Still NED 20 months after lung laser surgery

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

Still NED 20 months after lung laser surgery

Postby Sophy » Fri Jun 17, 2016 3:36 am

Wow - CT scan this week showed there is still no evidence of disease nearly two years after my last lung met surgery.

I don't know if this is because the lung laser surgeries I had in Europe removed all the cancer or if it is because the ADAPT therapy I have taken since has kept any new mets under control. Whatever it is I am very grateful and very lucky.

Thanks to all here now and in the past who have shared their knowledge and offered their support over the last 5 1/2 years - your input has been so important and such a help to me.

Sophy
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
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rp1954
Posts: 1855
Joined: Mon Jun 13, 2011 1:13 am

Re: Still NED 20 months after lung laser surgery

Postby rp1954 » Fri Jun 17, 2016 8:45 am

Congratulations Sophy. Somewhere Maia and Carm should be proud of you too. I think targetable, lower side effect meds are the way to go, too. Thanks for keeping everyone in the loop.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements
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DarknessEmbraced
Posts: 3817
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Still NED 20 months after lung laser surgery

Postby DarknessEmbraced » Fri Jun 17, 2016 9:45 am

Congratulations! That's wonderful news! :D
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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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: Still NED 20 months after lung laser surgery

Postby juliej » Fri Jun 17, 2016 6:22 pm

Wonderful news, Sophy! Congratulations!!! Confirms my feelings about ADAPT-type therapy working for certain cases.

Also, like rp1954 said, thanks for keeping us in the loop. We love to hear success stories, but we also love to hear about 'outside-the-box' treatments and your's definitely qualifies!
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
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Nik Colon

Re: Still NED 20 months after lung laser surgery

Postby Nik Colon » Fri Jun 17, 2016 6:22 pm

Great news!
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HopeForJesse
Posts: 249
Joined: Wed Feb 24, 2016 9:39 am
Location: Philadelphia

Re: Still NED 20 months after lung laser surgery

Postby HopeForJesse » Fri Jun 17, 2016 6:31 pm

Great to hear this! :D
DH DX 01/16 49 YO inop RC stage IV liver mets
MSS TP53 APC,BRCA2
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
5/18 5 days SBRT radiation to sternum 10/22/18 surgery to remove zyphoid process met
6/11/19 5FU added to cetuximab and irinotecan CEA 16
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!
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NateA
Posts: 115
Joined: Sun Aug 02, 2015 7:41 pm
Facebook Username: Nathan Drew Allen

Re: Still NED 20 months after lung laser surgery

Postby NateA » Fri Jun 17, 2016 7:25 pm

Best kind of news thanks for sharing! And right on!!
7/15 dx CC stage 4 with lots of liver mets CEA 208
KRAS Mutant G12V, MSS.
9/23 from folfoxiri to folfox and Xeloda. CEA 25
11/11/15 all liver markers in the zone, CEA 4.0, moving to Avastin/xeloda for now..tumors shrinking
01/13/16 Avastin/xeloda CEA 3.5
03/11/16 clean PET CEA 4.4
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Lordswood77
Posts: 39
Joined: Tue Mar 08, 2016 1:30 pm

Re: Still NED 20 months after lung laser surgery

Postby Lordswood77 » Sat Jun 18, 2016 1:31 am

Great news Sophy, are you still on the adapt course?
4/2013 - Diagnosed with Colon cancer aged 35 (no family history) T1N0M0
8/2013 - LAR with temp Ileostomy
12/2013 - Ileostomy Reversal
09/2014 - Clear CT Scan
01/2016 - PET Scan high probability of reoccurance
01/2016 - VATS right lung
03/2016 - VATS left lug
05/2016 - Start CAPOX regime for 6 months
07/2016 - Clean CT scan next scan October
08/2016 - Clear MRI scan following migraines
10/2016 - Finished Chemo & Clear scan, next scan Jan
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crazylife
Posts: 256
Joined: Wed Dec 30, 2015 11:29 am

Re: Still NED 20 months after lung laser surgery

Postby crazylife » Sat Jun 18, 2016 1:32 pm

What is Adapt therapy?
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
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Pita
Posts: 637
Joined: Wed Feb 10, 2016 3:48 pm
Location: So Calif

Re: Still NED 20 months after lung laser surgery

Postby Pita » Sat Jun 18, 2016 4:04 pm

That's wonderful Sophy! Will Google adapt therapy.
70yo Fem DX: 1/21/2016 RC Stage IV-Nodules lungs
MSS-Kras Wild-Lynch Synd Neg-Lung Biopsy 1/27/16-Port 2/19/16
MRI 7/7/16 Endometrial polyp found, watching LAR 7/19/16, No Ileostomy, Stage ypT3 N1
CT 11/7/16: Most mets stable,1 shrunk,1 new??
CEA Tests: 1/21/16=20, 12/22/16=5.3, 1/20/17=4.8, 2/15/17=6.2
9/20/16-1/24/17 Folfuri & Avastin #10/10 Done
PET/CT 2/10/16-1/31/17=Some shrunk & growth to 2, Avastin failing ??? :evil:
2/21/17 Folfuri & Avastin
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Hapa
Posts: 388
Joined: Thu Jan 03, 2013 2:46 pm

Re: Still NED 20 months after lung laser surgery

Postby Hapa » Sat Jun 18, 2016 4:07 pm

Love to read about your good news. Here's to many more!
DH Stage 3 RC
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janadowning11
Posts: 5
Joined: Tue Jul 05, 2016 1:03 pm
Facebook Username: janaariadna11

Re: Still NED 20 months after lung laser surgery

Postby janadowning11 » Mon Jul 18, 2016 11:21 pm

I am looking to have the laser lung surgery and just sent my scans to Dr. Ladas. I am excited to hear about your great results! Do you mind telling me a bit about your experience? Also, did you ever attempt an insurance reimbursement for the procedure though your coverage in the U.S?

Thanks!
Dx. Stage IV 10/14, Liver mets
FOLFOX 11/14-6/15
Liver/colon resection 3/15
Lung Mets 7/15
Right Lung Wedge Resection 11/15
Left Lung Wedge Resection 4/16
Missed lung mets remaining 6/16
Off chemo since 6/15
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