Stage IV 6 years NED

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radnyc
Posts: 446
Joined: Tue Apr 06, 2010 6:32 pm

Stage IV 6 years NED

Postby radnyc » Fri Sep 09, 2016 6:24 pm

Clean scan. Just letting stage IV folks know that there is hope out there for long term NED status and hopefully cure. I feel that I've overcome this challenge, but part of me will be happier when I'm 10 years out!

Peace and love to all.

Al
DX Jan 2010, at age 47
Feb - colon resection - 2/17 nodes positive
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April 2011
HAI Pump removed Dec 2015

JDMNYC
Posts: 133
Joined: Wed Apr 15, 2015 5:12 pm
Location: Morris County, New Jersey

Re: Stage IV 6 years NED

Postby JDMNYC » Fri Sep 09, 2016 6:47 pm

radnyc wrote:Clean scan. Just letting stage IV folks know that there is hope out there for long term NED status and hopefully cure. I feel that I've overcome this challenge, but part of me will be happier when I'm 10 years out!

Peace and love to all.


Al - biopsy on possible lung mets yesterday; results next week. Very glad to read this. Congratulations and thanks :)
- Dx Stage IIIc rectal cancer: January 2015 (CEA 20)
- Chemo (Folfox): January - April 2015
- Chemo-Radiation (Xeloda): May - June 2015
- Surgery (LAR/temporary ileostomy): September 2015; 4/20 lymph nodes – no adjuvant chemo
- Reversal: December 2015
- Stage IV: August 2016 - Lung Mets
- Chemo (Xeloda) Started October 2016.
- CEA down; lung mets shrinking.

"There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy."

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

Re: Stage IV 6 years NED

Postby mariane » Fri Sep 09, 2016 7:05 pm

Congratulations Al!
So happy for you! We all need hope so much!
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!

teri3
Posts: 405
Joined: Fri Jan 09, 2015 11:03 am

Re: Stage IV 6 years NED

Postby teri3 » Fri Sep 09, 2016 8:01 pm

Congratulations and here's to many more years!
HUGS
Teri
58 yrs old female
MSS KRAS mutation G12V
adenocarcinoma sigmoid colon dx 11-14
sigmoidectomy 11-14
Stage 3A
3 out of 20 lymph nodes involved
started FolFox 1-27-15
11 rounds FOLFOX last one 6-30-2015
7-29-2015 PET clear
5-14-2016 CT 2 nodules one in each lung
Confirmed pulmonary metastasis stage 4
FOLFIRi + Avistin started 8-16 11 rounds complete 12-16
CT 12-16 nodules shrunk chemo break wait and see :?
CT growth
VATS l lung 4 10 17
VATS r lung 4 24 17
CT 2 nodules r up and l low :(

AussieAssCancer
Posts: 258
Joined: Sat May 21, 2016 10:16 am

Re: Stage IV 6 years NED

Postby AussieAssCancer » Fri Sep 09, 2016 8:06 pm

Great to hear mate! Hope it continues!!

Cheers,

GK
Dx Oct '15 w/ Stage 3c RC/ CEA 8
Nov '15 - Jan '16: 3x FOLFOX and 5wks Chemoradiation w/ Xeloda
March '16: ULAR w/ temp ileostomy
Complete pathological response incl 0/12 nodes
May - Aug '16: 9x FOLFOX (dropped Oxaliplatin for final Rd due to neuropathy)
Clear CT scans in April ‘16 (NED), Dec ‘16, Aug ‘17, Feb ‘18, March ‘19, Feb ‘20
Feb '17: Ileostomy reversed
CEA Post Surgery: ALWAYS 2

Blog: kickingrectalcancerintheassblog
https://kickingrectalcancerintheassblog.wordpress.com/

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Marylandmaniac
Posts: 234
Joined: Wed Jun 29, 2016 6:22 pm

Re: Stage IV 6 years NED

Postby Marylandmaniac » Sat Sep 10, 2016 6:41 am

Thanks for sharing Radnyc!! I love hearing these stories and it really does inspire.
DX 6/29/16 7 cm tumor, 10 cm fr av
CT scan ab,MRI abdomen - 9mm spot on liver,CT scan of chest lungs clear
Special staging MRI - clinical staging stage 3b - T3N2M0 (unless spot proves to be met)
8/11 PET scan - spot lit up not nodes
8/16 Port in, 8/17 liver microwave abltn - spot gone
8/23 6 rds FOLFOX started
PET scan 10-13 43% red of tumor and no mets shown
Exam tumor greatly reduced. Surgery 12-14-16.
Clear margins, 7 out of 13 nodes positive. Tumor 2.1 cm
Kras wild, MMS, not MSI. 6 more rds FOLFOX

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LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Stage IV 6 years NED

Postby LPL » Sat Sep 10, 2016 3:11 pm

radnyc, Thank You very much
for posting your encoraging journey !
Big Congratulations !!!
Hubby had his liver mets surgery 9 days ago, no result of surgery- or pathology report yet But we hope it will be good news and that we csn follow in your footsteps.
All the best to you ! /LPL
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

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CRguy
Posts: 10476
Joined: Sun Feb 10, 2008 6:00 pm

Re: Stage IV 6 years NED

Postby CRguy » Sat Sep 10, 2016 5:46 pm

Any clean scan is a GOOD scan IMO !

Keep celebrating those milestones
Harmony my friend
CR
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

JDMNYC
Posts: 133
Joined: Wed Apr 15, 2015 5:12 pm
Location: Morris County, New Jersey

Re: Stage IV 6 years NED

Postby JDMNYC » Sat Sep 10, 2016 5:50 pm

LPL wrote:Hubby had his liver mets surgery 9 days ago, no result of surgery- or pathology report yet But we hope it will be good news and that we csn follow in your footsteps.


Good luck LPL!
- Dx Stage IIIc rectal cancer: January 2015 (CEA 20)
- Chemo (Folfox): January - April 2015
- Chemo-Radiation (Xeloda): May - June 2015
- Surgery (LAR/temporary ileostomy): September 2015; 4/20 lymph nodes – no adjuvant chemo
- Reversal: December 2015
- Stage IV: August 2016 - Lung Mets
- Chemo (Xeloda) Started October 2016.
- CEA down; lung mets shrinking.

"There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy."

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Stage IV 6 years NED

Postby LPL » Sun Sep 11, 2016 12:19 am

Thank You JDMNYC :)
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

hart2hart
Posts: 798
Joined: Wed Nov 23, 2011 10:46 pm

Re: Stage IV 6 years NED

Postby hart2hart » Sun Sep 11, 2016 8:40 am

Congrats Al! Peace and Love to you!






Julie and Pete
Stamford, CT
Pete (hubby) Stage 3 VLRC - 11/11
Chemo/Rad/Ace Surgeon - 11/11 - 4/12
Oxi/Xeloda (Severe Toxicity to OXI) - 5/12 - 6/12
5Fu Only - 8/12 - 2/13
Liver Resection/Hai Pump/Folfiri/FUDR - 10/13 - 5/14
Lung Ablation (MSKCC) - 12/31/2014
Xeloda through 4/2015
NED - 1/2015 - 1/2024
Hai Pump/Port Removed - 1/2020

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

Re: Stage IV 6 years NED

Postby juliej » Mon Sep 12, 2016 3:18 pm

Al, I didn't realize you had your HAI pump removed! :D What was the surgery like? How long did you have to stay in the hospital? Any complications?

Also, I want to thank you for posting your good news. Stage IV's need to know there are possibilities out there if they seek out an oncologist who will be aggressive with treatment/surgery. Wishing you many more years of good health and clear scans!

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

Pita
Posts: 637
Joined: Wed Feb 10, 2016 3:48 pm
Location: So Calif

Re: Stage IV 6 years NED

Postby Pita » Mon Sep 12, 2016 4:09 pm

Congrats...wonderful to read your news, thank you for posting it!!!
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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ANDRETEXAS
Posts: 662
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Stage IV 6 years NED

Postby ANDRETEXAS » Mon Sep 12, 2016 4:45 pm

C O N G R A T U L A T I O N S ! ! !
2/10/14 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT

3/2/15 - Clean colonoscopy & port removed
3/4 - clean CT
9/21- clean CT

3/23/16 - clean CT

2/22/17- clean CT

3/21/18 - clean CT
4/1 - clean colonoscopy

3/11/19 - clean CT
9/23 - Five-year release - Annual visits now !

4/13/23 - clean colonoscopy

ONE DAY AT A TIME !

radnyc
Posts: 446
Joined: Tue Apr 06, 2010 6:32 pm

Re: Stage IV 6 years NED

Postby radnyc » Mon Sep 12, 2016 5:31 pm

Thank you all!

Juliej. the removal of the pump was very uneventful. I did not need to stay in the hospital, they asked me if I wanted to, but declined. The whole thing took about 3 hours, went in at 9am was home by 1pm. Everything healed up nicely in about 4-6 weeks. I was very happy to have it removed, they insist you keep for at least 5 years, but some people keep it in indefinitely. Once it's out, it cannot be placed again. I'm pretty certain I won't be needing it ever again ;-)

take care

Al
DX Jan 2010, at age 47
Feb - colon resection - 2/17 nodes positive
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April 2011
HAI Pump removed Dec 2015


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