6 years NED after stage IV

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Ehut
Posts: 188
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

6 years NED after stage IV

Postby Ehut » Mon Jul 09, 2018 10:27 am

Hello all,

Just thought I'd share that I had a CT scan last week and am still NED. I have been NED for 6 years now, and my surgeon suggested this be the last scan I need since nothing has been found by now. I truly empathize with the other board members with less successful outcomes, and hopefully this post offers hope to some of you. I remember hoping against the odds back in late 2011 and 2012 that I would be one of the "lucky" ones, and it appears I now am.

Blessings and well wishes to all,
Dave (Ehut)
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!

Trying
Posts: 51
Joined: Sun May 13, 2018 10:11 pm

Re: 6 years NED after stage IV

Postby Trying » Mon Jul 09, 2018 11:21 am

I love hearing stories like this.
38 yr old single mom of almost 2 yr old.
Colon cancer stage IV 10 liver mets April 2018
Folfox as of June 2018

mpbser
Posts: 471
Joined: Wed Apr 19, 2017 11:52 am

Re: 6 years NED after stage IV

Postby mpbser » Mon Jul 09, 2018 11:46 am

Thank you for posting. I am curious how many nodes were cancerous as my husband is/was Stage IVa with one met to the liver but quite a high number of nodes involved.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

Rikimaroo
Posts: 138
Joined: Tue Dec 20, 2016 8:48 pm

Re: 6 years NED after stage IV

Postby Rikimaroo » Mon Jul 09, 2018 12:41 pm

what kind of lifestyle changes did you make? Congrats on being ned
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Local Recurrence, discuss options 11/26/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/15/2017, folfox/oxapalatin + avastin starts on the 12/20/2017
Blood Clot in Neck 1/16/2018, stop avastin, continue FolFox
TME/Liver Resect 4/3/2018
Biopsy Results 0/8 Lymph nodes clear, margins not clear, CEA now .8,
Chemo Finish 8/15/2018
Reversal October 17th 2018

Ehut
Posts: 188
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

Re: 6 years NED after stage IV

Postby Ehut » Mon Jul 09, 2018 1:02 pm

mpbser wrote:Thank you for posting. I am curious how many nodes were cancerous as my husband is/was Stage IVa with one met to the liver but quite a high number of nodes involved.


2 of 45 nodes were positive. The liver had 6 tumors, and all were removed surgically.
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!

Ehut
Posts: 188
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

Re: 6 years NED after stage IV

Postby Ehut » Mon Jul 09, 2018 1:09 pm

Rikimaroo wrote:what kind of lifestyle changes did you make? Congrats on being ned


I started out taking several supplements: Cimetidine, Coriolus Versicolor PSK, modified citrus pectin, 81 mg aspirin, vitamin C, multivitamin, and psyllium husk fiber. Now I only take aspirin, CoQ10 Ubiquinol, and psyllium husk fiber. As far as diet and exercise, I didn't change much. I drink less soda pop and a bit less sugar overall, but I haven't cut it out entirely. I try to walk for at least a half hour each day also.
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!

Rikimaroo
Posts: 138
Joined: Tue Dec 20, 2016 8:48 pm

Re: 6 years NED after stage IV

Postby Rikimaroo » Mon Jul 09, 2018 1:16 pm

Thanks Ehut, Thats awesome information and really appreciate it. I only had one liver met, but always and still nervous about recurrence. I pray that I have your luck. I have 3 little ones that need there Dad around.
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Local Recurrence, discuss options 11/26/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/15/2017, folfox/oxapalatin + avastin starts on the 12/20/2017
Blood Clot in Neck 1/16/2018, stop avastin, continue FolFox
TME/Liver Resect 4/3/2018
Biopsy Results 0/8 Lymph nodes clear, margins not clear, CEA now .8,
Chemo Finish 8/15/2018
Reversal October 17th 2018

Ehut
Posts: 188
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

Re: 6 years NED after stage IV

Postby Ehut » Mon Jul 09, 2018 1:47 pm

Rikimaroo wrote:Thanks Ehut, Thats awesome information and really appreciate it. I only had one liver met, but always and still nervous about recurrence. I pray that I have your luck. I have 3 little ones that need there Dad around.


I know the feeling. My daughter was only 19 months old when I was diagnosed. I remember thinking how much I wanted to be there for her, to see her graduations, maybe walk her down the aisle someday. We added another daughter to our family last year. For the first 2-3 years after diagnosis, I was afraid to expand the family in fear that it might be another child without a father. Most of those fears are gone now.
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!

Deb m
Posts: 430
Joined: Tue Jan 14, 2014 10:08 am

Re: 6 years NED after stage IV

Postby Deb m » Mon Jul 09, 2018 2:29 pm

Wow! That's great. So happy for you.

deb m

Gravelyguy
Posts: 39
Joined: Thu Jul 05, 2018 6:03 pm

Re: 6 years NED after stage IV

Postby Gravelyguy » Mon Jul 09, 2018 2:45 pm

Thanks for the update. It is so encouraging hearing from people farther along on this path!


Dave
Last edited by Gravelyguy on Tue Jul 10, 2018 10:17 am, edited 1 time in total.
6/17 dx mCRC t3n1m1 very low rectal tumor 2 very small liver Mets

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection
11/17-3/18 8 rounds Folfox
6/18 NED!! Takedown
8/28/18 still NED! CEA .8 new low for me

tater
Posts: 72
Joined: Wed Jul 19, 2017 5:53 pm

Re: 6 years NED after stage IV

Postby tater » Tue Jul 10, 2018 8:38 am

so good to hear stories like this. thank you for sharing and congrats on the 6 years.
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 LAR, 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
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18

User avatar
LPL
Posts: 410
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: 6 years NED after stage IV

Postby LPL » Tue Jul 10, 2018 12:13 pm

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?
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

KathyLynn
Posts: 52
Joined: Thu Aug 31, 2017 3:40 pm
Location: Rock Hall, MD

Re: 6 years NED after stage IV

Postby KathyLynn » Tue Jul 10, 2018 12:25 pm

Congratulations!! I’m so glad you are moving on with your life!
Enjoy your family and enjoy your life!
8/2017. RC
11/27/2017. Robotic LAR
12/2017 Moderatley differentiated, 3.0 cm in greatest dimension
Macroscopic tumor perf: not identified. All margins of resection and proximal neg for tumor. Distal anastomotic ring: Neg for tumor
Lymphovascular and perineural invasion: not identified. Tumor deposits: not identified
Lynch : Negative Margin proximity: proximal: 27.0 cm. Distal: 2.0 cm. Radial: 2.5 cm
#of possible lymph nodes: 33. 0/15
1/13/2018. T2N0M0 with isolated tumor cells (ITC)
7/12/2018. CEA 2.0.

boxhill
Posts: 118
Joined: Fri Apr 06, 2018 11:40 am

Re: 6 years NED after stage IV

Postby boxhill » Tue Jul 10, 2018 5:24 pm

Thanks so much for posting. It definitely gives the rest of us hope!

And congratulations, too. :)
F, 64 at DX CRC Stage IV (or "3 1/2" per Dana Farber consult, LOL)
3/17/18 blockage, emergency surgery, r hemicolectomy
11 of 25 nodes
5 of 5 mesentery nodes, matted
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
Neg CEA, neg BRAF, KRAS G12D, germline mut ATM
dMMR, MSI-H, Neg for Lynch
5/4/18 FOLFOX started
Added Neulasta 6/28/18
7/9/18 CT scans show no masses or enlarged nodes, 2mm indeterminate lung nodule

[Ana & Alex]
Posts: 96
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Re: 6 years NED after stage IV

Postby [Ana & Alex] » Wed Jul 11, 2018 12:03 am

I'm having days with awful nightmares and I struggle with anxiety - with peaks and then with moments, where I forget that I had cancer... your head really plays tricks on you, even when one is feeling good and trying to move on from cancer.

Thank you so much for sharing this. It gives me hope that I still may have more quality time with my family - which is really the only thing that I really really want. And it helps me manage my anxiety.

I wish you all the best and here's to a lifelong NED :)

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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