CA 19-9 and pancreatic cancer: What do the numbers mean?

Posted by lisarlee @lisarlee, Feb 1, 2020

What is your opinion on these numbers? Was diagnosed in September 2019 and my ca 19-9 was 7500. New number yesterday was 909 after 9 chemo sessions. Is this good news or a wasted test?

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@scooterspunkin

my sister has had the whipple surgery and her numbers went from 22.4 that day of the surgery to 10,513.2 this past week the surgery was donr on june 8 th this year so about 6 weeks ago how high should she be before she stops this new chemo

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Hi Scooter,
I can imagine you are very worried about your sister and the swings in her CA 19-9 numbers. Allow me to tag fellow members @palvi @rtw007 @buckslayer @allboyzoo @beachdog @baileycody, who can share their experiences.

Scooter, when did you sister start chemo? How many treatments has she had?

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@beachdog

The Johns Hopkins tumor board will be reviewing my wife's case tomorrow. Next week, we'll have a call the the JH oncologist who oversaw her folfirinox treatments. We're hoping that there's a clinical trial she can qualify for because she's probably not up to more folfirinox. The neuropathy is already debilitating. Folfirinox was effective for the particular mutation in the original tumor but we'll need new biopsies to see if the new tumor has different mutations before deciding on treatment. According to her local oncologist, the small size of the tumor on the ovary will require removal of the ovary rather than just a biopsy. We'll also schedule a consult with an ob/gyn oncologist. Lots of decisions but we need to act fast.

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my sister has had the whipple surgery and her numbers went from 22.4 that day of the surgery to 10,513.2 this past week the surgery was donr on june 8 th this year so about 6 weeks ago how high should she be before she stops this new chemo

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@palvi

My dad's CA 19-9 level was 4999.9 when he was diagnosed with cancer, after 6 chemo the CA 19-9 level went down to 258 now after 1.5 months CA 19-9 level again increased to 450 . Does that mean that he can is coming back?

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Hi @palvi,
Here's information about Cancer Antigen 19-9 (CA 19-9) https://labtestsonline.org/tests/cancer-antigen-19-9
CA 19-9 is primarily used to monitor response to pancreatic cancer treatment and to watch for recurrence. In the section called "What does the test result mean?" it states:
"Levels of CA 19-9 that are initially high and then fall over time may indicate that the treatment is working and/or that the cancer was removed successfully during surgery. Levels that remain high or rise over time may indicate that treatment is not working and/or that the cancer is recurring."

It is really important that you check with your father’s cancer care team before assuming that his slight rise in levels mean recurrence. The CA 19-9 test is only one test. To confirm a recurrence, they would perform further testing. It is possible that this rise is an expected fluctuations based on treatment. His team can counsel you more accurately.

Is your father currently in treatment? Are you able to communicate with his oncologist?

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My dad's CA 19-9 level was 4999.9 when he was diagnosed with cancer, after 6 chemo the CA 19-9 level went down to 258 now after 1.5 months CA 19-9 level again increased to 450 . Does that mean that he can is coming back?

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They are tumor markers and show growth of tumors. Mine barely went up but most people have hundreds and thousands.

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@colorafo19

Thanks for asking. He has been getting chemo every other week for the last 5 months. We will be back at Mayo Clinic at the beginning of March to see how things responded. Hopefully a chemo holiday will be coming soon!

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Which chemo is he getting? How sick has it made him? Does he have "good days" between chemo treatments?

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@lisarlee

Has he had scans showing tumor shrinkage?

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That is so encouraging! My dad's is 21,499. Would you mind sharing with me what treatment your husband got and how advanced the cancer was when it was diagnosed?

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@buckslayer

Beachdog our stories continue to align. My husband 's ca 19-9 has also been rising fast the past few months and we fear a drop metastasis to his colon. Scans and a biopsy so far are inconclusive but the lab marker usually doesn't lie, so we will likely be starting a new chemo regimen this week or some type of immunotherapy. He already had neuropathy from the folfirinox regimen so wants to avoid any drugs that might worsen this. PC is known for spread even after clean surgical margins, so I guess we just roll with the punches 😔. We are being told at Mayo that additional operations to remove further cancer after PC are not advised since there is likely cancer in other places as well - if it spread to one place it has or will spread to others, hence the chemo route to try and kill it off instead. Prayers to all.

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Best of luck on this new leg of your wife's journey!

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@buckslayer

Beachdog our stories continue to align. My husband 's ca 19-9 has also been rising fast the past few months and we fear a drop metastasis to his colon. Scans and a biopsy so far are inconclusive but the lab marker usually doesn't lie, so we will likely be starting a new chemo regimen this week or some type of immunotherapy. He already had neuropathy from the folfirinox regimen so wants to avoid any drugs that might worsen this. PC is known for spread even after clean surgical margins, so I guess we just roll with the punches 😔. We are being told at Mayo that additional operations to remove further cancer after PC are not advised since there is likely cancer in other places as well - if it spread to one place it has or will spread to others, hence the chemo route to try and kill it off instead. Prayers to all.

Jump to this post

The Johns Hopkins tumor board will be reviewing my wife's case tomorrow. Next week, we'll have a call the the JH oncologist who oversaw her folfirinox treatments. We're hoping that there's a clinical trial she can qualify for because she's probably not up to more folfirinox. The neuropathy is already debilitating. Folfirinox was effective for the particular mutation in the original tumor but we'll need new biopsies to see if the new tumor has different mutations before deciding on treatment. According to her local oncologist, the small size of the tumor on the ovary will require removal of the ovary rather than just a biopsy. We'll also schedule a consult with an ob/gyn oncologist. Lots of decisions but we need to act fast.

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@beachdog

My wife's CA19-9 dropped to below 30 after her surgery 2/20/20 but has been increasing ever since. Surgical margins were 100% clean and every surgical biopsy was negative. She's has blood work every month and scans every 6 weeks. Every scan has shown nothing. She's also had circulating DNA tests also negative. Two months ago the CA19-9 doubled and last month it quadrupled. The scans from last week now show a mass on the left ovary. Prior scan that visualized that area was in August and was clear.

We won't know for sure if this is pancan spread or something else entirely until it is removed, but due to the CA19-9, it is likely.

Bottom line, for people who's CA19-9 tracks the progression of their disease, it is an indicator worth paying attention to.

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Beachdog our stories continue to align. My husband 's ca 19-9 has also been rising fast the past few months and we fear a drop metastasis to his colon. Scans and a biopsy so far are inconclusive but the lab marker usually doesn't lie, so we will likely be starting a new chemo regimen this week or some type of immunotherapy. He already had neuropathy from the folfirinox regimen so wants to avoid any drugs that might worsen this. PC is known for spread even after clean surgical margins, so I guess we just roll with the punches 😔. We are being told at Mayo that additional operations to remove further cancer after PC are not advised since there is likely cancer in other places as well - if it spread to one place it has or will spread to others, hence the chemo route to try and kill it off instead. Prayers to all.

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