For those who are NED--how much does your CEA typically vary from one measurement to the next?

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lpas
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For those who are NED--how much does your CEA typically vary from one measurement to the next?

Postby lpas » Wed Mar 30, 2016 1:16 pm

Mine is up instead of down this month for the first time and it's freaking me out a bit. Went from 1.3 to 1.8 in only a month. CA19-9 is also up from 14.8 to 19.3. I had some junk on my ovary that was removed yesterday, which I wasn't too worried about (mainly because I have a long history of endometriosis) until I saw the CEA jump.

So what's considered normal month to month variation?

EDIT: Just to clarify, the CEA/CA19-9 were drawn 6 days prior to the surgery, so there would be no impact from surgical inflammation.
Last edited by lpas on Wed Mar 30, 2016 3:27 pm, edited 2 times in total.
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo

radnyc
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Re: For those who are NED--how much does your CEA typically vary from one measurement to the next?

Postby radnyc » Wed Mar 30, 2016 1:29 pm

1.3 to 1.8 does not look like that unusual an increase, in any case you are way under the normal reading. My CEA was always on the high side, but remains constant within 1 to 2 points, is the trend over several readings that is important. The only other thing I notice is that your CEA was 1.0 pre-surgery which probably means it's not going to be the most precise way of checking for recurrence in your case. Your CA19-9 might be a better reading. CEA is affected by inflammation, the fact that you had a surgery very recently could affect it. I wouldn't worry about it much, and I'm sure your oncologist will be keeping track of the trend in the next couple of readings.
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

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juliej
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Re: For those who are NED--how much does your CEA typically vary from one measurement to the next?

Postby juliej » Wed Mar 30, 2016 3:00 pm

Agree with Radnyc - it's the overall trend that matters. Some people have bigger deviations and it means nothing. Awhile back, mom_2_3 (Amy) nicely posted all of her CEA results from the past 5 1/2 years. You can see there's a pretty big variation. Try to remember your number is still normal and lots of reasons could cause the increase (such as inflammation from your recent surgery). Keep us posted.

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=47406&p=351892#p351892
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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muskokamike
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Re: For those who are NED--how much does your CEA typically vary from one measurement to the next?

Postby muskokamike » Wed Mar 30, 2016 3:37 pm

AS you can see by my signature I had low level at dx. I went from 1.4 to 2.9 in 15 months with three elevations in a row. My onc was not concerned but bumped up my scan by three months just to be sure and everything was good. CEA causes so much anxiety on this board you only need to do a search to see the grief it causes. I was told in the beginning that it would not be a good marker for me but so long as it stays in the normal range which is 0-4 I won't worry.
53M Dx rc10/31/13
WTF!
CT scan, BONE scan
MRI/T3N0M0 1 suspicious node
5 wks chemo/rad
LAR open TME 2/26/14
temp ileo
0/24 nodes pCR/pathological
Mop up Folfox (8) Mar/28-Jul/4
Aug/14 clear CT scan
8/27/14 reversal
Feb/15 clear scope
July/15 clear CT scan
Feb/16 clear CT scan
Feb/17 clear CT scan
Feb/18 clear scope
Feb/18 clear CT scan
Sep/19 clear CT scan DISCHARGED!
CEA levels 1.6 dx
1.6,1.4,1.7,2.4,2.9, 2.7 2.3 2.5 2.2 2.1 2.5 2.6 2.7
2.7 Sept 19
0-4 normal
https://kicknasscancersass.blogspot.com/

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Shân
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Location: Old Greenwich CT

Re: For those who are NED--how much does your CEA typically vary from one measurement to the next?

Postby Shân » Wed Mar 30, 2016 4:25 pm

I just got NED results on Pet and CT scans this week but CEA rose from 4.3 to 6.1 in 2 weeks. I've had severe chest pains caused by neulasta so am hoping my increased CEa is a result of inflammation not something more sinister, but difficult not to worry about it!
Dx 3/14. Stage 111b. Aged 51 Mother of 4
3/14 Sigmoidectomy (6 positve lymph nodes out of 15)
12 rounds of oxaliplaton, 5 F-U and leucovorin
9/14 PEP scan tumor in superaclavicular lymph node
Stage IV
10/14 Radiation,
1/15 PEP activity in the lymph nodes in abdomen.
12 rounds irinotecan and avastin
4/15 NED
9/15 PEP activity in the lymph nodes in sternum
10/15 Radiation SBRT
1/16 PEP activity in another 2 superaclavicular lymph nodes
2/16 irinotecan and avastin
3/16 NED but CEA 6.1

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vilca11
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Location: Moscow, Russia; Baltimore, USA 1992; Vilcabamba, Ecuador 2012

Re: For those who are NED--how much does your CEA typically vary from one measurement to the next?

Postby vilca11 » Wed Mar 30, 2016 6:53 pm

I do not believe in "normal" CEA when it comes to people who never had it over 5. So, I would not tell you that it is in a "normal" range. Mine always is "normal", while I am a smoker, but it always shows me even with the decimals increases, when my mets "wake up"... Yes, the trend is crucial, and how much your personal CEA is reactive. I do think it is not very reactive, so I would not worry about that one. But your CA19-9, if it really is reactive for you according to the past readings, deserves a close watch instead. Again, all in the trend, which does not help to calm the fears during that terrible word "wait"... But you know that as well as I do, hon...
I kinda trust PET more than CT, while both are not too good when it comes to small "beginnings". Anyway, we both with you are stuck now into "wait" mode, so just try to meditate, it truly helps, the one I posted is great...
Hugs and love your way... Vilca
11/2005 CC stage 1, F,50yo@dx
Mod dif adenocar, MSS, APC, TP53, CEAs1.6-4.8
1/12 1met liver@Vena Cava, RFA, 3oxi,11 5FU
8/13 2 mets same place,SBRT
4/14 2 Xeliri+Avastin
5/14 Nano Knife liver same 2 mets
6/14 2 Xeliri, ADAPT
4/15 PET, 2 same mets,Cryo Liver
5/15 MJ Oil, Herbs, Suppl, ADAPT
10/15 PET, same area, doubled in size, high SUV
10/15 RH, HAI, visceral involv., no LN
2/16 red FF, 50% red dose FUDR, CEA trends up
3/16 CT, PET, MRI L.Lobe all in small tumors
4/16 No acceptable options, going home

Ron50
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Re: For those who are NED--how much does your CEA typically vary from one measurement to the next?

Postby Ron50 » Wed Mar 30, 2016 8:26 pm

At dx with stage 3c into six nodes I was only 2.8. Now after 18 yrs it rarely gets beyond0.5. 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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CRguy
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Re: For those who are NED--how much does your CEA typically vary from one measurement to the next?

Postby CRguy » Wed Mar 30, 2016 9:18 pm

Sorry I can't be more help here … BUTT
CEA is not my marker
even with a bleeding rectal CRC tumour hanging out in my butt :oops:
my CEA has never been out of the "normal" range

I use quotes for the "normal" part because for me there is none … :twisted:

Having said that, I do agree with folks who prefer to monitor "trends"
i.e. if my CEA is 1.2 and the next one is 3.6 = YES ALL within NORMAL ranges I know …
BUTT still a threefold increase "in my individual case" which some see as a proportional increase
I don't know that interpretation has been scientifically validated or not … BUTT maybe just another way of looking at things ?????

Most Oncs will not really get freaked about increases inside the "normal" range.

Standard of care would suggest that if things kick UP = retest in about 28 days, and kickup the surveillance scans etc.

LAST COMMENT :
( I hear a collective SIGH of relief :shock: :shock: :shock: )

As a vet and patient with COMBINED life experience of > 45 years here !……

A lab value is JUST a lab value
it may be a lab error = THEY OCCUR !!!! :twisted:
it may be an anomaly = means NADA
it may warrant further follow up

BUT….. BUTT must always be taken BACK to the patient and evaluated by a knowledgeable professional with consideration for THAT patient's individual situation !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

WORD !

end mini-rant :oops:

Cheers and Harmony to ALL on the Journey
CRguy

BTDT
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

lpas
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Joined: Wed Nov 19, 2014 11:11 pm

Re: For those who are NED--how much does your CEA typically vary from one measurement to the next?

Postby lpas » Thu Mar 31, 2016 10:38 pm

Thanks so much, everyone--I really appreciate the input.
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo

Lydia666
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Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: For those who are NED--how much does your CEA typically vary from one measurement to the next?

Postby Lydia666 » Fri Apr 01, 2016 5:01 am

lpas wrote:Thanks so much, everyone--I really appreciate the input.

How was your ovary surgery? I am thinking of taking mine out.
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

mariane
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Re: For those who are NED--how much does your CEA typically vary from one measurement to the next?

Postby mariane » Fri Apr 01, 2016 8:37 am

Hi Lpas,
I hope everything went well with your surgery. Fingers crossed for pathology! I think it was smart to take care of the cyst. As you know I had similar surgery in January. The funny thing is I got my period in March :) I am not done with endometriosis yet.
mom of now 11 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

Ajane
Posts: 427
Joined: Tue Jul 23, 2013 3:03 am

Re: For those who are NED--how much does your CEA typically vary from one measurement to the next?

Postby Ajane » Fri Apr 01, 2016 3:57 pm

LPAS, CEA has proven to be a good indicator for me. At diagnosis, in July of 2013, mine was 5.7. In January of 2014, a month after TEM surgery, it was 2.9. Fast forward fourteen months to March of 2015, it climbed to 4 and then 4.6 the next month leading up to my lung recurrence in May of last year. One month after the lobectomy, understandably, it was 16. It was in the 4's going through Folfox with Avastin. Since starting maintenance (Avastin+5FU push) last November, it was trending downward...4.7, 4.1, 3.7, 3, 3.1, 2.8, 3, but then I caught that nasty stomach bug that took me a week and antibiotics to recover from (thankfully, it started 4 days after my infusion day). My CEA the following week soared to 4.8. Knowing it was likely associated with the bug, I was still a bit concerned...having been down that road before. Ugh. Fortunately, my last two readings have been back under three...2.7 and 2.9.
My Onc considers me NED after my last scan, but I've been hesitant to say so. I'll be scanning again on the 11th and get the results the next day. If nothing is seen, we've planned for that to be my twelfth and final maintenance appointment.
Hoping to hear that your news is good on your path.
7/13, T2, G3, Ultra-low. CEA 5.7 KRAS Wild, MSS
8-9/13 6 wks Xeloda/radiation
12/13 TEM pCR NED
5/15 CEA 4.6 PET 1.5 cm met, UL Lobectomy
6-10/15: Rounds 1-2 Xelox+Avastin; 3-8 Folfox+Avastin
10/15-4/16: 12 rounds Avastin
9/2016 CEA 4.2, 12 mm AP node
11/2016 CEA 4.3. PET/CT. 16mm AP nodal met removed
4 wks chemorad
2/2017 NED CEA 2.4
Carafate to tx esophageal ulcers caused by rad
Avastin maintenance postponed

2 Corinthians 12:9

Deb m
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Joined: Tue Jan 14, 2014 10:08 am

Re: For those who are NED--how much does your CEA typically vary from one measurement to the next?

Postby Deb m » Fri Apr 01, 2016 6:04 pm

My husbands has been between 2.4 as a low and has gone as high as 5.7 at times while remaining ned. I know it's nerve racking to say the least!

Your probably fine, try to relax somehow.

deb

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Jacques
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Location: Occitanie

Re: For those who are NED--how much does your CEA typically vary from one measurement to the next?

Postby Jacques » Sat Apr 02, 2016 5:36 am

lpas wrote:...FYI, my CEA shot up from 1 to 3 during FOLFOX and I8 months later I'm still not back to my level at diagnosis. I'm betting this is inflammation from the chemo. Good luck!

lpas - I was wondering if you are tracking systemic inflammation with biomarkers such as C-Reactive Protein or ESR? If so, how long have you been tracking your CRP, and how does your history of CRP measurements compare with your variations in CEA? Thanks.

lpas
Posts: 1010
Joined: Wed Nov 19, 2014 11:11 pm

Re: For those who are NED--how much does your CEA typically vary from one measurement to the next?

Postby lpas » Sat Apr 02, 2016 9:41 am

Lydia666 wrote:
lpas wrote:Thanks so much, everyone--I really appreciate the input.

How was your ovary surgery? I am thinking of taking mine out.


It's actually been pretty easy. I hate how they blow you up with CO2 gas for the laparoscopy but it's better than open surgery by a long shot. The hot flashes are probably the worst part but I think I can live with that for a little more peace of mind.
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo


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