Still NED three years after lung mets surgery

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Sophy
Posts: 261
Joined: Fri May 27, 2011 2:46 am
Location: New Zealand

Still NED three years after lung mets surgery

Postby Sophy » Tue Nov 28, 2017 1:37 am

Feeling very lucky - CT last week shows that I am still NED!

So it looks as though in my case the lung laser surgery in Europe and the follow up of ongoing ADAPT protocol with cimetedine is still having great results.

Thank you to all who have offered support and advice over the years, I couldn't have done it without you :D
dx T3N1M0 Feb 2011 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)
June 20 CT shows nodule, bronchoscopy confirms is scar tissue, still NED
Dec 20 stopping Xeloda continue celebrex, cimetedine
Aug 21,March 23 scans show still NED
March 2023 CURED - discharged from Oncology, no more scans or follow up

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

Re: Still NED three years after lung mets surgery

Postby [Ana & Alex] » Tue Nov 28, 2017 2:24 am

I'm so happy for you Sophy... you are an example of resilience for all of us.

I hope you are blessed with a cure and that your courage for seeking out other options outside your comfort zone pays you back with many happy years of a cancer free life.

Here's to NEDville forever!

All the best!
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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susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Still NED three years after lung mets surgery

Postby susie0915 » Tue Nov 28, 2017 9:27 am

Congratulations! Always good news especially during the holidays.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Still NED three years after lung mets surgery

Postby stu » Tue Nov 28, 2017 12:53 pm

Great news . So encouraging to hear .
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 three years after lung mets surgery

Postby Robino1 » Tue Nov 28, 2017 6:22 pm

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

Re: Still NED three years after lung mets surgery

Postby juliej » Tue Nov 28, 2017 6:25 pm

You are a rock star, Sophy!!! :D

You are also a shining example of going outside the box for treatment options. Sending my best wishes to you for a long and healthy life!

Hugs,
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

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

Re: Still NED three years after lung mets surgery

Postby peanut_8 » Tue Nov 28, 2017 7:02 pm

Great news Sophy, very happy for you.

Time for a Happy Dance.

Image
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: Still NED three years after lung mets surgery

Postby DarknessEmbraced » Wed Nov 29, 2017 5:29 pm

Congratulations!*hugs*
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! :)

crazylife
Posts: 256
Joined: Wed Dec 30, 2015 11:29 am

Re: Still NED three years after lung mets surgery

Postby crazylife » Wed Nov 29, 2017 8:13 pm

That's so great! DH is recovering from surgery on his right lung and going for the left one in about 8 weeks. He's in a lot of pain, so I will show him this for encouragement.

Did they tell you the likelihood of cure was very very small? They've told us this but we went for it anyway also, what is ADAPT? Did you have to find a doctor who would do it? We are at MSK.

Thanks!
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

benben
Posts: 324
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Still NED three years after lung mets surgery

Postby benben » Wed Nov 29, 2017 8:52 pm

LOVE to hear the GOOD NEWS! May NED last forever. :D
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
11/8 PORT OUT!
7/22 CT - NED (5 years!)

mariane
Posts: 704
Joined: Sun Sep 13, 2015 6:16 pm

Re: Still NED three years after lung mets surgery

Postby mariane » Wed Nov 29, 2017 10:01 pm

Sophy, congratulations!!!

I am so very, very happy!
Each year is a gift. We see our kids growing, developing. I cherish every day.
Stay in NEDville forever and enjoy!
mom of now 14 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!

ldbenz
Posts: 12
Joined: Thu Nov 30, 2017 8:42 pm

Re: Still NED three years after lung mets surgery

Postby ldbenz » Sat Dec 30, 2017 11:10 am

Such encouraging news!

I'm so glad I found this forum and can actually see success stories to bring inspiration and hope.

Thank you for posting.

Beccaschocked
Posts: 40
Joined: Mon Oct 30, 2017 7:33 pm
Facebook Username: Becca Fender schock

Re: Still NED three years after lung mets surgery

Postby Beccaschocked » Tue Jan 02, 2018 4:50 pm

Congratulations! This news is so encouraging (I just had a lobectomy for lung recurrence).

I’d love to hear more about ADAPT too!
Dx @ 32, mom to 6 week old and 2 year old (now 3 & 5)
3/2015 stage IV colon cancer Mets to liver. CEA > 8,000.
4/2015- June 15; 3 infusions folfoxiri +avastin, 4 infusions folfox
7/2015 colon & liver resection; 6 infusions of folfiri
1/2016-5/2017 NED (5mm lung nodule stable)
10/2017- growing lung nodule 12mm from 5mm-Confirmed recurrence - CEA 2.5
11/2017- lobectomy- no chemo
1/2018- CT & PET back to NED. CEA 1.3; 1.4; 1.2; 1.2.; 1.0; 1.1; 1.1; 0.9......
7/18-2023 - Clean Scans


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