Feeling “NED”

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Basil
Posts: 213
Joined: Thu Mar 16, 2017 12:33 pm

Feeling “NED”

Postby Basil » Wed Dec 06, 2017 8:39 pm

This is a very mundane post but I figure it may resonate with someone here, either now or in the future.

I was diagnosed stage iii with one suspicious node in March. Had a great reaction to preadjuvant chemo (trial with no chemorad) and my pathology report showed a complete response after LAR/TME. Great news. Since then I’ve had my latter six rounds of FOLFOX cancelled (IDEA study) and gone through reversal. Recovered and doing well.

I know the stats on recurrence and I’ve talked with my onc in depth. The stats are very good for me. Still, I’d never really felt like I thought I should be being “NED.” I felt more like the odds are in my favor but the balls are still in the air. And I know I’m some sense that’s really where I am.

I had my first surveillance appointment this week, nothing more than blood work and a cursory exam. Everything was as it should be. My CEA is 1.5. I wasn’t expecting this but I feel like a weight has been lifted from my shoulders. I guess some part of me felt everything would go to shit ASAP once I got the surgery/reversal issues worked out. It didn’t and I really feel for the first time I’m cancer free. I know it could come back and, if it does, it will probably happen in the next year or two. But my head is now for the first time telling me that’s unlikely and I’m probably on the down slope of this thing. Thought I would have had that feeling when I got the call telling me there was no cancer in the specimen they removed in surgery. I didn’t but it’s happened now. It’s a great feeling and one I hope you all get to have.

Fingers crossed/no jinx
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer S3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED

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CRguy
Posts: 9323
Joined: Sun Feb 10, 2008 6:00 pm

Re: Feeling “NED”

Postby CRguy » Wed Dec 06, 2017 10:02 pm

Keep pulling the NED tickets homie !!!!

Cheers and Harmony
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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LeonW
Posts: 318
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: Feeling “NED”

Postby LeonW » Thu Dec 07, 2017 5:29 am

Wow, Basil, congrats on the results so far.
And pathology concluding that you have Complete Response is exceptional - very promising. With pCR you're in a very different branch of the probability tree that overall survival statistics are based on.
Leon
Dec 2012 - Dx CC; MM 65yrs, 2 unresect liver mets, CEA 41.8
Jan 2013 - colectomy @ spleen (IVa T3N1bM1a) 2/26 nodes, MSI-low
Feb-Aug - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Sept - 2x failed Portal Vein embolization
Oct 2013 - R liver resect 28 hosp days (liver failure, bad delirium, emboli, encephalopathy) pCR; cancer gone
2014/15 - recovery; benign polyp
Apr 2016 - new house/town/life
clean CTs and 1.3/1.4 CEAs: 4x2014, 4x2015/16, 2x2017
next: June 2018 w scopy - 5yr getting close

NHMike
Posts: 691
Joined: Fri Jul 21, 2017 3:43 am

Re: Feeling “NED”

Postby NHMike » Thu Dec 07, 2017 6:27 am

Basil wrote:This is a very mundane post but I figure it may resonate with someone here, either now or in the future.

I was diagnosed stage iii with one suspicious node in March. Had a great reaction to preadjuvant chemo (trial with no chemorad) and my pathology report showed a complete response after LAR/TME. Great news. Since then I’ve had my latter six rounds of FOLFOX cancelled (IDEA study) and gone through reversal. Recovered and doing well.

I know the stats on recurrence and I’ve talked with my onc in depth. The stats are very good for me. Still, I’d never really felt like I thought I should be being “NED.” I felt more like the odds are in my favor but the balls are still in the air. And I know I’m some sense that’s really where I am.

I had my first surveillance appointment this week, nothing more than blood work and a cursory exam. Everything was as it should be. My CEA is 1.5. I wasn’t expecting this but I feel like a weight has been lifted from my shoulders. I guess some part of me felt everything would go to shit ASAP once I got the surgery/reversal issues worked out. It didn’t and I really feel for the first time I’m cancer free. I know it could come back and, if it does, it will probably happen in the next year or two. But my head is now for the first time telling me that’s unlikely and I’m probably on the down slope of this thing. Thought I would have had that feeling when I got the call telling me there was no cancer in the specimen they removed in surgery. I didn’t but it’s happened now. It’s a great feeling and one I hope you all get to have.

Fingers crossed/no jinx


Glad to see you back. I recall your frequent posts about your reversal knowing that this would affect me down the road (it's still down the road). I had a complete response from surgery as well but I still worry about recurrence. So I keep an eye on the clinical trials out there for my mutation in case it comes back. I have to do some testing to see if I'd be likely to respond to immunotherapy in the future. Yes, paranoid, I know that. It runs in my family. I can see some big improvements in treatments down the road for CRC and it's an exciting time for discovery. Of course everyone would prefer that it be a boring time with treatments that didn't damage body parts but that's where we are hopefully headed too.

Please continue to post.

My CEA range was 2.7 at diagnosis, 1.8 halfway through chemo/radiation, 1.7 at the end of chemo/radiation and 0.6 after surgery. From what I've seen of numbers, it seems that the normal range varies moderately from person to person. I would really love to get to where you are now and it seems like a long way to get there. But it looked even longer six months ago.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

Maelleous
Posts: 108
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Feeling “NED”

Postby Maelleous » Thu Dec 07, 2017 7:24 am

I can completely relate with that feeling. I have a colonoscopy this Monday, not too worried like I was on previous exams, but feeling optimistic and after that one I won't have another check until March. I was also stage 3. I will admit a little nervousness coming, but for a good while there I wasn't thinking long term in life at all. Now I am actively planning to live a long life!

I am glad you are feeling the NED and good luck to you!
M 35 yr
DX Rectal Cancer, 10/16 (symptoms Feb 2016)
Dx stage 2 - Surgery Oct 25 201 Loop ileo w/ j-pouch
Close margins within 1mm
9/38 lymph nodes involved on path / Stg IIIc,pT4, pN2 B, p.M0. MSS, K‐ras, NRAS, no mutation
Started Folfox - 3rd Treament, Dec 30th 2016 Cardiac Arrest - Lucky to be part of the 6% to survive!
S-ICD installed / Port Removed
Vaccine Clinical trial at UPMC - last shot June 2017
Reversal 8/1/17 - Praying this is it!

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susie0915
Posts: 551
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Feeling “NED”

Postby susie0915 » Thu Dec 07, 2017 9:43 am

My response was also very positive at surgery. Although there were minimal residual cancer cells in pathology report. After chemo/rad sigmoid showed only scar tissue and pet scan showed no sign of cancer especially in rectal area. My colonoscopy after adjuvant therapy was clear, ct scans have been clean and my CEA has never gone higher than 1. Usually hangs around <.5 I have also graduated to 6 month visits with both my surgeon and oncologist. I do have a scan coming up in January to check the scarring and inflammation in my lungs, one of the gifts from chemotherapy coupled with the possibility of an auto immune disorder. It takes time after finishing treatment to feel comfortable with NED status. During treatment you are actively fighting the disease and when you're done you feel a little helpless with the uncertainty of what may be going on inside your body. As time goes on, and tests continue to show no sign of cancer it does get easier to accept that you are going to be okay and focus on other things in your life that don't involve your diagnosis. I'm getting there, although as each blood test and scan comes up there is always that bit of anxiety that sets in until the results are good once again. And of course, the side effects of treatment are always a reminder of what you have gone through. I'm glad you are doing well mentally and physically. Have a great holiday.
Last edited by susie0915 on Fri Dec 08, 2017 9:54 am, edited 1 time in total.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,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 thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

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HopeForJesse
Posts: 228
Joined: Wed Feb 24, 2016 9:39 am
Location: Philadelphia

Re: Feeling “NED”

Postby HopeForJesse » Thu Dec 07, 2017 9:20 pm

Congrats and thanks for taking the time to share!
DH DX 01/16 49 YO inop RC stage IV liver mets
MSS, mod dif adenocarcinoma, high grade dysplasia, TP53 APC,BRCA2
12/15 CEA 241, 4/16 CEA 22.3 >6 FOLFOX 11/16 1.8, 3/17 132,9/17 4.2
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections/ablations 7/16
FUDR 8/16 FOLFOX resume 8/16 reaction -- 12/16 3 months no chemo
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

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horizon
Posts: 1434
Joined: Tue Apr 12, 2011 10:10 pm

Re: Feeling “NED”

Postby horizon » Thu Dec 07, 2017 10:07 pm

That's awesome that you're feeling that. I'm a pessimist and it took me a lot longer to reach that point. So happy for you!
I'm just a dude who still can't believe he had a resection and went through chemo (currently 6 years NED). Is this real life?

hawkowl
Posts: 64
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: Feeling “NED”

Postby hawkowl » Thu Dec 07, 2017 10:09 pm

It has been more than two years since I completed therapy. Over time I have learned to live with the fear and uncertainty. I realize that the uncertainty will always be a part of my life, but that it doesn't need to be an impediment to finding joy and being at peace. I worked with a STAR certified therapist at my cancer center and she has helped me tremendously. And as others have said, the actual CEA value itself is not all that meaningful.
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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O Stoma Mia
Posts: 924
Joined: Sat Jun 22, 2013 6:29 am

Re: Feeling “NED”

Postby O Stoma Mia » Sat Dec 09, 2017 1:08 am

Basil wrote:...I felt more like the odds are in my favor but the balls are still in the air. And I know I’m some sense that’s really where I am...

Yes, I think the balls are probably still in the air, and they'll probably reach their highest point around the time of the 4th or 5th quarterly review - - i.e., about a year or so from now...
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susie0915
Posts: 551
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Feeling “NED”

Postby susie0915 » Sat Dec 09, 2017 9:51 am

O Stoma Mia wrote:
Basil wrote:...I felt more like the odds are in my favor but the balls are still in the air. And I know I’m some sense that’s really where I am...

Yes, I think the balls are probably still in the air, and they'll probably reach their highest point around the time of the 4th or 5th quarterly review - - i.e., about a year or so from now...
.
Image

Yes, my oncologist told me most recurrences do occur within two years of diagnosis. I always thought it was two years after finishing treatment, but she said it was two years after diagnosis. I am 2 1/2 years from diagnosis still have a little worry, but it is getting better. Takes time I guess.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,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 thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5


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