My wife, 10 years NED - stage IV

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CBR600319
Posts: 171
Joined: Sat Nov 17, 2007 3:49 pm
Location: Winnipeg, Manitoba

My wife, 10 years NED - stage IV

Postby CBR600319 » Thu Sep 19, 2019 10:39 pm

Hello,

I used to frequent this board quite a bit back in '07-'09, as most caregivers do.. a significant amount of time has passed, and so has the need for peer support I suppose ? Anyway, just stopping by to offer some encouragement, I know that amid dealing with this shit that it's nice to read about a positive story here and there.

In a nutshell, when my wife was 28 she was diagnosed stage IV with mets to her liver, T3 N2 M1, moderately differentiated, adenocarcinoma on her right side. She was diagnosed in April 2007, had an immediate hemicolectomy, 18 consecutive rounds of Folfox (with breaks when her neutrophil count was low) over the course of a year, a second hemicolectomy, a liver resection 7 weeks after that, and another 5 rounds of adjuvent Folfox. She'd had enough in February '09 and has been NED ever since.

She's doing well, has had issues with migraines for the past 8 years or so - been through 3 neurologists, a laundry list of meds, and a handful of procedures to no avail. She still has neuropathy in her hands and feet, but doesn't seem like it bothers her too much, she also has some degree of hearing loss. All in all, she's very healthy.. Like I'd mentioned, just wanted to pop in and post an update. I used to love reading about stories like hers when she was in the thick of it...

Take care,

AL
Wife dx April/07 at age 28
R/T hemi-col. April/07
Stage IV, liver mets, T3,N2,M1
Folfox, 18 treaments
lymphadenectomy surgery, rt hemi col, liver biopsy Jul/08
Liver resection Sept 9th/08
Back on adjuvent Folfox Oct '08, 23 rounds total
Done chemo Feb 09

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ANDRETEXAS
Posts: 662
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: My wife, 10 years NED - stage IV

Postby ANDRETEXAS » Thu Sep 19, 2019 11:59 pm

Congratulations to your wife. I was taken aback when I first read the title of your post. I thought your wife was 10 years NED and then was diagnosed Stage IV. Glad I clicked on and found out the GOOD NEWS! :D You can't judge a book by its cover (in my case). Nevertheless, I'm so happy for you, your wife and your family. I hope she continues to lead the way helping others on their journeys. All the best. Andre
2/10/14 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT

3/2/15 - Clean colonoscopy & port removed
3/4 - clean CT
9/21- clean CT

3/23/16 - clean CT

2/22/17- clean CT

3/21/18 - clean CT
4/1 - clean colonoscopy

3/11/19 - clean CT
9/23 - Five-year release - Annual visits now !

4/13/23 - clean colonoscopy

ONE DAY AT A TIME !

MeAndMine
Posts: 149
Joined: Mon Aug 05, 2019 2:40 pm

Re: My wife, 10 years NED - stage IV

Postby MeAndMine » Fri Sep 20, 2019 4:17 am

Thank you for sharing your story. Congratulations to you and your wife and family!
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

zephyr
Posts: 363
Joined: Thu Aug 18, 2016 7:31 am

Re: My wife, 10 years NED - stage IV

Postby zephyr » Fri Sep 20, 2019 1:04 pm

Thanks for posting an encouraging message. Being Stage IV myself, it's always uplifting to read about others who achieved long term NED.
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: My wife, 10 years NED - stage IV

Postby claudine » Fri Sep 20, 2019 2:18 pm

That's wonderful, thank you for sharing! This gives us all hope :D
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: My wife, 10 years NED - stage IV

Postby claudine » Fri Sep 20, 2019 3:10 pm

I want to add - I really appreciate those that have come out of the tunnel (regardless of the outcome) and still visit this forum to share their experience. Thank you so much!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

Punky44
Posts: 498
Joined: Mon Oct 01, 2018 4:29 pm

Re: My wife, 10 years NED - stage IV

Postby Punky44 » Fri Sep 20, 2019 6:27 pm

Great news! Congratulations!
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4; 3.1; 3.4; 3.0; 3.1; 2.6
Latest update: 8/21/23 Clear CT with CEA 2.6!

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

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CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: My wife, 10 years NED - stage IV

Postby CRguy » Fri Sep 20, 2019 10:47 pm

HAPPY DANCE and Harmony !
Here's to NED !!!!!!

Cheers and best wishes
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: My wife, 10 years NED - stage IV

Postby DarknessEmbraced » Sat Sep 21, 2019 7:33 am

Congratulations to your wife! :) That's wonderful news! :D
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

mymom
Posts: 1299
Joined: Fri Aug 12, 2011 11:07 pm
Location: Connecticut

Re: My wife, 10 years NED - stage IV

Postby mymom » Sat Sep 21, 2019 10:01 pm

Wonderful news!!!!!!!!
Stage 4 CC DX 5/11
colon/livr rsct 5/11(1 met)
Folfox July-11/11
NED to 5/12
New Primry BC-4/12,Stage 1
2 livermet 5/2012
Liver rsct,HAI 6/12,Folfiri
NED to 10/13,1 liver met,ablation, Folfiri
NED to 12/14, another spot
3/15 NED
Ablation 1 liver met 10/15
1/16-current NED
6/22- small spot liver again, ablation oct 2023

boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: My wife, 10 years NED - stage IV

Postby boxhill » Sun Sep 22, 2019 7:26 pm

Thanks for posting!
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

tater
Posts: 133
Joined: Wed Jul 19, 2017 5:53 pm

Re: My wife, 10 years NED - stage IV

Postby tater » Sun Sep 22, 2019 9:27 pm

Thank you for posting I pray nightly that my young stage four wife will follow your story. Thanks for the hope
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 Coloanal Anastomosis, Hysterectomy & External Nodes Removed W/ileostomy
Clear Margins NED
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18, 1.3 12/18, 1.8 3/19, 2.5 6/19
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18
Small Spot on right ureter surgery 10/30/19 adhered to artery
Dec. 2 start 12 rounds FOLFIRI

Koreysue
Posts: 258
Joined: Mon Apr 30, 2018 2:36 pm

Re: My wife, 10 years NED - stage IV

Postby Koreysue » Sun Sep 22, 2019 10:12 pm

I really appreciate you posting this!
So awesome to hear :D
Dx: 6/2017 stage 3 CC
Sigmoid, 2 nodes
CEA at dx: 6.1
Sigmoid Colectomy/folfox (last chemo (1/31/18)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/18 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/19 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 12/1/20 CEA: 3.5
CEA 5/21 4.2
CEA 10/21 3.4
colonoscopy 10/21 10mm polyp
CEA 4/22 3.7
CEA 7/22 3.8
CEA 12/22 4
CEA 1/22 3.2 and NED 5yr scan

Siti
Posts: 269
Joined: Thu Aug 01, 2019 10:58 am

Re: My wife, 10 years NED - stage IV

Postby Siti » Mon Sep 23, 2019 4:27 am

Thank you for sharing! It’s always nice to hear good news and encouraging to all the stage 4 survivors.
DH (54) DX on 5/7/19
Sigmoid|G3|LN:30/31|MSS|WT KRAS, NRAS, BRAF
7/19 PET distant LN para-aorta neck hip (0.5-1.5cm)
7/19 Lap resection
26/8 to 20/12/19 CAPEOX+Bev 7x
6/11/19 CT 3 cycle LN shrunk
1/20 Cap+Bev
4/20 TS-1+Bev due to bad HFS
NED 4 years
8/23 PET recurrence chest LN growing since Feb. CEA May(4.5>5.1>5.9)
9/23 Stopped Bev, CEA Sept(8.7) Radio 17x
11/23 PET 1+ supraclavicular LN, CEA (3.4>2.5)
12/23 Lymphadenectomy
1/24 Narrow margins, 1/5 +LN, 1.4cm +tissue, TMB (19)

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SilverWedding
Posts: 71
Joined: Sat May 18, 2019 5:54 am
Facebook Username: Cynthia Harding Marshall

Re: My wife, 10 years NED - stage IV

Postby SilverWedding » Thu Sep 26, 2019 11:08 pm

Encouraging! Congratulations!!!!
DH, 56, Sigmoid & rectum
Adenocarcinoma 2cm
 G2: Moderately differentiated
T3N2aM0
Stage IIIb
LN 6/22
5/19 Baseline CEA value - 18.9
Lymphovascular invasion (LVI): present
Perineural invasion (PNI): not identified
Surgical margins: proximal -negative; distal - negative 1.5cm; circumferential - negative 1mm)
MSI status: Waiting‬
Lynch status: ?
KRAS/BRAF: ?
Open Restorative Proctectomy, J-Pouch Coloanal Anastomosis, Loop Ileo w/Appendectomy
Neo-adjuvant Xeloda/radiation
Adjuvant Chemo: to begin 11/19


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