Any Stage IV's that have been cured?

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Cj51
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Re: Any Stage IV's that have been cured?

Postby Cj51 » Fri Dec 31, 2010 5:07 pm

A female member of my family was diagnosed with stage 4 colon cancer 14 years ago....still going strong at 90 years old, NED.

Cj
DX Stage IIIb RC, T3N1M0, April 2010, 51
6 wks Xelox/rad 6/10
resection, temp illeostomy 8/10 Complete response!
12 rounds FOLFOX for clean up 9/10, Allergic to Oxi, started Xeloda only 12/10
Ileo takedown 9/28/11
4/2020 NED

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Kathryn in MN
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Re: Any Stage IV's that have been cured?

Postby Kathryn in MN » Mon Jan 03, 2011 1:06 am

lexern wrote:Any stage IV's out there that have cancer in only the lympth nodes...no organs?

Lexern


Don't know if you are still looking for answers to this. When you posted it I didn't know that I was in this situation - I still thought I was NED. I have cancer in 3 lymph nodes only. I have no organ involvement. Two are para aortic. My onoclogist and a second opinion from the Duke Tumor Board say no surgery. Chemo for life. I'm not so sure about how this will all play out, but for now I'm doing 12 rounds of FOLFIRI w/Avastin. (Finished #6 and go for #7 this Thursday. First round of chemo was FOLFOX started fall of 2009, and finished spring 2010, thinking I was NED for 3 months till finding out otherwise.)
CRC AUG09 Age 47
Sig Res T4a N2a Mx, KRAS mut codon13
Mets bones & nodes
FOLFOX, FOLFIRI, Avastin, Radiation
Irinotecan, Zaltrap & STAR RFA
APR13 pleurisy & ascites - more chemo & draining
http://www.caringbridge.org/visit/kathrynblume

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cinnamongirl56
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Re: Any Stage IV's that have been cured?

Postby cinnamongirl56 » Tue Jan 11, 2011 8:18 am

When I start to feel worried or depressed about my cancer I always re=read this post and know that everything is possible. It makes me feel very positive about my chances of being "Cured"......... thanks to all of you survivors for sharing your stories to help us "newbie's" know there is life out there even with a stage IV cancer.............
RC. 4/10 .. 54 yrs old
9/10 surgery
11/10 liver met
12/10 4 tx Avastan/5Fu scan
2/1/11 CT Scan liver met shrunk
3/4/11 Liver resect-lung spot
7/11 finished chemo scan 8/25
8/11 NED

rsuk

Re: Any Stage IV's that have been cured?

Postby rsuk » Thu Sep 29, 2011 6:25 pm

Hi
My mom dxd with stage 4 colon cancer,liver and lung mets.It was in a pretty bad shape.She had a surgery to remove the primary at colon.She is going through her 5th cycle chemo now.Oaliplatin,xeloda and avastin.she is 54 yrs old and we are all keeping our fingers crossed.I hope she beats these crabs with scissor hands to death.

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rachpach
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Re: Any Stage IV's that have been cured?

Postby rachpach » Fri Sep 30, 2011 4:41 pm

Hi There,
Wouldn't consider myself "cured" but diagnosed just over 2 years ago, with bilobar liver spread (about 15 little sh*ts) with a 6cm sigmoid tumour, and I'm still here today. I've just done round 30 of chemo (19 folfox, 11 of 12 folfiri) and am s**t scared sometimes. I haven't had any surgery (as yet) and am just waiting to see what my CT will be like when I'm done with the folfiri. Best possible thing...mega shrinkage in liver so I can have surgery done (please please, chop me up doc!)

Thing i realised the other day is i've had 2 years (Over!) and at first was told it was too late, nothing really could be done. So i've had two years. What have I done? A lot of unecessary time spent worrying about this stupid cancer I could have spent doing other things. But i did and do worry too much. I'm sick of letting it rule over me! a cure for me, would be total cure..not just physically, but mentally, emotionally and on a deeper level too. If I can't get a physical cure, i'm prepared for whatever steps i have to take, and have had some pretty down past few weeks really coming to terms with my situation, nearly gave the fight up mentally! But I'm still here 2 and a bit years later with a chronic bad a**se condition thats being managed as best it can be!
28/8/09 dx CRC age 30
9/09 Stage 4 Multiple bilobar Liver Mets
10/9 Folfox
6/10 Finish Folfox
3/11 Colon stent, obstruction
4/11-Start Folfiri
10/11-Finish Folfiri
11/11 Scan:stable disease
12/ 11 Meet with Surgeon re Colon Resection

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cptmac
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Re: Any Stage IV's that have been cured?

Postby cptmac » Mon Oct 03, 2011 10:52 am

I thought I'd pipe in as an old cancer survivor. I'm not on here much anymore because I'm tremendously busy at work and on a few boards including the CCA. Plus their are new treatments and since I'm no longer seeing my onc, can't pipe in with his opinion. And I look at the glass as overflowing, and got tired of being harangued for it.

But I'm still alive and kicking with no recurence. I think that their are a lot of stage IV's many years out who have moved on and don't think much of their cancer. I know I don't think of it that often.

When I was first diagnosed, and people lovingly teased me, I would tell them they better be nice to me because I could die soon. Everyone said I would live longer than them as healthy as I seemed. I quit saying it when some of the turned out to be right.

I'm very grateful for my extended life and can't wait to go outside soon, because the weather looks gorgeous from my window.

As my signature line says, as long as you're alive, there is hope.
cptmac
As long as you're alive, there is hope.
dx 7/04 stage IV
colon resection 8/04
liver resection 9/04 with HAI pump installed
Stage II trial w irinotecan as systemic and FUDR for direct chemo to liver via HAI pump
Cured since 9/04

olivers14
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Re: Any Stage IV's that have been cured?

Postby olivers14 » Tue May 29, 2012 6:35 pm

I was diagnosed with Stage IV that spread to the liver and covered both lobes completly with lesions. My first thought was ... That's it ... it is over, but within 2 days I had made the decision that I will beat this beast. My CEA was 597 when I started a cheno therapy regimen of Oxaliplatin, Avastin and Xeloda. After 6 full rounds my CEA value was down to under 50, the lesions in the liver had shrunk by at least 40%. In a matter of fact, w/o doing a biopsy my oncologist was not able to tell whether what showed on the CT scan were lesions or scars.
Due to some disabilitating side effects of the Oxaliplatin and my progress my oncologist decided to put me on maintenance chemotherapy, which is basically just getting rid of the Oxaliplatin and continue on Avastin & Xeloda. After now 3 maintenance treatments my CEA is at 5.2 and ... and no one really can tell the difference ... either the lesions continue to shrink or the scars are getting smaller, since the liver is regenerating itself. I was told that only time will tell.
Even if I should go into complete remission, I will consider myself never as being cured. There could always be one or more cancer cells that are in hibernation and may come out of it some later time down the road.
Like somebody on this bloig said: stubborness and determination may scare the cancer out of you ... and I have both traits.

Oliver

P.S.: I continued to work and only took time off as needed for doctor visits and chemo therapy appointments, but I never missed 1 full day of work due to the cancer. It was and is imperative to me to continue to live my life to the best of my abilities. By staying positive and telling everybody I can do it I am also convincing myself of it. I live by: Don't let any negative thoughts about the disease invade your mind and control you. Stay positive at all times. Always smile even if you don't feel like. It makes a difference. Nothing is more important than your own will to fight it and your support group (friends, family that are behind you all the way ... no matter what)

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fcancerIsay
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Re: Any Stage IV's that have been cured?

Postby fcancerIsay » Tue May 29, 2012 9:36 pm

This is the thread I have been looking for! It is so important that Stage IV's let us "newbies" know that they exist and are living their lives many years after having been diagnosed with not only cancer, but Stage IV cancer. Current statistics for Stage IV's are not what they should be and aren't really even up to date, which is why I have joined this forum. I want to hear what Stage IV's out in the trenches of this battlefield have to say. Can a Stage IV ever be cured? Clearly, that is debatable and I sure hope to be labelled "NED" one day so that years from now I can sit back and debate about whether or not I actually consider myself "cured"! Yeah, that is a debate I would like to be having with myself right about now. Of course, it is all just semantics, but being deemed "cancer free" or "without evidence of disease" at any time after an initial Stage IV diagnosis is to be "cured" in my book. And, stubborness and determination are traits that I believe do help to get you there! As a person with a Stage IV diagnosis for almost a year now, like Oliver, I am now on "maintenance" of Avastin and Xeloda every other week, having dropped the Oxaliplatin that tasted like poison some 6 months ago. I do tell cancer to get the hell out of me on a regular basis and scaring it right out of me is pretty much my strategy! I do plan to be "cured", "cancer free", "NED" and just plain "finished" with cancer for good. I do plan to sit down with a nice glass of wine to toast my one year "cancerversary" and to repeat my mantra (Fcancer!) while toasting that anniversary for many years to come. My CEA's were 386 this time last year and are now 5.3. They say to me, "surgery is not an option for you". They say, "you probably only have 2 - 3 years". I say, "La, La, La, I can't hear you"; "La La La, I can't hear you"! :D
Diag. 6/11 Stage IV CC, Mult. Mets to liver, Nodes
Full Hysterectomy due to CC 8/12
Chemo 6/11 - 2/13
Clinical T Cell Trial 3/13
Onc says "Chemo for Life", but I say "NED One Day" :)
F Cancer I Say!

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Kathryn in MN
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Re: Any Stage IV's that have been cured?

Postby Kathryn in MN » Tue May 29, 2012 10:15 pm

There are many of us that are still here many years after a stage IV diagnosis. Many of us have even enjoyed periods of NED. But the numbers to actually be cured still aren't that great. I don't mean to rain on anyone's parade - including my own. But facts are facts - more stage IV eventually die from cancer than are eventually cured from it. We are living longer and more productive lives, treating it as a chronic disease rather than a death sentence, and hoping to hang in there long enough till there is a cure! And some stage IV have been cured - mostly those that can be cured by surgery, like liver resections. Never give up hope, but also we have to be responsible and face the possibilities so that we do have our family and loved ones - and ourselves - prepared in case the outcome is not what we would like.
CRC AUG09 Age 47
Sig Res T4a N2a Mx, KRAS mut codon13
Mets bones & nodes
FOLFOX, FOLFIRI, Avastin, Radiation
Irinotecan, Zaltrap & STAR RFA
APR13 pleurisy & ascites - more chemo & draining
http://www.caringbridge.org/visit/kathrynblume

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prtza
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Re: Any Stage IV's that have been cured?

Postby prtza » Wed May 30, 2012 3:00 pm

.
DX CRC 2/29/12 Signet Ring Cell @44 YOA
Left hemicolectomy 3/9/12
T4N2M0 Stage IIIc 10/11 LN
April-June 2012 30 treatments chemoradiation
6 cycles XELOX 7/11/12-11/7/12
12/7/12 NED
Recurrence Jan '13
Starting FOLFIRI 2/20/2013

Dress In Blue Girl
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Re: Any Stage IV's that have been cured?

Postby Dress In Blue Girl » Wed May 30, 2012 8:19 pm

Still here still NED. Hopefully many more on this board will be so lucky.
It does sometimes happen:)
anita

IV feb 2005 colon resection,
folfori w/avastin,
Aug 2005 liver resection/rfa to get rid of 8 liver tumors
Sept 2005 folfox w/avastin NED!!!!
avastin till Jan 2007
port out July 2007

Be the change you want to see in the world

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Kathryn in MN
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Re: Any Stage IV's that have been cured?

Postby Kathryn in MN » Wed May 30, 2012 8:25 pm

Congrats Anita! Thanks for popping in and sharing some more hope! (I was kind of bummed when I read back through this thread and saw so many that we've lost since they had posted being NED.) Someone has to be the on the side of the statistics that do make it - so why not any one of us? There is always hope, even if we also need to understand the chances.
CRC AUG09 Age 47
Sig Res T4a N2a Mx, KRAS mut codon13
Mets bones & nodes
FOLFOX, FOLFIRI, Avastin, Radiation
Irinotecan, Zaltrap & STAR RFA
APR13 pleurisy & ascites - more chemo & draining
http://www.caringbridge.org/visit/kathrynblume

Pantheraleo
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Re: Any Stage IV's that have been cured?

Postby Pantheraleo » Thu May 31, 2012 2:46 am

Stage IV diagnosis almost 6 1/2 years ago.
NED almost 3 years after liver surgery. Recurrence in ovary and pelvic lymph nodes.
Now NED more then 2 years since last surgery which was in March 2010.
Stage IV Rectal Cancer.
Diagnosed Jan 2006 (age 44). LAR with J-Pouch March 2006
2 liver mets, surgery Nov 2006. Folfox until July 2007
Oct 2009. Mets in ovaries and pelvic lymph nodes
Surgery March 2010
XELIRI w Avastin, before/after surgery
PET/CT May 2015: NED - "Declared well"

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Gaelen
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Re: Any Stage IV's that have been cured?

Postby Gaelen » Thu May 31, 2012 4:39 am

I think it's very important that, when discussing "cure" for stage IV, we define what we mean by "many." It's a nebulous word that really, push come to shove, means very different things to different people, and IMO, it's too carelessly used when it comes to stage IV CRC and the word "cure."

Many (more than some, fewer than a majority) of us are surviving longer with stage IV disease. But there is a huge difference between surviving for a longer period of time and being "cured." For me, to be cured would mean that the disease is gone and it doesn't come back. Period. I am not so willing to take this definition as a "cure":

fcancerIsay wrote:Of course, it is all just semantics, but being deemed "cancer free" or "without evidence of disease" at any time after an initial Stage IV diagnosis is to be "cured" in my book. And, stubborness and determination are traits that I believe do help to get you there!


FcancerIsay, you are relatively early in your life with cancer. I was dx'd in stage IV and initially ruled inoperable. I know what it's like to long to hear the report "NED" - and how some people will never hear that. I'm also quite possibly one of the most stubborn, determined people you'd ever meet. I'm still dying. The drugs have stopped working, even though I was stubborn about pursuing any reasonable option.

In time, you might want to rethink whether you still feel that NED = "cured." Maybe after you're NED for 21 months, only to have a locally advanced recurrence and a third major surgery. Or maybe after your docs discover a second inoperable, untreatable bone mets recurrence following 34 months NED - maybe then you won't be so willing to equate NED with "cured." NED is a nice place to be...but I promise you, it ain't "cured." Not by a long shot. :roll:

But back for a minute to the casual mis-use of the word "many" referring to stage IV CRC survivors.
"Many" is relative. Use it to refer to 36 people out of 100, and yeah, I'll give you many. Use it to refer to 36 weeks compared to 36 MONTHS or better yet, 36 YEARS of cancer-free survival, and I bet you'd get a very different reaction. But that's the thing - doctors say that they can, with treatment, help patients live a productive life for a long time and patients HEAR a time frame that is far longer than the doc has in mind. Patients hear years when the doctor means months, or maybe even weeks. Patients hear that someone knows "many" patients with stage IV CRC who are living "many" years and I wonder if they're asking themselves in what context "many" is being used.

I've been around cancer support boards since my stage IV rectal cancer dx in 2004. In those 8+ years, I've met (in person) more than a dozen stage IV patients who survived for an extended period. I've only met, in real life, a handful (fewer than five) people who have lived for more than 10 years, and MOST (3 out of 5) have not been cancer-free for that entire time. A couple of them have NEVER been cancer-free...they have survived those X years since dx, but they've had active disease for all or most of that time. I'm not talking song-and-legend people (I know a few of them, too.) I'm talking real, breathing people who I've met, had dinner with, hugged, etc. So "cured"? Nope. Many? when compared with the number of new cases of stage IV CRC that will be dx'd this year and the number of stage IV patients who will DIE this year? Hardly.

fcancerIsay wrote:This is the thread I have been looking for! It is so important that Stage IV's let us "newbies" know that they exist and are living their lives many years after having been diagnosed with not only cancer, but Stage IV cancer. Current statistics for Stage IV's are not what they should be and aren't really even up to date, which is why I have joined this forum.


I agree that finding others who have lived what you are living is important, but please don't lay that burden to fulfill what YOU need on stage IV patients. First of all, in proportion, support forums typically have more stage IV members than members of other stages. Second, a whole lot of us, MOST of us, are in active treatment or living from scan to scan in follow-up. And like to admit it or not, most of us don't live "many" years (more than 5) after having been dx'd so we can't be here to hold the hands of more newly dx'd stage IVs forever. Most stage IVs live the median or maybe, if we're lucky, we live a bit longer - and median is still, legitimately, somewhere around 3 years after dx. (Many? do you consider 3 years "many years"? Nah, I didn't think so. It's "many" compared with the prognosis 20 years ago of less than 6 months, but it's still not "many" as a measure of time in the minds of most people.)

I don't know what you mean exactly when you say that current stats aren't what they "should be." If you want up-to-the-minute survival stats for every variant of stage IV...well, that is an impossibility considering the numbers involved. But OTOH, current stats for stage IV patients (from the NCI) are as current as possible - and they still reflect an amazing accuracy in life expectancy for most stage IV CRC patients. Those who surpass median life expectancy are still the exception, not the rule, and are often special cases who qualify for special, newer surgical treatments.

But one very simple example of life expectancy is right here for you to see if you choose to see it. Search for the "In Memoriam" threads, which some of us have tried to maintain since 2009. Take a look at the member profiles, the year dx'd vs. the year of the poster's passing. Better still, go read the two current threads for members who have passed within the last couple of days. Matthew lost his wife yesterday (May 30.) She was dx'd a year ago.

fcancerIsay wrote: I want to hear what Stage IV's out in the trenches of this battlefield have to say. Can a Stage IV ever be cured?


You may say you want to hear it - but you're gonna have to take your fingers out of your ears and stop singing "la la la, I can't hear you." Can a stage IV ever be cured? I've heard of a guy in Australia who had 5FU (and only that, and surgery) for his stage IV colon cancer more than 20 years ago, and has had no evidence of disease ever since. I know of a couple people who are 10 year+ survivors who, after their initial treatment for the disease (5FU, surgery) have been cancer-free. Are they cured? Maybe. But are they "many"? Um, no. I know that's the title of this thread, but most of the people who are still posting and still alive today are survivors - not yet cured. And many (truly many, maybe as many as half of the posters) have passed since they posted.

Anita was my first buddy (hi, Anita!), dx'd about the same time as me and the person who talked to me about the HAI pump surgery. Suzanne Lindley, who's survived 13+ years with active disease the whole time, is the survivor who set me up with Anita as a buddy. I'm happy for both Anita and Suzanne - happy for each of them every day. However, I had periods of 21 and 34 months NED, I'm 8+ years out from dx and while my liver is fine, chemo is no longer working and there are no treatments left for me. My bone mets are increasing in pain, and I can only assume that my lung mets (which were small but growing in December) are growing because I'm no longer in active treatment.

I did a fine job of surviving for the first 8+ years...but now, I'm not living with cancer - I'm dying of cancer. I'm not "cured." I'm not going to be "cured." I'm likely not even going to be NED again. So can I answer whether stage IV can be cured, or even read the question without tears? Nope. I've mourned the loss of far more stage IV friends than I've been able to celebrate long-term survival.

fcancerIsay wrote:They say to me, "surgery is not an option for you". They say, "you probably only have 2 - 3 years". I say, "La, La, La, I can't hear you"; "La La La, I can't hear you"! :D


FcancerIsay, you do whatever it takes to get you through the day. But please remember that at the end of that day, cancer will have also done whatever it needed to accomplish its deadly goals - and it doesn't care if you don't like the stats; or if you're stubborn, determined, religious; or if you'd rather say "I can't hear you." Cancer doesn't need your participation, consent or active engagement. Cancer does what it will, and modern medicine can only accomplish so much.

And like it or not, most of the time for stage IV patients, what modern medicine can accomplish is not enough.

Be well.
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment

SoConfused
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Re: Any Stage IV's that have been cured?

Postby SoConfused » Thu May 31, 2012 7:37 am

wow, Gaelen!!! I am sympathetic to your position and can't imagine how you must be feeling in your current state ... but this, well, this post is a bit MUCH.

First off, you don't always have to be the dire voice of reason - perhaps you can let others step in for you every now and then. I respect your knowledge about this disease and have learned a great deal from your many posts --- thank you for that --- however, I don't agree with your doom and gloom crusade against most new stage iv members. Regardless of what you might think, not many are interested in hearing the "awful truth" over and over again. There are some facts in your post here so those points are well taken but the fact that yoy have not met more long/term stage iv survivors does not mean they don't exist ... believe or not, you don't know everything and/or everyone.

Stats, even those you refer to in your post, are at least 5 years old ... sure not every stage iv lives long, but there are MANY who do ... you are one of them. You entered this journey with a dire diagnosis and a very poor prognosis ... but look, you are still here to talk about it 8+ years later. Medicine has come a long way since then ... give people a break.

I wish you all the best ... and thank you again for all your contributions to this board.
Stage IV CC


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