CEA and CA19-9 Results as Predictors of Treatment Outcome

Prior to my distal pancreatectomy and splenectomy for IPMN, my CA number was 552. After surgery, it was 75. Resected portion revealed adenocarcinoma, forgot size. Margins were clean, no spread, 16 lymph nodes good. I was stage 1b. I did 12 rounds of Folferinox, after which CA was 1400, scan showed spread to liver. I started Gemzar Abraxane and next CA was 1600, three weeks later CA dropped to 1000. Doctor surmised that the new chemo caused the CA jump to 1600. New scan scheduled for July 25. The CA number is one indicator, but by itself doesn't tell the whole story (that is my experience). Hope this info is helpful. Everyone is different. Best wishes.

Thanks for sharing your story. Not an easy one. Just had my Whipple's and recovery is slow. Not sure I could take more chemo after 6 months of chemo prior to surgery

My CA19-9 prior to my distal pancreatectomy w/splenectomy in Jan/2023 was 195. I was diagnosed at Stage 1B upon having the surgery. After the surgery my CA19-9 value decreased to 10. In February it began creeping up again to 42.

I just completed round 5 of chemo (5FU/Oxaliplatin/Irinotecan/Leucovorin) and my CA19-9 is currently at 155. It has jumped in the range from 115-217 decreasing gradually since 4 weeks ago. Still in the high range. My CEA is currently holding within the normal range of 0.0-4.7. I am currently at 3.5 so it’s been gradually increasing with each chemo round. From 1.3 a month ago to 2.0 two weeks ago, now to 3.5. This scares me! What this all means, I don’t really know. I just had a CT scan on Wednesday plus an MRI yesterday as they found 2 spots of concern in my peritoneum below my liver & on my uterus from a recent PET scan. It seems we are always waiting on results that are never conclusive. Not a fun way to live! :-/

It’s so unnerving. The ups and downs are so stressful. Hang in there. Thank you for your feedback.

@gardenlady1116
So glad to see you post. How are you? What is your recovery like? This will take some time.
Are you able to get outside and enjoy your garden yet? Eating?
You have been in my prayers. ESP. The week of your surgery

We haven't tracked CEA numbers with my cancer (only CA19-9), but your CA19-9 numbers are encouraging with some caveats.

One caveat is that you and your tumors might not express CA19-9 as "loudly" as others. Your pre-surgery 53 sounds pretty low for a pT2N2 tumor, unless that was after neoadjuvant chemo. And your post-op numbers make me jealous! But keep in mind that different labs and their tests have different sensitivities, so you can't necessarily compare one lab's results against another's, or especially another person's from another lab.

On the other hand, if you're tracking CA19-9 regularly, and it starts to rise, it will be obvious in your case. That doesn't necessarily mean it will, or that an increase means cancer. With smaller numbers, jumps one direction or the other may appear alarming percentage-wise when maybe they shouldn't.

Long story short: I don't have any data or experience to say whether the CA19-9 and CEA levels are predictive of final outcome or not. But I would be concerned about the "large vessel invasion and 6 positive lymph nodes."

In my case, Whipple pathology said the pancreas head margin and 22 of 22 lymph nodes were clean, yet we confirmed a recurrence 3.5 months later at the pancreas head. Even a biopsy and two DNA-based tests missed the recurrence until another MRI, DNA test (Signatera), and rising CA19-9 confirmed it.

This is not intended to be a "downer" post, but somewhat of a "lessons learned" post. I was starting to celebrate all the NED indicators just a few weeks before getting the bad news, but that was not my big issue.

It is good that you are continuing to get chemo after your surgery.

What I would do in your position is:

1) See if they are also able to submit your current blood and post-op tissue for DNA testing with Signatera or a similar test

2) See if they can continue tracking your CEA and CA19-9 at least every month, more often if possible, for the next several months. They're not expensive tests, and the more data you have, the easier it is to see trends and know what YOUR "normal" is.

3) Make sure they're continuing to do frequent scans (2-3 months max) during the first year. My recurrence went from invisible on MRI to 2.2cm in two months, and likely metastasized in the 6 weeks we waited (with no treatment) to do a follow-up MRI.

4) Make sure you've had the genetic tests to identify germline and somatic mutations, so you have a better idea of what actionable, targeted treatment may be appropriate.

5) Start exploring the possible clinical trials and treatment centers you might have to use in case there is a recurrence. It can take a long time to find an appropriate study and/or get into another institution for treatment, and having your options mapped out ahead of time may help you avoid some delays.

Wishing you the best, but also success in preparing a backup plan!

Cheers,

mm

I’m wondering if you did Chemo after your Whipple surgery? My husband also had 22 clean lymph nodes and had Whipple for stage 1B in February and currently finished 7 of 12 rounds of Chemo. I doubt if we will ever be able to stop worrying. Thank you for all your helpful information. God bless you.

It is a slow process of recovery. I am gradually increasing my activity, trying to do a little bit at a time and resting. I have been outside to walk to my mail box. I made it to 1700 steps yesterday. I am trying to follow the instructions to eat more often. Challenging since I don't get hungry when I try and eat every 3 hours. I have to remind myself that I am lucky to be alive and to be patient. Recovery is not a straight line.

@kjc12 , Yes, I did 12 rounds of biweekly mFolfirinox in the six months before the Whipple on a Stage-IIa tumor in the pancreas head. CA19-9 bounced around, but the trendline over time was upward, ranging in the mid-100's to mid-200's, but no evidence of spread on MRI.

In hindsight, given my much better response to the Gemcitabine/Abraxane/Cisplatin since the recurrence, I wish they had found some way to test me out against both and use the more appropriate therapy sooner in the neoadjuvant therapy. Either way, the recurrence was really (most likely) a failure of the intraoperative pathology during Whipple to detect malignant cells in the margin, and my current metastatic condition a failure of the biopsy 3.5 months after Whipple to obtain malignant tissue, and a delay in beginning treatment after that. I was also a bit surprised (months later) to see how common the adjuvant chemo is after surgery in contrast to my not receiving any. I have no idea if that would have allowed detection of the recurrence before it metastasized.

I don't want to derail the original poster's topic too much, but part of my "lesson learned" here is to be as prepared as possible in advance and never delay anything.

My husband was about 80% recovered from Whipple when they urged starting chemo. He is having the same combo as you and each one has been hard. This past Tuesday was #7 and it has hit him like a ton of bricks. Wound up in ER yesterday from vomiting 4 times plus diarrhea. They did a scan to check for blockage. Scan came back fine. Dehydration has been a constant occurrence. He has lost so much weight it’s scary now. How you ever handled 12 rounds is beyond me. I don’t want him to continue if it’s ruining any form of daily life.
How did you do it? Eating and drinking is so hard for him, breaks my heart.