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Stage 3 rectal, NED now for 4 years...and Laz's question :)

tommycat's picture
Posts: 790
Joined: Aug 2011

hello Everyone :)

I read Laz's post about whether NED people say on or leave this Board and for me, it's a little of both: I read often and post rarely.

Thought I'd share some good news as well. I was dx in the spring of 2009 with Stage 3 rectal cancer and had a resection, an ilestomy put in place for a year, an appendictomy, a complete hysterectomy, 30 rounds of radiation, and wore the 5FU pump, as well as receiving straight oxalypatin as part of a clinical trial. (Shown not to have any effect btw, but who knows long term...at least that's what I tell myself to make up for willingly receiving that unpleasant concoction!)

Fast forward four years and I am still NED since the fall of 2009. I share this with you to offer you hope as you go through this terrible disease.....what can happen to one person, can also happen for another.

I have no answers to why I'm NED as I don't follow any particular diet/vitamin/exercise structure. I eat fairly well, and like to be active and that's about it. ...I also take a multi vitamin that is loaded with D3 and I take Coenzyme Q.

Why I got this disease I'll also never know, and it couldn't have come at a worse time---not that there would be a good time---but my identical twin girls were only 4 years old and really needed me, their Mommy, to be well.

I've read studies on cancer, and the ones that intrigue me the most lean toward cancer and inflammation and its role in kickstarting cancer cells. There are also new studies that point at how a heavy salt diet may contribute to cancer's growth. Don't know, but always like to look at new research where the results can be duplicated.

Back to Laz's question about NED people and this Board. For me, going onto CSN was the very first time I had made online friends and had online support. It was a brand new world; the people on the board were from all walks of life, had differing degrees of intelligence, different senses of humor, disparate incomes, different faiths etc.....and we were all bonded by cancer. I became very fond of a couple of the frequent posters and when they both died, I took it hard. It seemed so unfair, unjust, wrong. I cried.

I had to take three steps back to regain my balance.

I love to read everyone's here's stories, and I pray for everyone here nightly. Think you'd be suprised by how many poeple you've never met care about you!!!!

I hope everyone finds some peace and joy today~

Your friend in California,



Trubrit's picture
Posts: 5461
Joined: Jan 2013

Congratulations on being NED four years.  Every year counts, and I am praying that I can join you soon in saying I'm NED, as I have my first post treatment CT scan next week. 

Keep up the good work, and pop in to visit here now and again.

I too cry when I read of the passing of a member. No shame, its what makes us human and compassionate. 


wolfen's picture
Posts: 1329
Joined: Apr 2009

Just wanted to say that it's good to see you again and hear that you are doing so well.

I read often, put don't post much. In my case, I feel it would be unfair to burden others with my sadness & loss. This should be a place of positive thoughts, although for some of us, it did not work out that way. I too, miss so many of our wonderful friends.

Thanks for updating and giving hope to others.



tommycat's picture
Posts: 790
Joined: Aug 2011

Wolfen---this has been and always will be a soft place to fall into. God knows you've had your share of trials, so think of the Board as a place to relax and have a good cry if needed. That's from one Zonie to another, k? :)

Trubit, I follow your story and me thinks you are a strong positive sparkly addition here. Please post the results of your scan when you get them, okay?



annalexandria's picture
Posts: 2573
Joined: Oct 2011

but I like these online forums to be places of reality, with all the human emotions that go along with this journey.  I would never feel burdened if a member chose to share his or her sadness or anger with us.  In fact, I would feel honored at the trust.

Hugs to you, Wolfen~AA

Posts: 1170
Joined: Sep 2012

Hey Wolfen


Feel free to burden me anytime.  I'll burden you right back.  Poor Cynthia has been bearing the brunt of my gloom, but I am willing to spread it around.  We widows have to stick together. Lol.


Take care


annalexandria's picture
Posts: 2573
Joined: Oct 2011

Hope the scanxiety isn't too bad for you.  I'll be waiting to hear your results (and September is my scan month too, so we can be scan buddies).

annalexandria's picture
Posts: 2573
Joined: Oct 2011

Nice to see you here!  I think it's great when folks who have been around for a while pop in and say hello.  I think it gives some hope to those who are here just starting out on the journey.  So while I totally understand not posting here on a regular basis, I hope you come here on occasion and let everyone know how you're doing.

Hugs!  AA

Coloncancerblows's picture
Posts: 296
Joined: Feb 2013

Congrats on being NED for 4 years.  I've been NED for a little over month so hopefully I'll see 4 years too!

tommycat's picture
Posts: 790
Joined: Aug 2011

Thinking of you both.....we can throw a NED party, and everyone is invited.



Helen321's picture
Posts: 1428
Joined: May 2012

I'm NED and staying that way!  I'm going to that party!  So far so good and I'm still lurking.  I just like to check on everyone.  So many people helped me get through a very tough time.

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