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

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

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

Postby Ron50 » Wed Jan 16, 2013 7:08 am

Hi Diane,
I received a post on CSN this week from an old friend of Many years. Virginia(foxy) was the only other person i knew who had levamisole as chemo. She was dxed in rural New zealand. She had colon surgery and a wedge resection of her liver for mets,stage 4. Like myself she suffers from several undiagnosed problems but she is 19 years ca free or as she likes to think of it ,next december she will be a tweny year survivor. Hope this cheers you up,Hugs 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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dianetavegia
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Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

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

Postby dianetavegia » Wed Jan 16, 2013 9:59 am

Thank you Ron! That's awesome. I struggle many days with worry about 'what if'. It's been 4 years and 9 days since my first surgery and 9 months 5 days since my liver resection. NED in late Dec. so here's praying I stay that way!

Thanks for sharing that awesome news on Foxy.
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

11 years since dx and 7 3/4 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

Staci's team
Posts: 386
Joined: Fri Sep 25, 2009 9:43 am
Location: Canfield, Ohio
Contact:

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

Postby Staci's team » Wed Jan 23, 2013 9:32 am

Staci had her standard follow-up visit with her onc yesterday, and he said that everything looks good and her stay in NEDsville isn't ready to end anytime soon....so that makes three years and a couple months of being NED since her surgery in November 2009. Wanted to share since we seem to be lacking good news on the board lately.


Chris
Husband to Staci, diagnosed at age 32
Clinical dx Stage II/III rectal cancer, 7/2009
APR surgery 11/09 leading to...
Pathological dx Stage IIIB, ypT3N1M0, 11/2009
http://www.caringbridge.org/visit/staciwills
Member of The Colon Club's Board of Directors

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very worried husband
Posts: 130
Joined: Mon Mar 28, 2011 1:20 am

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

Postby very worried husband » Thu Jan 24, 2013 11:53 am

Thanks Chris for updating. I have also a good news to share. my wife had her routine blood work on Jan 9th. The Doctor said if everything is good, we won't get a call. Well, it is two weeks since her tests, and we did not get a call about number, so i suppose everything is good.
two years NED after her operation on 28th January,2011.
God is great!! :mrgreen:
Caregiver to Wife age25
Diagnosed Colon IIIB Jan2011
7/29 Nodes +
5FU+Oxi in china. Feb-Aug 2011
CEA@Diagnose:0.79
Immunological chemistry: Ki-67 (+), MSH2(+), MLH1(++), ERCC1 (-)
NED Supplements: Aspirin,Vit D,Calcium, Genoderma Lucidium
Baby born June 2015 :D :D :)

Anonymouse
Posts: 101
Joined: Wed Oct 07, 2009 11:40 pm
Facebook Username: Jeffrey Hamilton
Location: Rio Rancho NM

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

Postby Anonymouse » Sat Jan 26, 2013 1:21 am

Had my 3rd colonoscopy since dx this morning, all clean. 3.5 years out, I'm starting to think cured.
Dx 9/2009 with 2 cancers in colon
KRAS wild,HNPCC/Lynch Syndrome (MSH2)
T3,N1,M0 Poorly differentiated Signet Ring
Total colectomy with ileorectal anastomosis 10/2009
FOLFOX complete 5/2010

LindaF

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

Postby LindaF » Sun Jan 27, 2013 4:08 pm

Stage III cancer free for 14 years. Operation was Oct 1998. Chemo ended Apr 1999.

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Jimswife
Posts: 904
Joined: Fri Nov 18, 2011 9:53 am

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

Postby Jimswife » Sun Jan 27, 2013 6:16 pm

Thanks Linda for posting this .... Pretty safety say your cured then after 14 years , did you have heavy lymph node involvement ? Have you done anything to contribute to staying ned all this time ? Excercise ? Supplements ?? Thanks so much for offering a ray of hope xxx
Victoria , Wife to Jim age 43 dx oct 2011
Stage 3 cc with 2 out of 21 positive lymph nodes
Folfox starts nov 11-may 12
All scans and bloods since surgery confirm no evidence of disease
Hoping to stay ned forever .... Fingers crossed !!!!!!!

MomsAdvocate
Posts: 4
Joined: Sun Jan 27, 2013 5:36 pm

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

Postby MomsAdvocate » Sun Jan 27, 2013 6:21 pm

What is NED?? It sounds like something we want to be. My mom is Stage 3 and age 88. She had her surgery on December 24th, 2012. She had two of 38 positive lymph nodes. Her CEA is currently 2.4.
Daughter of Mom age 85 with Stage 3 Colon Cancer
11-11-12: diagnosis
12-24-12: removed 19cm of ascending colon found 2.4cm tumor, 2 of 38 nodes, poorly differentiated and on nerve endings
01-21-13: CEA = 2.4
02-11-13: starting 6 mo Xeloda

disco nap
Posts: 991
Joined: Sat Aug 07, 2010 10:45 am

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

Postby disco nap » Mon Jan 28, 2013 6:21 am

MomsAdvocate wrote:What is NED?? It sounds like something we want to be. My mom is Stage 3 and age 88. She had her surgery on December 24th, 2012. She had two of 38 positive lymph nodes. Her CEA is currently 2.4.


Hey there: NED means "No evidence of disease" so we do want to be that!
DX July 2 '10 CC Stage IIIC, 11/18 nodes+
Right Hemi July 6 '10
Folfox: Aug 17'10 - Feb 17'11
Mar 2012: Lynch Syndrome MLH1
"Declared well" and been well ever since.
Update: Oct 2019 - still NED.

luvmymom
Posts: 278
Joined: Thu Nov 22, 2012 9:51 am

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

Postby luvmymom » Wed Jan 30, 2013 8:45 pm

In response to this thread,

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=39492

I am bumping this one.

Congrats to all you NED folks and please swing chickens at me and my mom (IIIB), because I want to return to this thread and post for real one day!
Daughter of mom dx @ 68, Stage IIIB (T3N1) rectal.
Colonoscopy 11/19/12. Dx adenocarcinoma 11/28/12.
LAR 1/2/13. Port 2/4/13.
2-7/13: FOLFOX6 (4x). Xeloda+radiation (28x). FOLFOX6 (4 tx).
9/25/13--1st CT post-tx. NED.
http://sunrainlilies.wordpress.com/

kholcomb1967

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

Postby kholcomb1967 » Fri Feb 08, 2013 12:12 pm

I was diagnosed Stage IIIB in Aug 2010
5FU pump, 28 radiation treatments, surgery, 6 months of FOLFOX
No evidence of disease 2011 to present :-)
Living and Loving Life!

pleistocene
Posts: 126
Joined: Fri Feb 19, 2010 5:04 pm
Location: San Diego, CA

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

Postby pleistocene » Mon Feb 11, 2013 12:46 am

Stage IIIb Rectal Cancer. Husband clean for over two years now (dx 11/09). Lots of post treatment complications, but cancer hasn't been on our radar for a while. Best wishes to everyone!
Wife of MrPleistocene, dx@32
DX 11/09 RC Stage IIIb/ T3N2M0
NeoAdjuvant Chemorad
4/10 LAR, Removed Seminal Vesicles, 4/19 Nodes
4/10-11/10 FOLFOX 10x
12/10 Bi-Nephrostomy
2/11 Reversal
2011 70 HBOT dives
Clean scan 8/12. Normal CEA 10/12.

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Bussman
Posts: 138
Joined: Sat Jan 22, 2011 1:49 pm
Location: Pennsylvania, USA

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

Postby Bussman » Mon Feb 11, 2013 5:29 am

Been waiting to post on this topic until I had two years under my belt (no pun intended). Stage 3b NED for two years since surgery in February 2011. A little more detail here:

viewtopic.php?f=1&t=39731

With much gratitude,
Bussman
1/21/11 dx CC @ 53
2/09/11 rt colon resect
0/18 LN; 4 tumor dep.
stage IIIB T4a N1c M0
3/11- 8/11 - 12 FOLFOX tx
6/11, 12/11 PET/CT scans- clean
1/12 follow-up scope - clean
6/12, 12/12,6/13 PET/CT scans- clean
NED

Hux

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

Postby Hux » Tue Feb 12, 2013 1:24 am

Diagnosed at 40 with stage III N2B colon cancer in the sigmoid colon May 2011. Colon resection July 2011. 12 treatments of Folfox finished 1/18/2012. Currently NED after two CT scans in 3/2012 and 10/2012. Mom to 3 daughters at time of diagnosis 7 months, 3, and 5.

nbrandt
Posts: 474
Joined: Sun May 01, 2011 7:42 pm
Facebook Username: craig.brandt

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

Postby nbrandt » Tue Apr 09, 2013 4:01 pm

Feel so blessed. I made it to 2.5 years NED. Still have my chemo port but praying my 3 year scan and colonoscopy in 6 months are OK and NED so I can have my port removed. Prayers for all of our Colon Club Family.
NBrandt
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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