For Stage III's: NED for how long now?

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
NZJay
Posts: 640
Joined: Mon Dec 16, 2013 3:00 pm
Location: NZ

Re: For Stage III's: NED for how long now?

Postby NZJay » Mon Jan 25, 2016 10:09 pm

26 months NED as of today :)
11-13 Dx CC
SPS T4b(touched stomach organ),N1(3/23),M0(Stage 3B)
11-13: resect + partial gastrect
2-14: 1 Tx Cape + Oxy; renal failure, colitis
4-14: 7 Tx Capecitabine
1-15: clear CT
7-15: clear scope
1-16: clear CT
3-17: clear CT
10-17: clear scope (5 year gap now!)
CEA@dx: 8.4 / 6-15: 4.0 / 10-15: 4.2 / 2-16: 4.9 / 7-16: 4.9 / 11-16: 5.0 / 6-17: 4.5
NED since resection

VodKanockers
Posts: 34
Joined: Sun May 31, 2015 6:52 pm
Location: MN

Re: For Stage III's: NED for how long now?

Postby VodKanockers » Mon Jan 25, 2016 11:20 pm

Congrats! I really appreciate everyone sharing their stories that give us all hope.

First colonoscopy since my surgery on Thursday and CT week after. Not freaking out yet but I'm guessing I'll be experiencing the scanxiety everyone talks about the night before.
47yr M DX Feb '15 Stage III RC T3N1M0
Mar/Apr '15 - 6 wks chemo/IMRT rad
June '15 - LAR w/ temp ileo 0/14 LN
Jul '15 - port installed
Jul/Oct '15 - 8 rnds FOLFOX
Nov '15 - ileo takedown
Dec '15 - port removed

Lee
Posts: 6200
Joined: Sun Apr 16, 2006 4:09 pm

Re: For Stage III's: NED for how long now?

Postby Lee » Mon Jan 25, 2016 11:56 pm

NZJay wrote:26 months NED as of today :)


CONGRATULATIONS :D . That is a major milestone.

May you always reside in NEDville.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

User avatar
horizon
Posts: 1605
Joined: Tue Apr 12, 2011 10:10 pm

Re: For Stage III's: NED for how long now?

Postby horizon » Tue Jan 26, 2016 1:26 am

NZJay wrote:26 months NED as of today :)


Congrats! Big milestone!
I'm just a dude who still can't believe he had a resection and went through chemo (currently 9 years NED). Is this real life?

pantufla
Posts: 134
Joined: Thu Dec 03, 2015 12:44 pm
Facebook Username: kelleykulina

Re: For Stage III's: NED for how long now?

Postby pantufla » Tue Mar 01, 2016 6:43 pm

I wanted to bump this for JacquelineJacqueline. Lots of hope on this thread. :)
DH T2 N1b M0. 3/15 positive nodes.
Stage IIIA moderately differentiated adenocarcinoma.
Tumor size 6 cm.
Left hemicolectomy 10/26/15.
FOLFOX 11/30/15 to 5/2/16, full 12 cycles.
10/3/16 CT scan clear.
11/10/17 CT: "Focal opacity along the left lower lung, 7 mm. Two small peripheral opacities along the right lower lobe, 2 to 3 mm. A few small to mildly prominent left-sided central mesenteric nodes, up to 13 mm.
June 2019: NED.

Jacquelinejacqueline
Posts: 6
Joined: Tue Mar 01, 2016 7:37 am

Re: For Stage III's: NED for how long now?

Postby Jacquelinejacqueline » Tue Mar 01, 2016 8:14 pm

Thanks guys! It's so great reading so many positive stories. I hope you all reside in 'ned-ville' forever, and for those who are still battling but are here offering your support and encouragement, words cannot describe how amazing you are.

I have been supporting my boyfriend for 11 months now and it's been a heck of a journey, good and bad. I have been able to be mostly strong and positive for him as i know that's what he needs. However, it's taken its toll on me emotionally and even physically.

What I can't help struggling with is when I look through people's signatures, it seems like most people had a lot less lymph node involvement than he did initially, which makes me think there's less chance for him. There seem to be much fewer 3c long term survivors than 3b or a. Am I missing something, or is my brain just being selective about what it pays attention to? I know when I'm in my worried state I can look for the bad.

The most annoying thing about this worry today is that I'm checked into the blue mountains in Australia for just one night, on my only holiday away from it all, and here I am sitting in my room worrying rather than going and enjoying the pool or lunch. I know that's silly. It's just that sometimes being on my own is the only time I actually get to think about this. (And he had an oncologist appointment this morning which bought it all back home).

I

User avatar
horizon
Posts: 1605
Joined: Tue Apr 12, 2011 10:10 pm

Re: For Stage III's: NED for how long now?

Postby horizon » Wed Mar 02, 2016 10:09 am

Jacquelinejacqueline wrote:What I can't help struggling with is when I look through people's signatures, it seems like most people had a lot less lymph node involvement than he did initially, which makes me think there's less chance for him. There seem to be much fewer 3c long term survivors than 3b or a. Am I missing something, or is my brain just being selective about what it pays attention to? I know when I'm in my worried state I can look for the bad.


(In my opinion) you're wasting too much mental energy on minutia. You don't know how he's going to turn out and all the studying of stats here isn't going to change that. I spent *SO* much time worrying about things that didn't happen. The bad things that did I never could have predicted. Be informed about what is happening but it's easy to take it too far.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 9 years NED). Is this real life?

pantufla
Posts: 134
Joined: Thu Dec 03, 2015 12:44 pm
Facebook Username: kelleykulina

Re: For Stage III's: NED for how long now?

Postby pantufla » Wed Mar 02, 2016 11:27 am

Oh my goodness Jacqueline. I do the same thing. I tried to explain it to my husband, and he understood very well. He said, "You feel like a turtle." That is exactly how I feel. Sometimes, I have to just be a turtle and go into my own shell to self-soothe. Deep down, if I future-trip, I become petrified and have a hard time being part of a couple. I really have to focus on enjoying this day (here in southern California where it is beautiful). I have to write a gratitude list every day. I have to practice trusting my higher power. I can only practice. It comes and goes.

Look to Lee and Ron50. They are total miracles. Also, I get a real sense that when people are NED for 5 years, they don't tend to come to this site much more, so that is something I consider.

Welcome to the site Jacqueline. Big hugs and good for you for the mini vacation :)
DH T2 N1b M0. 3/15 positive nodes.
Stage IIIA moderately differentiated adenocarcinoma.
Tumor size 6 cm.
Left hemicolectomy 10/26/15.
FOLFOX 11/30/15 to 5/2/16, full 12 cycles.
10/3/16 CT scan clear.
11/10/17 CT: "Focal opacity along the left lower lung, 7 mm. Two small peripheral opacities along the right lower lobe, 2 to 3 mm. A few small to mildly prominent left-sided central mesenteric nodes, up to 13 mm.
June 2019: NED.

sadysue
Posts: 986
Joined: Tue Aug 02, 2011 6:59 pm
Location: Charleston, TN

Re: For Stage III's: NED for how long now?

Postby sadysue » Wed Mar 02, 2016 1:08 pm

I am approaching five years in August. I plan to hit that mark....and then beyond. Live every day like it really counts.....because it really does! :wink:
Rectal dx 4/2011 (Stage 3B - T3N1M0)
5FU/Rad - daily/6 wks ending 6/2011
Surgery 8/19/2011
Finished 8 rounds Folfox 2/2012
Ileo reverse and port out 3/2012
NED

CoachDan
Posts: 47
Joined: Wed Apr 22, 2015 5:59 am
Location: Limerick, PA

Re: For Stage III's: NED for how long now?

Postby CoachDan » Fri Mar 04, 2016 1:09 pm

NED since February 17th. 16 days and counting!
47 yo Husband and Father of 13 yo son and 11 yo daughter
DX 4/9/2015 - Rectal Cancer stage 3c
Radiation/Xeloda started 5/6/2015, ended 6/15/2015
APR Surgery 8/14/2015
Folfox started 8/23/2015

Cathie
Posts: 78
Joined: Fri Mar 28, 2014 12:09 pm

Re: For Stage III's: NED for how long now?

Postby Cathie » Fri Mar 04, 2016 9:09 pm

I don't know what stage I was. But I've been NED since Mar 2003.

Cathie
Dx'd colo rectal cancer Oct 2002
radiation chemo November December 2002
Surgery Mar 2003 which was a temp ileo
Summer of 2003 more chemo
Ileo reversed Mar 2004
Cancer free since then

User avatar
Annemiek
Posts: 304
Joined: Tue Apr 07, 2015 4:05 am
Location: The Hague, Netherlands

Re: For Stage III's: NED for how long now?

Postby Annemiek » Wed Apr 20, 2016 11:39 am

My scan results show I'm NED, at this point in time, half a year out of chemo, 1,5 year after shit hit the fan and surgery .

So proud of how hard our little family has worked to get here. ( myself included)
i'm working again, exercising, energy still low but with the right choices we are having an awsum time!!

Yihaaaaa!

Annemiek

43 yr mum of a girl aged 7
10/2014 coloncancer stage IIIc
11/2014 HIPEC, tumor removed + 12 positive out of 60 ln
hysterectomy, abdominal lining partly removed
Peridonitus, stoma fitted, 6 abcesses drained in abdomen
MSS, kras
3/2015 Folfox, someones playing kill Bill inside me
9/2015 finished 12 rounds,
First scan results: NED!!!!!!!!!
4/2016 ct scan: NED!!!
7/2016 ultrasound: NED
10/2016 cr scan: NED
5/2017 ultrasound: NED 2,5 yrs!
CEA 8/2017 1.8 stable.
CT scan 11/2017 NED! 3 yrs
CEA 1.9

DanInMN
Posts: 87
Joined: Mon Apr 02, 2012 11:18 pm

Re: For Stage III's: NED for how long now?

Postby DanInMN » Thu Apr 21, 2016 12:37 am

Four years now.
Dan - Male - Age 41
3/5/2012 - Colonoscopy - dx: sigmoid colon cancer
3/29/2012 - Colon Resection - growth through wall, 1 of 23 nodes, 4 tumor deposits - dx: Stage 3b
5/7/2012 - Begin Folfox
10/10/12 Finish Folfox
10/22/12 CT scan = NED
4/17/17 Lung nodule discovered to be colorecretal cancer met
5/12/17 Met removed

JaninOz
Posts: 39
Joined: Sat Apr 12, 2014 5:48 am
Location: Brisbane, Australia

Re: For Stage III's: NED for how long now?

Postby JaninOz » Thu Apr 28, 2016 1:13 am

Colonoscopy one teensie polyp. Scan clear. CEA down again to 0.04. I am claiming two years NED now and many many more to come.
Dx Feb 14 Rectal
T2N1M0 CT/MRI Stage 3A.
Apr 14 chemoradiation 24/7 infusion 5FU. Vasospasms. Pump removed.
leucovorin/5FU IV success.
Jul 14 LAR. No tumour cells found.
Oct 14 5FU/leucovorin bolus weekly x 13
Apr 15 Reversal
Apr 16 NED. CEA 0.04. Scan/colonoscopy clear

dmondgirl
Posts: 104
Joined: Thu Apr 14, 2016 1:54 pm

Re: For Stage III's: NED for how long now?

Postby dmondgirl » Fri Apr 29, 2016 1:15 pm

My fiance was diagnosed with Rectal cancer July 31, 2015. Had Four 5FU treatment, followed by 28 radiation with Xeloda pill.... 6 weeks break...surgery done March 17, 2016.... Pathology report says he is T2N1 , clear margins... the tumor was no longer there only minimal microscopic residue!!!! So he responded to more than 50% of his treatment!!! Having a little tough time with the recovery!!

I cant wait to scream 1 year NEW, 2 years, 3 years..etc etc GOD I have faith in you!!!
Fiance – Diagnosed 7/ 2015 @ 41yrs old- rectal cancer
Initial staging - T3N0M0
4 tx of Folfox/5FU
28 radiation with Xeloda
LAR surgery 3/17/16 final stating T2N1M0.

Rough Recovery
9/16-Recurrence @ resected area
Biopsy - Poorly differentiated adenocarcinoma, with signet ring cell features & neuroendocrine differentiation.

8 tx of Folfiri! No shrinkage everything stable .. lymph nodes behind his abdominal area grew a little bit
4 tx of Erbitux + Irinotecan- No shrinkage everything stable


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Google [Bot] and 6 guests