5.5 years stage IV, now one year NED

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stevieb
Posts: 407
Joined: Sat Feb 09, 2013 12:26 am

5.5 years stage IV, now one year NED

Postby stevieb » Thu May 17, 2018 1:49 pm

My most recent scan this week came back NED again. That will make it one year since my last lung cryablation. I am so thankful and post this to give hope to others. I am still on maintenance Xeloda, Celebrex, and Avastin but live a pretty normal life now!

Best wishes,

Stephen
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

behconsult
Posts: 245
Joined: Fri Jul 04, 2014 4:53 pm

Re: 5.5 years stage IV, now one year NED

Postby behconsult » Thu May 17, 2018 5:35 pm

Amen!!!!!!!!!!!!!!! Wonderful news. Bob
Stage 4 Age 56 BrafV660E 5/14
spot on perit/ Right side tumor
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 four spots- Collapsed lung/chest tube 2x
Possible local recurrence in a spot or two on PET. Stable CT

stu
Posts: 1376
Joined: Sat Aug 17, 2013 5:46 pm

Re: 5.5 years stage IV, now one year NED

Postby stu » Thu May 17, 2018 5:51 pm

Yippee. So happy for you. Enjoy every minute .
Take care,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: 5.5 years stage IV, now one year NED

Postby juliej » Thu May 17, 2018 6:19 pm

Excellent news, Stephen! :D :D :D Keep pushing those Stage IV statistics out!

Thanks for posting your good news and wishing you a long and healthy life!

Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

crazylife
Posts: 255
Joined: Wed Dec 30, 2015 11:29 am

Re: 5.5 years stage IV, now one year NED

Postby crazylife » Thu May 17, 2018 9:27 pm

Awesome news! Any idea how to get a hold of dr. Lin? DH is clear since lung surgery but thinking this protocol is worth some looking into.
Wife to DH, 41 years old, diagnosed 11/15
Stage 4, Mod diff, 13/24 LN, 1 liver met
Colon/liver resection at MSK, 11/15
8mm lung met (not confirmed) and enlarged lymph nodes 1/16
12 rounds of folfox (9 with Oxi) 6/16
NED - July 2016
NED - October 2016
3 lung mets - March 2017
7 lung mets, May 2017
RFA to largest met, June 2017
Lung mets growing slowly, October 2017 (off treatment since June 2016)
Right lung surgery, November 2017
Left lung surgery, January 2018
NED - May 2018

stevieb
Posts: 407
Joined: Sat Feb 09, 2013 12:26 am

Re: 5.5 years stage IV, now one year NED

Postby stevieb » Thu May 17, 2018 9:30 pm

You can research the protocol online and ask your onc to follow it or try calling the Fred Hutch Cancer Center and see if anyone will give you a contact number / email for him.
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

Nick
Posts: 22
Joined: Mon Nov 14, 2011 11:52 am

Re: 5.5 years stage IV, now one year NED

Postby Nick » Fri May 18, 2018 3:33 pm

Outstanding! Awesome news. Keep up the posting, it's good to hear things like this, gives people hope.
Nick
Caregiver to Angie, 47, mother of 3
DX Feb 3, 2011, mets liver & lungs
resection, colon twist, TACE
FOLFOX/avastin - 12 sessions
Maintenance 5FU + avastin
Progression 7/12
starting FOLFIRIOX
Hospice 1/9/13
Angie passed January 26, 2013 at 3:13 am.

tater
Posts: 128
Joined: Wed Jul 19, 2017 5:53 pm

Re: 5.5 years stage IV, now one year NED

Postby tater » Fri May 18, 2018 10:52 pm

such great news. keep up that NED stuff.
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 Coloanal Anastomosis, 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, 1.3 12/18, 1.8 3/19, 2.5 6/19
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18
Small Spot on right ureter surgery 10/30/19 adhered to artery
Dec. 2 start 12 rounds FOLFIRI

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Phuong
Posts: 1494
Joined: Mon Jun 14, 2010 10:43 pm
Facebook Username: Phuong Ly Gallagher

Re: 5.5 years stage IV, now one year NED

Postby Phuong » Sat May 19, 2018 7:38 pm

We love NED. Congratulations!!!
Phuong
http://sonofamotherlessgoat.net/
dx'd Stage III Rectal (T3 N1 M0)
Now Stage IV mCRC

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am

Re: 5.5 years stage IV, now one year NED

Postby Deb m » Mon May 21, 2018 9:13 am

Very happy for you!

WarriorSpouse
Posts: 218
Joined: Tue Aug 16, 2016 9:02 pm

Re: 5.5 years stage IV, now one year NED

Postby WarriorSpouse » Mon May 21, 2018 10:39 pm

Thanks for sharing... Well done!
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

plastikos
Posts: 343
Joined: Wed Jan 14, 2015 6:09 am

Re: 5.5 years stage IV, now one year NED

Postby plastikos » Wed May 23, 2018 7:53 am

Great news!
St. IV Colon CA @ 37, male, Kras wild, 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 started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED
2019 NED

DarknessEmbraced
Posts: 3486
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: 5.5 years stage IV, now one year NED

Postby DarknessEmbraced » Thu May 24, 2018 7:03 am

Congratulations! :)
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! :)


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