CEA up - guessing not good

Posted by chuckmii @chuckmii, Jan 14 8:02pm

I have posted on here a lot over the last 7 months since my wife’s diagnosis and some things have been good and some bad. She is still hanging in there but today’s blood test I think is not good news.

Stage 4 colon cancer, liver, peritoneum and adrenal glands. Recently spent 5 weeks in the hospital due to obstruction and sepsis. Had emergency colostomy.

Her highest CEA before we started treatment in July last year was 256. It went down the entire time on the first 6 rounds of chemo, all the way to 111. First blood test after hospital and recovery was 122. This was 2 months after her last chemo round and right before we started treatment again. We thought that was overall pretty good. It went up a little but figured not a lot of spread.

Round 7 was 5FU only, no oxiplatin due to severe side effects from last time. CEA today was 348! Oncology appointment is Wednesday but I am so devastated right now. Can anyone share why I shouldn’t be? I have read that sometimes it can spike because it is dying and floods the body with the antigen but with her history, I don’t think that’s true. Thinking the doctor will want to add in other drugs but that gives us more to think about. Just very frustrated tonight.

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

verol65 | @verol65 | Jan 15 5:28pm

I have no answer for you, @chuckmii . Just wishing for the best for your wife and a big hug to you both.

rjjacobsen | @rjjacobsen | Jan 15 7:35pm

@chuckmii I also have no answers. Praying for you and your wife.

cjay | @cjay | Jan 15 9:33pm

@chuckmii
Keeping your wife and you both in my prayers and hoping for some positive news to come😘

Colleen Young, Connect Director | @colleenyoung | Jan 20 3:38pm

@chuckmii, As you probably already have researched, increasing CEA levels can mean many things. Here’s some info from the American Association for Clinical Chemistry. https://labtestsonline.org/understanding/analytes/cea/tab/test/ which states “Increased CEA levels can indicate some non-cancer-related conditions, such as inflammation, cirrhosis, peptic ulcer, ulcerative colitis, rectal polyps, emphysema, and benign breast disease.”

The CEA test is only one piece of the puzzle. Your doctor will be able to give you a fuller picture of what is going on.

Have you and your wife met with your oncologist since receiving the results of this latest test? What did you learn? How are YOU doing?

chuckmii | @chuckmii | Jan 21 8:15am

Yes, I have looked at everything I could find. The oncologist was very surprised but said CEA was only one diagnostic tool, so no new info there. We have CT scheduled for tomorrow, which will tell us more and then meet with oncologist again on Thursday to discuss those results with another round of blood tests for next Sunday to see what the trend is starting to look like. For now, we wait.

angelvon | @angelvon | Jan 25 10:16am

Hi, sorry to hear about your wife.
Where is the location of your wife’s primary tumor? Do you know her biomarkers? Knowing the later is VIP to determine which treatment is more effective including whether immunotherapy or Anti-EGFR should be added to her regimen.
It’s important for you and your wife to keep a positive mindset. I’ve read worse research studies and stories and yet there are patients who achieve NED. There is still hope. Prayers for your wife’s complete healing. ✝️🙏💐

chuckmii | @chuckmii | Jan 25 11:50am

@angelvon

TMB 6.3 MSS with KRAS, so immunotherapy is out but they were thinking of adding avastin and seeing if that does anything. All depends on blood tests Sunday and CT scan which got moved to 2/12.

sugar42042 | @sugar42042 | Jan 26 9:23am

I'm glad you and the wife are hanging in there. We're hanging in over here too. Our CEA numbers are up as well (over 230 in December), oncologist said it's only one piece of the puzzle. Most important is how the other half is feeling. Sending you and wife strength and prayers.

sugar42042 | @sugar42042 | Feb 25 8:12pm

Chuck hope you and wife are doing well. Our numbers went up to 400+ hoping that they come down. Wanted to let you know we sat beside a guy in chemo on Friday. He told us his numbers were over 1200 a few months ago, now with flofox6 he's lucky enough to have them down to 91. Just wanted to share that it seems possible

chuckmii | @chuckmii | Feb 25 8:24pm

She has her first treatment of folfiri 10 days ago. First few days were good, then horrible diarrhea and lots of pain. Had to get an upgraded prescription of morphine as she had the worst pain she has ever had in her life. Get bloodwork tomorrow and will see what the numbers are. There are just so many side effects from these treatments that put them through hell.