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

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Dori
Posts: 426
Joined: Mon Jun 23, 2008 10:29 pm

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

Postby Dori » Wed Nov 18, 2009 7:00 pm

Belle, I feel much the same way, only I haven't asked my oncologist that exact question yet. I had a dream a couple of months ago about attending my eight year old's middle school graduation. I was ecstatic to be alive for the occasion. Since then it's started to dawn on me that I just might walk away from this. But then it feels like really bad luck to say that (I almost deleted it). Sigh.

Dori
47 years old
Stage IIIC, high grade signet ring, 14 out of 18 nodes affected
Colon resection 5/15/08
FOLFOX 6/08 - 11/08
Mom to a great 11 (!!) yo girl
Currently NED

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dianetavegia
Posts: 2731
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

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

Postby dianetavegia » Fri Nov 20, 2009 7:51 am

Thanks all! It's scary to only see posts by those who have had the disease spread. This should give us all hope!

BTW... my onc has always been 'positive' about my chances. :o)
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 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

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Joanne 814
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Facebook Username: Joanne Flynn Hoerrner
Location: Farmington, CT

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

Postby Joanne 814 » Fri Nov 20, 2009 8:33 am

I am IIIc with 4 nodes positive.

Tomorrow is my Cancerversary, the day I was diagnosed 2 years age November 2007.

2 year mark on diagnosis. One year out from treatment. Feeling good (knocking wood)!!

Hoping to hit the 5 year mark!!! And hope you all do too!!!

ONWARD!

Joanne
Age: 51
Dx: Nov 07 @ age 43
Stage IIIC, RCa
Colon Resection: Nov 07, 4 of 27 LN
Chemo/Radiation: 28 treatments w/constant 5FU (Jan-Feb 08)
Chemo: Folfox, 12 cycles (Mar-Aug 08) DONE 8-8-08
CT Scan 1-09 NED

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dianetavegia
Posts: 2731
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

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

Postby dianetavegia » Sat Nov 21, 2009 4:36 pm

Not sure if I should wish you a Happy Cancerversary or not. Wish we didn't have to ever think on these things again! Wishing you fifty more healthy years, how about that?

Diane
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 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

gofisch
Posts: 562
Joined: Mon Apr 07, 2008 9:06 pm
Location: Minnesota

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

Postby gofisch » Sat Nov 21, 2009 7:24 pm

Stage IIIA rectal tumor. NED since surgery, May 14, 2008.
Frances
47, Mom
Rectal tumor (stage III) 1/31/08
6 weeks radiation/5Fu
LAR w/ loop ileo May/08
Folfox 7/08-1/09
Done with chemo 1/2/09!!!
Reversal 10/8/09, ileus, blockage, resection, home after 30 days!
4 years NED!

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dianetavegia
Posts: 2731
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

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

Postby dianetavegia » Mon Nov 23, 2009 9:41 am

Congrats to Gail on being NED for 2 years today. :o)

Seems like a lot of us were dx'd around the holidays.
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 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

Mary316
Posts: 157
Joined: Thu Apr 19, 2007 12:37 pm
Location: Michigan

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

Postby Mary316 » Mon Nov 23, 2009 1:18 pm

I was diagnosed on Feb. 8, 2007; had surgery on Feb. 9, 2007.

Stage IIIc with 8/12 nodes positive. I completed treatment on Aug. 2007.

I too, am hesitant on talking about how far out from diagnosis I am for fear of jinxing it....but I do love reading about success stories, and if my info helps to make a "newby" not feel so down, then it is worth the risk. :D

Going in for my 3rd colonoscopy since diagnosis on Wednesday! Wish me Luck!
Mary
Stage IIIc Feb. 2007 (31 years old)
Completed chemo Aug. 2007
43 year old mother to 16 & 14 year old boys

Robin in Phoenix

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

Postby Robin in Phoenix » Mon Nov 23, 2009 9:40 pm

Hi, I have never done this but I felt strongly that I just had to after reading just a few of these. First of all, at the risk of sounding silly, what does NED mean? I guess I should know but I don't. Until I discovered this AMAZING website I felt rather alone in my diagnosis (of course I didn't get my fisrt computer util recently either LOL!) Anyway, I have been cancer free from my Stage III diagnosis for 6 1/2 years now and I have to ask the question to all of you.....does anyone else HATE the term remission as much as I do????? When people say to me, "Oh, so you're in remission then"....or, "So, how long have you been in remission?" is sounds as if they are saying , "You are so lucky, I hope your luck holds out....but WE all know it won't...ENJOY!" I always respond to those people the same way. I tell them...I'M CANCER FREE AND I PLAN TO STAY THAT WAY THANKS FOR ASKING! Anyway, I just wondered if I was the only person who finds that word annoying and negative....it just doesn't sound very FREE to me at all. Sorry for the rant but thanks for reading. Oh, by the way. I just ran in this weekends "Undy 5000" 5K for colon cancer here in Phoenix on Saturday......it was WAY fun and our team raised almost $1000....YEAH Team!!! Robin xoxo

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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 » Tue Nov 24, 2009 3:38 pm

HI Robin!! That's GREAT news.

NED is the new word for remission. It means 'No Evidence of Disease'. Remisson seems to mean, it's gonna come back... I don't like that word either! :o(
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 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

Guest

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

Postby Guest » Wed Nov 25, 2009 7:42 pm

eitter wrote:Liz Dennis Reporting in and Reporting in NED since Oct 2006. And I am wondering if I am the only Stage III to not have Chemo after surgery. am I?!


One oncologist told me that about 80% of all recurrences occur within the first 2 years after treatment ends, 99% within 5 years. So you are doing pretty good to get to 3 years without recurrence.

edsandra
Posts: 13
Joined: Wed Nov 25, 2009 4:04 pm
Location: Central Texas

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

Postby edsandra » Thu Nov 26, 2009 10:59 am

I was diagnosed with stage III rectal cancer T2,N1,M0. I have been NED since surgery on 8/6/08. Colonoscopy and CT scan within the last month confirmed NED. :D
Ed
70
DX rectal 4/1/08
28 Rad 5FU 24/7
Surgery 1 of 16 nodes 8/6/08
Stage III T2,N1,M0
FolFox 3 Treat 10/8/09
Flox 12 Treat 2/4/09
Stopped Eloxatin 12/31/08 feet tingle
Ileo rev 2/19/09 blockage 4/7/09
60 Hyperbaric Oxygen 8/14/09 rad damage
NED Jan 2012

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dianetavegia
Posts: 2731
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

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

Postby dianetavegia » Thu Nov 26, 2009 12:03 pm

Happy Thanksgivine and Congrats to all!

Thank you for sharing your NED praises! I know it gives hope to all those who have only recently been dx'd and those facing scans and other testing! NED is always GREAT news!

Hey, I also read 14 months to 2 years is the average time line for reoccurrence. In fact, one Stage III shared that the UK doesn't scan after 2 years.

Have a wonderful and thanks filled day!
Diane

Go Fish: Christmas Song 'It's About the Cross'
http://www.youtube.com/watch?v=0tNyKzIABfk
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 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

beckcmc
Posts: 3
Joined: Tue Nov 24, 2009 11:31 pm
Facebook Username: Becky Ennis Bruno

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

Postby beckcmc » Thu Nov 26, 2009 1:16 pm

So good to read all these comments. I finished chemo last week and am about to begin the wait and see period. So helpful to read about all the success stories. Thank you!!
Diagnosed Stage III Colon cancer May 2009 (4/22 LN +)
Laparoscopic colectomy May 2009
Completed 12 courses Folfox November 19, 2009
Married November 14, 2009!
NED and fingers crossed

laxmom3
Posts: 100
Joined: Tue Oct 21, 2008 3:28 pm

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

Postby laxmom3 » Thu Nov 26, 2009 5:41 pm

I'm Lisa and I would have to say I have been NED since April this year (kind of feels like I am at an AAA meeting :lol: ). That was when I had my first post chemo CT scan and colonoscopy and all was clear. I continue to see my onc every 3 months and my rad/onc every 6 months, though I did talk my onc into letting me see her every 6 months as well, starting in January so that I can alternate between the two.

One question I have for you all- my GI doctor said that since my colonoscopy was clear, no sign of cancer, and no polyps, etc. I didn't need to have another one for 3 years- is that normal? I was told it was, though I still feel uneasy about it. I was told a yearly CT scan was enough.


Feeling great and hope to continue...
Dx April, 2008 Stage III RC, 2 of 35 nodes pos.
LAR, Apr. 29, 2008
6 rounds Folfox, 5 weeks radiation w/ Xeloda
Finish last 6 rounds of Xolox Jan.12, 2009
Dx. DVT Jan. 18,'09
Mar. 2012 perm colostomy

Leigh
Posts: 92
Joined: Mon Jun 02, 2008 1:12 am
Location: Ontario

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

Postby Leigh » Thu Nov 26, 2009 8:52 pm

Stage 3b....surgery was in May 2008 and they thought they got all the cancer then....so I count May 1, 2008 as my mark...although I finished chemo this weekend (last weekend in November) last year (Nov. 2008). Here's hoping the December scans will still show me as NED.
Leigh
diagnosed with colon cancer April 2, 2008, 26 years old
laparoscopic sigmoidectomy May 1, 2008
stage IIIb, 1 of 11 lymph nodes positive
IVM procedure
12 rounds FOLFOX (June- Dec 2008), no oxy rounds 10-12 due to allergic reaction
NED


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