Stage IV - 4 years NED

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Swimmer22
Posts: 49
Joined: Mon Oct 24, 2011 7:25 am

Stage IV - 4 years NED

Postby Swimmer22 » Fri Jun 05, 2015 8:57 am

While I no longer post frequently, I continue to read and follow the events of my peers. I want to share encouraging news that as a Stage IV patient, as of my scans yesterday, I have been NED since surgery in September 2011. I don't share this to gloat but to provide encouragement to those with this staging diagnosis. I know that when I was originally diagnosed Stage IV right out of the gate in 2010, I was very scared and discouraged. I searched these boards to find those who experienced success in treatments.

I presented with rectal cancer (Kras mutated) and lung mets in December 2010. First, I completed VATS surgery in January 2011 to remove the lung mets then onto 6 Folflox treatments. That was followed by 28 days radiation and Xeoda treating to shrink the rectal tumor. I was fortunate to have a complete response to radiation. September 2011, I had orthoscopic LAR surgery to remove the scared tumor tissue and lymph nodes (and was given an ileostomy). Pathology was clean. Next followed 12 treatments of Folfiri with my ileostomy reversal in June 2012. Fortunately, all scans have been clean since surgery in September 2011, that will be 4 years this September.

I was scanned and labs initially at 3 month intervals for the first two years following LAR surgery, then moved to every six months. Yesterday, my oncologist said one more scan a year from now and, if that remains clean, he turns me lose. No special diet, supplements or such, just a healthy lifestyle. I was fortunate to have great doctors, excellent access to treatments, and a strong faith with daily prayer to St. Peregrine (the patron saint for cancer). My prayers for the best to all my peers suffering from this tough disease.
12/10 - Rectal Cancer Stage IV
1/11 - Lung Met- VATS
3/11 - Folflox begin 6 tx.
7/11- 28 tx. chemoradiation
9/11 - LAR Surgery (Complete response to Chemo)
10/11- 12tx. of Folfiri Mop-up
7/12 - Ostomy reversed
NED since 9/1/11
3/13 -Port Removed

jalusa
Posts: 221
Joined: Thu Apr 02, 2015 9:26 am

Re: Stage IV - 4 years NED

Postby jalusa » Fri Jun 05, 2015 9:12 am

Congratulations!
Hoping to get to resection with HAI pump.
Failed PVE - Searching for options
Chemo for life

Kathym
Posts: 81
Joined: Sun Dec 04, 2011 10:55 pm

Re: Stage IV - 4 years NED

Postby Kathym » Fri Jun 05, 2015 10:51 am

Congratulations ! Awesome that you took the time to post and encourage others ! Never can get enough of good news!
Stage 3 colon cancer diagnosed oct 2011 (50 yrs old)
Colon resection nov 2011
Chemo with folfox starts dec 6 finished 12 rounds may 2012
November 2013 clean scan
Ned!
"courage is being scared to death and saddling up anyway" ( John wayne)

aja1121
Posts: 214
Joined: Sat Jun 28, 2014 5:12 pm

Re: Stage IV - 4 years NED

Postby aja1121 » Fri Jun 05, 2015 10:51 am

Thank you so much for sharing. These success stories give me hope, and I am sure others feel the same. Congratulations!
05/23/14 DH dx Stage 3B rectal ca (age 41)
6/2014 chemorad | 10/2014 LAR, all nodes clean
FOLFOX x 10 | VATS/lung met | ileo reversal
09/15 local recurrence
10/15 colostomy
11/15 FOLFIRI x 4, major growth
02/16 tumor debulked
Stable ten months on Xeloda/Avastin
Growth on clinical trials NCT02024607 (BBI608 + FOLFIRI), NCT02817633 (anti-PD-1 + anti-TIM-3), NCT03175224 (c-Met inhibitor)
09/27/2018 started hospice
02/07/19 died

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: Stage IV - 4 years NED

Postby KWT » Fri Jun 05, 2015 10:53 am

I was wondering about you swimmer, but figured in your case no news was good news. Congratulations I'm thinking you've got this thing beat for good

stevieb
Posts: 410
Joined: Sat Feb 09, 2013 12:26 am

Re: Stage IV - 4 years NED

Postby stevieb » Fri Jun 05, 2015 11:09 am

Great News! Congrats!
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

peanut_8
Posts: 2340
Joined: Sun May 25, 2014 1:31 pm

Re: Stage IV - 4 years NED

Postby peanut_8 » Fri Jun 05, 2015 11:36 am

Congratulations Swimmer! 4 years NED is something to celebrate. :D
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Stage IV - 4 years NED

Postby DarknessEmbraced » Sat Jun 06, 2015 10:34 am

Congratulations on 4 years NED! Really wonderful news!
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
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

cathy123
Posts: 665
Joined: Sat Nov 08, 2014 3:36 pm

Re: Stage IV - 4 years NED

Postby cathy123 » Sat Jun 06, 2015 10:46 am

So glad for you - that is great news.
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

Badass
Posts: 1171
Joined: Sun Jan 15, 2012 11:42 am

Re: Stage IV - 4 years NED

Postby Badass » Sat Jun 06, 2015 1:56 pm

Swimmer, such a sweet anniversary! As a fellow rectal cancer person, I am so glad to read this-- we don't read enough of long-term survivorship with rectal cancer.
A long and healthy life to you!
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

Kathym
Posts: 81
Joined: Sun Dec 04, 2011 10:55 pm

Re: Stage IV - 4 years NED

Postby Kathym » Sat Jun 06, 2015 6:01 pm

That is amazing news and I prAy brings hope to others! Wish you a long heathy life !
Stage 3 colon cancer diagnosed oct 2011 (50 yrs old)
Colon resection nov 2011
Chemo with folfox starts dec 6 finished 12 rounds may 2012
November 2013 clean scan
Ned!
"courage is being scared to death and saddling up anyway" ( John wayne)

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cecioboe
Posts: 597
Joined: Mon Oct 17, 2011 9:08 pm
Facebook Username: Ceci Lagarenne (Higgins)
Location: Texas

Re: Stage IV - 4 years NED

Postby cecioboe » Tue Jun 09, 2015 10:17 pm

Go, Swimmer!!! Jim isn't far behind you. Here's to moving forward in the NED zone!!
Wife to Jim Stage IV RC w/liver mets
DX 9/16/11
T3N1M1
Oct - Dec 2011 chemo/rad
1/04/12 ileo
1/16/12 LAR, liver resection
2/29/12 blockage, emer surg, ileo rev
4/16/12- 9/16/12 chemo
NED since 10/22/12
De-ported 6/24/16

lpas
Posts: 1010
Joined: Wed Nov 19, 2014 11:11 pm

Re: Stage IV - 4 years NED

Postby lpas » Tue Jun 09, 2015 10:23 pm

So awesome -- congratulations!!!
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo

kathybrj
Posts: 51
Joined: Tue May 06, 2014 1:33 pm
Location: Graham NC

Re: Stage IV - 4 years NED

Postby kathybrj » Wed Jun 10, 2015 9:16 am

Wonderful news!
Blaise (DH) dx 3/31/14 (age 49)
Stage IIIb Rectal - 4 lymphs involved
Xeloda and Rad 5/5/2014
Surgery 7/29/14 Illeostomy Placed
FolFox 9/11/2014 x 9 treatments
Reversal 1/27/15
NED 9/29/2015
Kathy-Caregiver

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Bev G
Posts: 5856
Joined: Thu Jan 07, 2010 11:19 pm
Facebook Username: Bev Golde
Location: Quechee, VT

Re: Stage IV - 4 years NED

Postby Bev G » Wed Jun 10, 2015 11:00 am

Thanks for posting this wonderful news. Keep it up forever :)
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now


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