For those who have NOT had recurrance whatever the stage

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For those who have NOT had recurrance whatever the stage

Postby Jimswife » Sun Dec 30, 2012 4:59 am

Just curious .... I know many people using this forum are newly diagnosed / in active treatment / care partners of the latter etc etc and its been said before that you don't hear of all that many that are now cancer free and have been for some years as apparently they no longer feel the need to use the site , so just thought it would be good to see just how many do still come back and that have remained free from this awful disease , I've been on this board just over 12 months so I tend to know quite a few of the active members history anyway but for the people who don't and also for the newcomers needing that little bit of hope can I thought I start this to see who's remained NED / CANCER FREE .... Everyone's story is welcome whatever the stage .
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 !!!!!!!

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Re: For those who have NOT had recurrance whatever the stage

Postby Asterix » Sun Dec 30, 2012 5:57 am

I was diagnosed in Nov 2011, emergency hemicolectomy. Omentum deposit that came out at the same time. PET shortly after showed 2 distant lymph nodes lighting up, but they were normal sized. No organ mets.
Started FOLFOX in Jan 2012, repeat PET in March 2012 was clear. Those nodes didn't light up any more. False positive? Complete response to chemo? Who knows. Doesn't matter, the omentum deposit made me Stage IV regardless, so treatment would have been that same. Obviously it would be nicer if it was a false positive because then all the visible cancer was resected. CT was clear in June. Next CT in 2 weeks. Currently off treatment, as I had 2 new polyps removed at follow up colonoscopy last month. Plan is to restart Avastin in 2 weeks, for at least a year. Still not really sure how Avastin is meant to help with no solid tumour, but onc feels it can stop microscopic tumours getting a start since they can't get a blood supply, so they die off before they even can be detected on scans. He's got me this far, so I guess I should keep listening. I think I'm an odd case, I haven't found anyone here that has a similar clinical history to me, so I guess it makes it hard to know how to treat me. I've been NED for 9 months now and feeling almost back to normal - except for this sore neck on turning my head and a sore achilles on waking that my onc says is nothing to do with cancer or my treatments. Seeing a physio tomorrow about the neck - hopefully they can help.
Stage IVb age 37 Nov11
FOLFOX+Avastin, Xeloda+Avastin
1 year NED
regorafenib Oct13-Feb14
lymph node, lung, spine, rib and liver mets
GNAQ Q209P mutation > Mekinist Jul14
Radiation bone mets Aug14
Pain>hospital Oct14
Home Xmas 14

disco nap
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Re: For those who have NOT had recurrance whatever the stage

Postby disco nap » Sun Dec 30, 2012 7:30 am

Stage IIIC, no recurrence yet and I still come here every day. (Although my next round of tests are next week so that could change pretty fast).

I try to contribute as much as I can but I do admit that I do not relate to this site as much as I used to. A lot of my experiences with cancer have been forgotten. And, a lot of the people that were around when I first joined aren't with us any longer.

I still try to support as much as possible.
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.

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Re: For those who have NOT had recurrance whatever the stage

Postby Bob_Weiss » Sun Dec 30, 2012 10:48 am

It has been 3+ years since my surgery to remove a Stage 3 rectal tumor, and I remain NED. Nonetheless, I go to this site regularly as I still consider myself a cancer patient, with anxiety each time I am close to the date of my next follow-up scan and medical exam.
Stage 3 R/C -1 node+ ( 7/09)
5 wks radiation, 2 wks chemo: 5FU (8-9/09)
Rectal surgery: tumor removal (11/09)
10 rounds Xeloda: 3000mg/daily 1 wk on/1 wk off (1/10-6/10)
Supplements: Aspirin, Calcium, Vit. D3
03/27/17: 7+ yrs. since surgery--still NED

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Re: For those who have NOT had recurrance whatever the stage

Postby Jachut » Sun Dec 30, 2012 4:45 pm

2years NED -I do still come here because I feel like I'm. Long way off full health yet - cancer is one thing but surviving it is an entirely new challenge.i feel like I needed way less support to get through treatment than I do now.

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Re: For those who have NOT had recurrance whatever the stage

Postby Surroundedbylove » Sun Dec 30, 2012 4:51 pm

Just slightly over 4 years now.

Over the last year I've come to the sight much less often and have hardly posted at all in the last few months. For me, it isn't that I don't care or feel like I can't help others, it is that I really miss many of the people we have lost and it is harder for me to move on living my life and dealing with post-cancer health issues if I keep coming back. So, I've become one of the people I didn't want to be! :-) I'm not around much anymore.

My cancer prognosis is very good the docs say and here's hoping it continues that way.


Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019

Fran Gee

Re: For those who have NOT had recurrance whatever the stage

Postby Fran Gee » Sun Dec 30, 2012 5:11 pm

Hi. I have been ned since my sigmoid surgery in Oct. 2006. I was staged 3c and had 8 5fu chemo out of the 12 scheduled. I was miserable and told the onc that I would rather die than be this sick. Not too smart but somehow it has worked for me. Had the yearly Pet/CT and a couple colonoscopies in between, all under the care of a wonderful GI doc. I never went back to an oncologist and hopefully I never will have to. I must state that I was 73 at that time of surgery and I'm sure that had a lot to do with my decision to stop chemo. Big 80 coming up next if my COPD allows.
This forum was a wonderful thing for me and have been an avid reader, grieving along with the rest of you on the losses of so many young people.

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Re: For those who have NOT had recurrance whatever the stage

Postby weisssoccermom » Sun Dec 30, 2012 5:24 pm

Quick synopsis. Dxd in June 2006. Initially staged at stage IIA rectal cancer. 5-6 weeks of chemoradiation - first week with 24/7 pump - then switched to Xeloda. Pretty adamant about no LAR due to bowel issues that seem rather common. First attempt at transanal excision was aborted. Did 5.5 more months of Xeloda only (attempted one cycle of XELOX - what a nightmare - HORRIBLE side effects -onc refused to continue oxi - thank goodness!). Blood clots galore in January 2007 - hospitalized. Successful transanal excision with fantastically superb CRC surgeon @ Swedish in Seattle (4/20/07). Pathology came back totally clear. Only 1 or 2 nodes (can't remember) in the specimen. Have been followed up meticulously. No recurrences, no more chemo. Will be 6 years in April that I had my surgery. Finished with onc as he left practice (dxd with cancer) and now followed by GP & surgeon. Waiting on my hopefully FINAL CEA that was drawn yesterday. CBC/CHEM all normal.

I still come here daily and try to post. Am also a moderator. It's been scary a LOT of the time....worrying about any & every little GI upset or slight change in CEA but over time, it DOES get better and you don't freak as much about every little ache and pain. My next colonoscopy in Feb and hopefully if nothing is found, I'll be on the 5 year plan!! Not sure if I'm quite ready to say bye bye to my surgeon's followups just yet....taking that one month at a time.

Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
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Bob Bones
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Re: For those who have NOT had recurrance whatever the stage

Postby Bob Bones » Sun Dec 30, 2012 5:28 pm

Mostly just lurk to see how everybody is getting on but do comment on the odd story where I can feel my knowledge gained could help somebody.

I will be 7 years cancer free at the end of January from a stage 3C diagnosis
Sigmoid Tumor 5cm T(3) , 11/23 nodes
Stage IIIC at age 37, Poorly differentiated
Surgery 23/01/06 ( Laparoscopic )
Converted to Formal because of my anatomy!
6 months of Xeloda
NED 10 years (touch wood)
Lynch Syndrome MSH2

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Re: For those who have NOT had recurrance whatever the stage

Postby hopeful » Sun Dec 30, 2012 5:33 pm

My husband was diagnosed in Nov. of 2009 and he has been clear since. His last CEA was in Oct. and last scan in July. He has a 6 month follow-up scan in a couple weeks. Praying that everything will still be clear.
Caregiver to husband diagnosed 11/09 stage IIIb colon cancer
Surgery 11/5/09
12 rounds FOLFOX beginning 12/18/09
Folfox finished 6/3/10
Last scan Jan 2015
NED since Dec. 2009

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Re: For those who have NOT had recurrance whatever the stage

Postby Kekeg » Sun Dec 30, 2012 5:38 pm

Diagnosed May 2011, completed chemo Feb 2012' so far scans negative.
KeKeG age 58
Colon cancer - adneocarcinoma dx 5/2011
Stage III b
Rt colectomy 5/2011
Chemotherapy 6/2011 -2/2012
5FU, leukovorin, irrintocan
PET clear 2012
Lung nodules on chest CT 8/2012, unchanged 12/2012
CT 4/9/2013 NED, nodules unchanged
CT 4/2014 NED, nodules unchanged
CT 4/2015 NED nodules both lungs, unchanged size
CT 5/2016 NED 5 year survivor of Stage IIIB!!

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Re: For those who have NOT had recurrance whatever the stage

Postby Granny » Sun Dec 30, 2012 6:00 pm

Dx May 2011. Stage IV. 5FU, radiation, surgery, folfox. Ned to date. Next testing in February.

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Re: For those who have NOT had recurrance whatever the stage

Postby kimmercans » Sun Dec 30, 2012 6:27 pm

Dx'd 10/12/12....believed to be stage op I was graduated to stage 2a rectal ca. 5 weeks post op radiation and 3 months of Xeloda.
NO recurrence (knocking vigorously on big hunk of wood!)

I visit site at least something a couple times per month.

Best of life!
Kimberly Age 54 Diagnosed at 44
Dx'd rectal ca 10/12/09
LAR,TME 10/14/2009 Stage 2a
Opted out of Folfox.
4/19/12 CT scan clear NED CEA<0.5
10/2019 still NED
Taking curcumin, Celebrex, vitamin d, digestive enzymes, bio identical hormone replacement.
2015 to present. Stopped all surveillance. Living life one glorious day at a time.

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Re: For those who have NOT had recurrance whatever the stage

Postby Ron50 » Sun Dec 30, 2012 6:27 pm

Dxed Jan 1998 stage 3 c 6 nodes. Surgery and 12 mos chemo . Clear of ca since then. 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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Re: For those who have NOT had recurrance whatever the stage

Postby SkiFletch » Sun Dec 30, 2012 6:38 pm

Still kicking, recurrence free for over 3 years now. *knocks on wood*

A LOT of folks who go through treatment and remain NED tend to stop posting here. Their need for the support a place like this offers drops, and most get on with their lives. If you ask me, that's a good thing. It means cancer was just a bump on the road of their good lives.
11/13/09 5cm Stage IV 9/25 lymph nodes w/2cm peritoneal met at 29 YoA
12/15/09 LA right hemi-colectomy
6/16/10 Folfox FINISHED
8/10/10 Prophylactic HIPEC
10/9/10 got Married :D
Still NED and living life to the fullest

"Can any one of you by worrying add a single hour to your life."

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