Still NED, 4.5 years after lung recurrence

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Sophy
Posts: 250
Joined: Fri May 27, 2011 2:46 am
Location: New Zealand

Still NED, 4.5 years after lung recurrence

Postby Sophy » Wed May 09, 2018 5:08 pm

CT scan this week showing I am still NED getting on for 4 years since my last lung laser surgery. I feel like a very lucky person :D

As always, I am so grateful to those here on the board, especially CB75 and Maia, who shared their knowledge and experiences to get me to get to NED when my medical team in NZ didn't have much hope or options.
dx T3N1M0 Feb 11 when children age 11, 7 and 2
Xeloda/rad March 11, LAR June 11 temp ileo
Xelox 6 rounds, NED
Lung mets Oct 13
Laser surgery Germany Jan 14. 3 mets left lung.
Laser surgery UK Jun and Aug 14 one met each lung, NED
Aug 14 Started Xeloda and Celebrex (ADAPT)
Oct 2018 CT shows still NED
Continuing ADAPT

stu
Posts: 901
Joined: Sat Aug 17, 2013 5:46 pm

Re: Still NED, 4.5 years after lung recurrence

Postby stu » Thu May 10, 2018 1:40 am

That’s fantastic news . I think your own story has also encouraged others to pursue aggressively lung mets . I know we did with my mum who also got a great scan this week .
Enjoy every minute ,
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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Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Still NED, 4.5 years after lung recurrence

Postby Robino1 » Thu May 10, 2018 6:36 am

Sweet! Congratulations :D
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

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peanut_8
Posts: 2314
Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: Still NED, 4.5 years after lung recurrence

Postby peanut_8 » Thu May 10, 2018 9:03 am

Hooray!!!
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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juliej
Posts: 2878
Joined: Thu Aug 05, 2010 12:59 pm

Re: Still NED, 4.5 years after lung recurrence

Postby juliej » Thu May 10, 2018 2:56 pm

Wonderful news, Sophy! :D :D :D With every year, cancer gets farther and farther away in the rear-view mirror!

You are an inspiration to many here for your "think-outside-the-box" attitude. Hope you have a long and healthy life!

xo,
Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 9/14/2018, CEA<1

KElizabeth
Posts: 400
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Re: Still NED, 4.5 years after lung recurrence

Postby KElizabeth » Thu May 10, 2018 10:43 pm

Wonderful! Thanks for keeping us inspired.
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current

mariane
Posts: 634
Joined: Sun Sep 13, 2015 6:16 pm

Re: Still NED, 4.5 years after lung recurrence

Postby mariane » Fri May 11, 2018 7:28 am

Congratulations, Sophy!!! These are wonderful news! I am very, very happy!! Many, many happy NED years!!!

Thank you for letting us know. :)
mom of now 9 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

stevieb
Posts: 401
Joined: Sat Feb 09, 2013 12:26 am

Re: Still NED, 4.5 years after lung recurrence

Postby stevieb » Sun May 13, 2018 12:22 pm

Absolutely wonderful news!!! I sit at MDAnderson right now waiting for my Ct scan and hoping for one year NED!!!!
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

DarknessEmbraced
Posts: 3184
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Still NED, 4.5 years after lung recurrence

Postby DarknessEmbraced » Wed May 16, 2018 9:35 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

lpas
Posts: 1007
Joined: Wed Nov 19, 2014 11:11 pm

Re: Still NED, 4.5 years after lung recurrence

Postby lpas » Wed May 16, 2018 9:43 am

Awesome, awesome news!! So happy for you, Sophy!
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 & Celebrex
3/16 Ovarian mass removed. Benign fibroid
9/16 clean scope
4/18 clean CT
Ongoing Celebrex, Tagamet & other carefully-targeted supplements
Post-chemo CEA 3.0, 2.5, 2.3, 2.0, 1.6, 1.3, 1.8, 2.1, 1.8, 2.0, 1.8, 1.9, 1.7, 1.5, 1.6, 1.5, 1.4, 1.4, 1.3, 1.3, 1.6, 1.6, 1.3, 1.4, 1.6, 2.2, 2.4, 2.1
Mom to a 4 & 6yo

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CRguy
Posts: 9675
Joined: Sun Feb 10, 2008 6:00 pm

Re: Still NED, 4.5 years after lung recurrence

Postby CRguy » Wed May 16, 2018 3:35 pm

Mega CHEERS and continued success !

On the Journey
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far


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