My CEA rise history.

[zx10guy]

It's been a long while since I checked in here. I see some familiar people and some new ones (unfortunately). Lots of things have happened to me both health wise and personal such as going through a nasty divorce along with child custody issues. Health wise, I'm now dealing with hypertension along with being monitored for an aortic aneurysm.

But anyways, back on topic. CEA has always been a topic of stress and discussion on this board and others. I hope that my story will give some hope to those with a huge significant rise in CEA. The rollercoaster started during a routine 3 month checkup in March of 2017. My CEA in December of 2016 was 5.4. In March, it shot up to 15.6. All sorts of tests were done in a one month period. CT w/contrast, PET, small bowel endoscopy, MRI targeted at my small bowel, upper GI endoscopy and colonoscopy. Nothing was found. For the next two years, my CEA bounced between 11 and 20. My oncologist wasn't worried. Then just past the 2 year mark when I'm on 6 months surveillance, it jumped to 26. Then 28.6. Then 52. This triggered a PET scan order even though a CT done showed nothing. PET was clear and a CEA was redone a month later which came back at 44.4. My doc seemed ok with this and was going to watch closely. Next appointment, it went back up to 52. But since it didn't climb higher than the previous high reading, he was ok with just watching. The CT done during that time was also clear. Then the next appointment, it shot up to 84.7. This triggered yet another PET scan which found nothing. July of last year, I went in and the rise in CEA was significant enough where my doc urged that I get another CT scan. I decided to go with it as I was hesitant due to all the scans I've had....15 CT w/ contrast and 5 PET scans. Well, the scan showed nothing again. I opted not to know what my CEA number was then as I didn't want the stress.

Fast forward to this past week. Had another 6 month checkup but with a new oncologist as my previous one retired. The appointment didn't go so well as the new doc feels it's only a matter a of when not if I get cancer back based on the CEA trend. I left the office deflated as I've been dealing with this rollercoaster for 4 years now. I finally worked up the nerve to check my blood work on the patient portal as I haven't heard from my doc on the blood work. So here's the big surprise. I did finally find out what my number was in July. It was 189.1. That would have sent me on a tail spin had I found out during that time. Now here's the interesting thing. I looked at the recent CEA test done on Tuesday. I had to stare it for a bit to make sure I wasn't reading it incorrectly. They ran two tests as I think they wanted to verify there wasn't an error in running the test. The higher of the two numbers was 21.9. The lower and I think the official number is 16.6. That's a significant drop. I may be premature in saying this until my next appointment in July. But this seems to point that what is causing my CEA rise might be from something benign. My new doc did say that she would consider the elevated CEA being caused by something benign had it dropped significantly at any point. But now it has.

So hopefully, this gives some people hope as I have not found anyone that has exhibited the same behavior as me except for one documented case in Taiwan.

Wishing everyone the best....

[MadMed]

Wow, thanks for sharing zx, that’s an incredible roller coaster. Glad it’s down, if only for peace of mind. I got my CEA when I was diagnosed, it was 1.0. I never got it again since. As they say sometimes ignorance is bliss

[beach sunrise]

I have been thinking about you! It is good to see your update here. Benign is the best thing you could possibly hear.

[rp1954]

Thanks for checking back in with your CEA saga. It seems clear you have some anomalous tissue that is benign or at least less metastatic, thankfully missing molecular elements that cause metastases. I've mentioned my suspicion that the CEA carrier is missing the common metastatic epitope, or their docking epitope is missing, similar to those identified by the CA199 - CSLEX1 antibody pair.

I do think you should expand your envelope of investigation. You've been somewhat victimized by std of care, and indifference - at least with all the radiation without less damaging molecular investigations and literature comparison.

Example:

Hi zx10guy, have they tested any other cancer markers besides CEA?

No. But he did run a specific test for my liver when things with my CEA got crazy which came back normal. I did ask a while ago about doing a CA 19-9 but he said he feels it's not going to provide any more insight into what is going on.

This is what I call gas station oncology - scientifically, the guy is little more than a gas station attendant, "fill 'er with unleaded" (say xeloda), "or platinum plus" (say Folfox), "and I'll check the CEA" (only). I bite my tongue most of the time because I know the doctor's education and insurer politics (and abuses) are part of this problem, but at some point, deserves criticism.

I worked on the "extra biomarkers" problem, reading medical literature, to avoid being blind sided in our early years, like happened to Starbuck30 with lymph nodes, going from a post chemo hopeful (mis)stage III to a seriously missed mCRC Olymphian, to dead in a few weeks. Literally a nightmare example of in your face missed metastases that I suspect I could have caught pretty easily. Conversely a clean set of expanded markers carries more relief but even a small problem caught and corrected, or improvement on the markers can increase one's sense of confidence and security, albeit startup maybe emotionally tough in stage III and IVs.

I see several levels of blood panels investigation available, in much different cost ranges. Obviously some buy in from an insurer, support group, lab or med school would be nice once the price tag goes over a few hundred. Stage IVs often carry a bigger part of thousands in investigations just for a clue what is going on, much less a chance to stay alive.

Cheapest, most basic additional cancer risk info for us and over half of CRC patients: CA199, LDH
These combined with CEA and the CBC actually can be a pretty good risk interpretation system on the first day as well as monitoring for those that have even mildly elevated CA199 (over 22-27, not 37) not due to inflammation.

What we also wanted: common inflammation panels: hsCRP, fibrinogen, d-dimer, ceruloplasmin, ESR, ferritin
additional common liver panels: ALP aka AlkP, LD aka LDH, GGT aka GGTP, PT/INR, bilirubin
other panels that may warrrent monitoring for deficiency, elevation or instability: HgbA1C, TSH, and 25 hydroxy vitamin D.
note: the inflammation panels have to consider Covid effects since 2019 but are handy for that too. Some people and CRC pts have background inflammation that might misinform doctors suspecting Covid, without having their prior lab values handy.

Then finally you get to the big, expensive guns:
ctDNA, immunology tests, cytokines and growth factor tests.

[I_will_fight]

Cheapest, most basic additional cancer risk info for us and over half of CRC patients: CA199, LDH
These combined with CEA and the CBC actually can be a pretty good risk interpretation system on the first day as well as monitoring for those that have even mildly elevated CA199 (over 22-27, not 37) not due to inflammation.

What we also wanted: common inflammation panels: hsCRP, fibrinogen, d-dimer, ceruloplasmin, ESR, ferritin
additional common liver panels: ALP aka AlkP, LD aka LDH, GGT aka GGTP, PT/INR, bilirubin
other panels that may warrrent monitoring for deficiency, elevation or instability: HgbA1C, TSH, and 25 hydroxy vitamin D.
note: the inflammation panels have to consider Covid effects since 2019 but are handy for that too. Some people and CRC pts have background inflammation that might misinform doctors suspecting Covid, without having their prior lab values handy.

Then finally you get to the big, expensive guns:
ctDNA, immunology tests, cytokines and growth factor tests.

Interesting post, May i ask you about the clinical significance of all those markers?

I neve had my LDH measured, is this relevant? May I ask what is this sensitive to?

ALP and AlkP are liver enzymes, right? I think I got my AlkP levels tested, but not sure what ALP ? When I google ALKP and ALP they appear to be the same enzyme, so I am probably googling it wrong.

Liver Enzimes
AST (GOT) suero 20 UI/l (0 - 34)
ALT (GPT) suero 17 UI/l (10 - 49)
Fosfatasa alcalina suero 70 UI/l (45 - 129)
Gamma-GT suero 23 UI/l (0 - 73)


I had my PCR measured (proteina c-reactiva) I understand it is a common inflammation marker, is that the same as hsCRP you mention above?

Proteínas
Prueba Resultado Unidades Valores de Normalidad
Proteína C reactiva suero 0.10 mg/dl (0 - 0.5)
Proteínas totales suero 6.7 g/dl (5.7 - 8.2)
Procalcitonina suero 0.03 ng/ml (Inf. 0.5)

Regarding CA19-9 I read somewhere that for some people is so low that it becomes irrelevant (they just dont generate much CA199), I think this can be my case.
Marcadores tumorales
Prueba Resultado Unidades Valores de Normalidad
CEA suero 1.4 ng/ml (Inf. 5)
CA 19-9 suero 1 UI/ml (Inf. 37) Adultos normales

[rp1954]

Some common lab panels take on extra meaning and different ranges once you are diagnosed with (advanced) colorectal cancer, or there are medical papers to that effect. Cancer doesn't happen in a vacuum with only a single marker. Cancer has many blood panels and markers that are cause, effect or both. When a long series of expanded blood panels are combined skillfully with the medical literature, more insights can be obtained, the cancer much more closely tracked and attacked. I think most CRC patients' chances are injured, starting on the day of diagnosis when they don't get better blood work and interpretations.

In our case, the extra data allowed us to track our progress; identify and eliminate chemo toxicity problems; develop and maintain an active chemo formula; and eventually, drive CEA and AFP lower, normal and flat, cancer markers that had been elevated and out of control at different times while using few(er) scans.

LDH, the total of LDH1 - LDH5, is one way to roughly monitor metastases and HIF-1a activity through the elevation of LDH4 and LDH5. LDH series can suggest cancer clearance or potential metastatic activity with different range information than what's given by the lab.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7285607/

Your CA199 is an ultralow CA199, and should remain low. Ultralow is a read it once and done situation - it's permanent, considered a favorable risk factor. For other CRC patients, CA199 may be their best monitoring marker when CEA is flat and/or ultralow. For them, your lab's "(Inf. 37)" can be dangerously wrong.

A single high CRP needs more context. For us, CRP mainly told us how much inflammation could be influencing the other blood data, especially CA199, along with CRP's normal potential implications. Since 2019, Covid-19 has joined the list.

[claudine]

This is crazy! So happy for you about this big decrease, I sure hope it continues and you can move on with your life without this nagging in the back of your mind. Unfortunately wasn't the case for my husband, CEA has been on a downward trend since July too but its source isn't benign inflammation... But at least we found it.

[radnyc]

My CEA has historically been on the high side, not as high as yours, but at 9 avg. I continue to be NED from a stage 4 diagnosis, 12 years. I’ve finally learned to not care about it unless it goes to 50+.

[I_will_fight]

Some common lab panels take on extra meaning and different ranges once you are diagnosed with (advanced) colorectal cancer, or there are medical papers to that effect. Cancer doesn't happen in a vacuum with only a single marker. Cancer has many blood panels and markers that are cause, effect or both. When a long series of expanded blood panels are combined skillfully with the medical literature, more insights can be obtained, the cancer much more closely tracked and attacked. I think most CRC patients' chances are injured, starting on the day of diagnosis when they don't get better blood work and interpretations.

In our case, the extra data allowed us to track our progress; identify and eliminate chemo toxicity problems; develop and maintain an active chemo formula; and eventually, drive CEA and AFP lower, normal and flat, cancer markers that had been elevated and out of control at different times while using few(er) scans.

LDH, the total of LDH1 - LDH5, is one way to roughly monitor metastases and HIF-1a activity through the elevation of LDH4 and LDH5. LDH series can suggest cancer clearance or potential metastatic activity with different range information than what's given by the lab.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7285607/

Your CA199 is an ultralow CA199, and should remain low. Ultralow is a read it once and done situation - it's permanent, considered a favorable risk factor. For other CRC patients, CA199 may be their best monitoring marker when CEA is flat and/or ultralow. For them, your lab's "(Inf. 37)" can be dangerously wrong.

A single high CRP needs more context. For us, CRP mainly told us how much inflammation could be influencing the other blood data, especially CA199, along with CRP's normal potential implications. Since 2019, Covid-19 has joined the list.

Thank you very much RP1954. Very informative!
I will mention all these markers to my oncologist.