Another CA-19 post...How do you not freak out when it rises?

From what I have read you are still in the normal range. When my tumor was found I was 1567. My Whipple surgery was 7-12 and on 8-20 my CA 19 was 36.7. Just above normal. Earlier this week it was checked again, and it was 222 and my doctor is not concerned enough to move me from palliative care to hospice.

Best of luck to you with your treatments.

Scan is key. My CA19-9 was 192 before surgery on February 9, 2024, I was resectable stage 2, 3 of 26 lymph nodes were involved, some nerve involvement, but all margins were clear. My CA19-9 dropped right down to 5 after surgery, stayed around 5,86,7,8,11 all through Folfirinox. I was hopeful for a cure. Last infusion was September 13, then I had a CT scan October 2nd and darnit, 2 lesions in my liver and two tumors in the soft tissue under the skin in my belly (apparently extremely rare to have metastases to soft tissue, but confirmed). And on October 17th, one month after my last dose, my CA19-9 was right back up to 195. So I'm now Stage IV, just finished my first 3-week cycle of Gemcitabene/Abraxane. Good signs are that the tumors in my belly stopped hurting after the first infusion, and my CA19-9 dropped from 195 to 174 after my first infusion, and down to 121 after my second. Sure hope it keeps going! Good luck with your scan.

The normal range is 0-34. It can fluctuate due to viruses, etc.
just make sure your scans are every 3 months. Surveillance is key. Even though margins are clear at surgery this does not guarantee what may be in the bloodstream. Your numbers are low! Early detection is the key.

You’re still within normal range, that’s encouraging.
Have you had the test at the same facility and on the same testing machine?
Someone here, much more knowledgeable than me, has stated each machine has standard tolerance that could make reading the exact same blood sample give 2 different numbers and yet still be within acceptable accuracy limits.
Also said getting tested at different locations where they might use different test machines could cause different numbers even if nothing had changed with your blood sample.
God bless and good luck.

Your numbers are still in the good range, but worth watching. The more often you test, the easier it is to detect a real trend, with answers sooner rather than later which may help you start treatment sooner rather than later if necessary.

You mention having surgery about 9 months ago. Did the hospital save any tissue? If so, could they send it out for a circulating tumor DNA test like Signatera, if they haven't already? You could do the blood draws for Signatera in between scans to get an extra data point on the magnitude of cancer present in your bloodstream, and use that as an additional measure of your chemo's effectiveness.

My personal experience has been that Signatera tends to lag CA19-9, but tracks it well other than the delay.

When you say mets to the "soft tissue under the skin in your belly," are they actually on the outside of the anterior peritoneal wall, or the inside of that wall? I had two mets pop up there (one on left side and one on right side of anterior peritoneum) early on after my recurrence, so I don't know if it's all that rare, or you and I just got lucky.

Wishing you the best!

mm

I don’t think it’s rare. I and a few others on this forum also have the peritoneal nodules although in my case they are just assuming they are there since they were seen during the ultrasound endoscopy in December 2023, but couldn’t get a good biopsy sample of that area.

mm: good to see you are back on the forum!

Hi @markymarkfl! My tumors are actually in the soft tissue, not on my peritoneum. I am rare in several ways, my cancer is adenosquamous, rare and apparently very aggressive. I am in a study at Princess Margaret in Toronto, where they actually grew an organoid that matches my tumor. My mutations are KRAS G12V and Arid1A E1108. They're supposed to try different drugs on the organoid to see how it responds but I don't think they've done that yet. Also I found out that they are doing ctDNA testing on my blood as part of the study, but not giving me the data (!). But I can ask my oncologist to include that in my bloodwork so I will request this at my meeting week after next. Thank you for the suggestion!

Since you have G12V you should ask about access to the RM 6236 pan KRAS investigational drug.

Agreed. I'm investigating where I could get this. For now I'm doing Gemcitabene/Abraxane and it seems to be shrinking my tumors and bringing my CA19-9 down. RMC-6236 is my next go-to if the Gem/Abraxanedoesnt continue doing its thing. Thank you @gamaryanne!

So glad it’s working! Stick with it. For many it’s the answer!!