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Thread: Pancreatic Enzyme Insufficiency (Video)

  1. #1
    Super Moderator Top User ddessert's Avatar
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    Pancreatic Enzyme Insufficiency (Video)

    This is an excellent video on pancreatic enzyme supplements often needed by pancreatic cancer patients due to disease or resection.

    https://youtu.be/DpZXhVUgvnI
    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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    Thank you for the video.

    Do you or anyone else know if enzyme supplements can be taken while on chemo (pre surgery), specifically FOLFIRINOX? Does chemo contribute to weight loss? Will the enzymes help his body better absorb nutrients?

    My father is on his third round of chemo and losing a lot of weight. He is eating a lot of healthy calorie packed food, but just can't keep the weight on. He has mild bloating and cramps as well as gas. A few years ago, he weighed around 160. At time of diagnosis he was 140. After two rounds of chemo he has dropped to 130. His natural healthy weight is probably between 150-160.

    Unfortunately I wasn't able to attend his latest infusion and talk with the doctor to ask this question. The only thing my father said was that the doctor told him to up his calorie intake to 3,000 calories per day, no mention of taking enzymes. Eating more just doesn't seem feasible for him as he is eating a lot.
    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
    Super Moderator Top User ddessert's Avatar
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    These enzymes are compatible with every treatment I know of.
    Yes, chemo contributes to weight loss through nausea and loss of appetite.
    Yes, when taken properly these enzymes will help break down proteins, fats, and carbohydrates to they can be absorbed through your GI tract.
    Many doctors seem to be unconcerned with enzyme supplements. The video does talk about two tests that can verify whether enzymes are needed. However, most prescribing oncologists will just go ahead and give them without testing as they are relatively benign in the digestive tract.
    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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    Hi David,

    May I ask you: what about normal-colored, dense, without visible oil, but floats 70% of the time? Does it indicate a need for a higher dose of Creon?

    It has been about one month since Mom's last chemo, and her appetite has come back. She takes 2 10,000 creon for big meals and 1 10,000 creon for snacks. So, a total of 8-10 creons a day. For her, a typical meal is about 2/3 of a lunch portion in a typical American Chinese restaurant.

    Unfortunately she is still not gaining weight.

    Sometimes I wonder, is it the Creon, or is it because some of the gastrics were removed during Whipple.

    Thanks for your inisghts.

    John

  5. #5
    Super Moderator Top User ddessert's Avatar
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    Here is a Creon dosing calculator provided by the manufacturer. It calculates some rather large doses and ranges but their minimum is likely larger than what she’s currently taking (depends on current weight).

    https://www.creon.com/hcp/dosing-calculator

    When the color is pale/whitish, that usually points to a blocked bile duct from the liver, not a lack of pancreatic enzymes.

    Floating is a sign of undigested fats and it could vary based on what she’s been eating with a fat-free meal not floating at all. The floating ones may also have a yellowish color indicating the undigested fats passing all the way through.

    I also think that the way we take Creon may vary based on things like prior surgery (Whipple or gastric bypass), other medications (such as PPI’s), In addition to what we’re eating. But it should always start before the meal (how long before is one variant) with extra ones during larger meals. Creon after a meal may be wasted as it needs to be inside the food to digest it.

    A person can have all the enzymes in the world and still lose weight with this disease (and cancer, in general). Don’t focus on a single cause for weight loss, but rather try to enable the best outcome possible by eliminating the obstacles to success.
    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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    Hi David,

    Thanks for the info and the link.

    Mom's weight is about 100lbs, down from 120lbs before diagnosis.

    She did not have a pancreatectomy, only a Whipple, so based on her weight, she needs about 24,000 units. So perhaps she needs to increase to 3 tablets.

    Aside, based on the info from the website, Creon comes in 3k, 6k, 12k, 24k lipase units. But since I don't live in the States (based in Singapore), here Creon only comes in one dose: 10,000 150mg. I have confirmed this information with my Doctor. I supose this 10,000 unit is equal to the 12,000 unit divided by 1.2?

    Creon gets quite pricey once you start to take it much more often.

    Thanks too for your wise words Dave.

    John
    Last edited by johndoe60; 12-05-2019 at 01:25 AM. Reason: Adding info

  7. #7
    My wife is taking 24,000 Lipase Creon tablets. She takes 2 before a meal (3 if a heavy or fatty meal). She takes one pill before a snack.

    Quoting my wife: "These things are like a gift from heaven".
    57 year old Wife's PC:
    4-19 - Constipation. "You're old, take Miralax".
    7-14-19 - Constipation with pain below the right rib cage. Again "Your old, take Miralax". I say BS and go to Urgent Care.
    7-15-19 - Urgent Care says "BS" on "Miralax" & orders abdominal CT scan.
    7-19-19 - Abd CT Scan reveals 6.0 x 4.9 cm mass in the pancreatic head which encases the superior mesenteric vein.
    7-26-19 - Biopsy confirms adenocarcinoma
    8-8-19 - Start FOLFIRINOX once every two weeks.
    9-20-19 - End first four rounds of FOLFIRINOX.
    9-27-19 - CT scan reveals tumor reduced to 4.6 x 3.2 cm (50% reduction), but now evidence of malignancy in the lymph nodes.
    10-4-19 - Onc suggests gemcitabine nab-paclitaxel due to lymph node increase/high CA19-9 obtained at 1st & 2nd treatments. NO CA19-9 obtained at 3rd & 4th treatments. ONLY one CA19-9 post treatment initiation. I demand CA19-9 test before switchig.
    10-5-19 - CA19-9 test ~ 10 weeks after treat start is 9700. Staying with Folfirinox

  8. #8
    Super Moderator Top User ddessert's Avatar
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    John,

    Our doses in the USA are based on the lipase units in USP, not by weight. There are many manufacturers of pancrelipase (the generic name) worldwide, such as pancreaze, pertzye, ultrase, viokace, zenpep, and zymase - that I know of. I'm not sure if the units of measurement are consistent. But check the bottle for units on the 10,000 lipase and if it is USP, then you're correct.

    Creon is quite pricey. If you find that this works, there are some strategies to reduce the quantity needed.

    For instance, if the pancreas is making some, but just not enough enzymes to digest larger meals, then doing smaller but more frequent meals may allow the pancreas to keep up. For very small meals, no pills may be required.

    But first see if it help the problem before tweaking down on dosages.
    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

  9. #9
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    Dave,

    I just did my research and found out that the number 10,000 corresponds to 10,000 Ph Eur Units which is equivalent to 12,000 USP. So this 10,000 British version of Creon is equal to American's 12,000 Creon.

    For now we'll bump the dosage to 36k and see if she puts on any weight. (At least for the moment she is not losing weight.)

    RamblinWreck, what is the weight of your wife?

 

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