My wife - Stage IV survivor, 9 years NED.

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

My wife - Stage IV survivor, 9 years NED.

Postby CBR600319 » Tue Mar 27, 2018 9:21 am

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 very well, has had issues with migraines for the past 7 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.

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

lovelife789
Posts: 160
Joined: Thu Aug 24, 2017 5:28 am

Re: My wife - Stage IV survivor, 9 years NED.

Postby lovelife789 » Tue Mar 27, 2018 11:03 am

Thank you so much for coming back to give us hope!!! It definitely helped to read your wife's story.

Do you mind sharing with us were those liver mets significant? (I.e. Size and number of mets)?

Your wife is so brave to have taken 23 rounds of folfox!!!! Did she have any targeted therapy or was it not available then ?

My goodness, I had 13 rounds of folfox with 6 of them done with erbitux... by the 13th round of folfox I was pretty wiped out...I can't imagine 23 rounds... bravo!
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild
3/17- 6/17 - 6 x FOLFOX + Erbitux
7/17 - 1st & 2nd Liver resec
9-12/17' - 13 x FOLFOX
1-6/18 - NED
6/18 - PET SCAN showed a 0.8mm lung nodule, VATs
8/18 - 4/19 - NED
5/19 - recurrence 1 x PALN, 1x common iliac
FOLFIRI + Avastin x 12 - complete response, SBRT
12/19-5/20 - NED
5/20 - recurrence in LNs, tiny liver spots x 2, W n W due to COVID
8/20 - LNs very slightly increased, liver stable, one new liver spot

Brearmstrong
Posts: 100
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: My wife - Stage IV survivor, 9 years NED.

Postby Brearmstrong » Tue Mar 27, 2018 1:20 pm

My gosh she was so young. I can't imagine how scary that must have been for both of you. Thank you so so much for coming back on the forum to provide the hope we are all seeking. I'm happy to hear she's been NED for 9 years!!!!
48 F Jan 17 2 sons
tumor appendix/colon
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery <.05
KRAS G12D MSS
FOLFOX Apr-sep 17
Clean CT Jul 2017, oct 17, CEA 3.4, 8.1. May 18 2.3,1.0,1.3, 1.3, 1.0, 2.3, 2.2, 2.1,2.2,1.6,1.4,1.5,2.8,2.2
Oct 2017 clean CT
Nov 17 PET para aortic nodes Stage IV
Folfori w/avastin Dec 17
May 18- surgery on nodes xeloda continues
Aug 18-CT NED Clear CT's Nov 18-May 20
July 20- it’s back! Rt ovary Full hysterectomy CEA 1.7 chemo break

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

Re: My wife - Stage IV survivor, 9 years NED.

Postby CBR600319 » Tue Mar 27, 2018 5:04 pm

As a caregiver (can't speak for the people who are patients themselves) it always gave me a lot of hope knowing that there were some people who made it. I do understand that there are some folks who are facing certain situations that find these posts hard to read, and I feel for them..

lovelife, she had 3 liver mets, I can't remember their exact size but I think they were relatively small, maybe 7-10mm each ? I'd have to search through my old posts. We live 12 miles North of the Cdn/US border, with our "free" (don't get me started) healthcare system, targeted therapy wasn't an option. I think RFA might have been an option, but HAI pumps weren't available. The only reason she was getting Folfox was because it was offered on a clinical trial.

The trial she was on was testing Erbitux, but she was in the control group and didn't get it. I remember talking to a lot of people here on the CC and hearing that it was a tough drug. Kudos to you for getting through it !

Brearmstrong ya, it was quite the surprise. Our oldest at the time was 14 months, and our youngest was a newborn at 6 days old when she had her first hemicolectomy. She'd had abdominal pain for three months prior & her obstetrician just thought it was gas pain associated with her pregnancy. Unfortunately, that's not what it was..
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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CRguy
Posts: 10285
Joined: Sun Feb 10, 2008 6:00 pm

Re: My wife - Stage IV survivor, 9 years NED.

Postby CRguy » Wed Mar 28, 2018 12:30 pm

Hey homie !!!
It has been a while ... BUTT many thanks for checking back in with us.

Continued best wishes to you, your wife and family.

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

Ranunculaceae
Posts: 5
Joined: Thu Dec 28, 2017 10:49 am

Re: My wife - Stage IV survivor, 9 years NED.

Postby Ranunculaceae » Wed Mar 28, 2018 5:43 pm

Thanks for posting! It's really great to hear that she is NED and doing well, hoping for the same once I'm done another 5 cycles of chemo!
34 year old female
Stage IV Colon Cancer Aug 23, 2017
Adenocarcinoma of the right ascending colon with extensive lymph node involvement and a solitary liver metastasis.
Preop chemo starting with 2 cycles of CAPOX in Sept 2017 (hospitalized for reaction to Capecitabine) switching to FOLFOX with panitumumab x 6 cycles.
Open hemicolectomy and liver resection Feb 1, 2018. Nearly complete response, scattered tumor cells at primary tumor site and in 2/32 lymph nodes.
Ongoing FOLFOX for 6 more cycles.

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

Re: My wife - Stage IV survivor, 9 years NED.

Postby CBR600319 » Thu Mar 29, 2018 7:27 pm

Hey CRguy !!! Glad to see you're still hanging around over here ! Hope life hasn't been too hard on you since we last chatted ? How are things ? Man, coming back here unleashes a tidal wave of memories, going through my old private messages & posts... kinda hard actually, reminds me of what we went through (and continue to deal with). But, all in all.. we're doing very well over here :-)

April 24th will be 11 years since she was dx'd... wow.. Any other '07ish Alumni still hanging around these parts CRguy ?

Ranunculaceae, keep plugging away !! The finish line is right there :-)
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

User avatar
CRguy
Posts: 10285
Joined: Sun Feb 10, 2008 6:00 pm

Re: My wife - Stage IV survivor, 9 years NED.

Postby CRguy » Fri Mar 30, 2018 12:49 am

Hey buddy
YES I am still kickin' BUTT and takin' names :twisted: :shock: :mrgreen: :!:

sadly a few friends from back in the day are no longer here with us
many MORE I am happy to say have been thru the Journey and moved on with their lives, BUTT no longer post here :cry:
... AND ..... some homies have moved on to bigger and better levels of activism for the CAUSE !

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

Mystimom
Posts: 5
Joined: Fri Mar 30, 2018 12:42 am

Re: My wife - Stage IV survivor, 9 years NED.

Postby Mystimom » Fri Mar 30, 2018 1:03 am

Brearmstrong wrote:My gosh she was so young. I can't imagine how scary that must have been for both of you. Thank you so so much for coming back on the forum to provide the hope we are all seeking. I'm happy to hear she's been NED for 9 years!!!!



Hi! I noticed your profile is similar to mine... tumor just found during colonoscopy and perforated my appendix. Now undetermined cells in my abdominal cavity. I just turned 51, and live in Connecticut too. Starting chemo tomorrow...he we go!

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: My wife - Stage IV survivor, 9 years NED.

Postby mpbser » Fri Mar 30, 2018 11:11 am

Awesome post! Thanks for sharing!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

Nicolouna
Posts: 39
Joined: Fri Nov 08, 2013 6:30 pm

Re: My wife - Stage IV survivor, 9 years NED.

Postby Nicolouna » Thu Apr 12, 2018 2:26 am

Thanks for sharing and giving me hope ❤️❤️❤️❤️
Dx @ 27yo, female w colon cancer (T4N0M0)
Aug 2013: R hemicolectomy
FOLFOX: Oct 2013-April 2014, NED
May 2016: had a baby ❤️
June 2017: L ovary met, surgical removal
July 2017: pancreatic met
Aug 2017: FOLFIRI
Dec 2017: Whipple’s. 1/36 nodes+
May 2018: 12 FOLFIRI done, NED
Sept 2018: abnormal cyst R ovary - surgery, no cancer (false alarm)
Dec 2019: abdo wall met, resected, clear margins
Oct 2020: new primary colon ca (T4N0), partial colectomy
Nov 2020: XELOX reaction, converted to FOLFOX

User avatar
HopeForJesse
Posts: 249
Joined: Wed Feb 24, 2016 9:39 am
Location: Philadelphia

Re: My wife - Stage IV survivor, 9 years NED.

Postby HopeForJesse » Sun Apr 15, 2018 4:40 pm

Thanks for the hope (needed this today :) ) and congrats!
DH DX 01/16 49 YO inop RC stage IV liver mets
MSS TP53 APC,BRCA2
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
5/18 5 days SBRT radiation to sternum 10/22/18 surgery to remove zyphoid process met
6/11/19 5FU added to cetuximab and irinotecan CEA 16
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

tater
Posts: 128
Joined: Wed Jul 19, 2017 5:53 pm

Re: My wife - Stage IV survivor, 9 years NED.

Postby tater » Wed Apr 18, 2018 12:42 pm

Thanks for the post and hope. I too am a care giver to a wife dx at 38 with stage four rectal cancer. We are preparing for our second scan post surgery and NED. Starting to get anxious but hope to have good news in two weeks.
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


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