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

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susie0915
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Re: For Stage III's: NED for how long now?

Postby susie0915 » Thu Dec 07, 2017 9:58 pm

lauragb wrote:Hi all! I was Stage IIIB rectal cancer and am now over 6 years out from surgery in which I had a complete pathological response to the chemoradiation. It has been a fabulous yet at times trying 6 years with reversal, then surgery for a bowel obstruction, then bone marrow biopsy for wonky blood counts (it took 5 years for my blood counts to reach almost normal levels post treatment),then lung nodules suspicious for lung cancer that ended up being nothing but were monitored for two years, blood in urine that just ended up being radiation irritation, and now finally almost a year of no one looking for anything! I just put all this on here to encourage any of you dealing with this kind of stuff. It feels good to have NED in the building. Best wishes to anyone needing encouragement.

I had a 4 mm lung nodule show up on my scan last May. A recheck in July showed no change. My oncologist believes it is related to scarring and inflammation in my lungs. I was referred to a pulmonologist the year before and I am now being monitored for a auto immune disorder although it is not known exactly which one since I don't have many symptoms except lung issues and raynauds in my hands. The pulmonologist agreed she didn't think it was a met and could be related to the scarring but did throw out the possibility of a new lung cancer. Since so small we watch and wait to see if it grows. I have another scan in January which will be 6 months from the last. Hopefully no change or shrinking. Your story of lung nodules helps me feel better and hopeful l as I know as I get closer to the scan anxiety will begin.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

hawkowl
Posts: 115
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

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

Postby hawkowl » Thu Dec 07, 2017 10:12 pm

Diagnosis 12/11/2014
"NED" at time of surgery 8/12/2015
Scans and CEA remain stable as of 10/2017
Dx 12/2014 T3N2MX (iliac nodes) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.
6/2018 CEA still normal.

Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

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Shana
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Location: Sonoma, CA

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

Postby Shana » Wed Jan 10, 2018 1:56 pm

GreenLakeGirl wrote:Bumping up.
Eight years since my stage III diagnosis, and six years since my lung surgery/scare.


Saw your posts regarding Miss Molly and then read your history. Wow, your story is heartwarming and I'm so glad to know that you are here watching your daughter grow up!

Take care and forever NED!

Shana
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

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GreenLakeGirl
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Location: Pacific NW

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

Postby GreenLakeGirl » Wed Jan 10, 2018 9:23 pm

Shana wrote:Saw your posts regarding Miss Molly and then read your history. Wow, your story is heartwarming and I'm so glad to know that you are here watching your daughter grow up!

Take care and forever NED!


Awww, thanks! She's a fifth grader! :shock:

Congrats on the continued shrinkage! I can't say that everyday... :)
2009, age 37 with a 2yo: CC, IIIB (T4N1M0). IBD history
2010-11: FOLFOX, 12 rounds. 5 surgeries (3-step Ileal j-pouch, infection, VATS)
Currently NED.
Mom, you can go the hard way if you want, but the easy way is much easier. ~my 3yo

nkoske
Posts: 442
Joined: Fri Feb 22, 2013 2:00 pm
Location: California

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

Postby nkoske » Thu Jan 11, 2018 1:37 am

Been meaning to post a new thread on my journey, but haven't got there yet...I still will, although there's some additional things in the works before I want to end this chapter.

Anyways...I just had my last follow-up 5 years from Dx. I had a CT, MRI, and Colonoscopy.

Scope Findings:
There was an intact anastomosis at 6cm. The remaining colon was normal.
The distal rectum was normal.

MRI Impression:
Post left hemicolectomy, colorectal anastomosis, and treatment changes of the rectum. No MR evidence for recurrent or metastatic disease.

CT Impression:
Scattered sub-4 mm pulmonary nodules are unchanged when compared back to 2012. No new pulmonary nodules are identified. No definite
evidence of metastatic disease.


So...boo-freaking-yah...I graduated from Medical Oncology. Does feel weird to not have anymore follow-ups. Colonoscopies will be done at two year intervals at this point, so fall of 2019 is my next scope (man...and I was just getting good at the prep. only took seven scopes in 5 years :wink: )

I remember driving home from the GI docs office after getting my diagnosis and thinking whether or not I'd get to see my, then one and a half year old, son grow up. Now he's almost 7 and I feel so fortunate to have had these last 5 years and hopefully many more in the future. I'm not sure a cancer patient is ever "cancer-free" as I'm not sure a day has passed that I haven't thought about my cancer, but it has gotten easier to have those thoughts passed through and not stay long.

I want to thank everyone here as Colon Talk was hugely helpful while I was in the "shit".
Nick, DX @ age 34, IIIB Rectal Cancer 10/2012
ChemoRad IMRT 11/2012
Laparoscopic LAR 1/2013 (No Ileo)
Post Surgery Path IIIB (2/15 LN)
Chemo 2/2013 (XelOx)
Currently NED, Graduated from Med Onc 10/2017

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susie0915
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Re: For Stage III's: NED for how long now?

Postby susie0915 » Thu Jan 11, 2018 8:14 am

nkoske wrote:Been meaning to post a new thread on my journey, but haven't got there yet...I still will, although there's some additional things in the works before I want to end this chapter.

Anyways...I just had my last follow-up 5 years from Dx. I had a CT, MRI, and Colonoscopy.

Scope Findings:
There was an intact anastomosis at 6cm. The remaining colon was normal.
The distal rectum was normal.

MRI Impression:
Post left hemicolectomy, colorectal anastomosis, and treatment changes of the rectum. No MR evidence for recurrent or metastatic disease.

CT Impression:
Scattered sub-4 mm pulmonary nodules are unchanged when compared back to 2012. No new pulmonary nodules are identified. No definite
evidence of metastatic disease.


So...boo-freaking-yah...I graduated from Medical Oncology. Does feel weird to not have anymore follow-ups. Colonoscopies will be done at two year intervals at this point, so fall of 2019 is my next scope (man...and I was just getting good at the prep. only took seven scopes in 5 years :wink: )

I remember driving home from the GI docs office after getting my diagnosis and thinking whether or not I'd get to see my, then one and a half year old, son grow up. Now he's almost 7 and I feel so fortunate to have had these last 5 years and hopefully many more in the future. I'm not sure a cancer patient is ever "cancer-free" as I'm not sure a day has passed that I haven't thought about my cancer, but it has gotten easier to have those thoughts passed through and not stay long.

I want to thank everyone here as Colon Talk was hugely helpful while I was in the "shit".

I'm so glad you are doing well. It is nice to hear that it does get easier to deal with the fact you have had cancer. I do think about it almost everyday and have been cancer free for over 2 years. As the lung nodule found in my lung in last year's scan continues to be stable I'm sure I will begin to feel more at ease.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

Ron50
Posts: 665
Joined: Fri Feb 10, 2006 7:04 pm

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

Postby Ron50 » Mon Jan 22, 2018 1:42 am

After my surgeon removed my colon cancer. He had a serious talk with me to the effect that he had been removing cancers for a very long time and he had rarely encountered one as aggressive as mine. He said straight out I am sorry it will get you probably within three years. I was absolutely certain that cancer would not get me and I told him so , in a respectful way , I might add. He just laughed and said I hope you are right but I really fear you are wrong. I went thru a terrible 48 sessions of chemo including some drugs that are no longer used. Today is the 20th anniversary of my operation to free me from cancer. I have had more than enough scopes and scans but I remain cancer free. I have quite a few long term problems that more than likely stem from some of the chemo drugs. I am basically holding several auto immune problems at bay with cyclosporine and taking warfarin to stop my ailing heart churning out blood clots due to atrial fib. But I keep on going and still working (I repair sewing machines) . I still have regular scopes but the doctors have finally given up panicking about cancer every time I get ill. Wishing all of you well and I want you all to remember that when it comes to surviving cancer ,some of us just do. Just keep on believing you will, Hugs to all 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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Robino1
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Re: For Stage III's: NED for how long now?

Postby Robino1 » Mon Jan 22, 2018 8:51 am

Wow! Sounds like me. I'm determined cancer will not get me. My oncologist said to me "You look great. You've learned to live with cancer". I replied "I'm Living". Period.

She also told me it will come back. In my mind I'm saying No. It. Won't.

You do inspire me. :)
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

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

Postby Shana » Thu Jan 25, 2018 5:24 pm

Robino1 wrote:Wow! Sounds like me. I'm determined cancer will not get me. My oncologist said to me "You look great. You've learned to live with cancer". I replied "I'm Living". Period.

She also told me it will come back. In my mind I'm saying No. It. Won't.

You do inspire me. :)


Ron,

I echo Robin with a big WOW! Thank you for reminding us that there is hope and that doctors are human and can't always predict how things will turn out. Stay well and keep on living!

Robin,

I'm with you... I'm living and I'm not going to let this get me either. You inspire me too! :D

Thanks for the uplifting words!

Shana
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

fsns3421
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Facebook Username: saifulnahar.sidek

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

Postby fsns3421 » Wed Feb 28, 2018 12:51 am

Hi I'm from Malaysia. My wife aged of 47y old. After surgeon to removed colon canser on 21st Jan, from the lab result stage 111b with 19/1 positive lymp node. Started 1st cyxle Chemo 22nd Feb 18', 1 out of 12 cycles Foldox (6 months) Chemo to go ( with regim Oxaliplatin, Folinic Acid, 5FU Bolus and 5 FU continuios infusion). So far so good my wife can do an usual activities as normal. By read this forum it will inspiring both of us and will always pray to Him to have NED in the future.

fsns3421
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Re: For Stage III's: NED for how long now?

Postby fsns3421 » Wed Feb 28, 2018 12:54 am

Lee wrote:I was diagnosed in April 2004, guess I've been NED since August 2004 (5+ yrs) when I had my surgery. I finished chemo in February 2005. On my last visit to my Onc, in August 2009, she said she didn't want to see me again until Aug. 2010; I have been seeing her every 6 mths for the past 2 years. I will be seeing my surgeon sometime next year for my colonoscopy, I did not have to see her this year, a first in 4 years as I had scopes every year for the first 4 years. I was diagnosed rectal cancer IIIC.

Lee
Hi Lee, did you take any suppliments with you.

Lee
Posts: 5694
Joined: Sun Apr 16, 2006 4:09 pm

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

Postby Lee » Sun Mar 04, 2018 6:09 pm

fsns3421 wrote:
Lee wrote:I was diagnosed in April 2004, guess I've been NED since August 2004 (5+ yrs) when I had my surgery. I finished chemo in February 2005. On my last visit to my Onc, in August 2009, she said she didn't want to see me again until Aug. 2010; I have been seeing her every 6 mths for the past 2 years. I will be seeing my surgeon sometime next year for my colonoscopy, I did not have to see her this year, a first in 4 years as I had scopes every year for the first 4 years. I was diagnosed rectal cancer IIIC.

Lee
Hi Lee, did you take any suppliments with you.


When I was in active treatment, I was not allow to take anything, not ever over the counter vitamins. Please understand, I was diagnosed almost 14 years ago, FOLFOX was experimental and at that time, the medical field was still learning of it benefits. Thus I was under Dr. order not to take anything.

There has been a lot of advancements in this past decade with new options coming around the corner, especially with immunotherapies.

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!

nbrandt
Posts: 472
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Facebook Username: craig.brandt

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

Postby nbrandt » Mon Mar 19, 2018 11:15 pm

Hello Friends,
I wish to give all those just diagnosed the inspiration to live your life with hope. In 2010 Told by Oncologist at Mayo Clinic get your life in order. Diagnosed with colon cancer in both the appendix and right colon. My oncologist told me I was in the group most likely to recur. I had a few scares along the way with ovarian year 1 but ok. Year 2 breast cancer scare but tests determined ok. Year 3 had my chemo port out. Year 4 my Mayo Oncologist was retiring and we discussed doctors do not really know who will make it.

The best advice I had when I was diagnosed with a low survival percentage, My sister told me just know if the survival percentage is low it means someone makes it and it might as well be you. Here I am 7 years later alive with chemo nueropathy in face, hands, feet but alive and living with joy. Happy to be here to share hope to all.
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

CAGirl
Posts: 53
Joined: Fri Aug 25, 2017 4:55 pm

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

Postby CAGirl » Tue Mar 20, 2018 3:34 pm

Thank you, NBrandt, and everyone else on this thread.

As of today's CT scan, I have qualified to comment on here, too!

1 year NED. Woo hoo! (It does count from resection date, right?)
Dx 2/2017, age 45, 2 kids: 6 yrs & 3 yrs
History of Crohn's disease - dx in 1997; in remission, thus no colonoscopy in over 10 years
Anemia dx 11/16: GI doc assured me "the likelihood of colon cancer" was "very low".
Stage 3C - T3N2b
8/64 lymph nodes; clear margins surgery 3/17
12 cycles of Folfox 4/17-9/17
3-month CT scan midway through chemo, no changes
2-3-month CT scan post chemo 11/17 slightly larger lung nodule (incr. from 7mm to 8 or 9mm)
follow-up CT scan 3/18 - NED!

lovelife789
Posts: 114
Joined: Thu Aug 24, 2017 5:28 am

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

Postby lovelife789 » Wed Mar 21, 2018 1:30 am

1 year NED. Woo hoo! (It does count from resection date, right?)


This is the question a lot of people have asked but answers seemed to vary...I have run a search and answers all shoot different ways.... :?: :?:
F/38 - Dx 8 Mar 17, CEA 80.5
Stage IV Sig. Colon, 6 Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Moderately differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - Clear PET SCAN - CEA 1.4
3/18 - Clear MRI - CEA 0.8
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
Aug - VATs done, colon met cfm


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