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Thread: Mom diagnosed

  1. #1
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    Mom diagnosed

    Hi, I'm Paul from Chile, and I've been reading the threads in this forum for a while, and i must say that they hace been very useful. The thing is that muy mom (57 yo very active non smoking woman) has been diagnosed with pancreatic adenocarcinoma of tail and body, with the superior mesenteric artery surrounded 270 degrees by the tumour. Initial diagnostic was made after a rutine CT scan, and a PET scan reveled also very small tumours in the peritoneal cavity. CA 19-9 was at 1500 at the time of diagnosis.
    Not a good diagnostic.
    You all know better than me that at this stage it's a unoperable and virtually uncurable disease, but we still have hope and we are confident in my mothers overall good health and performance.
    This sunday se just finished 3rd round of FOLFIRINOX. She Is taking it well, but it really knock her down the first 2 days after the pump is removed. CA 19-9 before 3rd round has rosen incredibly! Is that normal? Our oncologist said that it's a normal reaction. He also said that they will do another scan after the 6th round to see any advance. Is that the usual thing to do? We have absolute trust in our oncologist, I just need to know that we are doing things right.
    Blood test before chemo have been pretty good except for the red blood cells count. What can we do to get them up?

  2. #2
    Hi. I'm sorry about your mother's diagnosis. I'm not sure what to do about red blood call count, foods with iron? My problem has been with white blood count. I know that FOLFIRINOX can be very effective, and I have heard of the CA 19-9 going up at first, as cancer cells are dying.
    February 2016- diagnosed with PC
    March 2016- inoperable due to arteries, also liver mets suspected
    March 2016-January 2017 -Gemzar/Abraxane
    February 2017 surgery-PC tumour and liver mets removed at same time
    July 2018 Back on Gemzar/Abraxane due to rising CA 19-9. Scans were clear.
    January 2019 Tried FOLFIRINOX after G/A became ineffective. FFX doesn't work. CA 19-9 rising
    February 2019 two small tumors appear on liver
    May 2019 - CA 19-9 skyrocketing. Started IMRT radiation treatment.
    August 2019 MRI done. No Evidence of Disease (NED). CA 19-9 dropped significantly. Still not normal range.

  3. #3
    Super Moderator Top User ddessert's Avatar
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    Paul, sorry that your mom and family have to go through this.

    It is hard to know whether that rise in CA19-9 is a good or bad thing. That’s just something we have to learn over time. You might find my video on CA19-9 useful.

    If you mean fatigue is knocking her down, some people get doses of steroids to help with that. Sometimes the steroids are too strong and patients feel great, but then crash after the steroids wear off (perhaps this is your mom’s experience). Others get to much and cannot sleep. It may require tweaking the dose.

    Peritoneal tumors can be very hard to treat with chemotherapy. Chemo goes into the bloodstream and there is no direct blood supply into the peritoneum so tumors there can go almost untreated.

    Red blood cell counts are expected to decrease and the best solution is more time between treatments to allow them to recover. Patients will sometimes opt for transfusions to replenish red blood cells, but that carries its own risks. There are also injections of erythropoietin to help out. The lack of red blood cells may also contribute to her fatigue.
    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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