Pancreatic cancer and CA19-9

Posted by robee @robee, Jan 23, 2023

I have just finished my 13th Folfirinox regimen for pancreatic cancer stage IV. I was diagnosed in May of 2022. I still have no symptoms of the cancer only symptoms are a result of the chemo.
Oncologist removed irinotecan after chemo3 due to a neurologic reaction (slurred speech and shaking leg). This last chemo she removed the oxaliplatin due to increasing neuropathy in my fingers and toes. It was implied that both meds could be added back at lower doses. I asked about radiation as well and oncologist is considering it. I am being treated locally and this is NOT a pancreatic Cancer Center and this worries me. I have been seen and am in contact with John Hopkins and Mayo-not a surgical candidate unfortunately 🙁
Scans have showed significant decrease in the tumor which was small to begin with and no longer evidence in liver. The last scan right before Chemo 13 did not show as significant a change but oncologist said stable is good sign. However, my CA19-9 went from 65 to 67. This was the first time this has increased since receiving Chemo-should I be concerned??

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

@gamaryanne

Y90 is done by an Interventional Radiologist. They embolize the tumor (s)with a precision method to cut off blood flow to the area. So far it has shrunk my liver tumors and they “believe”they are necrotic. I’m still asking for proof. Next up is a PET scan

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Thank you!

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My mom’s CA 19-9 bounces all over. zip then down and up and down. I agree with the rest in that 2 points is nothing. Trending upwards each time is cause for concern. I was also told chemo can make it rise, so can various other factors. In and of itself, CA 19-9 is one tool. It’s never the whole story. You’ve got this! Stay strong, keep fighting!

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@stageivsurvivor

Having initially trained as a medical technologist performing assays in clinical hospital labs using similar immunoassay techniques like is done for determining the value of CA19-9, one had to be versed in the limitations of the assay, interfering substances, intra and inter variability of a particular test method. There are a number of manufacturers of the CA19-9 assay (Roche, Abbott, Siemans) and many reference laboratories and large medical centers where there is a high volume of patients to justify doing the test in-house. Each manufacturer has determined by statistical analysis what the variability and error of measurement is for their test kit.

A variation of +/- 2 is insignificant. During my clinical research careeer, I worked on developing a number of assays of blood and urine analytes and remember all to well having to do a substantial amount of statistical analysis to determine variation in results called standard error of the mean. Samples were run in triplicate….something that is not likely done in clinical testing vs when a test is being developed and optimized.

During the pandemic I had to have my CA19-9 done at a large nation testing lab instead of the medical center I go to for exams and surveillance. The value was 5 points higher. When I went back to the hospital lab for testing, my value was what it always measured at. Ever ask a nurse to recheck your blood pressure measurement when the first result seemed higher or lower than what you normally run? I have and usually the second measurement falls more in line with what I normally run. That is the problem when a test value of n=1 is used.

A rise of 2U/nL of CA19-9 is within the margin of error of the CA19-9 assay. It would be interesting to see what the values would be had your sample been run in triplicate and whether two of the three matched with one outlier or they all matched. The change in value is also not statistically significant to indicate a change in disease treatment status. There are also benign conditions that can cause variations…from inflammation to the use of the vitamin B-7 commonly known as Biotin contained in both pharmaceutical and cosmetic products. The next test point is the one that will give an answer and there needs to be a significant increase to indicate concern is warranted.

This link to Quest Diagnostics indicates a margin of error of 3U/nL.
https://testdirectory.questdiagnostics.com/test/test-guides/TS_CA_19-9/ca-19-9-serum?p=td

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Thanks for sharing your amazing deep knowledge of these assays. My level went from 1750 to 575, two different labs, one was at Quest and the second was at Sloan Kettering Memorial Cancer Center. I have had three cycles of chemo. The drop in CA 19-9 was an indicator that my current treatment was effective. For treatment of BRCA1 associated pancreatic cancer, they favor oxy platinum and gemcitabine as initial treatment but if the oxy platinum and 5-FU show good effect, to continue current treatment. The CT scan also showed some early benefit and the recommendation to continue current treatment. The side effects seem very manageable and I was glad not to have to change and have different side effects. I will have a reevaluation after 7-8 cycles of treatment to see if I have changed from borderline removable to being a surgical candidate.

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@gardenlady1116

Thanks for sharing your amazing deep knowledge of these assays. My level went from 1750 to 575, two different labs, one was at Quest and the second was at Sloan Kettering Memorial Cancer Center. I have had three cycles of chemo. The drop in CA 19-9 was an indicator that my current treatment was effective. For treatment of BRCA1 associated pancreatic cancer, they favor oxy platinum and gemcitabine as initial treatment but if the oxy platinum and 5-FU show good effect, to continue current treatment. The CT scan also showed some early benefit and the recommendation to continue current treatment. The side effects seem very manageable and I was glad not to have to change and have different side effects. I will have a reevaluation after 7-8 cycles of treatment to see if I have changed from borderline removable to being a surgical candidate.

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Prayers for your treatment to keep working !

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Hi, was diagnosed with PANCAN Stage IV with M to liver 10/20/22. As added bonus also diagnosed with Type2 Diabetes. Initial CA-19-9 was @3,600. Started the FU Chemo. After 3 checked CA-19-9 which rose to 42,400. Scans confirmed progression. Changed chemo regimen to Plan B. Checked CA-19-9 after two sessions and it dropped to 1,595. Have not suffered side effects from either chemo (0ther than sensitivity to cold and slight neuropathy from Plan A). Gaining weight with help from Creon. Scans scheduled for 2/23/23 and likely another CA-19-9. As noted in other posts, CA-19-9 is one indication and treatment decisions are not based on it's results alone. While thankful it went down...Dr has said not to be surprised if they go up and down. For now, the trend is my friend. Stay positive, pray, surround with wonderful family and friends and trust your healthcare team. Am in it to win it!

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Hi @robee, I wanted to check in to see how you're doing. I think members answered your question about CA19-9. You might also be interested in this related discussion:
- CA 19-9 and pancreatic cancer: What do the numbers mean? https://connect.mayoclinic.org/discussion/ca-19-9/

How are you doing? Any changes to your treatment plan?

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