Baseline CEA levels

Please feel free to read, share your thoughts, your stories and connect with others!
AlexandraZ
Posts: 171
Joined: Fri Aug 23, 2019 8:25 am

Baseline CEA levels

Postby AlexandraZ » Sun Nov 17, 2019 1:43 pm

Just curious about what everyone's CEA was when they were diagnosed. I've been searching old threads and some of you have it in your signature, but not all of you.
Anyone else with a super high CEA? Can't seem to find anyone else who had a CEA of above even 10,000. My boyfriend's was 70,480 at diagnosis, and he didn't get chemo till a month later due to biopsy-related delays. After 12 rounds of FOLFIRI + Vectibix it fell to 210. Now after 2 1/2 months off chemo, it's at 1100 again. His mets grew about 5mm off chemo but it seems like his CEA is just in a way higher range than anyone else I find!

I know the trend is most important, as long as it's falling it's good. But is there anyone else out there whose CEA was anywhere near what his was?
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

Rock_Robster
Posts: 497
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Baseline CEA levels

Postby Rock_Robster » Sun Nov 17, 2019 8:17 pm

Hey Alexandra,

Just a random thought, but I’m wondering given you’re seeing much higher numbers than many, are the units of measure and test method the same in Denmark as in the US? I believe here in Australia they quote it in nanograms per mL (ng/mL).

In terms of the results themselves, there was some research a while ago which suggested a CEA >200 at diagnosis had prognostic value (this was incorporated into Fong’s Clinical Risk Score), but I haven’t seen any stratification beyond that level. Just anecdotally from my observation it seems that response to treatment is probably more important that the initial number.

Cheers
Rob

PS: I owe you an inbox reply too! Sorry will send shortly.
Male 38; Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9.
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic VMAT radiation; complete metabolic response
07/19 ULAR (robot), temp ileo, 1/27 LN
08/19 Missed a liver spot
08-11/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection #2
02/20 Ileostomy reversed
03/20 PET & MRI = NED!

AlexandraZ
Posts: 171
Joined: Fri Aug 23, 2019 8:25 am

Re: Baseline CEA levels

Postby AlexandraZ » Mon Nov 18, 2019 7:45 am

Rock_Robster wrote:Hey Alexandra,

Just a random thought, but I’m wondering given you’re seeing much higher numbers than many, are the units of measure and test method the same in Denmark as in the US? I believe here in Australia they quote it in nanograms per mL (ng/mL).

In terms of the results themselves, there was some research a while ago which suggested a CEA >200 at diagnosis had prognostic value (this was incorporated into Fong’s Clinical Risk Score), but I haven’t seen any stratification beyond that level. Just anecdotally from my observation it seems that response to treatment is probably more important that the initial number.


Thanks Rob! Good to hear from you, I hope your treatment is all working out the way it's supposed to! :) Yeah I thought about that possibility too, but it seems to be the same scale and test method. We haven't met any doctor or nurse who has ever heard of such a high CEA. My own theory is that since Jesper is young and strong, both his healthy cells and bad cells grow fast and heal quickly. So I suppose his cancer is stronger but he can also handle more aggressive treatment.

Just curious about other people's results! It's so strange to me when people are freaking out about their CEA rising but still being under 5. But of course it makes sense, you compare your test results to your own previous test results. I would be thrilled if Jesper's CEA came down into the double digits, whereas that seems to be a lot of people's worst nightmare. :mrgreen:
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

radnyc
Posts: 432
Joined: Tue Apr 06, 2010 6:32 pm

Re: Baseline CEA levels

Postby radnyc » Mon Nov 18, 2019 7:59 am

Your husband’s case is unusual. I found this case of someone with an extremely high CEA over 1500, who became disease-free and still had a CEA in the 300’s. Maybe he fits this pattern.

https://watermark.silverchair.com/hyl11 ... 8jKdvc7O-r
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

AlexandraZ
Posts: 171
Joined: Fri Aug 23, 2019 8:25 am

Re: Baseline CEA levels

Postby AlexandraZ » Mon Nov 18, 2019 9:22 am

radnyc wrote:Your husband’s case is unusual. I found this case of someone with an extremely high CEA over 1500, who became disease-free and still had a CEA in the 300’s. Maybe he fits this pattern.

https://watermark.silverchair.com/hyl11 ... 8jKdvc7O-r


Thanks! I couldn't open the link, but that sounds interesting. Yeah it's definitely not the norm. I recall seeing a CEA of 29,000 or so on someone's signature on here, but I've never seen anything higher than that. Hope FOLFOX does the trick and knocks his CEA down.
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

radnyc
Posts: 432
Joined: Tue Apr 06, 2010 6:32 pm

Re: Baseline CEA levels

Postby radnyc » Mon Nov 18, 2019 12:07 pm

AlexandraZ wrote:
radnyc wrote:Your husband’s case is unusual. I found this case of someone with an extremely high CEA over 1500, who became disease-free and still had a CEA in the 300’s. Maybe he fits this pattern.

https://watermark.silverchair.com/hyl11 ... 8jKdvc7O-r


Thanks! I couldn't open the link, but that sounds interesting. Yeah it's definitely not the norm. I recall seeing a CEA of 29,000 or so on someone's signature on here, but I've never seen anything higher than that. Hope FOLFOX does the trick and knocks his CEA down.



Try this link:

https://www.ncbi.nlm.nih.gov/m/pubmed/17060406/
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

zx10guy
Posts: 228
Joined: Mon Jan 07, 2013 12:54 pm

Re: Baseline CEA levels

Postby zx10guy » Mon Nov 18, 2019 2:53 pm

radnyc wrote:
AlexandraZ wrote:
radnyc wrote:Your husband’s case is unusual. I found this case of someone with an extremely high CEA over 1500, who became disease-free and still had a CEA in the 300’s. Maybe he fits this pattern.

https://watermark.silverchair.com/hyl11 ... 8jKdvc7O-r


Thanks! I couldn't open the link, but that sounds interesting. Yeah it's definitely not the norm. I recall seeing a CEA of 29,000 or so on someone's signature on here, but I've never seen anything higher than that. Hope FOLFOX does the trick and knocks his CEA down.



Try this link:

https://www.ncbi.nlm.nih.gov/m/pubmed/17060406/


That's the same article I referenced in my thread about my crazy CEA numbers.

To contribute to this thread, my CEA when first diagnosed was 13.9. It dropped to just above normal for 4 years (depending on if my blood work was done under the Siemans Bayer assay method or the Roche). It jumped to a high of 11 at the 4 year mark and a colonoscopy caught a cancerous polyp in my appendix which required a right hemicolectomy. CEA dropped back down to 5.4. My oncologist wasn't totally convinced the polyp was the cause of the CEA jump. The following year was the start of my crazy CEA journey which for about two years had numbers ranging from 11 to 20 with no evidence of cancer found on multiple CT scans. At the initial discovery of the jump, I went through CT, PET, MRI, small bowel capsule endoscopy, upper GI endoscopy, and colonoscopy exams which found nothing. Recently my CEA jumped to 52. Again I went through a CT, MRI, and PET with no evidence of cancer activity found.

AlexandraZ
Posts: 171
Joined: Fri Aug 23, 2019 8:25 am

Re: Baseline CEA levels

Postby AlexandraZ » Mon Nov 18, 2019 5:12 pm



Oh wow! That's really interesting. Jesper's scan showed slight progression, so his CEA trend is a good marker for him, but I'm happy to hear he's not the only one with a strangely high CEA! Thank you. Interesting that she was young too.
Last edited by AlexandraZ on Mon Nov 18, 2019 5:13 pm, edited 1 time in total.
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

AlexandraZ
Posts: 171
Joined: Fri Aug 23, 2019 8:25 am

Re: Baseline CEA levels

Postby AlexandraZ » Mon Nov 18, 2019 5:13 pm

zx10guy wrote:
That's the same article I referenced in my thread about my crazy CEA numbers.

To contribute to this thread, my CEA when first diagnosed was 13.9. It dropped to just above normal for 4 years (depending on if my blood work was done under the Siemans Bayer assay method or the Roche). It jumped to a high of 11 at the 4 year mark and a colonoscopy caught a cancerous polyp in my appendix which required a right hemicolectomy. CEA dropped back down to 5.4. My oncologist wasn't totally convinced the polyp was the cause of the CEA jump. The following year was the start of my crazy CEA journey which for about two years had numbers ranging from 11 to 20 with no evidence of cancer found on multiple CT scans. At the initial discovery of the jump, I went through CT, PET, MRI, small bowel capsule endoscopy, upper GI endoscopy, and colonoscopy exams which found nothing. Recently my CEA jumped to 52. Again I went through a CT, MRI, and PET with no evidence of cancer activity found.


Wow, that's very interesting. Is 52 the highest it's been?
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

_Jelen90
Posts: 23
Joined: Sat Jan 19, 2019 7:12 pm

Re: Baseline CEA levels

Postby _Jelen90 » Tue Nov 19, 2019 12:18 pm

I am not of any help here regarding the CEA levels but just wanted to send some positive thoughts your way. My husband was also diagnosed a 28.

I am hoping it gets better for your boyfriend. Hugs ❤
21/12/2018 DH 28 diag. Rectal cancer
T2N1M0 - Stage IIIA
6 weeks of Chemorad Jan-March 2019
APR surgery June 2019
Permanent colostomy
Path report : tumor completely gone but 1 lymph node out of 8 tested positive
6 rounds of Mop up XELOX August 2019
NED December 2019

AlexandraZ
Posts: 171
Joined: Fri Aug 23, 2019 8:25 am

Re: Baseline CEA levels

Postby AlexandraZ » Tue Nov 19, 2019 12:21 pm

_Jelen90 wrote:I am not of any help here regarding the CEA levels but just wanted to send some positive thoughts your way. My husband was also diagnosed a 28.

I am hoping it gets better for your boyfriend. Hugs ❤


Thanks so much! That's so nice of you. All the best wishes for your husband too. :D
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

zx10guy
Posts: 228
Joined: Mon Jan 07, 2013 12:54 pm

Re: Baseline CEA levels

Postby zx10guy » Tue Nov 19, 2019 11:33 pm

AlexandraZ wrote:
zx10guy wrote:
That's the same article I referenced in my thread about my crazy CEA numbers.

To contribute to this thread, my CEA when first diagnosed was 13.9. It dropped to just above normal for 4 years (depending on if my blood work was done under the Siemans Bayer assay method or the Roche). It jumped to a high of 11 at the 4 year mark and a colonoscopy caught a cancerous polyp in my appendix which required a right hemicolectomy. CEA dropped back down to 5.4. My oncologist wasn't totally convinced the polyp was the cause of the CEA jump. The following year was the start of my crazy CEA journey which for about two years had numbers ranging from 11 to 20 with no evidence of cancer found on multiple CT scans. At the initial discovery of the jump, I went through CT, PET, MRI, small bowel capsule endoscopy, upper GI endoscopy, and colonoscopy exams which found nothing. Recently my CEA jumped to 52. Again I went through a CT, MRI, and PET with no evidence of cancer activity found.


Wow, that's very interesting. Is 52 the highest it's been?


So far yes. Who knows what the next blood test will bring.

Zod
Posts: 30
Joined: Wed Aug 28, 2019 2:56 pm
Facebook Username: Zod

Re: Baseline CEA levels

Postby Zod » Wed Dec 04, 2019 6:44 pm

For what it's worth, in US for me at least units are ng/ml (two cancer centers, both in California).

By happenstance, I had CEA done twice in 2 days at different labs. One was 1.6 and the other was 3.4. Values evidently, at least for low values, can vary by a factor of 2 is appears.

AlexandraZ
Posts: 171
Joined: Fri Aug 23, 2019 8:25 am

Re: Baseline CEA levels

Postby AlexandraZ » Thu Dec 05, 2019 4:48 am

Zod wrote:For what it's worth, in US for me at least units are ng/ml (two cancer centers, both in California).

By happenstance, I had CEA done twice in 2 days at different labs. One was 1.6 and the other was 3.4. Values evidently, at least for low values, can vary by a factor of 2 is appears.


Oh thanks, yeah that's the same unit as they use here. I guess Jesper just has a crazy CEA!
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

Claudine
Posts: 355
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Baseline CEA levels

Postby Claudine » Mon Dec 09, 2019 4:57 pm

It seems to me that what matters, if CEA levels are good indicators for you, is the trend, not single values. But even so. I was so worried this morning when we went to the onc to hear about last Friday's control scan. My husband's levels, after bottoming out at 3.2 in July, have since slowly but regularly been rising (I don't have today's value but two weeks ago it was 6.9). Yet the scan isn't showing any progression/recurrence; the adrenal met is stable to slightly smaller compared to the September scan, the lungs are still fine, the vertebrae is stable. I'm not sure why the CEA numbers are rising, but I'll trust the scan that things are still moving in the right direction (for now!).
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 7.6
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 small uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Alex83, Google [Bot] and 34 guests