Pancreatic Cancer Group: Introduce yourself and connect with others

Good afternoon,
My husband has Stage IV pancreatic cancer that has metastasized to the liver, perineum, and possibly a couple lymph nodes. He had a stent placed this week to help with a blocked kidney ureter and then had his 13th round of chemo yesterday. Because he is on a trial they do extensive labs every 2 weeks. Two weeks ago his CA19.9 was rising but not drastically. It was at 2,819 on the 25th of March and his labs yesterday report a CA19.9 of ">34,000. The office did confirm for me that this is not a typo and moved his scan up from May to two weeks from now. Has anyone else had a drastic jump like this? His CEA is also rising slowly, it is at 3.8 now I believe. When he was diagnosed in August of 2023 the highest CA19.9 he ever had was just over 10,000. I am slightly panicking at this new lab value. Any experience or insight on this that can be shared would be appreciated.
Thank you in advance.

@clschreiner, that must be very scary for you both. You are not alone. There are other members talking about dramatic increases in CA 19-9. You may wish to join these discussions:
- CA-19 has elevated even more
https://connect.mayoclinic.org/discussion/ca-19-has-elevated-even-more/
- CA 19-9 and pancreatic cancer: What do the numbers mean?
https://connect.mayoclinic.org/discussion/ca-19-9/
See all: https://connect.mayoclinic.org/group/pancreatic-cancer/?search=Ca+19#discussion-listview

Thank you so much for your information and your reply. They did move his scan up from mid May to next week, so we will see what that says. Until then we are trying to remain positive or at least neutral and not totally freak out about the very dramatic increase in that value. I always seem to prepare a little space in my mind for the worst news just so I can better handle it when it comes. I know that is probably not the most hopeful or positive way to approach this but maybe it is just a coping mechanism for me. Not sure. Regardless, thank you for your reply and prayers for all facing this journey,

Hello. A recent MRI showed "T2 bright lesions" in my pancreas with "no obvious connection to the pancreatic duct." I know this is not cancer...for now. Protocol states follow-up MRI in six months. As a two-time cancer survivor (breast cancer 1998 and thyroid 2008), my sense is that six months is too long to wait. I am following up with my primary care and obtaining other medical opinions. Am I over-reacting? I would appreciate feedback from anyone who has been here. Thank you.

@optimist1591 , I can't say much about the protocols specifically, but if you are considered a HRI (High-Risk Individual) there's usually a separate category in the flow chart.

Most of the HRI assessments include genetic testing for inherited mutations and discovery of close blood relatives with cancer history. Since you've already had two types of cancer, I suspect you'd fall into a higher-risk category that justifies more frequent testing.

Sometimes they interweave different types of tests (EUS, MRI/MRCP, PET) in shorter intervals to get different views and check for rapid changes, then back off to less frequent monitoring if all appears stable.

But with your history, I would err on the side of caution... Seek out a second opinion, second imaging appointment, and start getting fairly regular blood tests for CA19-9 and CEA to get a baseline of those. They're not gold-standard indicators on their own, but it's easier to know if they're increasing when you have a healthy reference to compare them to. Get a germline (hereditary) genetic test like Invitae if you haven't already.

Thank you very much! Good advice to establish baselines.

Not sure if I am not doing this right. Replied tothis previously but dont see my post. UPDATE now,
persistent GI Bleeding requiring 5 units then 2 days later 2 more units and still HGB only 7.1: CT dound GDA bleed, went thru groin and cauterized . 2 days later, Hgb. dropped from 8.2 and found black tarry stool. (Stool the previous day was normal. liver mets apparently, found 4 1/2 yrs ago, but no apparent growth. Still lover enzymes range from very high to not too bad. other than PT and PTT what clotting studies need to be done?
Previously cauterized an area in duodenum. worked for a bit then bright red blood vomiting x3. requiring 2 units. any suggestions would be appreciated.

I see my posts now.

my initial post, writing on behalf of my son in law, age 58, diagnosed with 0ancreatic cancer 4 and 1/2 years ago. chemo and rediation, not new confirmation of new cancer despite muliple endoscopies aand ct scans and pet scans, no increase in CA19, (i was told his never showed up as elevated)
lost quite a bit more weight in last few months due to GI symptoms..
been in hopital now since april 26. GI bleeding. see mypost from earlier today. For some reason they dont even have him back on Tpn so nothing in for nutrition for about a week. Thank you for any suggestions. Great to have found this mayo connect!

My husband, age 69 had some back pain about 1.5 years ago. Mentioned it to the doctor. Five or six months later it got a lot worse, so back to the doctor. He was an active xcountry skier, hiker, white water kayaker... and just thought he'd injured his back in some way. Spent all last summer trying to get a diagnosis. And after some chemo and imunotherapy for lung cancer, found that he had been misdiagnosed (by doctor here and also a second opinion from Cleveland Clinic). So, started over with tests and diagnosing. Pancreatic cancer, stage 4, with mets to bones (back), lungs, lymph nodes. Radiation on some of back lesions last fall and after 3 or 4 months his back pain has lessened... from radiation or chemo? CA19-9 numbers were over 39000 last November. Chemo every two weeks since then with Folfirinox. Just had treatment #10. Total exhaustion most of the time, lack of appetite, nausea. The past two weeks we scheduled extra hydration and anti nausea through infusion every few days and that did seem to help. Doctor is saying total 12 treatments of folfirinox, then we'll see. His CA19-9 numbers fell steadily until the one yesterday when it went from 1090 back to 1176. Still very high, but compared to 39000+, it has dropped a long ways. CT scans have been unremarkable, but oncologist says improvement. So that is where we are. Caught us completely off guard as my husband was one of the healthiest people I knew.... exercising daily, etc. Now having trouble getting off the couch. Any suggestions, insights are welcome. Thank you.