7 years NED, stage 4

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radnyc
Posts: 282
Joined: Tue Apr 06, 2010 6:32 pm

7 years NED, stage 4

Postby radnyc » Fri Sep 29, 2017 6:11 pm

Clear CT scan. I asked doc if we could stop the yearly tests, he left it up to me. He likes to go for 10 years with his patients. I told him I'd think about it. Been on here since 2010, a lot of people have passed on, but, it seems more of us are staying around longer. A good sign. Health and peace to all, those still in the battle DON'T GIVE UP!

Al
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

C2WAVE2
Posts: 25
Joined: Sun Apr 23, 2017 3:22 pm

Re: 7 years NED, stage 4

Postby C2WAVE2 » Fri Sep 29, 2017 6:29 pm

Great news! and inspiring for others!
4/24/17. 55yr Male, Dx RC near Retcum/Sigmoid junction
O4/28/17 Ct
O5/04/17 MRI
Prelim. T1 N0 M 0 CEA 3.2
O5/23/17 Surgery, LAR 4.5" incision to remove tumor Temp Ileostomy
6/1/17 Pathology report 6.5 x 4.3 x 1.7 cm tumor, Adenocarcinoma,
Moderately to Poorly Differentiated , 0/27 Lymph, T2N0M0
08/02/17 Ileostomy Reversal

Ron50
Posts: 628
Joined: Fri Feb 10, 2006 7:04 pm

Re: 7 years NED, stage 4

Postby Ron50 » Fri Sep 29, 2017 6:36 pm

Hi Al,
Congratulations on the seven years. I'm out to twenty next January. I no longer have scans or cea tests though I asked for one this year. It came back as <than 0.5. I still have scopes on a regular basis. I had one in April . It was a little over three years since the previous one . They removed four polyps , the largest was 11 mm. Enjoy your survival but please stay vigilant, All the best , Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

Luckydi
Posts: 2
Joined: Mon Sep 25, 2017 6:42 pm
Location: Bc, canada

Re: 7 years NED, stage 4

Postby Luckydi » Fri Sep 29, 2017 6:41 pm

Al and Ron you are both very inspiring, thank you for posting, stay fit and have fun.
Aug 2016 1st colonscopy after FIT test of 72
Dx aug 2016, cea 0.5
Sept 2016. Lap colon sigmoid resection, easy recovery
Pathology: T1N0M0, size 1.8 x 1.5 x 0.6 cm
No lymphovascular or perineural invasion
0 of 11 nodes positive (1 short of 12), no chemo
Sept 2017 colonscopy 1 rectal polyp removed, now NED
Surveillance 3 month CEA, yearly US and chest X-ray

lovelife789
Posts: 21
Joined: Thu Aug 24, 2017 5:28 am

Re: 7 years NED, stage 4

Postby lovelife789 » Sat Sep 30, 2017 10:57 am

This is so awesome, I live to see all these good news coming in every week!
F/38 - Dx 8 Mar 17, CEA 80.5
Stage 4 Sigmoid Colon, 6 Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Moderately differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17- 8/17 - 2-stage Liver Resection/Colon/Gall, all clear margin
8/25 - CEA 0.7
9/11 - Started Adjuvant chemo Xelox
9/15 - Intense nausea from Xeloda, it was dropped
9/22 - Folfox resumes, allergic to Oxi...

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bitchslapped
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Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: 7 years NED, stage 4

Postby bitchslapped » Sat Sep 30, 2017 1:48 pm

Congratulations! If the doc is willing to do yearly tests, can you think of a good reason NOT to? You've been through much worse to get where you are, is my thinking.


Best Wishes
BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

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Rob in PA
Posts: 1972
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: 7 years NED, stage 4

Postby Rob in PA » Sat Sep 30, 2017 7:32 pm

Great NEWS Al :D :D :D :D :D :D :D

Here's to 7 more!
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

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susie0915
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: 7 years NED, stage 4

Postby susie0915 » Sat Sep 30, 2017 8:10 pm

My question is does the worry of every little twinge etc. Get less worrisome the further away from treatment you get?
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

radnyc
Posts: 282
Joined: Tue Apr 06, 2010 6:32 pm

Re: 7 years NED, stage 4

Postby radnyc » Sat Sep 30, 2017 10:35 pm

Thanks all!
Susie0915, yes it gets easier as each year goes by.
Bitchslapped, the reason I'm concerned with more testing is that there's evidence out there that CT scan exposure increases the chances of even harder to treat cancers years later. I've be had over 20 Ct/PET scans that's a LOT of exposure. If I were say 70 years old I wouldn't care as I would probably die before anything would happen. I'm 55, so I'm concerned.
If there were other non radiation options I would do them in an instant.
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

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Shana
Posts: 146
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: 7 years NED, stage 4

Postby Shana » Sat Sep 30, 2017 11:02 pm

Congrats Radnyc!

Sharing your success story with us really helps and gives hope especially to those of us like myself who are relatively new to the fight. Stay healthy and strong. You're a survivor!
DX - 12/16
MSS - KRAS wild
Stage IV colon cancer with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17 - 2 wks on, 1 wk off to lessen side effects
CEA 12/17 - 37.8! Finally a measurable number down from the thousands!
CT-Scan 9/1/17. Shrinkage of liver mets (4 measurable) and no bowel blockage
CT=Scan 12/1/17 Shrinkage of liver mets continue, no blockage
Removal of primary tumor and resection to be discussed next Spring 2018 based on continued positive progress

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susie0915
Posts: 541
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: 7 years NED, stage 4

Postby susie0915 » Sun Oct 01, 2017 6:19 am

RADNYC,
My oncologist said just that when I asked her why my chest wasn't included in my upcoming scan. It was included last April where a 4mm nodule was seen and thought to be scarring, but my pulmonologist(I see a pulmonologist every six months now due to scarring and inflammation that could've been caused by chemo or could be an autoimmune disorder)wanted to repeat in 3 months. So had another chest scan in July and nodule did not change. Will repeat in six months, so oncologist says right now just do pelvis/abdomen as to limit exposure. I never even thought of the exposure issue.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

DarknessEmbraced
Posts: 2849
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: 7 years NED, stage 4

Postby DarknessEmbraced » Sun Oct 01, 2017 8:08 am

Congratulations! That's wonderful!
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

plastikos
Posts: 273
Joined: Wed Jan 14, 2015 6:09 am

Re: 7 years NED, stage 4

Postby plastikos » Mon Oct 02, 2017 6:38 am

Inspiring story. Especially for Stage 4s like me. Thank you.
Diagnosed St. IV Colon CA @ 37, male, Kras wild type, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab 12/2016 -> pseudoprogression (?), biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab
Sept 2017 - SIRT

SweetC80
Posts: 72
Joined: Fri Sep 01, 2017 1:28 pm

Re: 7 years NED, stage 4

Postby SweetC80 » Mon Oct 02, 2017 7:54 am

Yay! That's so fantastic! I love reading success stories,especially those who had Stage 4! Continued good and NED thoughts for many many years to come.
Mom's history
68yo at diagnoses
12/16 Stage IIIb Rectal Ca CEA 1.2
1/17-2/17 Chemoradiation CEA 4.4
5/17 Entire Colon, Rectum and Anus removed Perm Ileostomy Bag
7/17 FOLFOX
9/17 Stage IVb 9cm Liver Met and suspicious 7mm Lung Nodule CEA 197
9/17 Irincotecan CEA 160
10/17 Confirmed KRAS Positive CEA 210
11/17 Met growths, Liver 10cm and Lung 8mm CEA 425
12/17 Onco Apt to discuss options after treatment for abscess. Mom's not giving up

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Robino1
Posts: 216
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: 7 years NED, stage 4

Postby Robino1 » Mon Oct 02, 2017 10:50 am

Fantastic news.

:)
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo Stage II
2017
Distended abd, pain in intestines.
CT scan shows seeding
Ascites
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
CEA: 9/30/17 -109; 10/12/17 - 99.1; 11/4/17 - 90.7; 11/30/17 - 70.7
BRAF V600e mutation :(


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