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

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NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Jul 15, 2020 7:55 pm

crikklekay wrote:My husband’s second scan is coming up next month, if it’s clear he will be at 2 years NED! I’m a nervous wreck over it, I know 2 years is an important milestone. I guess technically he has had no signs of disease since surgery early 2018 but he wasn’t given the title NED until after his clear scan the summer of 2018. It gives me hope seeing people with NED in the double digits! Please send well wishes and good luck our way :)


I hope that all is well in his upcoming scan. I'm still not sure when you measure NED as surgery should get rid of it if it isn't anywhere else. There's also the idea of survival rates and when that starts. I had thought that it was from diagnosis but I'm not sure. It's good to knock down the milestones.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT
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John72
Posts: 351
Joined: Fri Jan 28, 2011 3:06 am
Location: Los Angeles

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

Postby John72 » Sun Aug 02, 2020 5:53 pm

Just passed year ten post resection surgery.

Considering the extensive lymph node involvement I feel pretty fortunate.
7/13/10 CC
7/23/10 -3C RC, 7cm,15/33 lymph nodes
8/31/10 5 1/2 weeks of radiation + Xeloda
11/12/10 6 rounds Oxy + Xeloda
3/25/11 Finished chemo
6/15/11 Colostomy reversal followed by infections
9/05/14 Clear CT scan
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waw4
Posts: 849
Joined: Sun Sep 12, 2010 8:44 am
Location: Durham, NC

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

Postby waw4 » Wed Aug 05, 2020 8:06 am

10 year mark for me too—so John & I are nearly twins!

I made it home from my surgery the day before my 60th birthday and am blessed and grateful to have just turned 70!

It's been a great bonus decade—both my daughters got married and I've seen the birth of 3 granddaughters, so I couldn't be more content.

I know how concerned and nearly overwhelmed I was when I started this journey, so I hope my story brings a ray of encouragement to others.

The colon club has been a great help to me—so a big shout out of thanks to the members I've known, both present and absent!

-Bill
Bill's Colonoscopy 6/29/10; Dx Stage I or II
Surgery 7/15/10; Dx Stage III,15/32 lymph nodes
FOLFOX4 start 9/14/10; end 1/20/11 (9 tx)
2021 dx MSH6 Lynch Syndrome positive
(as are my brother, sister & son, but not daughter)
Grateful for 2nd Chance NED time!
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rp1954
Posts: 1872
Joined: Mon Jun 13, 2011 1:13 am

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

Postby rp1954 » Wed Aug 05, 2020 1:48 pm

Congratulations. Great to hear you're through the Big 10, Bill.
And thanks for your insights and longitudinal comments on long term Folfox effects. NMS

It's been a great bonus decade—both my daughters got married and I've seen the birth of 3 granddaughters, so I couldn't be more content.

Just one and 2 g'sons here, so far.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements
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Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

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

Postby Lee » Wed Nov 18, 2020 12:35 pm

Bumping this thread back to the top for some new folks. It's been awhile & time to bring back. :D

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!
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LivinginHope
Posts: 42
Joined: Sat Oct 31, 2020 4:42 am

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

Postby LivinginHope » Wed Nov 18, 2020 4:14 pm

Thank you for bumping this topic up for newcomers like me.

I needed to see all these positive stories right now. So anxious about my husbands situation but seeing how well you guys have all done fills me with hope.

Thank you ❤️
Husband (37):
- 10/20 Rectal CA, LAR, 21 nodes removed
- 10/20 5/21 positive=Adj Chemo. Surgery=R0
- 11/20 Sperm banked
- 12/20 Onc appt: confirmed T3N2M0, regional not distant nodes. Pre-op CEA 2.7/post op 0.7. No mutations. Plan 6m CAPOX.
- 12/20 Round 1
- 1/21 Onc appt: new evidence, 3m is as good as 6m, REDUCED regime to 3m! Round 2. Pre-chemo CEA 0.6
- 1/21 Round 3. Pre-chemo CEA 1.1
- 2/21 Round 4.
- 3/21 Chemo ends
- 07/21 CLEAR CT SCAN & CEA 0.7
-10/21 CEA 1.1
- 04/22 CEA 1.3
- 10/22 CEA 1.4
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horizon
Posts: 1678
Joined: Tue Apr 12, 2011 10:10 pm

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

Postby horizon » Thu Nov 19, 2020 5:12 pm

Lee wrote:Bumping this thread back to the top for some new folks. It's been awhile & time to bring back. :D


I'm hoping to bump it next month with good news.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 13 years NED). Is this real life?
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lydia123123
Posts: 1
Joined: Mon Nov 30, 2020 8:39 pm

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

Postby lydia123123 » Mon Nov 30, 2020 8:50 pm

Hello Dear Friends.

I came back here today after a friend asked me for advice on colonoscopy prep. NO PLACE ON EARTH has more to say on colonoscopy prep. I saw this thread and decided to drop in. So I am saying hello. I was lydia123 back then. Y'all were a wonderful resource and source of kindness and support to me back then and I am forever grateful.

My husband's diagnosis was close to ten years ago now. He is alive and well and NED. Never had a recurrence. Took a few years after diagnosis before scans would come back without complications and weirdness (like, hmmm, "that telescoping... could be normal for you, or it could be a recurrance. we'll check again in three months")

A few years back, he graduated from oncology care and just has the occasional colonoscopy.

He still has a sensitive digestive system (radiation burns, and not enough colon), and sometimes this limits our lives, but we'll take it.

Wishing everyone well.

Lydia.

IIIB, sigmoid colon, some lymph nodes positive.
treated with FOLFOX until the Oxi got to be too much, then switched to the pill so he could get radiation.
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ibcaree
Posts: 39
Joined: Wed Nov 19, 2008 6:12 pm
Location: Oklahoma

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

Postby ibcaree » Fri Feb 05, 2021 11:26 am

Celebrated year 13 cancer free in December 2020 from stage IIIb. Blessed and fortunate to have no recurrences, clean scans and colonoscopies.
Diagnosed with Rectal Sigmoid Colon Cancer at age 33 11/11/08
Colon Resection Surgery 12/15/08
Stage IIIB; 4/18 lymph nodes affected
5FU 1/28/09 (12 treatments over 6 mos)
Mom to two boys age 15 and 12, and a beautiful post cancer baby girl aged 3 years!
Age: 44
NED as of July 09!!
"God can restore what is broken and change it into something amazing. All you need is faith." Joel 2:25
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barbara jayne
Posts: 759
Joined: Thu Feb 26, 2009 7:08 am
Facebook Username: Barbara Allenhttps://www.facebook.com/barbara.alle
Location: Wales, UK

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

Postby barbara jayne » Sat Feb 13, 2021 5:02 pm

Hi all :)
I celebrated 13 years NED last month !
How are all the old timers doing these days ?
Good wishes to everyone, stay safe x
DX. Colon Cancer (Cecum) stage 3
Right hemicolectomy Jan '08
2/22 L.nodes positive
Oxi and Xeloda
Xeloda discontinued
due to DPD enzyme deficiency
Lynch Syndrome
13 years NED
Facebook user name,
Barbara Allen https://www.facebook.com/barbara.allen.927
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mmblz
Posts: 58
Joined: Sat Oct 10, 2015 3:03 pm

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

Postby mmblz » Thu Mar 25, 2021 2:08 pm

Just popping in to say I "graduated" today. 5 years post chemo, got a clean scan and good CEA. Officially cured and only have colonoscopies on the horizon (currently every 3 years). I remember how important it was to read good news as well as bad here so wanted to offer some hope for those who are just starting this journey.
40yo married 16 years. 4 kids 12, 10, 7, 5
2015-09-21 colonoscopy finds tumor in sigmoid, partial obstruction
2015-09-22 CT no mets, path G2 adenocarcinoma, CEA 1.2
2015-09-29 lap hemicolectomy at MSKCC
2015-10-06 pT3 N1a M0 stage IIIB
2015-10-22 folfox started - 12 rounds, last 4 no oxaliplatin
2016-10-27 clear CT !
2021-03-25 "cured"
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ccpt1958
Posts: 9
Joined: Mon Dec 31, 2012 11:35 am
Location: Arizona

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

Postby ccpt1958 » Fri Mar 26, 2021 7:29 pm

I was diagnosed 4/2012 and am still cancer free. I have a colonoscopy scheduled for 4/27. Fingers crossed.
diagnosed stage IIIA 4/2012
sigmoid resection 4/2012
T2T1MO (only 4 lymph nodes harvested)
completed FOLFOX 11/2012
dropped oxy after the 4th treatment due to worsening neuropathy
NED until 6/22
anal cancer diagnosed 6/22
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CancerBum21
Posts: 29
Joined: Fri Feb 26, 2021 6:27 am

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

Postby CancerBum21 » Sun Apr 04, 2021 2:39 pm

It’s really great to hear all this good news for someone just starting this process. I’m IIIA right now and praying for the best.
34/M
DX:(Rectal Cancer) 2/15/21
Stage: T1N0M0
TAMIS Surgery 3/10/21
Pathology: T1NxM0 - LIV positive, 1/1 lymph positive Stage IIIA
FOLFOX 6 rounds
Radation & Xelota 5 weeks
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Basil
Posts: 275
Joined: Thu Mar 16, 2017 12:33 pm

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

Postby Basil » Mon Apr 05, 2021 2:03 pm

I am now four years past diagnosis and been NED since 7/31/17. My doc is going to discharge me from MDAnderson in September if everything remains clear. Thanks to you folks here who were absolutely wonderful when I came strolling in knowing nothing about rectal cancer, other than that I had it at age 40!
40 y/o male (now 46), kids 11 & 14.
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear
3 year scans - clear
4 year scans - clear
5 year scans - clear (considered cured)
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dianetavegia
Posts: 2731
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

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

Postby dianetavegia » Tue May 18, 2021 4:06 pm

I began this thread in 2009 when I was Stage III. Three years later I had a dime sized liver met and 80% of my liver removed. In late 2018 my onc discharged me as cured.

I'm doing very well. I go months without thinking about cancer. This is my first time to have a colonoscopy after a 5 year 'wait' so that's a bit freaky, but the only polyp I've ever had was the one in 2009 which was cancerous.

Hang in there, everyone! I had chemo when FOLFOX was just becoming common. I still have loads of side effects from the chemo, but I'm alive and well at age 70!

God bless,
Diane
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 years post liver resection.
Pronounced CURED and discharged by onc
“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2
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