The Colon Club

Claudine wrote: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!).

Yeah I find it all very confusing! His new CEA is 2700, which is over double compared to 2-3 weeks ago, before his 1st chemo (1300). He had an x-ray of his thorax on Friday because he's been coughing, but there was no new growth visible there. I've read that especially with oxaliplatin-based chemotherapy regimens, you can see a "CEA flare" as they call it, where the CEA first rises and then drops sharply. I hope that's the case. I think that's what happened when he was on FOLFIRI. The first few tests just came back as "over 40,000" (which is as high as the test goes), and then suddenly it dropped to 29,000 and just kept dropping after that.

I've seen some threads about mysterious CEA levels, but they are usually WELL below the range that Jesper's is in. I wonder if it's because he has so many small lung mets? The strange thing is, he's basically symptom-free. I thought the CEA was supposed to be some kind of indication of tumor burden on the body. It seems with such high CEA levels he should be feeling SOMETHING. But he's healthy-looking, muscular and only feels bad when he gets chemo. He has no pathologically enlarged lymph nodes and no new tumors have grown since his diagnosis in February, even on a 10-week chemo break. Does anyone understand or have any explanation for it?

I remember the oncologist telling us not to panic if CEA levels starting by going UP after chemo, instead of going down; he said it's not uncommon. Didn't happen for my husband, though. And, he also had a multitude of small lung nodules, yet his CEA was more what you'd expect (58). I guess Jesper is one of a kind! Good thing about him not having symptoms from the actual cancer though, chemo is bad enough as it is. Fingers crossed the treatment works!

AlexandraZ wrote: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?

Hi Alexandra, hope you guys are doing well over there. Just to let you know I heard today of an 88,000+ CEA, so Jesper no longer holds my personal record. Sorry, but I guess this is good news?!

Rob

Rock_Robster wrote:Hi Alexandra, hope you guys are doing well over there. Just to let you know I heard today of an 88,000+ CEA, so Jesper no longer holds my personal record. Sorry, but I guess this is good news?!

Rob

Oh wow Rob, thanks for thinking of us! That's the first time we've heard of someone who beats Jesper. Did you read about him/her online? Who was it?

Jesper's CEA finally started dropping after his 3rd infusion of FOLFOX... I was getting worried for a while. It went from 2500 to 2600 and now it's at 2400. Hope it keeps dropping!

And I hope you're well, Rob! Are you recovering from your last resection? No more chemo for you, right?

Hi Alexandra
I am very new to this board but wanted to share , my husbands CEA is 3,208.0 , he has stage 4 with multiple liver mets both lobes, he just had his 3rd treatment an we are waiting to see the new CEA level should be in by the end of the week. I flipped when I saw it because like you I was only finding people with single to double digit levels... hopefully the level begins to fall, as my husbands WBC's have taken a big hit as well as his H & H , he is now anemic and receiving Iron infusions... prayers for our loved ones

Monimom wrote:Hi Alexandra
I am very new to this board but wanted to share , my husbands CEA is 3,208.0 , he has stage 4 with multiple liver mets both lobes, he just had his 3rd treatment an we are waiting to see the new CEA level should be in by the end of the week. I flipped when I saw it because like you I was only finding people with single to double digit levels... hopefully the level begins to fall, as my husbands WBC's have taken a big hit as well as his H & H , he is now anemic and receiving Iron infusions... prayers for our loved ones

Yes, I definitely understand you!! Hope it's dropping. It seems like such an individual marker and as long as it's going down, that's a good thing, regardless of the range. Best wishes to you and yours!