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

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ASTEPHENS33
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Re: For Stage III's: NED for how long now?

Postby ASTEPHENS33 » Fri May 04, 2018 10:19 pm

I was diagnosed in 2005 and am still NED. I do have colonoscopies every year and endoscopies every 3-5 years. I had genetic testing done, and I do have the mutation for AFAP. Glad to see ALL the survivors!

[Ana & Alex]
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Location: Austria

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

Postby [Ana & Alex] » Fri May 11, 2018 11:09 am

I dreamt about this day so many times, when I could post a victory on this thread.

Yesterday was my surgery's and stoma's birthday. My life is going so well. I'm working and having a ball with my baby girl. And I'm doing bloodwork every two months, CTs every six months and a colonoscopy per year. Today I had my second scan since End of chemo and everything is ok!

I'm so happy, I could explode.
I hope I still have a long life ahead and I can inspire someone who is young and has rectal cancer and has to go through everything we have to, that life can be really sweet again!

Keep fighting and keep hoping!
All the best for everyone,

Love,
Ana
Dx @ 29 yo. Mum (2 y.o.) & Wife

12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d
12/2017: Aspirin, Vit. D3, Curcumin, Multivitamin.

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Robino1
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Re: For Stage III's: NED for how long now?

Postby Robino1 » Fri May 11, 2018 12:04 pm

Excellent report :D

I wish you continued NED Status!
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

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

Postby thelongglass » Sun May 13, 2018 7:35 pm

It really has been a long time since I posted here. I have made the effort to live my life fully since diagnosis and treatment and been incredibly busy doing that and mothering my three girls. “Challenge by Choice” has been my motto ever since going through that challenging year of treatment and surgeries not by choice, but by necessity.

I am applying to Physician Assistant programs this year, something I set my sights on around my two year NED mark. Returned to university for a few prerequisites and became a medical assistant in order to attain the required 2000 patient care hours to apply to my preferred program. I learned so much as a patient and from all of the other patients I met or read about here online. My PAs were especially important to me in education and communication and care. Regardless of whether I get in, I feel grateful to be here with the opportunity to try.
http://thelongglass.wordpress.com
12/22/10- Diagnosed at 30 yo
Rectal Stage IIIB, T3N1M0
1/11/11- 25 doses radiation w/ 24/7 5FU pump
4/8/11- LAR-Complete Response to Therapy!
5/13/11- 12 treatments of FOLFOX started
11/11- ilestomy reversed, port-a-cath removed
NED since
Mother of 3 beautiful little girls

teacher2017
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Facebook Username: Lydia Clark

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

Postby teacher2017 » Thu Jun 07, 2018 3:28 pm

Moving this thread up for new members! Read about some real success stories!
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 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18

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

Postby kellywin » Tue Jun 12, 2018 1:01 pm

I feel like it's time for me to add to this thread :D . It's been 5 years! Was diagnosed at 40, stage IIIC as you can see by my signature. Had my latest CT scan in April and still all clear. I do have to have another colonoscopy soon, BUTT happy to be here and give some positivity to all of you newly diagnosed people. It's a struggle both mentally and physically during the diagnosis phase, then the treatment phase, surgery, after effects, etc. I haven't been as active on here as I once was, life gets in the way, which is a good thing.

Positive thoughts to all who are in the midst of this...

And thanks to everyone on this board, especially long term members who have helped me and continue to help as new people start their journey here.
Kelly, mom 13 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only
7/2015 Clear colonoscopy!
4/2018 Clear CT!

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

Postby hawkowl » Wed Jun 13, 2018 1:05 am

Just saw the oncologist again and I'm still NED more than 3 years after I completed my last chemo. I don't know what tomorrow will bring, but today was a very good day :-)
Dx 12/2014 T3N2MX (iliac nodes) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.
6/2018 CEA still normal.

Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

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

Postby wwroam » Thu Jun 14, 2018 11:27 pm

Ten days early but I'm claiming 11 years before this thread disappears to page 3.
Even better, I am now 4 months in remission for NSC Lung Cancer. From inoperable to remission.
Best wishes to all
Wayne
Stage 3a DX 25/06/07
Folfox complete 30/01/08
7 years NED
Port scheduled for removal 8/02/10 Gone.
PSA .54 No prostate problems
Diagnosed Type 2 Diabetic
SO diagnosed CC Stage IV Liver Mets 23/03/15

Basil
Posts: 243
Joined: Thu Mar 16, 2017 12:33 pm

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

Postby Basil » Fri Jun 15, 2018 1:43 pm

I had my one year ct and colonoscopy this week and learned my results this morning. All clear. Scope, ct and blood all great. One down, four to go.
40 y/o male, kids 6&9
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

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Shana
Posts: 398
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Location: Sonoma, CA

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

Postby Shana » Fri Jun 15, 2018 3:03 pm

wwroam wrote:Ten days early but I'm claiming 11 years before this thread disappears to page 3.
Even better, I am now 4 months in remission for NSC Lung Cancer. From inoperable to remission.
Best wishes to all
Wayne


Awesome! Keep on NED!
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh) 5/11/18 -78 :( 5/25/18-63!!!!
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!

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Shana
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Location: Sonoma, CA

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

Postby Shana » Fri Jun 15, 2018 3:05 pm

Basil wrote:I had my one year ct and colonoscopy this week and learned my results this morning. All clear. Scope, ct and blood all great. One down, four to go.


Yay! Glad to hear your good news! NED forever and always!
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh) 5/11/18 -78 :( 5/25/18-63!!!!
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!

thubler
Posts: 46
Joined: Tue Sep 27, 2016 9:22 am

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

Postby thubler » Thu Aug 09, 2018 12:34 am

Bump
III b CC @ 35 yoa.
two primary tumors on ascending/transverse stage 1 and stage 3.
Lynch Positive
Resection 05/16
2/41 nodes +
FOLFOX 6/16-11/20/16
Clear Endoscopy and Colonoscopy 12/6/16, 02/13/18
CT 02/07/17 enlarged mesenteric node.
Clear PET 02/15/17
Stable CT 06/05/17,10/16/17,04/02/18
Deported 11/03/17

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

Postby O Stoma Mia » Thu Aug 09, 2018 10:43 am

Here is the story of a Stage III survivor -- diagnosed 16 years ago:

https://www.healthcentral.com/article/colon-cancer-survivor-carries-on-as-firefighter


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