CEA Levels

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Rikimaroo
Posts: 199
Joined: Tue Dec 20, 2016 8:48 pm

CEA Levels

Postby Rikimaroo » Wed Dec 12, 2018 5:02 pm

Hello All,

Things have been improving after ileostomy reversal, going much less, still hate the unpredictability when I have to go, but it's been better.

Just had my NM PET/CT SKULL-THIGH and MRI done. All came back clear and good. So still NED. My CEA was 1.2 when I did the test in September, This time it is 3.2 and even though all came back fine, with PET/MRI I am feeling a bit nervous and concerned. My oncologist after I emailed him and asked what it was, he released it, and that usually means there not concerned.

Anyone else seen this fluctuation. I am taking Metamucil daily and probiotics and immodium, no sure if that would cause any of this. From Scanxiety to CEA Anxiety, ugh... :(
RC T3N1M0
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

User avatar
betsydoglover
Posts: 967
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: CEA Levels

Postby betsydoglover » Wed Dec 12, 2018 5:40 pm

I understand your concern, but my oncologist told me that when CEA is within normal range, they are taught to not be concerned at all, even if it has gone up. So, things are most likely fine, and as you say if your onc was concerned, he wouldn't have just mailed you the results.

Take care,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

Beckster
Posts: 359
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: CEA Levels

Postby Beckster » Wed Dec 12, 2018 5:58 pm

I just received my bloodwork today...it has been 1/ 1/2 years from chemo and finally is came down to prechemo level-2.5 using the Roche assay. One thing that I noticed is that the drops over the past year seemed to correspond to my fasting glucose level. I am prediabetic but the chemo seemed to make it go array. I am struggling with getting it in normal range, which it was before starting chemo. When I was first diagnosed,my CEA was 1.9 and the day of my first chemo, it was 2.5. I am continuing to work on my blood sugar and hope that it continues to drop with diet and exercise.

Bloodwork
Fasting 116- 3.0
Fasting 111- 2.8
Fasting 109-2.5

I do remember reading that CEA levels are affected by fasting glucose levels. Maybe this might explain why some people flucuate. When I see my onc on Monday, I am going to ask him.
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size:3.5 cm x 2.5 x 0.7 cm
Grade: G3 (path) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion
1/2/17 to 6/9/17- Xeloda monotherapy
6/17, 12/17, 6/18, 12/18 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.53/19 3.16/19 3.1
Clear Colonoscopy 10/17 :D

NHMike
Posts: 1964
Joined: Fri Jul 21, 2017 3:43 am

Re: CEA Levels

Postby NHMike » Wed Dec 12, 2018 6:44 pm

My CEA went up because I was walking a lot (100 miles/week). Oncologist was concerned and ordered a scan but nothing. It came back down when I decreased the walking. There are some other known things that increase it too.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Rikimaroo
Posts: 199
Joined: Tue Dec 20, 2016 8:48 pm

Re: CEA Levels

Postby Rikimaroo » Wed Dec 12, 2018 7:00 pm

Wow Mike, I bet the 3.2 and 4.5 made gave you a bit of anxiety. It is so nerve racking doing these surveillance things. The PET/CT and MRI process and waiting for the results is so stressful. I might be going through the same fluctuations. I have been more active lately but not actually working out, but more busy moving around etc....I don't think Metamucil, Imodium or probiotics would cause any changes, would it? My oncologist said its not specific on what would affect changes, but he said we will keep on eye on it. He didn't seem to concern but he said he will go over it more with me when I see him on the 19th. He was very happy with my MRI/Pet results.
RC T3N1M0
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

Koreysue
Posts: 94
Joined: Mon Apr 30, 2018 2:36 pm

Re: CEA Levels

Postby Koreysue » Thu Dec 13, 2018 12:00 pm

CEA checks make me incredibly nervous. My number is up, but has stayed basically the same for 4 months. My CT and PET in august 2018 were clear. My onc says that great that there was no big change in 4 months.
My dr. doesnt offer much about the cause of elevation. I’ve looked up a lot of stuff about it, and it does seem that there are reasons it can be elevated that are not cancer related. Stomach ulcers, gastritis, tooth decay, thyroid issues, etc.
I know it’s hard not to worry.
Korey
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 clear (cea rise a mystery for now, doc said maybe all the smoke in my town from forest fires)
CEA 11/2018: 3.8
CEA 2/2019: 3.2

Rikimaroo
Posts: 199
Joined: Tue Dec 20, 2016 8:48 pm

Re: CEA Levels

Postby Rikimaroo » Wed Dec 19, 2018 2:59 pm

So I met with my Doctor today and we discussed the CEA and he wasn't very concerned about it, but he said we will keep an eye on it. Then I told him would my surgery have affected it for Ileostomy reversal in October. He said, OH, I forgot about that and proceeded to say, that most likely is the reason why is went up. Any surgery done in the GI area will cause CEA to go up. So he said let's see what it comes back when I do it again in 3 months. Just wanted to let you guys know.
RC T3N1M0
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

stu
Posts: 1084
Joined: Sat Aug 17, 2013 5:46 pm

Re: CEA Levels

Postby stu » Wed Dec 19, 2018 3:42 pm

Great .Pleased for you .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Rikimaroo
Posts: 199
Joined: Tue Dec 20, 2016 8:48 pm

Re: CEA Levels

Postby Rikimaroo » Mon Feb 11, 2019 1:32 pm

Just got CEA results and it came back at 11.4 and of course I am stressed. I really hate this, gives me so much anxiety.

Scans were already prescheded for March 6 and 8 pet and mri. Waiting for a call from oncologist see if he wants to move them up. It could be a false positive but I don’t know.
RC T3N1M0
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

stu
Posts: 1084
Joined: Sat Aug 17, 2013 5:46 pm

Re: CEA Levels

Postby stu » Mon Feb 11, 2019 2:10 pm

My mum’s has popped up too ! Such a pain but she scanned well just six weeks before so not going to react just yet plus they have plateaued with a .3 drop which I guess is not much but we will take it none the less .
I am thinking it’s a gastric issue or inflammatory.
If not we are on to it before it’s got a chance .

It’s nothing short of anxiety inducing .
The hospital is horizontal about it and I guess they have the overview we don’t . I read some research on false positives causing spikes and it can take a few tests to drop down . It also seems pretty common . I guess that’s why it has limited value .
Hope it drops soon .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Rikimaroo
Posts: 199
Joined: Tue Dec 20, 2016 8:48 pm

Re: CEA Levels

Postby Rikimaroo » Mon Feb 11, 2019 5:54 pm

Thanks for the post Stu. I am hoping its nothing and just false positive or something else. I read this article and it seems its a big thing with colorectal cancer patients. I spoke to my onc on the phone and we were talking how everything was perfectly clear with PET and MRI in December. But he said if its a liver spot, they can ablate if something shows up, so he is staying positive.

http://www.ascopost.com/issues/august-1 ... al-cancer/

I will keep you guys posted.

Rikimaroo
RC T3N1M0
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

stu
Posts: 1084
Joined: Sat Aug 17, 2013 5:46 pm

Re: CEA Levels

Postby stu » Tue Feb 12, 2019 1:43 pm

Thanks for that . From what I am reading it’s about 50% false positives .
My mum’s CEA is so strange as it sits higher anyway and only pops up a little when there’s a met . In all 25 scans she has never had a trending upwards CEA without it showing up on her images . Your images sound good too .

Your oncologist is so right . My mum’s lung met was monitored from 2 mm, at 7 mm it was whipped out and on with life . However the psychological effects of all the testing take a bit more digesting . It truly is a chronic condition that is well managed .

Holding on to the clear images . Glad you had good scans recently too . That’s very reassuring.
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Rikimaroo
Posts: 199
Joined: Tue Dec 20, 2016 8:48 pm

Re: CEA Levels

Postby Rikimaroo » Tue Feb 12, 2019 4:00 pm

It is so hard to stay positive through all of this. So many things run through my mind.
RC T3N1M0
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

stu
Posts: 1084
Joined: Sat Aug 17, 2013 5:46 pm

Re: CEA Levels

Postby stu » Wed Feb 20, 2019 7:56 am

Hi ,
How are you holding up ?
My mum is getting scanned in two weeks . I thought they would just run another CEA test , Bit of a surprise there .
She has an excellent Oncologist and I think she knows we are all over everything like a rash !!!
Can’t complain about the care but scans are rubbish !
Take care,

Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

User avatar
LPL
Posts: 625
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: CEA Levels

Postby LPL » Wed Feb 20, 2019 8:14 am

Rikimaroo and Stu,
Good Luck with the upcoming scans!
Waiting for results is :( :( :(
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb lung met


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