Baseline CEA levels

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AlexandraZ
Posts: 137
Joined: Fri Aug 23, 2019 8:25 am

Re: Baseline CEA levels

Postby AlexandraZ » Wed Dec 11, 2019 5:03 pm

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?
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: 225
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Baseline CEA levels

Postby Claudine » Thu Dec 12, 2019 12:50 pm

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!
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 since 03/19
6.7 cm left adrenal mass 03/19, 3.67 cm 12/19, surgery scheduled for 02/11
CEA since 03/19: high 58, low 3.2, now 10.2
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: 2 calcified granulomas, one 1mm stable nodule

Rock_Robster
Posts: 425
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Baseline CEA levels

Postby Rock_Robster » Sat Jan 11, 2020 1:03 am

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
Male 37; Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. 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 - Stoma reversal booked

AlexandraZ
Posts: 137
Joined: Fri Aug 23, 2019 8:25 am

Re: Baseline CEA levels

Postby AlexandraZ » Tue Jan 21, 2020 7:27 am

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?
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!

Monimom
Posts: 2
Joined: Wed Jan 08, 2020 6:15 pm

Re: Baseline CEA levels

Postby Monimom » Tue Jan 21, 2020 11:11 am

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

AlexandraZ
Posts: 137
Joined: Fri Aug 23, 2019 8:25 am

Re: Baseline CEA levels

Postby AlexandraZ » Wed Jan 22, 2020 4:49 pm

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!
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!


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