9 months NED after 5 years stage IV

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stevieb
Posts: 400
Joined: Sat Feb 09, 2013 12:26 am

9 months NED after 5 years stage IV

Postby stevieb » Thu Feb 15, 2018 1:24 pm

I received my third consecutive clear scan this past Monday. That makes 9 months NED! This is the longest run of NED that I have had in the past 5+ years (since diagnosis). I will continue on Adapt with Avastin for three more months and scan again in May. This is really incredible news! Thanks for all your support over the years!
Dx age 33
12/19/12 Stage IV liver/lung
1/14-2/28/13 Folfox
3/27/13 rectal/lung rst; temp ileo
7/11/13 liver res/ileo rev
9/30/13 - Folfox
11/13,2/21 NED
3/14 lung recur;6/16-VATS
7/14 5 bi lung mets
10&11/15 laser lung surg
2015 Colondar Model
12/15 5 lung met-folfiri
5/15 NED
11/15 2 lung mets; cryoablation
1/4/17 2 lung mets; cryoablation
NED as of 1/23/17

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Jack&KatiesMommy
Posts: 519
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: 9 months NED after 5 years stage IV

Postby Jack&KatiesMommy » Thu Feb 15, 2018 2:24 pm

That is FANTASTIC Steve!!!!!!!!!!!
Cynthia
Cynthia
Mommy to Jack (8) now (15) and Katie (4) now (11)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection!
8/13; 10/13; 12/13; 3/14; 8/14; 11/14; 2/15; 7/15; 12/15 RFA lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new mets lymph nodes in hilar/lung:
05/18: Started Keytruda (MSS but moderate mutation burden): CEA: 66.4, 39.2, 23.8, 13, 3.5 NOW 1.8
08/18 Clear CT scan

LisaMargo
Posts: 21
Joined: Sun Feb 26, 2017 10:26 pm

Re: 9 months NED after 5 years stage IV

Postby LisaMargo » Thu Feb 15, 2018 3:32 pm

Congrats Stevie, that’s awesome news. Long may you live in NEDville.
Best wishes
LM
20 feb 17 Went in for a colonoscopy, woke up with cancer
21 feb 17 LAR descending colon, Stage 3c
27 mar 17 port in
29 mar 17: 12 sessions FOLFOX.
51 yo F, married with 3 teenage girls

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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: 9 months NED after 5 years stage IV

Postby Shana » Thu Feb 15, 2018 6:12 pm

stevieb wrote:I received my third consecutive clear scan this past Monday. That makes 9 months NED! This is the longest run of NED that I have had in the past 5+ years (since diagnosis). I will continue on Adapt with Avastin for three more months and scan again in May. This is really incredible news! Thanks for all your support over the years!


Congratulations! Thank you for sharing your great news, it's always wonderful to hear positive stories!
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
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

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Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: 9 months NED after 5 years stage IV

Postby Robino1 » Thu Feb 15, 2018 6:28 pm

Congratulations! Way to keep fighting :D
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

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CRguy
Posts: 9614
Joined: Sun Feb 10, 2008 6:00 pm

Re: 9 months NED after 5 years stage IV

Postby CRguy » Thu Feb 15, 2018 7:55 pm

Keep racking up those milestones !

Cheers for NED
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

AussieAssCancer
Posts: 248
Joined: Sat May 21, 2016 10:16 am

Re: 9 months NED after 5 years stage IV

Postby AussieAssCancer » Thu Feb 15, 2018 9:06 pm

Great news!! Here’s to many more milestones like it, each one longer and longer
Dx Oct '15 w/ Stage 3c RC
Nov '15 - Jan '16: 3x FOLFOX and 5wks Chemoradiation w/ Xeloda
March '16: ULAR w/ temp ileostomy
Complete pathological response incl 0/12 nodes
April '16: Clear CT (NED)
May - Aug '16: 9x FOLFOX (dropped Oxaliplatin for final Rd due to neuropathy)
Dec '16: Clear CT (NED)
Feb '17: Ileostomy reversed
Aug '17: Clear CT (NED)
Feb ‘18: Clear CT (NED)

Blog: kickingrectalcancerintheassblog
https://kickingrectalcancerintheassblog.wordpress.com/

Canada777
Posts: 57
Joined: Mon Mar 28, 2016 6:24 pm

Re: 9 months NED after 5 years stage IV

Postby Canada777 » Thu Feb 15, 2018 9:47 pm

Congrats! Stories like yours give me hope :)
DH dx. Stage 4 Colon cancer with Peri mets Dec '15 @ age 29
12 Rounds FOLFOX Jan-June 2016
4 month chemo break. Still only Peri mets.
Successful HIPEC Oct. 2016. Diagnosis changed to appendix cancer.
Recurrence to pelvis. FOLFIRI Sept 2017-June 2018.
Radiation 5 days.

behconsult
Posts: 228
Joined: Fri Jul 04, 2014 4:53 pm

Re: 9 months NED after 5 years stage IV

Postby behconsult » Fri Feb 16, 2018 5:44 am

Awesome news! May the NED scans continue forever. B
Stage 3B Age 52
T4; 2/16; spot on perit
Resctn 6/9/2014
Folfox strt 7/2014. 6 of 12 tx
Chemo induced DM2
Pet 4 mets to lung (1 cm, 6 mm) Xeloda/Avastin 9/16 to present.
Cryo-ablation to three spots- Collapsed lung/chest tube 5/17. One more spot to go.

Ron50
Posts: 665
Joined: Fri Feb 10, 2006 7:04 pm

Re: 9 months NED after 5 years stage IV

Postby Ron50 » Fri Feb 16, 2018 7:16 am

My best wishes for your continued ned status Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

Deb m
Posts: 431
Joined: Tue Jan 14, 2014 10:08 am

Re: 9 months NED after 5 years stage IV

Postby Deb m » Fri Feb 16, 2018 8:39 am

It's been a long road for you and you have proven to be a fighter. So glad the fight is paying off. Hope it's NED from here on !.

SweetC80
Posts: 103
Joined: Fri Sep 01, 2017 1:28 pm

Re: 9 months NED after 5 years stage IV

Postby SweetC80 » Fri Feb 16, 2018 10:06 am

That's amazing!!! So happy for you. Can't wait to see your update for your next clear scan!!
My Mom
12/16 Stage IIIb Rectal Ca CEA 1.2
1/17-2/17 Chemoradiation CEA 4.4
5/17 Entire Colon, Rectum & Anus removed Perm Ileostomy Bag
7/17 FOLFOX
9/17 Stage IVb 9cm Liver Met & 7mm Lung Nodule CEA 197
9/17 FOLFIRI CEA 160
10/17 Confirmed KRAS Pos CEA 210
11/17 Met growths Liver 10cm & Lung 8mm CEA 425
12/17 FOLFOX again Met growths Liver 13cm & Lung 1cm CEA 405
12/17 Xifaxan due to Hepatic Encephalopathy
12/17 New 2cm liver Met
1/18 CEA 992
2/8/18 Passed Peacefully

AppleTree
Posts: 224
Joined: Fri Mar 18, 2016 8:16 am

Re: 9 months NED after 5 years stage IV

Postby AppleTree » Fri Feb 16, 2018 10:13 am

I am very happy for you! Hold steady!
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper right lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July PET...CLEAR!

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DBF
Posts: 300
Joined: Fri Jun 07, 2013 1:44 pm
Facebook Username: https://www.facebook.com/#!/profile.php?id=1000008
Location: New York

Re: 9 months NED after 5 years stage IV

Postby DBF » Sat Feb 17, 2018 10:14 pm

Woohoo! Great news!!
6/13 Dx @ 29 Wks pregnant, 42 yo
Adenocarcinoma, mucinous features
7/13 C-sec/col resec/part. hysterectomy
8/13 Pulm embolism
8/13 Liv met
9/13 Liv resect
FOLFOX
CEA UP
ADAPT: Xeloda/Celebrex
2/14 oopherectomy
10/15 obstruction surg
10/17 Scar tissue removal/vsg surg
NED :D
Mom to 3 boys: 20, 8 & 5

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HopeForJesse
Posts: 244
Joined: Wed Feb 24, 2016 9:39 am
Location: Philadelphia

Re: 9 months NED after 5 years stage IV

Postby HopeForJesse » Sun Feb 18, 2018 3:25 pm

Big congrats and thanks for sharing the HOPE!!
DH DX 01/16 49 YO inop RC stage IV liver mets
MSS, mod dif adenocarcinoma, high grade dysplasia, 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
4/18 CEA 87 :( 5/18 5 days SBRT radiation to sternum CEA declining again 6/13/18 21.1
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!


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