Stage IV, very happy to be still NED after 4 years

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LeonW
Posts: 318
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Stage IV, very happy to be still NED after 4 years

Postby LeonW » Sat Dec 02, 2017 7:00 pm

Hi dear ColoncClubbers,

I'm now 5 yrs after Dx and 4 yrs after liver surgery. Did progress to bi-annual checkups in Nov 2016, and had a routine CT with blood work Thursday (Nov 30).

Funny that, although life has returned to almost normal and check-ups have become routine, I'm always short fused some 10-days before every checkup.

We're scheduled for an official review of the results next week (Dec 5), but got nervous and had an early digital peek into the files; CT is clean again and CEA stable at the 1.4 level! We're also very happy with our medical team (again): with the CT at 10:00 AM on Thursday and blood done at 11:15, results were on the hospital site Friday 09:00AM and the scan results at noon !! With such good results, I guess weI'll call in Monday to suggest that we do the Wednesday review by phone.

Next check-up will be May 2018 with blood/CEA, Abdomen scan and a full colostomy. Then up to the 5-year mark in Nov 2018.

I feel very lucky that I've made it this far and wish you all have similar luck.
Thank you all for your support and advice. You've been great help in my return to normal life.

Leon

(day names corrected to match the dates - chemobrain to blame) LW Dec 3
Last edited by LeonW on Sun Dec 03, 2017 8:56 am, edited 2 times in total.
Dec 2012 - Dx CC; MM 65yrs, 2 unresect liver mets, CEA 41.8
Jan 2013 - colectomy @ spleen (IVa T3N1bM1a) 2/26 nodes, MSI-low
Feb-Aug - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Sept - 2x failed Portal Vein embolization
Oct 2013 - R liver resect 28 hosp days (liver failure, bad delirium, emboli, encephalopathy) pCR; cancer gone
2014/15 - recovery; benign polyp
Apr 2016 - new house/town/life
clean CTs and 1.3/1.4 CEAs: 4x2014, 4x2015/16, 2x2017
next: June 2018 w scopy - 5yr getting close

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CRguy
Posts: 9323
Joined: Sun Feb 10, 2008 6:00 pm

Re: Stage IV, very happy to be still NED after 4 years

Postby CRguy » Sat Dec 02, 2017 7:05 pm

All sounds VERY positive moving forward

Cheers and best wishes on staying NED
and moving ahead ... with LIFE !!!

Harmony
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Robino1
Posts: 225
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Stage IV, very happy to be still NED after 4 years

Postby Robino1 » Sat Dec 02, 2017 7:36 pm

Congratulations~

Totally awesome news :D

Doin' the happy dance for ya!! :lol:
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo Stage II
2017
Distended abd, pain in intestines.
CT scan shows seeding
Ascites
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
CEA: 9/30/17 -109; 10/12/17 - 99.1; 11/4/17 - 90.7; 11/30/17 - 70.7
BRAF V600e mutation :(

stu
Posts: 613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Stage IV, very happy to be still NED after 4 years

Postby stu » Sun Dec 03, 2017 3:34 am

Excellent news . Totally delighted for you .
Can’t believe it’s been four years !!!
Keep the good news coming ,
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

Lee
Posts: 5293
Joined: Sun Apr 16, 2006 4:09 pm

Re: Stage IV, very happy to be still NED after 4 years

Postby Lee » Sun Dec 03, 2017 5:42 pm

5 years is a major milestone, CONGRATULATIONS. Yes I can still get nervous when ever I need blood tests. Not as bad, butt it still happens.

Enjoy the upcoming holidays being 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 - 10 years and counting!

User avatar
LeonW
Posts: 318
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: Stage IV, very happy to be still NED after 4 years

Postby LeonW » Mon Dec 04, 2017 6:40 am

..
Dec 2012 - Dx CC; MM 65yrs, 2 unresect liver mets, CEA 41.8
Jan 2013 - colectomy @ spleen (IVa T3N1bM1a) 2/26 nodes, MSI-low
Feb-Aug - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Sept - 2x failed Portal Vein embolization
Oct 2013 - R liver resect 28 hosp days (liver failure, bad delirium, emboli, encephalopathy) pCR; cancer gone
2014/15 - recovery; benign polyp
Apr 2016 - new house/town/life
clean CTs and 1.3/1.4 CEAs: 4x2014, 4x2015/16, 2x2017
next: June 2018 w scopy - 5yr getting close

User avatar
LeonW
Posts: 318
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: Stage IV, very happy to be still NED after 4 years

Postby LeonW » Wed Dec 06, 2017 10:55 am

More Good News
Had the official review. Onc proposes to do the next checkup in June and then move to annual.
Feels like I'm slowly getting off the hook . . . .
L
Dec 2012 - Dx CC; MM 65yrs, 2 unresect liver mets, CEA 41.8
Jan 2013 - colectomy @ spleen (IVa T3N1bM1a) 2/26 nodes, MSI-low
Feb-Aug - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Sept - 2x failed Portal Vein embolization
Oct 2013 - R liver resect 28 hosp days (liver failure, bad delirium, emboli, encephalopathy) pCR; cancer gone
2014/15 - recovery; benign polyp
Apr 2016 - new house/town/life
clean CTs and 1.3/1.4 CEAs: 4x2014, 4x2015/16, 2x2017
next: June 2018 w scopy - 5yr getting close

User avatar
Robino1
Posts: 225
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Stage IV, very happy to be still NED after 4 years

Postby Robino1 » Wed Dec 06, 2017 11:14 am

LeonW wrote:More Good News
Had the official review. Onc proposes to do the next checkup in June and then move to annual.
Feels like I'm slowly getting off the hook . . . .
L


Very awesome news!!! Congrats. :mrgreen:
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo Stage II
2017
Distended abd, pain in intestines.
CT scan shows seeding
Ascites
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
CEA: 9/30/17 -109; 10/12/17 - 99.1; 11/4/17 - 90.7; 11/30/17 - 70.7
BRAF V600e mutation :(


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