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

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Pantheraleo
Posts: 34
Joined: Mon Nov 19, 2007 3:52 am
Location: Sweden

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

Postby Pantheraleo » Wed Oct 14, 2015 3:54 am

9 years and 9 months since diagnosis
5 years and 7 months NED, since last surgery
Stage IV Rectal Cancer.
Diagnosed Jan 2006 (age 44). LAR with J-Pouch March 2006
2 liver mets, surgery Nov 2006. Folfox until July 2007
Oct 2009. Mets in ovaries and pelvic lymph nodes
Surgery March 2010
XELIRI w Avastin, before/after surgery
PET/CT May 2015: NED - "Declared well"

sue kidera
Posts: 26
Joined: Wed Nov 23, 2005 8:29 pm

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

Postby sue kidera » Wed Oct 14, 2015 10:10 pm

I just hit the 10 year mark. Mets to the aortic lymph area and lungs. Doing well.

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

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

Postby plastikos » Thu Oct 15, 2015 1:24 am

sue kidera wrote:I just hit the 10 year mark. Mets to the aortic lymph area and lungs. Doing well.

Wow. Thats amazing. Mind sharing what your treatments were/are?
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

sue kidera
Posts: 26
Joined: Wed Nov 23, 2005 8:29 pm

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

Postby sue kidera » Thu Oct 15, 2015 8:35 am

That would take a novel. I have pretty much done them all. (not Stivarga) I quit Vecibix after 9 rounds. Too toxic for me. I have had lots of surgery and radiation as well. The mets on the aorta were resolved with a surgery. I had my aorta resected by a vascular surgeon. No cancer surgeon would touch it. Then followed with general radiation to the pelvis. It is resolved. No more cancer there.I have used SBRT on lung mets. I have about 35 and have zapped about 20. Right now on Tas-102. I got on it as a clinical trial not because I wasn't still remaining stable with Folfuri but because I had it with the side effects. Drs. pretty much just accept I am in charge. My cancer is weird. It doesn't do much either way and I am determined to keep quality of life so I guess I take risks. I take breaks when I feel like it.
I have been lucky that it never goes to my liver. Most of my mets are under a centimeter.
I am an avid exerciser. I know that is hard to do on treatment but I force myself. I am a rower on a cancer survivor crew. I think it's a big deal.
My best to you. I hope these stories have given you hope.

Nik Colon

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

Postby Nik Colon » Fri Oct 16, 2015 12:35 am

Not the longest by far, but NED since April when I had surgery. Will know if still NED next week

Dhana
Posts: 1
Joined: Thu Dec 21, 2017 8:01 am

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

Postby Dhana » Thu Dec 21, 2017 7:56 pm

13 years in Sept. No recurrence
Stage 4 - liver resection
Whipple procedure

stu
Posts: 1573
Joined: Sat Aug 17, 2013 5:46 pm

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

Postby stu » Thu May 26, 2022 12:03 pm

Just thought I would bring this thread back up and update . This summer will be my mum’s 13th year since a stage 4 diagnosis. She has become a teenager . 11 years clear since her big liver resection and a significant birthday to celebrate .
Take care ,
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 .

radnyc
Posts: 445
Joined: Tue Apr 06, 2010 6:32 pm

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

Postby radnyc » Fri May 27, 2022 8:16 am

12 years
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

Gravelyguy
Posts: 379
Joined: Thu Jul 05, 2018 6:03 pm

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

Postby Gravelyguy » Fri May 27, 2022 10:29 am

I will be at 5 years since diagnosis on June 6th. Can't believe it has been this long and yet it seems like yesterday.

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!
12/16/21 CEA 1.2 still NED!

Rock_Robster
Posts: 694
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

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

Postby Rock_Robster » Sat May 28, 2022 12:33 am

I’m a long way off any kind of record, but I’ve been going 3 years and 8 months. Will be 4 years in October. NED for 2 of these (and hopefully again soon…)
40M Australia
2018 Dx RC, 12cm high
G2, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then <2. Jun-22: 5
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo (reversed)
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
11/21 Liver met & celiac node; 2-3 tiny lung things
12/21 PVE
3/22 Nodal spread & 3 liver mets. Lymphadenectomy
4/22 Liver SBRT
6/22 Liver looks good. Still some small lung things

stu
Posts: 1573
Joined: Sat Aug 17, 2013 5:46 pm

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

Postby stu » Sat May 28, 2022 3:33 am

Great to see the updates .

Rock_Rockster I have found earlier post where I am celebrating year 4, 5 etc . I will be celebrating with you when you keep upping the numbers .
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 .

kandj
Posts: 313
Joined: Sun Sep 27, 2015 11:29 am

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

Postby kandj » Sat May 28, 2022 9:19 pm

My husband is coming up on 7 years in August. He’s had several recurrences, still on chemo, but still fighting and living. I don’t think he will ever be cured, but we never thought we would be here this late in the game.
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
HAI placed 12/15
Liver resect 5/19/2016 15-20 mets (surgeon lost count)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
Chemo break 6/19-11/19 lung/adrenal gland recurrence 11/19
Adrenal ablation2/20 Robotic Assisted VATS 3/20 Xeloda again
9/2020 SBRT on Adrenal Met 2/2021 peripancreatic node zapped
into triple digit chemo rounds

User avatar
Peregrine
Posts: 100
Joined: Tue Mar 01, 2022 1:18 am

Stage IV - NED for how long now? (2021 snapshot)

Postby Peregrine » Sun May 29, 2022 3:03 am

Stage IV - NED for how long now? (2021 snapshot)
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=65587&p=509066#p509066

In the link above you can view the profiles of some of the Stage IV patients here who were NED as of 2021. From these profiles and signatures you might be able to tell how long they had been NED. The most recently registered Stage IV NED members are found at the bottom of the list, while those Stage IV NED members who first registered here many years ago are near the top of the list.

However, keep in mind that you can only view these profiles if you are registered here and logged in - "This board requires you to be registered and logged in to view profiles." (Lurkers here will not be able to access these profiles.)

kiwiinoz
Posts: 1163
Joined: Thu Jan 03, 2013 11:44 pm

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

Postby kiwiinoz » Wed Jun 01, 2022 9:21 pm

I'm nowhere near the longest stage 4 but upon reading this I realized that I am now up to 9.50 years. My goal when I was diagnosed was to beat the estimate of 2 years so I am pretty happy to still be here and well at the moment.
Makes me sad to see all those that are no longer with us.
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - August 2020
Port Out 26 March 2015

stu
Posts: 1573
Joined: Sat Aug 17, 2013 5:46 pm

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

Postby stu » Thu Jun 02, 2022 2:05 am

It sure does but it’s great to see yours pop up .

Hope life is treating you well .

Take care ,
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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