phil. You know that.
Those statistics I posted are as accurate and as up-to-date
as possible. I had posted links to the sites (.org, .net) numerous
times, and I'll opt to let you dig them out.
It's easy to get carried away with "statistics", Phil. It's like religion
or politics, there are facts, and there are "embellished facts", as
well as total fabrications.....
The industry would like patients to believe that there have
been remarkable advances and much reason to continue to
support the sciences involved ($$$). But lately the oncologists's
associations are speaking out and denouncing the industry's
fabricated "statistics".
To give false hope to individuals by telling them that
cancer is curable, and that new chemicals will provide them with
some profound amount of survival time, is more careless and
thoughtless than providing them with truth and insight.
People; cancer patients, need to know the real odds. Cancer
patients need to know what they're up against. This isn't some
sort of an adventure that romantic, comforting notions should
lead one down their path.
Yes, It's swell to give hope: "everything's going to be fine";
"there's a new cure for this any day now"...... but it's false hope.
This disease kills, Phil. It kills on a daily basis, and so far there
is no known cure.
A diagnosis should be sobering and a time to come to one's
senses regarding mortality.
I prefer to provide that sobering event, than pat the victim's head
and smile reassuringly.
Life is short; shorter for some of us, than others.... Being aware
of our own mortality may not be easy to face, but there comes
a time when it must be done.
My very best wishes for your continued good health.
John
Here is the full study from which I pulled that graph:
Improved Survival in Metastatic Colorectal Cancer Is Associated With Adoption of Hepatic Resection and Improved Chemotherapy
This particular review covers the five year survival rate by date of dx (again, stage 4, there is no way to diagnose stage 4 "early") interesting enough, in 1990 that number was 9%, not 2%:
"Likewise, the 5-year overall survival rate increased from 9.1% for patients diagnosed in 1990 through 1997 to 13.0% for those diagnosed in 1998 through 2000 and 19.2% for those diagnosed in 2001 through 2003; 5-year overall survival is not yet available for those diagnosed from 2004 through 2006. Proportional hazards modeling of the survival curves for patients diagnosed in 2004 through 2006 predicts a 32% 5-year survival rate (95% CI, 27% to 38%)."
Blake0 -
*John23 said:Loveya', Phil. You know
Loveya', Phil. You know that.
Those statistics I posted are as accurate and as up-to-date
as possible. I had posted links to the sites (.org, .net) numerous
times, and I'll opt to let you dig them out.
It's easy to get carried away with "statistics", Phil. It's like religion
or politics, there are facts, and there are "embellished facts", as
well as total fabrications.....
The industry would like patients to believe that there have
been remarkable advances and much reason to continue to
support the sciences involved ($$$). But lately the oncologists's
associations are speaking out and denouncing the industry's
fabricated "statistics".
To give false hope to individuals by telling them that
cancer is curable, and that new chemicals will provide them with
some profound amount of survival time, is more careless and
thoughtless than providing them with truth and insight.
People; cancer patients, need to know the real odds. Cancer
patients need to know what they're up against. This isn't some
sort of an adventure that romantic, comforting notions should
lead one down their path.
Yes, It's swell to give hope: "everything's going to be fine";
"there's a new cure for this any day now"...... but it's false hope.
This disease kills, Phil. It kills on a daily basis, and so far there
is no known cure.
A diagnosis should be sobering and a time to come to one's
senses regarding mortality.
I prefer to provide that sobering event, than pat the victim's head
and smile reassuringly.
Life is short; shorter for some of us, than others.... Being aware
of our own mortality may not be easy to face, but there comes
a time when it must be done.
My very best wishes for your continued good health.
John
*0 -
Diagnosis is being made earlier .... ???John23 said:John -
Overall, cancer (all types of cancer combined), has a 25% survival rate.
That statistic has not changed in nearly 40 years. Stage four colon
cancer is usually considered to provide us with a 2% survival rate.
Diagnosis is being made earlier thanks to modern technology,
but medical treatment (chemo, etc) has not advanced enough to
be of serious value.
It's great to have folks telling us that there is great renewed hope
for longevity, and how far the industry has advanced in the fight
against cancer, but the facts simply do not bear their beliefs out.
The statistics have not changed, although the time from first
diagnosis to one's final hours, has. As a Norweigian study
had once pointed out.... we're not "living longer", we're just
being diagnosed sooner.
Although a search through the archives here will indicate the
amount of individuals that are no longer able to post.... And
although the percentages of those that have died, versus those
that remain, should be noted and compared to the real statistics..
It should not be reason to give up hope; it should be reason to
plan ahead for what is considered to be the inevitable, but never
to dispel hope!
Most of us had not considered writing a will prior to our diagnosis.
Having an attorney lead you through the all the legal tangles of
real-estate transfer, motor vehicle, bank and credit contracts, etc,
will make life easier for your survivors during their difficult time
of sorrow and grief.
Insuring that our loved ones are well provided for, is something that
we usually overlook doing until we have little time left, so do it now!
As far as building confidence and hope for your own longevity?
Click on the names of those that have been here the longest
and read their profiles and what course of action they've taken
for survival.
A lot has to do with "luck"....... and.... a lot has to do with proper
treatment. Some long-timers here have oncologists that are treating
their cancer as a "chronic disease", and they have lived long lives
thanks to the knowledge and expertise of those oncologists.
Others here have taken "alternate routes"......
You have to have to have the will to survive against all odds;
you were given that will and ability at birth.... You have to learn
to listen carefully to your inner being and common sense; it is
your survival instinct talking to you. Only -you- can hear it's
words, and only -you- should make your choices accordingly.
You'll do OK, John. Take a real deep breath and believe in
yourself to make the right choices.
My best wishes to you,
John23
Can you point to any study that supports this assertion of yours"
"Diagnosis is being made earlier thanks to modern technology,
but medical treatment (chemo, etc) has not advanced enough to
be of serious value."
skepticism is a valuable attribute, however, the ability to be objective is as well...
I have reviewed many studies since my wife became ill last thanksgiving and I have seen nothing to support your position of no changes, and quite a lot that makes me glad she was diagnosed in 2011 and not 2001. From what I can discern the combination of changes in chemo, biologicals, and surgery have made differences.0 -
the long, fat tail grows
The median stage IV patients have gained modestly, not so much as have a growing minority that have benefited from aggressive surgery, multimodal treatment, frequent and proactive monitoring, and somewhat improved chemotherapy or biological treatments including natural ones added.
Personally I'm all for surgery; inexpensive oral, metronomic low dose chemo; mostly natural, less toxic, targeted biological therapies; and natural immune system modulators.
Stage IV wife is almost two years along, just hit her lowest CEA ever, 1.7, after what appears to have been a ~5 month transient CEA elevation, hopefully a micromet, perhaps a lung thingy, completely eroding out. She's still on continuous immunochemo and lots of targeted supplements. This mild CEA rise was a nail biter after 4 months, because remedial mobilization starts at six months as the hope of a favorable CEA transient starts to fade after 4 months and is very low at 6 months according to literature...0 -
I am a stage IV survivor
I am a stage IV survivor diagnosed in October 05. I am currently NED again through the miracle of liver surgery (3rd liver surgery). I am now working on 7 years. I am also very active mountain biking, kayaking. I also am very into diet. 95% organic, mostly vegetarian and juicing 3 times a day. Be positive and don't listen to the statistics. We are not a number. We are all individuals.
Jeff0 -
ArghhhhhhhhhhhhhPhillieG said:WTF (Where's The Facts?)
People have done VERY WELL with advances in medicine...
John23, How/where/why do you post incorrect information?
P
Knew I shouldn't have read this post so close to my scan on THursday. John 25% overall? arghhhhh great :-(0 -
Thank You for the InformationBuckwirth said:Not the ones you pull out of a hat. I have been here for over a year, and you have never (to my knowledge) backed up your stats. You have shown you have difficulty reading statistical data (for instance, equating median with overall). In particular you keep waving the canard of early detection, and applying it to data that references ONLY late stage cancers.
Here is the full study from which I pulled that graph:
Improved Survival in Metastatic Colorectal Cancer Is Associated With Adoption of Hepatic Resection and Improved Chemotherapy
This particular review covers the five year survival rate by date of dx (again, stage 4, there is no way to diagnose stage 4 "early") interesting enough, in 1990 that number was 9%, not 2%:
"Likewise, the 5-year overall survival rate increased from 9.1% for patients diagnosed in 1990 through 1997 to 13.0% for those diagnosed in 1998 through 2000 and 19.2% for those diagnosed in 2001 through 2003; 5-year overall survival is not yet available for those diagnosed from 2004 through 2006. Proportional hazards modeling of the survival curves for patients diagnosed in 2004 through 2006 predicts a 32% 5-year survival rate (95% CI, 27% to 38%)."
Blake
Blake,
Thank you for the links. Prayers for you and all who are in treatment. Glad to have you back on board. You give us all hope.
NB0 -
As you all know my CEA hasjanderson1964 said:I am a stage IV survivor
I am a stage IV survivor diagnosed in October 05. I am currently NED again through the miracle of liver surgery (3rd liver surgery). I am now working on 7 years. I am also very active mountain biking, kayaking. I also am very into diet. 95% organic, mostly vegetarian and juicing 3 times a day. Be positive and don't listen to the statistics. We are not a number. We are all individuals.
Jeff
As you all know my CEA has been going up the past couple months. It was at 13 last month and this Friday I find out what it did this month. I have been NED, for 2.5 years. What a great feeling, but really, never really thought I was cured. We never know who is going to win in this game of Russian/Cancer Roulette. That is how I see it. Lisa fought this Cancer so hard and she was never NED, God Bless her... I wish she would have had even a day of NED.
But, John, I know what you are saying...
Words hurt when they are too close to home. But it is, what it is, we can only hope and pray for the best outcome.
Stand Tall0 -
Reality is that Stage IV is a tough diagnosis. For most of us with Stage IV CRC, it is what will kill us one day - the cancer or complications due to the treatment of the cancer. Those are the hard, cold facts.
But everyone dies one day. If you are born, you die. Period. No way around it.
That doesn't mean to give up hope. It doesn't mean you can't be cured. It doesn't mean you can't live a long time as a stage IV CRC survivor. I was misdiagnosed for 2 years. We don't know at what point in time during those 2 years I became stage IV - mayebe at the start, or maybe at the end? I'm 2 1/2 years out from my diagnosis and going strong. Almost 5 years from when we know I had a big tumor causing a lot of troubles.
I know that CRC is what most likely what will take me one day, but I'm not ready yet! There are more advanced surgeries and radiation procedures that are improving odds and length of survival compared to even 10 years ago.
Back to the best advice - hope for the best, but plan for the worst. Do not ignore the possiblity of death for stage IV - be prepared for your family's sake. But do not give up hope to be around a lot longer!0 -
John,
I was diagnosed in January of 2011 Stage II, in February found out I had multiple lesions in both lobes of my liver, 30+, I have been through Folfox w/Avastin and now on Avastin only. Last MRI showed 15 lesions in right lobe only and my tumor marker is at 1.3. I have been on short chemo break and will go back for MRI on March 7th. I'm as scared as you. Hoping for amazing results and like all of us....new treatment, to be NED, liver resection, one day ultimately a cure. I won't allow myself to give up hope. I've had a new will made, POA, Health Directive, TOD on my car and made my oldest daughter beneficiary on my home. I don't have really squat in life insurance to take care of my 2 younger girls but bottom line....I'm NOT giving up hope. I will fight this until I have no more fight in me. I plan on being around to see my girls grow, graduate, marry. etc., etc., etc. No matter what the statistics say, I'm going to keep believing that I can beat this. Hang in there. We're all in this together. Hold on.
Hugs,
Pam0
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