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

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steveincolorado
Posts: 13
Joined: Sat Sep 15, 2012 6:39 pm
Location: East of Colorado Springs, Colorado

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

Postby steveincolorado » Tue Oct 31, 2017 9:04 am

I'm a stage 3C, Left side Sigmoid part of the colon with Signet Ring Cell carcinoma. My surgery was in August 2012 and I lost 12 lymph nodes during the surgery. So far five years out from the surgery I'm doing okay.

Steve
DX Stage IIIC 6 Aug 2012 at age 58
Resection 27 Aug 2012
PET scan 25 Sep 2012 no further cancer detected
Chemo started 15 Oct 2012
--Oxaliplatin
--Fluorouracil
--Leucovorin
Chemo completed 20 March 2013
CT scan 25 April 2013 No sign of cancer

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horizon
Posts: 1434
Joined: Tue Apr 12, 2011 10:10 pm

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

Postby horizon » Fri Nov 03, 2017 10:14 am

NZJay wrote:after my scope last week, I'm NED 3 years and 11 months. Final scan to come :arrow:


Congrats Jay!
I'm just a dude who still can't believe he had a resection and went through chemo (currently 6 years NED). Is this real life?

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mmblz
Posts: 47
Joined: Sat Oct 10, 2015 3:03 pm

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

Postby mmblz » Thu Nov 09, 2017 8:56 pm

2+ years, just had a clean scan
37yo married 12 years. 4 kids 9, 7, 4, 2
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 !

fumaros
Posts: 218
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

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

Postby fumaros » Mon Nov 13, 2017 10:26 am

I have been NED since my surgery in April 2016 1 year and 7 months.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9
FOLFOX began 6/24/16 - 11/25/16
10 round FOLFOX, 2 round 5-FU & Leucovorin
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

KathyLynn
Posts: 25
Joined: Thu Aug 31, 2017 3:40 pm
Facebook Username: Hillcrestkathy

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

Postby KathyLynn » Wed Nov 15, 2017 12:21 pm

Wow, you are a group of such amazing people with amazing stories. You all give us new ones here so much hope. Thank you so much for sharing your stories. It’s amazing how you all stayed in this group even when you were ready to go on with your life and leave this behind you. This has been part of my everyday routine, to check on threads and read stories.

KathyLynn
59 yr old. Mom of 3 daughters.
7/2017. Started taking probiotics. 2 weeks later blood in stool
8/2017. Colonoscopy. Rectal Cancer
9/2017. PET/CT. MRI. T2 or T3. NO MO
10/2017. Endo Ultrasound. T2 NO MO
11/27/2017. Robotic LAR.
12/2017. NED.

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Annemiek
Posts: 303
Joined: Tue Apr 07, 2015 4:05 am
Location: The Hague, Netherlands

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

Postby Annemiek » Fri Nov 17, 2017 2:29 pm

Woop woop!
Just had my Ct scan for my three year cancerversary ( counting from surgery) and the nurse called an hour later for something unrelated saying, oh yeah, your scan is clear!
Cea stable at 1.9. This three year mark is prrrrrretty big! Feels like, 10 yrs have just been added to my life.
Working out 2 times a week and horseriding once.
Working 50%due to chemobrain and neuropathie.
:D

Just saying, there’s hope.

Love,
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

Dori W
Posts: 22
Joined: Mon Aug 25, 2014 2:30 pm
Facebook Username: Dori Woodhouse

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

Postby Dori W » Mon Nov 20, 2017 3:35 pm

Hi--I had stage IIIC signet ring colon cancer with fourteen positive lymph notes. I was diagnosed in May 2008 and had my last treatment just before Thanksgiving that year, so 9 or 9.5 years, depending on how you want to count. I still remember how lousy I felt physically that Thanksgiving. Ugh.

I feel strange posting this--it's not really survivor's guilt, but I'm not sure what it is. I just want to show that I am a survivor who had a pretty iffy prognosis going in, and I am still here.

I don't want to diminish the feelings of folks dealing with a lot of uncertainty. One of the hardest things for me during and after treatment was that some of my friends and family could not accept my poor prognosis. I was in the depths, and they wanted me to remain "positive." I don't blame them--they were just dealing with their own fear--but it was hard. Now I'm sounding like a downer--Don't worry, I truly celebrate my NED status!

Happy Thanksgiving to those who celebrate!

Dori
Diagnosed stage 3C signet ring colon cancer in May, 2008
14 out of 18 positive lymph nodes
Final treatment in November, 2008
NED ever since
I used to have an account under "Dori," but I've forever lost access to it.

jsw7302013
Posts: 10
Joined: Sun Dec 07, 2014 3:14 pm

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

Postby jsw7302013 » Tue Nov 21, 2017 9:00 pm

Wow, Dori, that is so great that you haven't had any recurrence of treatment needed for so long!
Gives me hope that my NED status can continue!!
Do you still have CEA tests & follow up CT scans?
60 year old female
Dx: signet ring cell tumor in cecum, stage IIb,
no lymph involvement, Lynch negative
no perineural invasion, microsatellite instabilitiy
right hemicolectomy with resection 8/13
no follow up treatment

teacher2017
Posts: 126
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

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

Postby teacher2017 » Sun Nov 26, 2017 12:46 pm

Dori W wrote:Hi--I had stage IIIC signet ring colon cancer with fourteen positive lymph notes. I was diagnosed in May 2008 and had my last treatment just before Thanksgiving that year, so 9 or 9.5 years, depending on how you want to count. I still remember how lousy I felt physically that Thanksgiving. Ugh.

I feel strange posting this--it's not really survivor's guilt, but I'm not sure what it is. I just want to show that I am a survivor who had a pretty iffy prognosis going in, and I am still here.

I don't want to diminish the feelings of folks dealing with a lot of uncertainty. One of the hardest things for me during and after treatment was that some of my friends and family could not accept my poor prognosis. I was in the depths, and they wanted me to remain "positive." I don't blame them--they were just dealing with their own fear--but it was hard. Now I'm sounding like a downer--Don't worry, I truly celebrate my NED status!

Happy Thanksgiving to those who celebrate!

Dori


Thank you for your story! It gives me great hope! I pmed you!
Lydia
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8 started
CEA level- 1.4 11/8
Hoping clean up chemo works!

Dori W
Posts: 22
Joined: Mon Aug 25, 2014 2:30 pm
Facebook Username: Dori Woodhouse

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

Postby Dori W » Sun Nov 26, 2017 6:50 pm

Hi jsw,

I still get cea tests every six months, but I haven't had scans in a while. I think I'll be stopping my oncology visits and just follow up with my GP after it's officially been ten years.
Diagnosed stage 3C signet ring colon cancer in May, 2008
14 out of 18 positive lymph nodes
Final treatment in November, 2008
NED ever since
I used to have an account under "Dori," but I've forever lost access to it.

lauragb
Posts: 897
Joined: Sun Aug 28, 2011 5:25 pm

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

Postby lauragb » Wed Dec 06, 2017 10:16 pm

Hi all! I was Stage IIIB rectal cancer and am now over 6 years out from surgery in which I had a complete pathological response to the chemoradiation. It has been a fabulous yet at times trying 6 years with reversal, then surgery for a bowel obstruction, then bone marrow biopsy for wonky blood counts (it took 5 years for my blood counts to reach almost normal levels post treatment),then lung nodules suspicious for lung cancer that ended up being nothing but were monitored for two years, blood in urine that just ended up being radiation irritation, and now finally almost a year of no one looking for anything! I just put all this on here to encourage any of you dealing with this kind of stuff. It feels good to have NED in the building. Best wishes to anyone needing encouragement.
RC 3B 7/2011 @ 53
Chemoradiation 5 weeks 8/11
LAR-Hysterect-temp ileo
pCR, 0/23 nodes
Folfox 1/12, Xeloda 2/12 to 5/12
Reversal 5/12
SBO,lysis of adhesions 12/12
NED 11/12, 11/13, 6/16

NHMike
Posts: 690
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Dec 07, 2017 6:10 am

lauragb wrote:Hi all! I was Stage IIIB rectal cancer and am now over 6 years out from surgery in which I had a complete pathological response to the chemoradiation. It has been a fabulous yet at times trying 6 years with reversal, then surgery for a bowel obstruction, then bone marrow biopsy for wonky blood counts (it took 5 years for my blood counts to reach almost normal levels post treatment),then lung nodules suspicious for lung cancer that ended up being nothing but were monitored for two years, blood in urine that just ended up being radiation irritation, and now finally almost a year of no one looking for anything! I just put all this on here to encourage any of you dealing with this kind of stuff. It feels good to have NED in the building. Best wishes to anyone needing encouragement.


Your story looks fantastic.

Straight out of the textbook.

I imagine that it's a lot more satisfying so many years out.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

Maelleous
Posts: 108
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

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

Postby Maelleous » Thu Dec 07, 2017 7:26 am

NED since surgery, just over one year. Have a colonoscopy this coming Monday and CT scans in March. Praying to stay that way!
M 35 yr
DX Rectal Cancer, 10/16 (symptoms Feb 2016)
Dx stage 2 - Surgery Oct 25 201 Loop ileo w/ j-pouch
Close margins within 1mm
9/38 lymph nodes involved on path / Stg IIIc,pT4, pN2 B, p.M0. MSS, K‐ras, NRAS, no mutation
Started Folfox - 3rd Treament, Dec 30th 2016 Cardiac Arrest - Lucky to be part of the 6% to survive!
S-ICD installed / Port Removed
Vaccine Clinical trial at UPMC - last shot June 2017
Reversal 8/1/17 - Praying this is it!

lauragb
Posts: 897
Joined: Sun Aug 28, 2011 5:25 pm

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

Postby lauragb » Thu Dec 07, 2017 7:21 pm

NHMike, you are right it’s more satisfying years out especially since we’re not looking at anything! From your signature, looks like things are going well. Hang in there!

Laura
RC 3B 7/2011 @ 53
Chemoradiation 5 weeks 8/11
LAR-Hysterect-temp ileo
pCR, 0/23 nodes
Folfox 1/12, Xeloda 2/12 to 5/12
Reversal 5/12
SBO,lysis of adhesions 12/12
NED 11/12, 11/13, 6/16

lauragb
Posts: 897
Joined: Sun Aug 28, 2011 5:25 pm

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

Postby lauragb » Thu Dec 07, 2017 7:22 pm

Maelleous wrote:NED since surgery, just over one year. Have a colonoscopy this coming Monday and CT scans in March. Praying to stay that way!


Good luck with your colonoscopy and March scans, keeping NED in the building!
RC 3B 7/2011 @ 53
Chemoradiation 5 weeks 8/11
LAR-Hysterect-temp ileo
pCR, 0/23 nodes
Folfox 1/12, Xeloda 2/12 to 5/12
Reversal 5/12
SBO,lysis of adhesions 12/12
NED 11/12, 11/13, 6/16


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