Calling all Stage 3 colorectal peeps

well
I just got NED and was planning a big party to celabrate and got very sick again and just found out tumor on liver duct is cancer they are running a test to see if they are the same or is this a new strain...I think mine has been there all this time and once I stopped chemo it kick up again.

Recurrence is where the real Battle Against Cancer is fought - and ultimately won or lost.

Many NEDs are claimed, and who can argue with them - but in the back of my mind, especially as many years as I've fought this, it always left me to wonder about recurrence in myself, and the others on the board here.

But I can't bust somebody's bubble, when they say they are NED.

But clinically, we all know you need to get 5 years out with NO recurence to be considered clinically cured.

Everyone wants so desperately to hear those words - it's normal I suppose. But to think that you can just come and do 6 months to a year of chemo and Presto, NED, that's probably not too realistic. Your post you just opened, pretty much confirms the same ideal.

TIME is the biggest predictor of NED - the more miles we can get down the highway, the better the prognosis will be.

I've always thought of NED as "No evidence of disease TODAY or this MOMENT." But forever, that' a long time...that's what makes Cancer so tough to beat, it is relentless and is in no hurry to go anywhere...it can lie in wait, regaining its forces after it seeminly looks like we have backed it down.

When we think that it only takes ONE cell to start the whole process again, it's very difficult to think we eradicated all the cancer cells in our body.

Just for fodder, here are some numbers: For every 1cm of a tumor, that is about a BILLION cancer cells inside. So for every centimeter of your tumor just multiply by a billion and that's what inside of you - very sobering indeed.

I had a 9cm tumor in my liver, so by my calculations, that roughly 9 billion cancer cells.

I read another article one time that said something to the effect, that in each one of there are cancer cells present in our bodies (normal people without cancer) and that there are roughly SIX times in a person's lifetimes, when the wiring "can go wrong" and the cells turn abnormal and the cancer process begins. Those could be genetic, environmental, or lifestyle. The immune system determines whether the cancer sticks or not. Thus, some of us can have cancer, while others in the population do not get it.

Is it because their immune systems are better at eradicating the abnormal cells than the person next to you? I don't know the answer here - and this is where the real fight in Cancer should be...

To determine what triggers a normal, healthy cell to go bad. And then the other question, once a cell has gone abnormal, what can we introduce to the body, that would systematically "DEPROGRAM" and dispose of that cell.

That's where the future of medicine needs to go - and I'm sure this will be the biggest change in medicines used to fight Cancer in our lifetimes and beyond...

Stage IV, but hope you don't mind that I stopped by...

P.S. I thought about a story that Kim told me about her Aunt, who had breast cancer. She went nearly 10 years NED, which the medical community considers you are clear, clean, and cancer should not return....well, just shy of 10-years, she got a recurrence of breast cancer and had to start over.

So, the years have to roll, before any of us can really relax - and even with that, time might not be the ultimate predictor, but it's the best thing we got. I've heard of many people getting a recurrence many years removed after NED. It's all how you want to see it, I suppose. If you've been NED X-time, then you are NED and maybe will be forever, but that may not be the case with everybody. Cancer is a formidable adversary.

That's why there is never any ABSOLUTE answer with Cancer.

-Craig

Patteee said:

stage 3B
NED 22+ months
stage 3B
NED 22+ months (june 7, 2008)

thanks Craig
Craig thank you ...once again you put into words what I am often thinking but can't write down.

I find the thought that cancer is so diligent somehow comforting...this sounds crazy because of course you really do want to beat it down but when it comes back again and again your thoughts are interesting and it makes you think about all of those giziillions of rogue cells

mags

Sundanceh said:

Recurrence is where the real Battle Against Cancer is fought - and ultimately won or lost.

Many NEDs are claimed, and who can argue with them - but in the back of my mind, especially as many years as I've fought this, it always left me to wonder about recurrence in myself, and the others on the board here.

But I can't bust somebody's bubble, when they say they are NED.

But clinically, we all know you need to get 5 years out with NO recurence to be considered clinically cured.

Everyone wants so desperately to hear those words - it's normal I suppose. But to think that you can just come and do 6 months to a year of chemo and Presto, NED, that's probably not too realistic. Your post you just opened, pretty much confirms the same ideal.

TIME is the biggest predictor of NED - the more miles we can get down the highway, the better the prognosis will be.

I've always thought of NED as "No evidence of disease TODAY or this MOMENT." But forever, that' a long time...that's what makes Cancer so tough to beat, it is relentless and is in no hurry to go anywhere...it can lie in wait, regaining its forces after it seeminly looks like we have backed it down.

When we think that it only takes ONE cell to start the whole process again, it's very difficult to think we eradicated all the cancer cells in our body.

Just for fodder, here are some numbers: For every 1cm of a tumor, that is about a BILLION cancer cells inside. So for every centimeter of your tumor just multiply by a billion and that's what inside of you - very sobering indeed.

I had a 9cm tumor in my liver, so by my calculations, that roughly 9 billion cancer cells.

I read another article one time that said something to the effect, that in each one of there are cancer cells present in our bodies (normal people without cancer) and that there are roughly SIX times in a person's lifetimes, when the wiring "can go wrong" and the cells turn abnormal and the cancer process begins. Those could be genetic, environmental, or lifestyle. The immune system determines whether the cancer sticks or not. Thus, some of us can have cancer, while others in the population do not get it.

Is it because their immune systems are better at eradicating the abnormal cells than the person next to you? I don't know the answer here - and this is where the real fight in Cancer should be...

To determine what triggers a normal, healthy cell to go bad. And then the other question, once a cell has gone abnormal, what can we introduce to the body, that would systematically "DEPROGRAM" and dispose of that cell.

That's where the future of medicine needs to go - and I'm sure this will be the biggest change in medicines used to fight Cancer in our lifetimes and beyond...

Stage IV, but hope you don't mind that I stopped by...

P.S. I thought about a story that Kim told me about her Aunt, who had breast cancer. She went nearly 10 years NED, which the medical community considers you are clear, clean, and cancer should not return....well, just shy of 10-years, she got a recurrence of breast cancer and had to start over.

So, the years have to roll, before any of us can really relax - and even with that, time might not be the ultimate predictor, but it's the best thing we got. I've heard of many people getting a recurrence many years removed after NED. It's all how you want to see it, I suppose. If you've been NED X-time, then you are NED and maybe will be forever, but that may not be the case with everybody. Cancer is a formidable adversary.

That's why there is never any ABSOLUTE answer with Cancer.

-Craig

My scans were NED prior to my belly port placement
My CT and PET scans were NED before my belly port placement - the dr wanted to do IP chemo because my appendix cancer had been found throughout my belly. On opening me up to place the port and looked around - and found more tumor, just too small to be picked up on the scans.

Assuming that he got everything, I've been NED since July 27, 2007 (Stage IV Appendix Ca). He'll be going in to look around again sometime within the next few years. Appendix Cancer isn't considered cured at 5 years out - my recurrence isn't expected for another 10-15 years.

My Primary Care Physician was 12 years out from her breast ca dx - recurred last year.

Agree with Craig - no absolutes with Cancer. However, we have to live on, assuming the best, and dealing with whatever we have to face.

Hi brooks
Stage 3c 6/13 nodes . i have now been ca free for 12 years 3 months and 27 days ,not that I keep count:) Ron.

Living life
I'm stage IIIB-or C depending on who you ask and I finished Chemo Wednesday 4/14/10. I also saw the doctor and she said with staging of III there can be recurrence in the liver, and if there is one we will go to surgery. I don't know why she told me that but took it as a possible warning. Will scan on 5/10/10 and then go from there.

I will dance if the scans come back NED and begin what I call my 2.0 new and improved life. If the scans show otherwise I will fight on, but plan to implement my 2.0 life as soon as possible. But I know I will always be "looking over my shoulder" waiting and wondering if I will be hit again.

We have lost several friends who were once considered cured (Old terminology) from various forms of cancer, so to help combat the fear of possible recurrence I will be diligent in my screening practices and do what I can to prevent this from coming back.

I appreciate what Craig posted. The medical community has spent why too much time trying to link all ills to genetics, and they need to figure out how to turn the cancer cells off or how to make the body recognize what is wrong so it can seek and destroy the rouge cells. (I will get off my soap box now)

I do find it hard to trust my bodies reactions to stress, inflammation and other things that are being suggested as possible causes for cancer cell growth. I know now that I can make cancer cells and what will prevent me from doing that again in the future. I also think that I have spent so much time in the chemo chair and I am not even sure if the chemo had any affect on the cancer cells. I know it has affected my "normal cells" because of the side effects that I have. I hope we have done enough!

One other random thought. I have had several people suggest that there is a strong mind-body link that might be the reason the body fails to fight cancer cells. I know that working with Cardiovascular patients that the mind body link is very real. This is not a blame issue but for some reason stress and difficult situations allow the body to not function as it should. Over the past 2 years I had to live in a very stressful situation at work. I will save you all the details, but looking back when I realized how bad it was I should have just grabbed my coat and left. My life is more important than being subjected to what I went through. I do wonder if all of what happened could have contributed to a "physical breakdown"-just wondering. Maybe the mind-body thing should be a new post.

Oh the random thoughts from a chemo brain!
Jan

Hi Brooks!
Stage3 Ned since surgery,3 years and 9 months.

grammadebbie said:

2 years 6 mo IIIc

2 years 6 months - IIIc - 8/38 lymph nodes positive
Surgery Oct.2007 followed with 6 months chemo.

Happy to be here!

Blessings to all,

Debbie

PS it would be interesting to share what our "new normal" is like. I have chemo brain, neuropathy, still fatigued alot, bones hurt, my skin has changed (turns red), sweat profusely etc. Not complaining, it's just interesting that some doctors don't realize the long term effects.

Just celebrated 2 years
I was 3B 4 lymph nodes, surgery 4/17/08, 6 months chemo. CT every 6 months shows nothing new, CEA remain stable. I too keep waiting for the ball to drop. I tend to feel that if I let my guard down and allow myself to breath easy that I will jinx myself and it will return. I pray every night that God gave me another day, no matter how good or bad, I am still here, and plan to be for a long time. We joke about my new "normal". The neuropathy is better but now my arms go numb and tingly for no reason. I too have chemo brain, but that too is getting better. b12 levels are still low and "plumbing" doesn't work the same. Small issues compared to the bg picture. Just keep moving forward!

Staged 3a (1 out of 18 lymphs)
Was NED post-op, pre-tx Sept 09'. Just finished 6mo FOLFOX, and CT last week still showed NED. Showed a couple of spots on my liver, which kinda bothers me. They're 'assuming' they are just cyst though. They showed up on my pre-tx CT also.

-DJ