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

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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 Oct 12, 2015 9:29 pm

cmrl wrote:I just received the news that my latest CT showed NED, so that makes it 27 months!


Fantastic. My surgeon said 80% of recurrences happen in the first 24 months... so you're in a good place right now!
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

Cj51
Posts: 893
Joined: Thu May 13, 2010 5:58 pm
Location: Midwest

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

Postby Cj51 » Mon Oct 12, 2015 10:04 pm

Five and a half years as of October 2015.
DX Stage IIIb RC, T3N1M0, April 2010, 51
6 wks Xelox/rad 6/10
resection, temp illeostomy 8/10 Complete response!
12 rounds FOLFOX for clean up 9/10, Allergic to Oxi, started Xeloda only 12/10
Ileo takedown 9/28/11
4/2020 NED

LB10
Posts: 107
Joined: Tue Mar 17, 2015 5:25 pm

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

Postby LB10 » Wed Oct 14, 2015 8:35 am

As per my first post surgical ct scan last week, 10 months!
Stage III Rectal cancer
Dx 3/14
4/14-7/14 8 rounds Folfox
8/14-9/14 Radiation/Xeloda
1/15 APR colostomy
46 yo wife & mom

wifeandmother
Posts: 22
Joined: Sat Oct 03, 2015 5:25 pm

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

Postby wifeandmother » Tue Dec 08, 2015 9:42 pm

Just bumping this thread as I hope others find it comforting to read as well.
David's wife
30 yo DH dx T3N1 RC Sept/15
28 Rad with Xeloda complete
Surgery with temp ileo January/16
Path results:complete pathological response, 23 ln clear.
8/8 adjuvant Folfox treatments complete
Waiting on reversal August/16

lpas
Posts: 1010
Joined: Wed Nov 19, 2014 11:11 pm

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

Postby lpas » Tue Dec 08, 2015 10:52 pm

NZJay wrote:
cmrl wrote:I just received the news that my latest CT showed NED, so that makes it 27 months!


Fantastic. My surgeon said 80% of recurrences happen in the first 24 months... so you're in a good place right now!


Does anyone know when you're supposed to start counting the 24 months? Is it from the date of resection or the day you finish chemo?
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo

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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 Dec 09, 2015 3:38 am

It's from the surgery on, that makes me officially one year and 3 weeks ned!!!!

Ha!

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

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hopeful
Posts: 1372
Joined: Mon Jan 04, 2010 11:43 am

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

Postby hopeful » Thu Dec 10, 2015 6:32 pm

My husband just passed the 6 year mark last month.
Caregiver to husband diagnosed 11/09 stage IIIb colon cancer
Surgery 11/5/09
12 rounds FOLFOX beginning 12/18/09
Folfox finished 6/3/10
Last scan Jan 2015
NED since Dec. 2009

TracieLynn
Posts: 46
Joined: Thu Mar 19, 2015 2:00 pm

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

Postby TracieLynn » Sun Dec 13, 2015 8:23 pm

Love seeing this! With my chemo brain I can't recall if I've already replied to this thread :)
Just got first CT Scan since treatment finished and having reversal 12/28/15. Dr does not see cancer in scan but fluid in my
Pelvis which is a concern to me.

Very hopeful to get a solid NED and stay there!!
Congrats to all!!
43 yr old Wife to DH Stage IIIB w/one Tumor Deposit
1/17 lymph nodes
Low RC Dx 2.26.15 CEA 19.5
Xeloda and Radiation 3.24-5.1
May 2015 break for recover CEA 5.5
LAR June 2015 w/temp ileostomy CEA 3.3
Xelox Aug 2015 and switch To Northwestern
09/2015 blackout, blood clot, seven stitches, on blood thinners
CT scheduled for 12/8/15
Feb 2016 Met to liver. CEA at 3.1
Liver resection @NW 3/23/16
VATS for Lung 5/6/16
More spots popping up lungs
Folfiri+Avastin Started Sept 2016-current (April 2017)

Lee
Posts: 6034
Joined: Sun Apr 16, 2006 4:09 pm

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

Postby Lee » Sun Dec 13, 2015 9:41 pm

lpas wrote:
Does anyone know when you're supposed to start counting the 24 months? Is it from the date of resection or the day you finish chemo?


My understanding, you count from the day of diagnoses.

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 - 10 years and counting!

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Bob Bones
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Facebook Username: markcooper1968@btinternet.com
Location: UK

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

Postby Bob Bones » Mon Dec 14, 2015 6:21 pm

10 years post surgery this coming January
Sigmoid Tumor 5cm T(3) , 11/23 nodes
Stage IIIC at age 37, Poorly differentiated
Surgery 23/01/06 ( Laparoscopic )
Converted to Formal because of my anatomy!
6 months of Xeloda
NED 10 years (touch wood)
Lynch Syndrome MSH2

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Jimswife
Posts: 904
Joined: Fri Nov 18, 2011 9:53 am

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

Postby Jimswife » Sun Jan 24, 2016 7:24 am

4.3 years ned now . Just had yearly scan results , hope this gives hope to the Newley diagnosed , hit the big 5 in October , onc said to my husband last year he now considers him cured as far as he's concerned .
Victoria , Wife to Jim age 43 dx oct 2011
Stage 3 cc with 2 out of 21 positive lymph nodes
Folfox starts nov 11-may 12
All scans and bloods since surgery confirm no evidence of disease
Hoping to stay ned forever .... Fingers crossed !!!!!!!

Ron50
Posts: 699
Joined: Fri Feb 10, 2006 7:04 pm

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

Postby Ron50 » Sun Jan 24, 2016 7:42 am

22/01/2016 ended year 18 of survival start year 19 still ca free. Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

Nik Colon

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

Postby Nik Colon » Sun Jan 24, 2016 11:05 pm

Lee wrote:
lpas wrote:
Does anyone know when you're supposed to start counting the 24 months? Is it from the date of resection or the day you finish chemo?


My understanding, you count from the day of diagnoses.

Lee

As for NED, it should be counted from when you became NED. "How long have you been NED?" For me since April 2015 after my surgery, since b4 that I was not NED. If that's what you were talking about.

Lee
Posts: 6034
Joined: Sun Apr 16, 2006 4:09 pm

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

Postby Lee » Mon Jan 25, 2016 7:16 pm

Nik Colon wrote:
Lee wrote:
lpas wrote:
Does anyone know when you're supposed to start counting the 24 months? Is it from the date of resection or the day you finish chemo?


My understanding, you count from the day of diagnoses.

Lee

As for NED, it should be counted from when you became NED. "How long have you been NED?" For me since April 2015 after my surgery, since b4 that I was not NED. If that's what you were talking about.


I was wrong, I was thinking "survivorship" when I made the above statement. There is a lot of variableable when NED begins. I did not use the word until I was 5 yrs out.

Thanks for correcting me,

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 - 10 years and counting!

Nik Colon

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

Postby Nik Colon » Mon Jan 25, 2016 8:07 pm

Np Lee, I wasn't sure


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