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NED for three years - how about those of you who are NED for longer

pamness
Posts: 529
Joined: Nov 2007

I noticed when I was a newbie that there were not a lot of people posting who were NED for more than 1 or two years. There were some notable exceptions. I am now apparently someone who is also not posting much anymore. I think it might be helpful for those of us who are 2, 3 , 4 and more out of treatment to check in from time to time (mostly I am talking about me).

Pam

tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

I'll be NED 3 years in November,and I'm still here.

*hugs*
Gail

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Since it takes an average of 1-1/2 to 2 years for a cancer cell
to grow large enough to be identified, rallying about "NED"
during that time-span can only lead to a really big let-down later.

And.... many people might feel like they will "jinx" themselves,
if they brag about not having a reoccurrence.....

And.... for many that are surviving, there's a certain "guilty feeling",
that surviving brings, when we see so many not making it as far...

I often considered moving on... but realized that perhaps something
that might have kept me alive should be shared, rather than hidden.

I don't feel guilty that I haven't suffered the ills of treatment,
because as long as I'm alive, so is cancer.....

My day hasn't ended yet... My fight isn't finished, and in the end,
I may suffer as much, or more.

Live for today, help others live for tomorrow.

John

StacyGleaso's picture
StacyGleaso
Posts: 1249
Joined: Mar 2003

I was diagnosed Oct 3, 2001....been clear ever since my surgery January 22, 2002. Are those the kind of numbers you're looking for?

I can tell you that scouty, Ron, Kay, Lisa Rose, Emily, Kathy M, Katie, SpongeBob, Suzann are all doing well, too.

Superstitions don't scare me....I had my ileostomy reversal done on Friday, SEPT 13, 2002! lol

We're kicking @ $ $ and taking names!

Happy Tuesday,

Hugs to all!

Stacy

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

I LOVE your pic!!! I smile each and every time I see it, and remember the grand time we had in Nashville....

Cancer celebration of 5 years in July, this year....

Hugs, Kathi

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

What stage were you? Did you change your diet since DX? Do you take supplements?

StacyGleaso's picture
StacyGleaso
Posts: 1249
Joined: Mar 2003

I was Stage 4 with liver mets and lymph node involvement. I didn't drastically change my diet, but it wasn't crazy out of whack in the first place. I take vitamins, and admittedly, I barely did prior to cancer.

I did the chemo/radiation route.

It saddens me when things work for some people but not others, but I am always inspired by those giving 200% in this fight.

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

I am coming up to the end of year 13 ca free ex stage3 6 nodes involved. Those that are still posting are not here to brag merely stating a fact. All those that get cancer do not have a short future. I have come to know respect and love my fellow long term survivors. Over the years we have all lost some wonderful friends and no one could blame us for distancing ourselves from the death and heartache. But we have chosen to keep coming back to help and encourage wherever we can. I cannot speak for the others but I am not afraid of cancer and dying. I do dislike cancer with a passion and I am more than happy to die of old age. Ron.

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

I will be 5 years NED this Christmas, from stage 2a rectal cancer. I certainly don't feel guilty about that, but I do get the sense that posting here about success and good health tends to be resented, so I'm careful about mentioning that I have no problems.

--Greg

AnneCan
Posts: 3692
Joined: Oct 2009

I for one LOVE hearing about success + good health when it comes to this board.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

and may be it is egoist (is that the word in English?) from my part, are good news ! GOOD GOOD NEWS WELLCOME TO THIS BOARD! No resentments at all ! Actually is there any 100 years NED ,stage lV in this board? LOL , if so let me know, it it's gonna be an adrenaline shot for most of us!
Pepe.

tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

I think it is GREAT to hear about good health!

*hugs*
Gail

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Greg... I think you may have misunderstood some comments over time. NO ONE resents anyone having good health. For the most part, everyone who posts here either has been diagnosed with colorectal cancer in one stage or another and although I'm pretty sure everyone understands that no two people will ever have the same results, we all want to hear encouraging stories of people who have been there, done that, got the t-shirt and are still around worrying about every day things like, who's going to take the dog out for a walk in the rain? Who's turn is it to take the garbage out? Who gets to do the dishes? Every day things! To hear that someone who was a Stage 1 and was caught in time, or someone who was a Stage 2, got treatment and is doing fine now. Then comes the Stage III and Stage IV camp... the more we hear how well people are doing, then the more we can believe that we, too, can all be around to say that numbers are just that... numbers.

Of course, while fighting this disease and being a long term survivor, we will lose friends along the way... for many different reasons. Maybe they were just not strong enough to fight anymore. Maybe their disease was not caught in time. Maybe it's the luck of the draw and some people get to have stable, non-progressive disease while others have no way of stopping it... it just goes through them like a flood. Obviously, we are going to hear those stories, especially when we lose friends we've come to know here on the boards... and all the more reason we need to hear the stories of those who survive because they have the disease under control.

Where you may have heard/interpreted "resentment"... that will come when someone insists the only way you are going to survive is if you follow "this" diet, or take "these" supplements, or "bury the wings of two bats along with 6 dandilion leaves, mixed with some cayenne pepper". It's quite possible that any of the above may have helped someone, or they may think it has helped them... more power to them. Another good one is "exercise! If you don't build up your muscles so that you can run the 10km marathon in under an hour, you are not going to beat this disease." That is NOT good information. Everyone knows that exercise is good for one's health... that is not new news... but not everyone is capable of doing the exercise some people would prescribe. Again, more power to those who can... but it leaves those who can't out of the loop and giving themselves thoughts of doom.

So, by all means, every time you hit another milestone... another year, heck, another 6 months... these are reasons to celebrate and share with the rest of us. There is nothing better for the soul than to know that it IS possible to survive... just as it IS possible not to. But the more survival stories one hears, the more hope one has that the possibility is there.

I'm happy to hear you are going to make the 5 year milestone this Christmas. That sure will be one heck of a celebration come December :)

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

bury the wings of two bats..... LOL!
I will try , but in the meantime just in case l will continue paying attention to my doctors (may be they are in the good way! LOL).
As per my side no resentment to people NED at all! l really look forward to hear about them this is my main reason to be in the Board!
Pepe. Stage lV

claud1951's picture
claud1951
Posts: 429
Joined: Jun 2007

I'm one of those, too, Pam. Don't post often, anymore, but always reading. The other fine folks, on here, know about the latest medicines and side affects, etc, so (in my way of thinking), I don't feel I can contibute much more (and that's okay)

Have been NED for 3 1/2 years!

Keep moving forward!

Claudia

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

Hi Pam,

I was dx'ed August 6, 2001 so I recently celebrated my nine years of cancer free. Stage III lymph positive zero mets sigmoid colon cancer.

I'm one of those who not only encourages rigorous dietary changes for colon cancer, but entire lifestyle changes as well. In some opinions, cancer is a symptom of a deeper, root cause; and if we don't address the root cause, we may continue to deal with recurrent cancer. The approach that I embraced for curing my cancer, post surgery, was holistic which lined up with my personal belief system on how the body deals with disease.

Everyone is different obviously, but my case is not an anomaly in the alternative world. And from this healing success stems an evangelical-like passion and fervor that may rub others in the wrong way. What can I say? It worked for me so who's to say it can't work for others.

I'm not posting much anymore either. The multiple losses of friends over the past nine years here, compounded by a new life (we recently moved), has compelled me to limit my time on the boards. But I always like to chime in on the NED year roll call to give encouragement to folks out there starting out on their cancer journey. This place was a lifesaver nine years ago when I was scared and alone with a cancer diagnosis at 39 with 5 kids, and with a hubby who had watched with me as my sister died of intestinal cancer at 33.

peace, emily the juice chick

tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

Hey, Emily!

Good to hear from you! Where have you been?

*hugs*
Gail

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

I do like to hear who is NED, especially those over 5 years. I like to know what they have done to help their cancer. Because if the majority of those folks are changing their diet and exercising, or whatever, I want to know. The last think my ONC told me, as I waked out of that NED door was, vegetables, fruit and exercise. Yesterday, at my 3 month check, he said you have gained weight, make sure you are staying off the fat, and walk!

I'm doing it.....but we never know if it's enough.

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Because of chemo-induced lactose intollerance, I severly restricted my dairy. (Nothing life threatening...lol...just ALOT of time spent in the bathroom if I eat too much milk products...and yogurt ALWAYS gets me going when I'm a bit...well...plugged). And, because beef takes so long to digest, I limit eating it to 2-3 times per month. I always ate fresh fruits and vegies, so that didn't change after my dx.

But the cool thing is that since cutting back on dairy and beef, my cholesterol, always above 220, (my doc and I were discussing meds), now nestles around the 180 mark...YEA!!!

My life has changed, as you may imagine from my travel posts. I am fortunate that I could afford to retire. And live in 2 countries. And, necessarily, organize my life, which in turn has cut WAAAAAAAY back on the stress!!!

MY onc told me I had 6 months to live, 5 years ago. I never forget that, and always remember to tell people I love them. I figure these last 5 years have been a gift...

Hugs, Kathi

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

I'm so glad things are going so well for you, dearheart!!!!

You were one of the first people I 'met' here on CSN. And, yes, over these short years, we have needed to say goodbye to many dear friends. BUT many, as has already be posted, are living life, too!!!!

Hugs, Kathi

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

That's what my daughter said, "focus on who is living and not who has passed away, because I am sure there are a lot on the forum who are out there celebrating their life, as sad as the deaths are, you need to focus on the good, the living..., so you say!

Raquel

AnneCan
Posts: 3692
Joined: Oct 2009

I am also so inspired by people who are living with this disease, not always NED or NED off + on, but between their doctors + the survivors, they tweak their treatments + are able to live with cancer for long periods of time. Don't get me wrong; NED sounds WONDERFUL but I don't know if it is in the cards for me.

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

And, even those of us who had heard the 'cancer free' term...well, we still live with cancer shadowing us, even just a bit...

But, yeah, the folks living with cancer as a chronic disease are my personal heros. With my 2 cancers, there are many life changing side effects (just heard of a study that suggests watching for a heart attack if treatment for breast cancer included radiation to the left side, which it did for me...sigh...), but I am no longer dealing with the active side of this disease, at least not now...no doctors' appointments, hospitals, etc...

I must say, though, that my experience still holds me in awe...I had a J-pouch procedure...my rectum and sigmoid colon were removed, and my descending colon folded together to form a new internal 'rectum-like' storage bag. How an organ who's first 49 years' task was to remove water and pass along waste changed to holding, and somehow indicating that it was full to the spinchter, and then helping eliminate...WOW! That is downsizing and reorganization at its best!!!! It still astounds me! And then to learn from warriors here that the liver grows back!!!! AMAZING!!!

I always save my biggest hugs for any cancer survivor, whether long term cancer free, short term cancer free, in active treatment, or period of rest...

BIG hugs, Kathi

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

I was NED for 2 years in the rectum area. Yep, I had a set back. That sure as hell does not mean you say the hell with it.

My colon surgeon said he looked at everything while he was in there. (I think he walked around in me with his damn golf shoes on) He told me that he thinks I am finished with cancer at this point. He was amazed at how my liver looked. He could not tell I had anything done to it and it was now of normal size shape and color. They had killed off ½ of it 20 months back with chemo embolization as it could not be done with surgery.

My set back was a spot no bigger then a pencil eraser. To be NED is good and I miss it. But, just being alive trumps it. Even with this damn crap bag hanging on me.

How else could I enjoy a call from my 17 year old grandson today. Just checking on how his mean old grandpa is doing. We all just have to keep being positive minded and fight this crap. Every day we make it is priceless.

Kerry

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

I'm a little late to respond but since my annual testing was today I didn't want to jinx everything. I still have my colonoscopy to go but am not worried about it much so looks like I will hit my 6 year mark next month!!!

Most know my story, stage IV mets to liver and 1 lung. Chemo 8 months, then alternatives, then surgery, I've been very lucky. If you want to read more, you can check out my personal homepage. Pretend like I've updated with this years good news until I get around to it.

I made loads of changes both dietary and lifestyle wise in 2004-2005 and am not as diligent now but continue with the basics since it seems to be working well for me. I added exercise after I got my colostomy bag taken down and had gained some unwanted weight. I'm almost back to what I weighed pre-cancer but won't stop exercising. It makes me feel better and I like how it is making me look even if I am 56.

The dietary changes seem to be engrained now but not so much for the exercising but the only thing I have to think about to get me off my lazy butt is "my usual 7 hour chemo treatment" that I used to get. Again, it seems to be working for me, to each it's own.

Good post Pam, goodness knows this board needs some positive vibes. Hopefully we'll hear from more over the holiday weekend.

Have a great Labor Day weekend everyone,
Lisa P.

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

it's the most amazing story i've ever heard! i want to follow your's and Emily's example. i've started juicing carrots and apples (all organic), taking a raw multi vitamin, and a potent vitamin D. I'm also putting hydrogen peroxide in my water which seems to have raised my normal saturation to 99%. What other supplements did you take, and besides juicing, what diet did you adopt? Macrobiotic, vegan, or raw?

Hugs!
Krista

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

it's the most amazing story i've ever heard! i want to follow your's and Emily's example. i've started juicing carrots and apples (all organic), taking a raw multi vitamin, and a potent vitamin D. I'm also putting hydrogen peroxide in my water which seems to have raised my normal saturation to 99%. What other supplements did you take, and besides juicing, what diet did you adopt? Macrobiotic, vegan, or raw?

Hugs!
Krista

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

If you'll send me your personal email address (by PM here) I'll send you the write-up I did in 2005 about the specifics that I did. I'm not big on using company names since I did so many things I can't really say which one really worked. Many of the products aren't even out there anymore but you'll get the jist.

I have to warn you that what my naturopathic Dr recommended was based on the location of my tumors (liver, lung, and rectum) and my blood work.

I drank essaic tea 3 times a day; mangosteen juice twice; juiced carrots, celery, cabbage and beets twice; drank a green drink twice, took zinc, astragalus, manganese, calcium, a mega B complex multivitamin and a few others I can't remember. The specifics are in the email that is an attachment and this site doesn't do it justice.

My diet was 90% alkaline 10% acidic. If you google chemical pH balance of foods you should be able to find a free chart listing the foods you want to concentrate on as well as the ones to avoid. I was also told to eat asparagus, peaches, white beans, walnuts, green leafy salads, sunflower seeds, and raisins as much as I could (each for different things like raisins have iron and is good for energy). I didn't eat any red meat for the first 3 months but when I did have some later on a few time a month it was usually elk meat from a farm I live near that I trust. I did eat poultry, eggs, and some dairy that came from animals that weren't shot up with steriods and fed drugs. I ate lots of mushrooms, especially shitake and maitake, onions, and garlic in various kinds of tomato sauces. Eggplant is a natural expellent that some cultures use to induce labor so I ate it twice a week or so to "expel my tumors". I got some pH test strips and tested my pH late every morning and early evening keeping it between 6.75-7.0. It was hard to get it up there at first but once I got it there it was pretty easy to keep it there and it still is. I only test every week or so now.

I had my basic blood work done every 2 months to monitor my Absolute Neutral Count (ANC) which is the bodies ability to fight infection and other "bad" cells. I kept mine above 6.0 for over a year but with the diet and supplements I was taking all of my red and white blood cells counts were stellar. That was a nice side effect of healthy eating.

Yes, this sounds like a lot but I couldn't just stop chemo and wait to die, I had to try to do something that in my own analytical mind (some may question that) made sense. I worked much harder after stopping chemo then I ever did while on it. It cost me some money but I thought it was worth it and the good news is the price of organic and many supplements has come down drastically since 2004-2005. And be sure and google the "dirty dozen" in regards to pesticides etc. I have a list of fruits and veggies that are the most prone to have bad things versus the ones that don't have many pesticides etc. If you can afford it, most of the data now supports the fact that organic foods have more nutrients than their conventional counterparts so go all organic. If you can't really afford, just avoid the bad ones like berries, bell peppers, apples, peaches just to name a few. Once you see the list, it will make sense since anything that has a skin that is peeled is okay except potatoes.

If money was an issue and I only had to pick a few things, I would concentrate on the alkaline diet and boosting your immune system while avoiding as much exposure to any of the known carcinogens you have control over. There's more about that in the email.

Lordy I've rambled on, 6 years NED and I still get antsy about my testing..........send me your email address and we can go from there.

You know I'm pulling for you and will help anyway I can.

Lisa P.

PS. If anyone else is interested in the 4 pages, send me your personal email address on my PM here.

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Krista, should be D3 if you are only taking D. And is should be taken with calcium. I do 5,000 milligrams of D3, 1000 of vitamin C, twice a day, All the B's but B4 it has folic acid, which I have read to stay away from. B-12 for memory. 400 of E, 200 0f selenium, twice a day. Omega III. My ONC thought that 5,000 was a lot of vitamin D3, but when I told him that is what I was reading to take, he didn't say much, just didn't want me to overdue it. But I ma only 2 years since dx, but did take some advice from 2bhealed and Lisa.

In the past couple weeks I have been taking a scoop of Super Greens, and 25,000 units of probotics. I think they are called units/lines or something like that.

pamness
Posts: 529
Joined: Nov 2007

It was great to see comments from so many people, many names I remember seeing as I was going through treatment and after.

Today I went with a close friend to MGH - where I was treated. She was given a diagnoses of Stage IV (advanced) lung cancer - the original tumor is in her right lung, it has spread to the left lung and to the femur in her right leg. She is awaiting MRI to check out mets to the brain. She is 53 years old, non smoker and up until 2 weeks ago had no idea anything was amiss.

Seeing all of your positive posts - is really helpful, today has been difficult, but I know Nancy will fight this.

I am sending up massive thoughts and prayers to all everyone who has had to or is dealing with this terrible disease.

Pam

Thank you all,

valley
Posts: 94
Joined: Jun 2007

Pam

I am sorry about your friend. I hope and pray that she will fight this horrible disease.
It will be 5 years ned in Jan. for my husband diagnosed Jan. 06 with stage 3 rectal cancer 10 out of 28 nodes positive. He is doing great! He quit smoking 2 years before his diagnosis. He has changed his diet (no red meat) well maybe once a month. Lots of fruits and veggies and low fat. He walks about 4 days a week 2 or 3 miles and has lost 20 pounds. Pet scan in December and if all clear will be his last. Follow up will be a cat scan once a year and of course his colonoscopies every 2 or 3 years.

Hope this helps and please keep us posted.

Val

jams67's picture
jams67
Posts: 927
Joined: May 2006

I love being able to say that I've been NED for 5 years last mo. I had stage 4 with mets to liver and lymph nodes. I don't post as much, but I would love to give each of you a hug, and I do pray for all of you on this board. Jo Ann

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

5 years NED last month -- that's worth saying again. And again. Thanks for letting us know, Jo Ann.

--Greg

tammy31269
Posts: 22
Joined: Jul 2010

im now 9years in remission from having staget3c colonrectal cancer with 2tumors,took25treatments of radaition, 9months of 5-fu chemo, 5operations, 2different colostomies/stomas. lost my teeth at age 34, now im dealing with long term effects from radiation i have bad bone loss.but now for the colostomy im very good and from the tumors and operations i lost control of my stools so had to get the bag for life.im old school and have alot of advice for people

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