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

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susie0915
Posts: 656
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

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/ 2A
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/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 onc feels scar tissue
7/17 no change lung nodule
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule or scarring/inflammation

hawkowl
Posts: 66
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.

Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

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Shana
Posts: 186
Joined: Sun Jul 30, 2017 9:45 pm
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
Stage IV CC 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! CEA 1/17 - 33!
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 still on back burner. Have to be able to be OFF chemo one month prior and one month after surgery and evaluate benefit vs risk.

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GreenLakeGirl
Posts: 761
Joined: Mon Jan 18, 2010 5:55 am
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
Posts: 656
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

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/ 2A
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/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 onc feels scar tissue
7/17 no change lung nodule
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule or scarring/inflammation

Ron50
Posts: 633
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
Posts: 300
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

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 CEA 219
FOLFOX started 6/17
CEA 202 Not genetic
8/29/17 CT excellent melting of tumor. Ascites is gone.
12/8/17 Markedly decr ant peritoneal nodularity since 8/29/17 compat w/ marked posi respns to therapy
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
BRAF V600e


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