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

AnneCan

I am also so inspired by
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

AnneCan said:

I am also so inspired by
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.

I agree completely....
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

I was NED for 2 years in the rectum
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

Hi Pam
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

scouty said:

Hi Pam
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.

I love your story, Lisa
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

scouty said:

Hi Pam
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.

I love your story, Lisa
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

pamness

scouty said:

Hi Pam
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.

so nice to hear from so many people
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,

scouty

kristasplace said:

I love your story, Lisa
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

Hey Krista
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

kristasplace said:

I love your story, Lisa
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

Just an FYI
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.

valley

pamness said:

so nice to hear from so many people
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,

Pam
I am sorry about your
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

NED
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

tammy31269

im a 9year colonrectal survivor i was 30 when i began now 41yrs.
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

PGLGreg

jams67 said:

NED
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

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

--Greg