Who are the longest stage 4 survivor's on here?

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nashvegas79
Posts: 7
Joined: Thu Mar 12, 2015 1:40 am

Re: Who are the longest stage 4 survivor's on here?

Postby nashvegas79 » Wed May 27, 2015 12:11 am

It has been six year this month since I got my diagnosis of colorectal cancer with a liver met. I was almost 30 years old then. I thought my life was over, but I was very wrong.

I had been dating a great guy for about 6 months when I was initially diagnosed with stage 1 rectal cancer. I talked to him about it and gave him an out from the relationship, but he wanted to stay. Then it became stage 2 with a permanent colostomy, and he still wanted to stay. Then it was stage 4 with a spot in my liver, and he still wanted to stay with me. Two years later, after multiple surgeries and chemo treatments, he proposed to me and we were married in 2011. When we met in 2008, he was a 29 year old waiter at a local restaurant. After being by my side through all my treatments, surgeries, and recoveries, he started nursing school, graduated last year, and has been working in a critical-care unit for the past year. We have truly lived the past 6 years to the fullest, going through the good and the bad together, and never taking anything for granted. We have lived for each other.

And it has worked so far.
Colo-rectal cancer with liver metastasis diagnosed in 2008
Chemo, radiation, then colon and liver resections 2009
2 more liver resections 2009-2011
2013- Liver clear, but small mets spotted in both lungs and rear pleural sac tissue. Terminal condition
Chemo 2013-15
August 2015- Off chemo after tumor growth continued through treatment. Doing radiation on painful tumor in my back for quality of life. Not much time left.

Mother Lover
Posts: 18
Joined: Sun Nov 24, 2013 2:49 am
Location: Perth, Australia

Re: Who are the longest stage 4 survivor's on here?

Postby Mother Lover » Wed May 27, 2015 2:35 am

I'm grateful for posting this topic. When I lose my hope I come here and read all of the survival messages.
Hopefully one day I'll write here on behalf of my mother for 10 and more years survival.

Please include my mom in your prayers.
Thank you
My Mom (59 Years)
DX 23-11-13! CEA 12.
Surgery 26-11-13 Sigmoid Colon Resection (20cm)
Temporary Colostomy
Stage IIIb T3,N2a,MX; 6/10 nodes, well-difference
First Chemo 18-11-13; 12 Round Folfox 6
Reversal 28 Jun 2014
CEA rising but clear CT Scan
27 April 2015, CEA 70 and MRI shows liver mets
12 round chemo
1 round RF

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MonaL
Posts: 479
Joined: Sun Feb 15, 2009 2:42 am

Re: Who are the longest stage 4 survivor's on here?

Postby MonaL » Thu May 28, 2015 12:27 am

My dad's cancer was found only in his colon, which they resected. Months later, it seemed to have gone straight to his liver, with a met in each lobe. Was was kinda large since it went detected for quite some time (hospital "error"). His resection and 3 mop-up rounds of chemo (xeloda) was the summer of 2009, he has been NED since. So I guess he is at 6 years since his surgery, and in a couple of months it will be 6 years with no treatment. He continues to take his IP6, which he took throughout his treatment. He's 85 now, and they've stopped any testing on him - as of last year his CEA was staying low and scans were negative. He was very lucky.
Dad, stage IV CC, mets to liver, 2007-2008
surgery, Xelox, and IP-6
NED summer 2009
surveillance stopped summer 2014, due to age
died 1/2018 at age 88, from Parkinson's and respiratory infection
(Parkinson's triggered by one of his cancer surgeries and/or chemo)

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Bev G
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Facebook Username: Bev Golde
Location: Quechee, VT

Re: Who are the longest stage 4 survivor's on here?

Postby Bev G » Thu May 28, 2015 6:35 am

Mona, how wonderful to "see" you again. It's delightful to read your dad's story! 85 and a NED stage IV! Wow. Just wow.

Many hugs to you,

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

mich
Posts: 76
Joined: Fri Aug 27, 2010 11:07 pm
Location: Los Angeles

Re: Who are the longest stage 4 survivor's on here?

Postby mich » Fri May 29, 2015 11:47 am

whats IP6?
Dh DX 1/07 stg 4 age 48
colon & liver resect
1 yr chem
3yrs NED
6 mnts chem no oxy
6/12 node active
7/12 peri node excised
8/12 Rad & chemo
4/13 Lung met
lobe removed
11/2013 chemo
4/17/2014 Nodes
radiation/ not Erbuitux candidate
Cancer spreads ..starting Stirvarga
Lasted 9 weeks on stir varga
Passed away Nov2015

mich
Posts: 76
Joined: Fri Aug 27, 2010 11:07 pm
Location: Los Angeles

Re: Who are the longest stage 4 survivor's on here?

Postby mich » Thu Jul 02, 2015 9:02 pm

The original creator of this post is here, to report my husband stage 4 since January 2007 has been living 8.5 years with this condition and only now has it begun to effect his quality of life. Hope this brings hope to all other newly diagnosed and caregivers.
i believe we owe this to USC Norris cancer hospital for keeping him alive all this time.
Dh DX 1/07 stg 4 age 48
colon & liver resect
1 yr chem
3yrs NED
6 mnts chem no oxy
6/12 node active
7/12 peri node excised
8/12 Rad & chemo
4/13 Lung met
lobe removed
11/2013 chemo
4/17/2014 Nodes
radiation/ not Erbuitux candidate
Cancer spreads ..starting Stirvarga
Lasted 9 weeks on stir varga
Passed away Nov2015

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

Re: Who are the longest stage 4 survivor's on here?

Postby Phuong » Fri Jul 03, 2015 1:28 pm

8 years here, 2.5 years since my last recurrence. :mrgreen:
Phuong
http://sonofamotherlessgoat.net/
dx'd Stage III Rectal (T3 N1 M0)
Now Stage IV mCRC

ams5796
Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

Re: Who are the longest stage 4 survivor's on here?

Postby ams5796 » Fri Jul 03, 2015 8:18 pm

8 1/2 years since diagnosis. NED for a year and a half.



Ann
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

Alreadyhere
Posts: 89
Joined: Wed Oct 03, 2012 6:38 pm

Re: Who are the longest stage 4 survivor's on here?

Postby Alreadyhere » Fri Jul 03, 2015 8:49 pm

Does anyone have any stories about anyone who has never been NED but has long term outcomes while still going through therapy? DH is over the 3 year mark and fortunately there appears to be no end in sight anytime soon!!
DH Diagnosed 2012 @ 34 stage iv
Resection/Folfox
Confirmed distant LN
Radiation
More distant LN
Folfiri + Avastin
Stable - No shrinkage or Growth
Erbitux only for past 2 years
More distant lymph nodes
Radiation
Stable and off treatment since Fall 2017.

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cptmac
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Joined: Mon Nov 19, 2007 3:15 pm
Facebook Username: Dorothy McGrath

Re: Who are the longest stage 4 survivor's on here?

Postby cptmac » Sun Jul 05, 2015 1:13 pm

On July 22 it will be 11 years.
cptmac
As long as you're alive, there is hope.
dx 7/04 stage IV
colon resection 8/04
liver resection 9/04 with HAI pump installed
Stage II trial w irinotecan as systemic and FUDR for direct chemo to liver via HAI pump
Cured since 9/04

JDinNC
Posts: 771
Joined: Fri Jul 05, 2013 9:49 pm
Location: Murphy, N.C.

Re: Who are the longest stage 4 survivor's on here?

Postby JDinNC » Mon Jul 06, 2015 11:10 pm

For.... Robdon'tgiveup
61 y/o female @ DX...........
T3N0M1
6/13 DX- stage 4
Sigmoid colon cancer.
One met to lung
7/13 colon resection
8/13 lung resection
7/17 four years....NED
8/18 five years....NED
MELANOMA
63 y/o @ DX
6/15 stage 2a
7/15 surgery on arm
7/15 NED
4/16 recurrance
5/16 remove metastasis from back
5/16. Started immunotherapy
8/16 discontinue treatment
7/18...PET scan...NED

Ron50
Posts: 699
Joined: Fri Feb 10, 2006 7:04 pm

Re: Who are the longest stage 4 survivor's on here?

Postby Ron50 » Tue Jul 07, 2015 6:25 am

So confused mentioned Foxy from the csn survivors site. She is my friend Virginnia in New Zealand that I mentioned earlier in the post. Amazingly her cancer treatment was carried out in regional new Zealand. Mine was similar in that my surgery was in a regional hospital at Buderim on the Sunshine coast of Queensland Australia and my chemo was carried out at a small chemo clinic in Maroochydore with a local oncologist. Foxy and I met on the CSN site as we had both had twelve months of 5Fu and levamisole as our chemo regime. We have kept in contact over the years after I joined CSN in nov 2001. We had a cyber celebration last Christmas when she reached her 20 yr cancer clear survival after colon surgery and a wedge resection of a met to her liver. Our survival has been long ,37 yrs between us now but it has not been easy as we have both been pestered by auto immune disease which often has not been diagnosable. But we are still here and battling on. Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

plastikos
Posts: 345
Joined: Wed Jan 14, 2015 6:09 am

Re: Who are the longest stage 4 survivor's on here?

Postby plastikos » Tue Oct 13, 2015 10:57 am

I hope you'll all forgive me for reviving this thread. I think a lot of us need some stage IV survivor stories every now and then.
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

Rheaeliza
Posts: 421
Joined: Fri Dec 14, 2012 4:42 pm
Location: New York, New York

Re: Who are the longest stage 4 survivor's on here?

Postby Rheaeliza » Tue Oct 13, 2015 6:30 pm

I was diagnosed in 2012 and I'm still here! Pending my CEA test today, colonoscopy on Thursday, and scans in two weeks, I'm hoping to celebrate 2 years NED on November 4th!
12/7/12: 30 yrs. old, Dx stage 4b.mets to liver, ovary, nodes, ommentum.
7 months chemo, shrinkage!
8/26/13 HIPEC, colon resection,hysterectomy, appndx, gallbladder out.
9/12/13:leak in colon, temp. loop ileost, home 9/18
11/3/13: liver resect.
1/2014 Ostomy reversal, one week later, abcess surg., fistula, tpn.
No more chemo, NED since 11/13

NedPlease
Posts: 548
Joined: Fri Mar 23, 2012 3:56 pm

Re: Who are the longest stage 4 survivor's on here?

Postby NedPlease » Tue Oct 13, 2015 9:20 pm

I will be four years NED next month and almost five and a half years since diagnosis.
N
F-54- St 4- Ascend Colon, 2 Liver mets, Poorly dif, Mutant
6/10- Folfox
9/10- R Liver Resect/Colon/Gall/Appendix
11/10-3/11- Folfox
11/11- R Lung, 1 met, VATS
3/12- 9/12- Xeloda
2/12- 6/18 Clear Scans
6/19- first time no scan
Today- NED


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