9yrs later..

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Grdngrl552
Posts: 2
Joined: Mon Sep 25, 2017 9:58 pm

9yrs later..

Postby Grdngrl552 » Mon Sep 25, 2017 11:31 pm

oh I came here today after a long time. I had a check up and it shows how far I have come because I didn't even know they ran a CEA as part of my blood work - I hadn't had one in a long time. But the feeling all came back when I got a call saying my tests were normal except one and I said which one was that. When the nurse said CEA I froze. I managed to voice 'what was it?' she said 3.2. I sighed in relief because to her in a regular doctors office that is a red flag, but for me it is finally proof my CEA has lowered from the 6 it stayed at for so long and didn't budge from. A move to lower in my world and experience is still celebration. So it led me back here. I see so many comrades from the past - (I don't even know my old username). But my heart is heavy with the sweet souls no longer here, and the beautiful unwavering well wishers and encouragers who have remained ..I gasp to see them and it warms my heart - I turned to them to light my way and help me navigate. I feel guilty I haven't stayed as they have, to hold the hands of the newcomers. I so looked to this group for every answer I could find. Knowledge is power. I traveled this path and there have been so many lessons.
Dx on 37 bday :evil:
Stage 3c RC 2008
5cm Tumor
4/33 ln
LAR
Folfox 12 tx/ rad 30tx w/xeloda
NED since

Basil
Posts: 243
Joined: Thu Mar 16, 2017 12:33 pm

Re: 9yrs later..

Postby Basil » Tue Sep 26, 2017 2:51 am

I ain't going to lie, there's a part of me who wants to stick around and help when I can. Others who have done so have been a wealth of information. But There's another part of me who wants to progress to the point I don't think about cancer much and drift away from online support groups, like friends who move to different cities (mine being NEDville). I realize that may be a bit selfish but cancer has been overwhelming, like it seems to be for most all of us, and I'm ready to kick it out and fill that void with family, friends and work.

Cheers to you. Congrats on the 3.2. More evidence that you are a permanent resident of NEDville.
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
1 year scans - clear

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Shana
Posts: 374
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: 9yrs later..

Postby Shana » Tue Sep 26, 2017 2:58 am

Thank you for coming back to share your positive news!

I get both sides of the coin, wanting to live a cancer worry free life and also to give back to those fighting on. This is unlike other social media because we all truly share a common experience.

Stay well, it's a gift and hope for all of us!
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
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh) 5/11/18 -78 :( 5/25/18-63!!!!
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!

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Robino1
Posts: 454
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: 9yrs later..

Postby Robino1 » Tue Sep 26, 2017 7:05 am

I would be thrilled at a CEA 6 :D

Congrats on the good news! Thank you for coming back and sharing the positivity. :)
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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susie0915
Posts: 775
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: 9yrs later..

Postby susie0915 » Tue Sep 26, 2017 8:23 am

Congrats. I understand how you feel Basil, but it is difficult to not think about cancer even 17 months from treatment and cancer free. The side effects from treatment and constant testing is always a reminder. It's getting better but does get in my head. I'm working on it.

I'm happy for your low cea. My lab has below 5 as normal.

Basil wrote:I ain't going to lie, there's a part of me who wants to stick around and help when I can. Others who have done so have been a wealth of information. But There's another part of me who wants to progress to the point I don't think about cancer much and drift away from online support groups, like friends who move to different cities (mine being NEDville). I realize that may be a bit selfish but cancer has been overwhelming, like it seems to be for most all of us, and I'm ready to kick it out and fill that void with family, friends and work.

Cheers to you. Congrats on the 3.2. More evidence that you are a permanent resident of NEDville.
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

DarknessEmbraced
Posts: 3016
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: 9yrs later..

Postby DarknessEmbraced » Tue Sep 26, 2017 9:00 am

Congratulations, that's wonderful news! :D
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17

lovelife789
Posts: 90
Joined: Thu Aug 24, 2017 5:28 am

Re: 9yrs later..

Postby lovelife789 » Wed Sep 27, 2017 5:19 am

AWESOME news!
I think we should have a thread dedicated to people who are in NEDville. So whenever we feel down, we can refer to that post and gain some strengths!
F/38 - Dx 8 Mar 17, CEA 80.5
Stage IV Sigmoid 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- 8/17 - 2-stage Liver Resection/Colon/Gall, all clear margin
8/25 - CEA 0.7
9/11 - Started Adjuvant chemo Xelox
9/15 - Intense reaction to Xeloda, it was dropped
9/22 - Folfox resumed, severe allergic reaction to Oxi
11/17 - Clear MRI
12/17 - completed a total of 13 rounds of FOLFOX
1/18 - Clear PET SCAN
3/18 - Clear MRI

teacher2017
Posts: 145
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: 9yrs later..

Postby teacher2017 » Wed Sep 27, 2017 7:47 am

Hope. Thank you for the hope. It's worth it's weight in gold.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18

Jachut
Posts: 1130
Joined: Mon Sep 26, 2011 11:16 pm
Facebook Username: hutchinson@aanet.com.au

Re: 9yrs later..

Postby Jachut » Thu Oct 12, 2017 5:01 am

Funny, I dropped it in today after literally years too. Congrats on your good results - I probably dropped in because I just had a scan and bloodwork after seven years. It was supposed to be my last one, I had the scan and headed off to Thailand for a holiday. One night I sat bolt upright in the middle of the night thinking "what if there's a letter from my surgeon waiting when I get home?". What do you know, there was. My blood ran cold, I can tell you. I have "infiltrates in the chest, probably the result of a healing chest infection". Trouble is, I havent had a chest infection, not even a cold. Still, I had a clear chest xray so I'm sure like your brief scare, it will turn out to be nothing after seven cancer free years. I just wish I didnt have to wait 6 weeks to see my surgeon.

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

Re: 9yrs later..

Postby dianetavegia » Thu Oct 12, 2017 8:43 pm

I'm just 10 weeks shy of 9 years from original dx and 4 months shy of 6 years NED after a 1.5 cm met was found and a liver resection April 2012. This is the first time in 9 years that I only had blood work and that was Tuesday. My CBC was perfect but the CEA and chems are sent out and will be posted online at 10:15 a.m. tomorrow morning at Labcorp. My CEA goes from 2.7 to 3.4 and has remained in that range except when I had pneumonia and it went to 4.4 . Still, I'm anxious (to some degree) and am praying like crazy that it's still normal. Labcorp has a high norm of 3.9 for a non smoker.

That's wonderful news about your CEA. Elevated CEA's can be from things like fibrocystic breast, polyps, obstruction, inflammation, infection, tummy issues, fatty liver, taking vitamins with large amounts of Biotin for hair and nails, age (increases with age even in those who've never had CRC) and lowers with morbid obesity.

INFILTRATES: my onc told me if you failed to fully expand your lungs during a 'take a deep breath and hold it nowwwwwwwwwwwww' that it can give the appearance of infiltrates, tho when I had a tiny area, I'd just gotten over a 7 week cough that my family and half my church had last March.

Glad and rejoicing with you on your awesome news!

Diane
Stage IIIB cc surgery 1/7/09. 5/17 nodes. 12 tx FOLFOX
Stage IVa 2/15/12. CEA 6.4 PET = 1.5cm liver met. HR 4/11/12 No chemo

Nine years 3 months since my original dx and Six years post liver resection.
NED April 2018!
“O Lord my God, I cried out to You, And You healed me.”
Psalms 30:2

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horizon
Posts: 1461
Joined: Tue Apr 12, 2011 10:10 pm

Re: 9yrs later..

Postby horizon » Fri Oct 13, 2017 7:10 am

lovelife789 wrote:I think we should have a thread dedicated to people who are in NEDville. So whenever we feel down, we can refer to that post and gain some strengths!


There is a thread for stage 3's.

viewtopic.php?f=1&t=10574
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?


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