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

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NHMike
Posts: 2512
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: 340
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: 841
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)
Grateful for 2nd Chance NED time!

rp1954
Posts: 1538
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 to almost nothing mid 2018, mostly IV C

Lee
Posts: 6200
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!

LivinginHope
Posts: 30
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 (36):
- 5/10/20 - Rectal CA, 15cm (upper rectum)
- 21/10/20 - LAR, 21 nodes removed
- 31/10/20 - 5/21 positive=Adj Chemo. Surgery=R0
- 11/20 - Sperm banked
- 1/12/20 - Onc appt: confirmed T3N2M0, regional not distant nodes. Pre-op CEA 2.7/post op 0.7. No mutations. Plan 6m of CAPOX.
- 12/20 - Round 1
- 4/1/21 - Onc appt: new evidence, 3m is as good as 6m, REDUCED regime to 3m! Round 2. Pre-chemo CEA 0.6
- 25/1/21 - Round 3. Pre-chemo CEA 1.1
- 17/2/21 - Round 4 underway.

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horizon
Posts: 1603
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 9 years NED). Is this real life?

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.

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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