The Colon Club

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?

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.

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.

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

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.

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/

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.

radnyc wrote:
Try this link:

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

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.

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?

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 ❤

_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.

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.

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.

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!

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!).