The Colon Club

So every 2 weeks like normal since May 29, 2018 my husband goes for FolFox chemo and comes home with the 5fu pump for 46 hours. In the beginning they mentioned CEA and we never heard it again.

I asked about it since its now August, we have new CT scans next week, and I was curious. The nurse did his levels were to high to be measured accurately, it made my husband and I nervous and immediately wished I hadn't asked. Seeing the worry, she said not to be discouraged because DHs liver numbers have dropped significantly since we started.

Anyone have any wisdom to pass along?

I'm not sure why the nurse would say your husband's levels were so high they couldn't be measured. I've heard of people with CEA in the thousands. The fact that his liver numbers are improving is good news - the liver is recovering.

Try not to worry just yet (I know, easier said than done). Many non-cancer related issues can affect CEA including inflammation/infection. I'm assuming your husband has blood drawn before each infusion so he should be getting checked again in a couple weeks. I would suggest you speak directly to his oncologist about it.

For what it's worth, my CEA fluctuated quite a bit during treatment. It bothered me so I mentioned it to my oncologist. She told me not to pay much attention to it as that's completely normal.

hiker

My mom gets her CEA checked every 2 weeks with her chemo sessions. The nurses and the doctor never mentions it, unless you ask. We have patient portal where the CEA and other lab work results the same day the lab work is drawn. So I never ask what the current CEA is, I just look online.

Best of luck

My CEA doubled when I was on chemo. I was told not to worry because the CEA is picking up a protein that the cancer cell emit, ESPECIALLY WHEN THE CANCER CELLS ARE DYING. Thus more than likely the chemo was working. It took about 6 months following chemo for my numbers to drop back to the same level prior to chemo.

If you husband has liver mets, my understanding CEA is more sensitive with liver mets.

Also it is best to get your CEA done at the same location as it could impact your numbers if you get your CEA done at different locations.

If I remember correctly, there are two types of testing. Each with very different results.

I always had my CEA done at the same lab, never at the Dr office.

Yes it is best to get it checked out, but try not to worry.

Good luck,

Lee

The actual cea number is not very important, it can vary from person to person. It's only used as a marker in the beginning for a baseline. The important part is when the cea is checked throughout his treatment they are looking for a change, stable is good and lowering is good. With my treatment they checked every couple of months when the did scans, some places check more often. There are some cases where it can't be used for a marker because it doesn't increase or maybe in your husband's case because it's just to high. And the number being high doesn't mean the cancer is any worse. Ask if they are checking his cea level at his next scan and maybe ask the nurse to explain why it can't be measured?

I was told after surgery that my tumor didn't produce CEA or that CEA was for some reason not a useful marker for me. My CEA at that time was 3. Recently, I found out it was 6. No one seems concerned about it. Frankly, I don't know what to think.

I remember seeing as post in an other forum where somebody said that his/her CEA level was over 7000.-

E

I've read a recent report on CEA and it's overall accuracy for correlation with tumors.
It's really not all that accurate especially if your lab judges levels of 2.5< as normal.
The study suggested 80% false positive rates. This vastly was reduced to less than 25% false positives with the 5.0< normal scale.
If I recall correctly it seemed to suggest a level of around 28 to be over 99% certain of tumor. However there are many that have normal CEA levels with tumors.
I was one of these with under 2.5 at diagnosis, however around cycle 8 my levels spiked to 4.5 then dropped to 3.0 post treatment, but I just had another at 4.6 - but with clear ct-scan.
So it's not a clear indication of things. CT and PET scans are the ruling factors.

Thank you all for your feedback! CT scans tomorrow!

My CEA was normal through most of chemo but was rising through it and then made a small jump on the next-to-last cycle and then really jumped out of the normal range on the last cycle. It wasn't at levels where the oncologist would really worry (20s and higher) but he ordered a CT scan anyways and it was clean. The CEA test two months after the end of chemo was back to normal. So maybe it was the Xeloda (I've heard that your CEA goes up with it) or maybe it was all of the walking that I was doing. It did generate a lot of anxiety for me and I've seen it cause a lot of anxiety in a lot of other people. But it's quite an imperfect measurement until it reaches a certain level and then it's cause for concern. My oncologist said that he's only had one patient where the elevated CEA turned out to be spread.

Just a quick note to remind people that HIPAA gives patients the right to get copies of all of their medical records. If your oncologist isn't sharing info like your CEA results, ask for a copy of your labs. Same goes for CT scans. In my experience it's better to know what's going on so you can ask appropriate questions than to be kept in the dark.