Hi everyone,
It has been a couple of years since I last checked in but this forum and my old "colon club" friends are always in my heart. I found so much information, hope and encouragement here to get through some of the darkest and most challenging days of my life, and truth be told, if it hadn't been for the camaraderie and support of this forum, I don't think I could have coped with my diagnosis.
So today, I am back to repay my debt and share hope with those of you who are finding yourselves in the thick of it. I was diagnosed stage IV colon (sigmoid) cancer with liver metastases in June 2011. Surgery, chemo and 2 years of maintenance (Xeloda & Avastin), and I am happy to report that I am still NED as of today. Starting this year, we spaced out my surveillance scans from 3 to 6 months, the longest I have ever gone without a scan so needless to say, scanxiety was especially overwhelming.
When I was first diagnosed, I desperately looked for survival stories ... knowing long-term survival was a possibility served as a lifeline at the time. I hope my story will provide some comfort to those who may need it.
2011 Stage IV Survivor - NED
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SoConfused
- Posts: 1027
- Joined: Mon Jan 30, 2012 2:40 pm
2011 Stage IV Survivor - NED
Stage IV CC
Re: 2011 Stage IV Survivor - NED
Thank you for checking in. A believe there are few newbies who are going to find hope in this thread.
And CONGRATULATION!!! May you always reside in NEDville.
Lee
And CONGRATULATION!!! May you always reside in NEDville.
Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!
Re: 2011 Stage IV Survivor - NED
Cheers and best wishes
KEEP ON !!!!
kickin' colorectal BUTT
On The Journey
CRguy
KEEP ON !!!!
kickin' colorectal BUTT
On The Journey
CRguy
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
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
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beach sunrise
- Posts: 1041
- Joined: Thu Mar 05, 2020 7:14 pm
Re: 2011 Stage IV Survivor - NED
Congrats to you!!! Celebrate 
And thank you for the confidence boost that there is hope for everyone!
And thank you for the confidence boost that there is hope for everyone!8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test
Re: 2011 Stage IV Survivor - NED
Lovely to see your name pop up !
Great news and I think you should add “ survivor “ in your signature! You most definitely are now . Do you remember some of the debates way back on when that could be used ? I think you most definitely qualify now .
Delighted to hear your news and so great to see all the old names popping back up still doing well . Hope for all just starting out .
Stu
Great news and I think you should add “ survivor “ in your signature! You most definitely are now . Do you remember some of the debates way back on when that could be used ? I think you most definitely qualify now .
Delighted to hear your news and so great to see all the old names popping back up still doing well . Hope for all just starting out .
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 .
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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I_will_fight
- Posts: 148
- Joined: Mon Jun 29, 2020 3:38 pm
Re: 2011 Stage IV Survivor - NED
Thank you, this is encouraging!
46 yo male Spain
06/2020 - 6cm T3N0M0 CC splenic flex
3 and 4 mm lung ground glass
lymp 0/37
dMMR MSH6
KRAS mt G13D
V/LNI absent
PNI present
07/20 - hemicol surg, optimistic surgeon.
11/20 - 4 x CAPOX completed.
12/20 - Clear colonoscopy
02/21 - MRI liver lesion unchanged.
11/21 - Clear CT
02/22- Colonoscopy: Sessil polyp 3mm
05/22- Clear CT
06/22- Negative Signatera
12/22- Negative Signatera
01/23- Clear CT
07/23- Clear CT, normal markers.
09/23 - Negative Signatera
01/24 - Clear CT
06/2020 - 6cm T3N0M0 CC splenic flex
3 and 4 mm lung ground glass
lymp 0/37
dMMR MSH6
KRAS mt G13D
V/LNI absent
PNI present
07/20 - hemicol surg, optimistic surgeon.
11/20 - 4 x CAPOX completed.
12/20 - Clear colonoscopy
02/21 - MRI liver lesion unchanged.
11/21 - Clear CT
02/22- Colonoscopy: Sessil polyp 3mm
05/22- Clear CT
06/22- Negative Signatera
12/22- Negative Signatera
01/23- Clear CT
07/23- Clear CT, normal markers.
09/23 - Negative Signatera
01/24 - Clear CT
Re: 2011 Stage IV Survivor - NED
Yes, seconding the thanks as this is indeed encouraging.
I just finished round 4 of chemo and we are retesting to see what all it's done.
Your story of hope is especially helpful at this time.
I just finished round 4 of chemo and we are retesting to see what all it's done.
Your story of hope is especially helpful at this time.
Diag Aug 2020, age 56, male
Sigmoid Colon Stage IV; Met liver & lungs
9/3,8/2020 CEA 1389; 1166
FolFox+Avastin 10/5/20 w/CEA 1721
Stopped Oxaliplatin after round 9 due to Neuropathy
Ended 12th rnd 4/6/21: CEA 8; CT Scan 85-90% reduction in tumors
Sept 2021 CEA low 600s
Oct CEA 1700; CT scan shows tumor growth
Started Avastin + Xeloda
2 weeks later CEA at 2550, cancelled Xeloda
11/1/21 started FolFiri+Avastin every 2 weeks
June 2023; round 45; CEA steady at ~1000. Tumors unchanged. Blood tests look good
Sigmoid Colon Stage IV; Met liver & lungs
9/3,8/2020 CEA 1389; 1166
FolFox+Avastin 10/5/20 w/CEA 1721
Stopped Oxaliplatin after round 9 due to Neuropathy
Ended 12th rnd 4/6/21: CEA 8; CT Scan 85-90% reduction in tumors
Sept 2021 CEA low 600s
Oct CEA 1700; CT scan shows tumor growth
Started Avastin + Xeloda
2 weeks later CEA at 2550, cancelled Xeloda
11/1/21 started FolFiri+Avastin every 2 weeks
June 2023; round 45; CEA steady at ~1000. Tumors unchanged. Blood tests look good
Re: 2011 Stage IV Survivor - NED
Big congrats to you!
I'm just a dude who still can't believe he had a resection and went through chemo (currently 13 years NED). Is this real life?
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Gravelyguy
- Posts: 382
- Joined: Thu Jul 05, 2018 6:03 pm
Re: 2011 Stage IV Survivor - NED
That is awesome! Thanks for sharing!
Dave
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!
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!
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