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Thread: New to cancer and scared of CA 19-9 levels

  1. #1
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    New to cancer and scared of CA 19-9 levels

    This is my first experience with cancer. My mother-in-law just found spots on her liver and pancreas. She's had her first oncologist appointment and goes back for the official diagnosis/prognosis next Tuesday, after a biopsy, CT scan and bloodwork. The doctor told us it's most likely stage IV Pancreatic cancer. It didn't take long for my wife and I to realize what that meant. She is devastated. And our two little girls will be soon.

    I guess I am looking for hope. There doesn't seem to be any. We recently got the results of her bloodwork, and her CA 19-9 levels were 13,279. After some research, that seems through the roof, super high. What is the average range of CA 19-9 for those with Pancreatic cancer?

  2. #2
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    Hi indiehouse,

    It's perfectly normal to feel devastated. Just one month ago, my father was diagnosed, so I understand the wave of emotions. There is hope. I recently attended a pancreatic symposium at Moffitt and met several stage IV survivors. Talking with them really changed my outlook from despair to optimism. Staying positive is key. Read over some of the posts of this forum. I am new here also, but the information here helped me develop a plan of attack. Also check out www.pancan.org

    In terms of the CA 19-9, our lab results show a normal range of 0-35. Our oncologist suggested that the important thing is whether the levels are rising or falling during treatment and not so much as determinant of the severity of the cancer. For reference, my father has a relatively low reading of 60, but that doesn't take away the fact that he has cancer, his bloodwork may not be producing the markers like others. I'd like to hear some other's input on this as well.
    Father age 65 male, excellent health, no symptoms, routine CT revealed pancreatic mass
    Oct 2019...CT scan for hernia pain reveals 2 x 2.2cm ill-defined mass body/tail
    Oct 2...CA 19-19 of 65.7
    Oct 2 ...Upper EUS biopsy...invasion to splenic artery, others veins/arteries suggest no local invasion
    Oct 7...CA 19-9 drops to 51.7
    Oct 8...additional CT scan reveals body/tail soft tissue mass 2.5 x 1.4 cm, main duct dilated up to 1.1cm, no definite local invasion, possible spot near liver
    Oct 8...PET body/tail lesion SUV max 3.8, peripancreatic soft tissue inseparable from lesion and 4th portion of duodenum/proximal jejunum, no definite evidence of metastatic disease
    Oct 18...biopsy...mucinous adenocarcinoma in background of extracellular mucin, no mention of cyst
    Nov 5...FOLFIRINOX begins
    ...followed by radiation and hopefully surgery for distal/splenectomy
    Staying positive in the face of adversity.
    Take life one breath at a time and be grateful for every moment.

  3. #3
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    My wife's CA19-9 levels started at 21,000 peaked at 45,000 and are now down to 3700.

    Checkout my signature for more details, but my point is do NOT let the absolute values freak you out. The most important items are the TRENDS in CA19-9 values and the CTscans.

  4. #4
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    My signature does not come through when I post from my phone.

    Click on the link below for my wife's personal experiences with CA19-9 results.

    https://www.cancerforums.net/threads...LFIRINOX/page2

  5. #5
    Super Moderator Top User ddessert's Avatar
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    This question is often asked and you can check out my Causes of CA19-9 video.
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - IMRT+Xeloda
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2019 - NED
    Mar 2013-present - NCT01088789
    Jun 2019- NCT03805919
    @pancanology

  6. #6
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    ddessert,

    Great video! I know the original poster was scared of the levels. Just for reference, my father has had 3 blood tests over the last month measuring the CA 19-9 levels prior to beginning any chemo treatment. October 2nd 65.7....October 7th 51.5....November 5th 46.4. I don't know what to make of the dropping levels other than perhaps he isn't secreting the required blood marker. It will be interesting to see what the levels read on his next visit now that he started chemo on Tuesday.

    How does one go about testing for the Lewis Antigen? Is this shown in the bloodwork or genetic testing?
    Father age 65 male, excellent health, no symptoms, routine CT revealed pancreatic mass
    Oct 2019...CT scan for hernia pain reveals 2 x 2.2cm ill-defined mass body/tail
    Oct 2...CA 19-19 of 65.7
    Oct 2 ...Upper EUS biopsy...invasion to splenic artery, others veins/arteries suggest no local invasion
    Oct 7...CA 19-9 drops to 51.7
    Oct 8...additional CT scan reveals body/tail soft tissue mass 2.5 x 1.4 cm, main duct dilated up to 1.1cm, no definite local invasion, possible spot near liver
    Oct 8...PET body/tail lesion SUV max 3.8, peripancreatic soft tissue inseparable from lesion and 4th portion of duodenum/proximal jejunum, no definite evidence of metastatic disease
    Oct 18...biopsy...mucinous adenocarcinoma in background of extracellular mucin, no mention of cyst
    Nov 5...FOLFIRINOX begins
    ...followed by radiation and hopefully surgery for distal/splenectomy
    Staying positive in the face of adversity.
    Take life one breath at a time and be grateful for every moment.

  7. #7
    Super Moderator Top User ddessert's Avatar
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    I think the Lewis Antigen test must be pretty specialized and I don’t know how to have it tested. I do understand that some people who don’t make CA19-9 are monitored through CEA or CA-125 but those have other confounders for high readings. But likely better than nothing at all.

    My dad (during his PanCan) made CA19-9 that measured in the millions, while my all-time high was 59. While it may “run in the family”, don’t count on it.
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - IMRT+Xeloda
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2019 - NED
    Mar 2013-present - NCT01088789
    Jun 2019- NCT03805919
    @pancanology

  8. #8
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    Thanks for the replies, all. After much reading, I am somewhat more knowledgeable and recognize that CA 19-9 levels are just markers. Still, she is a long ways from normal levels. I think I am looking for hope in the face of hopelessness. Too much Google searching has pretty much wiped me of that.

  9. #9
    Super Moderator Top User ddessert's Avatar
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    If you look for survivor stories in places like Let's Win PC or PanCan.org, you can find quite a few successes that you might gain hope and learn from.
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - IMRT+Xeloda
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2019 - NED
    Mar 2013-present - NCT01088789
    Jun 2019- NCT03805919
    @pancanology

 

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