How high a CA19-9 have you had/seen?

33,000 in this thread https://connect.mayoclinic.org/discussion/ca-19-numbers-continuing-downward/ 🙂

Sometimes cancer is not the only contributor. And it's always good to double-check the units. I'm sure you have (where normal is usually under 34-37, depending on lab & test chemistry), but some tests get reported in micro's instead of milli's and the perception/reaction can be shocking.

@hubby11
Take heart! My CA19-9 was 23000 when I was diagnosed 11/2021.
Last week it was 21.
I remember that your wife’s is higher. Mine didn’t fall over night! It’s a fight, 2022 was a BIG fight. 2023 had its ups and downs. But the fight is totally worth it. My husband gave me space, gave me quiet when I needed it and made my home a warm place to be when we couldn’t have people in or really go out. When I felt good he encouraged me to GET BUSY and stay involved. He never acted like I was terminal (sometimes that irritates me😂).
If you are at a pancreas center of excellence they will advise her on how to eat and drink during chemo. This is very important and you will be a big help here. Laugh, watch good movies together, get fresh air, give her space and fight! Good research is coming down the pipe for all of us!!!! 💜

I was diagnosed as having pancan in late March 2023 and stage 4 via laparoscopy on April 6, 2023, so I'm just short of one year. The highest CA 19-9 recorded for me at any point was 1,736 in mid-March. I'm currently at 30 (test taken last Friday 2/2/24) and have been in "normal" range since mid-November. (Of course, normal doesn't mean NED, since my CT scan still shows a tumor, although it's much smaller than initially.) FWIW, I'm not operable due to blood vessel involvement, so chemo is my weapon of choice. I just finished round 19 on Tuesday. I was on modified Folfirinox originally and now on modified Folfiri (no oxaliplatin).

I love the comments from @gamaryanne . Pancan is a battle, and I certainly understand your concern. But there is hope. It'll take hard work, dedication, research, and a semblance of normalcy, as she points out. I was forced to retire from teaching, and it took me a long time to come to grips with that. However, since then I've begin volunteering as a "reading buddy" at my local library, working on needlework projects for my family (I never had time to do that before), and writing postcards urging registered voters to cast ballots in this election year.

Wishing you and your wife all the best!

Thank you.

I was diagnosed with a CA19-9 level of 1400 almost two years ago. I have some ovarian cysts though that are affecting my numbers. Back in August they jumped from 37 to 2222. They dropped back to almost normal within a couple weeks. This wee they jumped from 54 to 43000. Talk about a scare. I had scans just a couple weeks ago with no activity and will have scans again on Monday, but at this point the docs are blaming the cysts (they keep growing.) As far as I know, docs rely on the scans more than the numbers.
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Thank you for all of the encouraging comments from everyone.

My wife’s was over 43,000 when they tested 2 weeks ago. Biopsy is scheduled for this next Wednesday to set mine treatment plan and prognosis. Oncologist didn’t want to do any chemo until after that is done to determine specific cancer type, mutation, etc.

A beautiful and inspiring story

@gardenlady1116 , you're so kind! I actually take encouragement from your posts and others on this board. So many people are doing their best to live normal lives despite this ^(*#@%! cancer, and they all have great ideas on how to accomplish that. I've taken a lot of inspiration from you and others. (Plus, I really don't do well sitting still. My poor mom used to shake her head at that, haha.) Thanks for sharing your story and your ideas, and for your support!

I hope she is doing well?

I was diagnosed at stage IV (liver mets) as an “incidental finding” from kidney imaging, and went straight to the ER—silly me, they didn’t think it was an emergency. But I did get a CA 19-9 test out of them, and it came back over 20,000.

It took 2 months to get chemo in me and my CA 19-9 was retested: 45,000. That was terrifying; imaging also showed the longest lesion doubling in length.

CA 19-9 has come down to 1,000 over 5 cycles of gem+cis (I have a BRCA2 mutation). Which seemed low, although looking around here for the first time I see that might still count as high. I double checked, the reference range is 0-35.

I expect to start a PARPi in a month or so. Maybe I’ll stopped rounding down to the nearest thousand, too?

Thank you..love your statement.."research coming down the pike"
It is all ups and downs but you're right..the fight is worth it!!
❤️🙏🏽✝️