For Stage III's: NED for how long now?

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John72
Posts: 335
Joined: Fri Jan 28, 2011 3:06 am
Location: Los Angeles

Re: For Stage III's: NED for how long now?

Postby John72 » Sun Aug 06, 2017 4:45 pm

7 years post surgery as of late July :)

Glad to see some of the other names who have posted in here as well :D
7/13/10 CC
7/23/10 -3C RC, 7cm,15/33 lymph nodes
8/31/10 5 1/2 weeks of radiation + Xeloda
11/12/10 6 rounds Oxy + Xeloda
3/25/11 Finished chemo
6/15/11 Colostomy reversal followed by infections
9/05/14 Clear CT scan

Ron50
Posts: 628
Joined: Fri Feb 10, 2006 7:04 pm

Re: For Stage III's: NED for how long now?

Postby Ron50 » Tue Aug 08, 2017 6:20 am

Glad to see you doing well John. Seven years was when my surgeon was finally convinced that I was finally clear of my cancer but then went on to warn me not to drop my guard as there would be others if I did. I stayed vigilant and so far stayed alive. Best wishes for a ca free future Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

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Annemiek
Posts: 303
Joined: Tue Apr 07, 2015 4:05 am
Location: The Hague, Netherlands

Re: For Stage III's: NED for how long now?

Postby Annemiek » Fri Aug 25, 2017 2:46 pm

Aaaand an other small milestone towards permanent residence in NEDville, 2 yrs and 8 months since my HIPEC operation stage 3c. Cea came back today at 1.8. And I actually forgot the appointment date to give blood, signs that it's no longer in front of my brain, but just in the back of my mind.
Will report back in December, three yr scan is a biggy!!

Annemiek

43 yr mum of a girl aged 7
10/2014 coloncancer stage IIIc
11/2014 HIPEC, tumor removed + 12 positive out of 60 ln
hysterectomy, abdominal lining partly removed
Peridonitus, stoma fitted, 6 abcesses drained in abdomen
MSS, kras
3/2015 Folfox, someones playing kill Bill inside me
9/2015 finished 12 rounds,
First scan results: NED!!!!!!!!!
4/2016 ct scan: NED!!!
7/2016 ultrasound: NED
10/2016 cr scan: NED
5/2017 ultrasound: NED 2,5 yrs!
CEA 8/2017 1.8 stable.
CT scan 11/2017 NED! 3 yrs
CEA 1.9

Cured
Posts: 485
Joined: Thu Nov 27, 2008 10:53 pm
Location: 64 yr. old Male

Re: For Stage III's: NED for how long now?

Postby Cured » Thu Aug 31, 2017 6:28 pm

9 Years! Today had a colonoscopy. It had been 3 years. All is clear and pink. My surgeon can't even see where anything was resectioned.
So good that he doesn't want to see me for 5 years! I turn 65 in a few months.

I AM CURED!

PS- Bear with me as I make this a new post, as well. I must encourage "new" people.
5-08:Stage 3 Rectal: 6/14 Nodes
Ace Surgeon Removed 90%Rectum & lots of Colon-Full Incision
Ileo Rev'd @6 Mos.
Radiation+5fu Pre-Surgery
FOLFOX 8 Cycles Done 1-09
Clear Scope 8-17; Clear CEA 2-17
Glory to God! Healed by prayers of many

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Robino1
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Location: Florida

Re: For Stage III's: NED for how long now?

Postby Robino1 » Thu Aug 31, 2017 6:56 pm

Cured wrote:9 Years! Today had a colonoscopy. It had been 3 years. All is clear and pink. My surgeon can't even see where anything was resectioned.
So good that he doesn't want to see me for 5 years! I turn 65 in a few months.

I AM CURED!

PS- Bear with me as I make this a new post, as well. I must encourage "new" people.


That is awesome! Congratulations!
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 :(

vancanes
Posts: 10
Joined: Fri Oct 06, 2006 1:24 pm

Re: For Stage III's: NED for how long now?

Postby vancanes » Wed Sep 06, 2017 9:20 pm

Hi Diane,

Stage IIIC
13 years NED on November 16, 2017

Lori

teacher2017
Posts: 126
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: For Stage III's: NED for how long now?

Postby teacher2017 » Mon Oct 02, 2017 6:13 pm

Thank god for this thread! I was just diagnosed and honestly, blindsided. On stage 3- 11/17 lymph nodes. I'm so upset. Glad to see so many survivors. I WILL BE ONE OF YOU.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8 started
CEA level- 1.4 11/8
Hoping clean up chemo works!

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Robino1
Posts: 227
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Facebook Username: Robin.lawthers
Location: Florida

Re: For Stage III's: NED for how long now?

Postby Robino1 » Mon Oct 02, 2017 6:33 pm

teacher2017 wrote:Thank god for this thread! I was just diagnosed and honestly, blindsided. On stage 3- 11/17 lymph nodes. I'm so upset. Glad to see so many survivors. I WILL BE ONE OF YOU.


That is exactly the mind set you need to focus on.

I'm stage 4 and I am prepared to battle (am battling) for my life. I. Will. Survive. My subconscious is also in the battle with me. After my last CEA (was 202) I had a dream that the next one was 112. It wasn't far off. It's now down to 109. :D
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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horizon
Posts: 1434
Joined: Tue Apr 12, 2011 10:10 pm

Re: For Stage III's: NED for how long now?

Postby horizon » Mon Oct 02, 2017 8:53 pm

teacher2017 wrote:Thank god for this thread! I was just diagnosed and honestly, blindsided. On stage 3- 11/17 lymph nodes. I'm so upset. Glad to see so many survivors. I WILL BE ONE OF YOU.


Robino1 wrote:I'm stage 4 and I am prepared to battle (am battling) for my life. I. Will. Survive. My subconscious is also in the battle with me. After my last CEA (was 202) I had a dream that the next one was 112. It wasn't far off. It's now down to 109. :D


Keep up the good fight. You never know what the future has in store for you.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 6 years NED). Is this real life?

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Shana
Posts: 156
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: For Stage III's: NED for how long now?

Postby Shana » Mon Oct 02, 2017 11:49 pm

Robino1 wrote:
teacher2017 wrote:Thank god for this thread! I was just diagnosed and honestly, blindsided. On stage 3- 11/17 lymph nodes. I'm so upset. Glad to see so many survivors. I WILL BE ONE OF YOU.


That is exactly the mind set you need to focus on.

I'm stage 4 and I am prepared to battle (am battling) for my life. I. Will. Survive. My subconscious is also in the battle with me. After my last CEA (was 202) I had a dream that the next one was 112. It wasn't far off. It's now down to 109. :D


I'm stage 4 also and feeling positive that I can and will survive this too. I believe that a positive attitude helps the treatments do their job and it also feels better to be optimistic. These threads are so helpful and give us hope!
DX - 12/16
MSS - KRAS wild
Stage IV colon cancer with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17 - 2 wks on, 1 wk off to lessen side effects
CEA 12/17 - 37.8! Finally a measurable number down from the thousands!
CT-Scan 9/1/17. Shrinkage of liver mets (4 measurable) and no bowel blockage
CT=Scan 12/1/17 Shrinkage of liver mets continue, no blockage
Removal of primary tumor and resection to be discussed next Spring 2018 based on continued positive progress

AbbyDoo
Posts: 134
Joined: Wed Jun 29, 2016 2:25 am
Location: So.Ca.

Re: For Stage III's: NED for how long now?

Postby AbbyDoo » Tue Oct 03, 2017 2:17 am

Just past the two year mark a couple days ago..feeling pretty dam proud of myself.
Deffently not an easy two years. Butt glad it behind me now.
53 yrs old
4/30/15 colonoscopy Mass found
5/21/15 staged 3 C rectal cancer
7/3/15 finished xeloda and radiation 28 rounds
9/30/15 LAR
10/29/15 picc line installed
11/2/15 start chemo 5 fu Oxaliplatin
3/7/16 Finish Chemo
4/29/16 Ileostomy Reversal.
7/13/16 colonoscopy clear.
CRC survivors know there Sh%t

teacher2017
Posts: 126
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: For Stage III's: NED for how long now?

Postby teacher2017 » Thu Oct 05, 2017 7:35 pm

Lee wrote:
laniemarie427 wrote:By 2011-12, . . . Psoriasis.



Congratulation on your NED status. I'm a 13 yr survivor. That word, psoriasis, caught my attention. Last summer, I was diagnosed with psoriasis. Dr was a bit surprised as I guess most people are diagnosed in there mid 20's, not their late 50's.

Anyway I always suspected my cancer/chemo treatment has something to do with me getting psoriasis. They threw the kitchen sink at me too. In fact when I got FOLFOX it was only available for stage IV folks. I was a stage IIIC. It was an experimental drug back in 2004. I was my Onc 1st and only patient for many months to get FOLFOX. I was selected for my overall good health and young age (47). To read they threw the kitchen sink at you too, I suspect there is a connection.

Thank you for checking in and the update.

Lee


I'm sure there is a connection, Lee! I got psoriasis maybe two years ago. Very strange. Even had a lupus test done. Negative. I think there is a link. I was just DX with stage 3c. I'm so upset.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8 started
CEA level- 1.4 11/8
Hoping clean up chemo works!

nbrandt
Posts: 471
Joined: Sun May 01, 2011 7:42 pm
Facebook Username: craig.brandt

Re: For Stage III's: NED for how long now?

Postby nbrandt » Mon Oct 30, 2017 11:19 am

Told in 2010 by Mayo Oncologist I am in the group most likely to recur. My survival stats were bleak But My sister a Mayo Pediatrician told me even if the percentage of survival was low someone survives so sit might as well be me. I learned to live treatment to treatment and then scan to scan.

This month had my colonoscopy and have graduated from 3 years to 5 years. Happy to be here 7 years later.

Have severe chemo Nueropathy feet, legs, hands, and left side of my face which effects runney nose dry eyes.


Happy to see many of those who encouraged me that one can survive IIIC with colon cancer in the appendix and right colon.
NB
DXCCT3N2aMx 5/20LN
Folfox10/10-4/11
Scan 10-13-10,4-4-11,7-4-11,9-22-11,4-9-12,9-24-12,10-1-13,4-9-14,9-17-14,9-10-15,9-15-17NED,
CEA 1. Pre .6 7-4-11 .7 9-22-11 .6
1-13-12 .9 4-9-12 .7 9-24-12 .6 1-4-13 .8 10-1-13 .8 4-9-14 .7 9-17-15.8
Courage, Hope, Health

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NZJay
Posts: 640
Joined: Mon Dec 16, 2013 3:00 pm
Location: NZ

Re: For Stage III's: NED for how long now?

Postby NZJay » Mon Oct 30, 2017 11:38 am

after my scope last week, I'm NED 3 years and 11 months. Final scan to come :arrow:
11-13 Dx CC
SPS T4b(touched stomach organ),N1(3/23),M0(Stage 3B)
11-13: resect + partial gastrect
2-14: 1 Tx Cape + Oxy; renal failure, colitis
4-14: 7 Tx Capecitabine
1-15: clear CT
7-15: clear scope
1-16: clear CT
3-17: clear CT
10-17: clear scope (5 year gap now!)
CEA@dx: 8.4 / 6-15: 4.0 / 10-15: 4.2 / 2-16: 4.9 / 7-16: 4.9 / 11-16: 5.0 / 6-17: 4.5
NED since resection

teacher2017
Posts: 126
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: For Stage III's: NED for how long now?

Postby teacher2017 » Mon Oct 30, 2017 3:18 pm

Bumping this up! Anyone out there who had a left side tumor removed with lots of lymph nodes? I'd like to hear from Stage 3c survivors.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8 started
CEA level- 1.4 11/8
Hoping clean up chemo works!


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