6 years NED after stage IV

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Beccaschocked
Posts: 30
Joined: Mon Oct 30, 2017 7:33 pm
Facebook Username: Becca Fender schock

Re: 6 years NED after stage IV

Postby Beccaschocked » Wed Jul 11, 2018 8:33 am

Congrats and thank you so much for sharing. It is always so encouraging to hear from long time survivors!
Dx @ 32, mom to 6 week old and 2 year old (now 3 & 5)
3/2015 stage IV colon cancer Mets to liver. CEA > 8,000.
4/2015- June 15; 3 infusions folfoxiri +avastin, 4 infusions folfox
7/2015 colon & liver resection followed by 6 infusions of folfiri
1/2016-5/2017 NED (5mm lung nodule stable)
10/2017- growing lung nodule 12mm from 5mm-Confirmed recurrence - CEA 2.5
11/2017- lobectomy- no chemo
1/2018- CT & PET back to NED. CEA 1.3; 1.4; 1.2; 1.2.
7/2018- Clear scan NED

dliu
Posts: 33
Joined: Sun Jun 03, 2018 7:16 am

Re: 6 years NED after stage IV

Postby dliu » Wed Jul 11, 2018 4:33 pm

That's fantastic news Dave, thanks so much for sharing and congratulations!
Caring for my mum, 65
Sigmoid resection, multiple liver mets
09/05/2018 Dx Stage IV, 6/11 LN - KRAS G12V
28/05/2018 First round of FOLFOX + Avastin

CEA down from 6000+ (05/2018) to 843 (08/2018) to 377 (11/2018)
9/10 rounds with Oxaliplatin
8/10 rounds with Bevacizumab

JulesW
Posts: 9
Joined: Thu Jun 21, 2018 1:48 pm

Re: 6 years NED after stage IV

Postby JulesW » Wed Jul 11, 2018 7:52 pm

That's great news Ehut.
Dx at 46 rectal ca. 12/16
CT scan 1/17 4 spots R upper lung largest 8 mm
f/u CT scan 4/17 showed spots in lung stable
LAR 1/17 rectal tumor stage 2b, 0/30 nodes pos
Xeloda x 6 mos
CT 6/18 - 4 nodules right upper lung had inc. in size, also 3 new spots in left lower lung
6/18 folfiri + Avastin x 5 cycles
radiation onc and surgeon say too many nodules
LAPM Germany 10/18 - 10 nodules removed right lung, 4 cancer
11/1/18 R pneumothorax - chest tube placed surgically
11/6/18 planned LAPM for L lung

Ehut
Posts: 193
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

Re: 6 years NED after stage IV

Postby Ehut » Thu Jul 12, 2018 9:45 pm

LPL wrote:Ehut, Thank you so much for posting and Big Congratulation to you!! :D
It is wonderful to see members here coming back to share good News.
Can I ask if you know if your tumor(s) had any mutations and/or MSI/MSS status?


It's been so long I don't even remember the mutation status. I tried to access my old records online, but the provider's system was recently "upgraded" and apparently some of those reports weren't converted correctly. I'll reply to this if and when I get the answers.
Dx 12/11 rectal stage IV w/ 6 mets to liver, age 35
4 cycles FOLFOX 12/11 to 2/12
short course radiation 2/12
rectal/liver resection 3/12, temp ileostomy
8 cycles FOLFOX/FOLFIRI 4/12 to 8/12
ileostomy reversal 10/12
port out 10/13
NED for 6+ years and counting!

User avatar
LPL
Posts: 411
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: 6 years NED after stage IV

Postby LPL » Fri Jul 13, 2018 2:57 am

Ehut wrote:
LPL wrote:Ehut, Thank you so much for posting and Big Congratulation to you!! :D
It is wonderful to see members here coming back to share good News.
Can I ask if you know if your tumor(s) had any mutations and/or MSI/MSS status?


It's been so long I don't even remember the mutation status. I tried to access my old records online, but the provider's system was recently "upgraded" and apparently some of those reports weren't converted correctly. I'll reply to this if and when I get the answers.

Ehut, oh I didn’t mean to give you extra work.
My husband is KRAS mutant and I know there is a discussion titled:
”KRAS mutation - any one long term NED?”
viewtopic.php?f=1&t=59608&p=473429#p473429
I just wondered if you had that mutation.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

DarknessEmbraced
Posts: 3155
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: 6 years NED after stage IV

Postby DarknessEmbraced » Mon Jul 16, 2018 10:11 am

Congratulations! :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

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

Re: 6 years NED after stage IV

Postby Caat55 » Mon Jul 16, 2018 10:17 am

Wonderful. Thank you for sharing your news.
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

Sammy2067
Posts: 13
Joined: Wed Jul 18, 2018 9:38 pm
Facebook Username: Laban Sam DeFriese

Re: 6 years NED after stage IV

Postby Sammy2067 » Tue Jul 24, 2018 3:23 pm

Thats great news! Hearing positive results makes a difference and is very helpful! Thanks for posting
51
1-15-16 to 3-22-18: On and off Rectal Bleeding
3-22-18: CSoscopy Rectal Can
4-8-18: MRI: T3(c) N0 M0
5-4-18 Short Course RT 5 days
5-13-18: Robot Lap LAR TME
5-20-18: Nodes: 0/21 LVI: present, Perinerral Invasion: Present, All Margins: Negative
5-21-18 Stage 2a
5-25-18: Oncol discuss if Chemo needed for Stage 2a. 3 months Capox
7-01-18 Oxy cause vomiting/Nasea.
7-06-18: Oncolt discontinued Oxy
7-23-18: Xeloda Monotherapy
7-23-18: CEA post surg .5, CA19-9 2.9

lakeswim
Posts: 85
Joined: Sat Mar 31, 2018 9:37 am

Re: 6 years NED after stage IV

Postby lakeswim » Thu Aug 23, 2018 10:00 pm

Such heartening news. Thanks for sharing and so happy for you!
49 - F
RC - dgns March '18 (colonoscopy aftr 6 mos blood in stool)
Adenocarcinoma
10-11 cm from anal verge
T4N0M0
Stage 2
Started FOLFOX May '18 (8 rounds total chemo - then 6 wks chemo/rad - then surgery)


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