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Creon - am I taking too much or too little?

Posted by stillaround @stillaround, Sep 27, 2025

Hi - pancreatic cancer person here. (Surgery 14 years ago removed tail, recurrence on head a year ago, currently in remission after treatment including hi-dose radiation.) Started Creon several weeks ago. I THINK I am taking enough as I am finally putting weight on, stools are proper color etc. But I am quite bloated with distended belly and a bit constipated. If everything else is good could this mean I'm not taking enough? Or does constipation with normal stools mean I'm already taking too much?

I take 36,000 with my smallish calorie-dense meals, my weight is 108. The PERT calculator indicates I need closer to 48,000 at breakfast but other meals I'm in range.

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whipple123 | @whipple123 | Aug 14 9:55am
In reply to @stageivsurvivor "@whipple123 To optimize the dosage of Creon specific to the amount of carbohydrates, protein and fats..." + (show)
Profile picture for stageivsurvivor @stageivsurvivor

@whipple123 To optimize the dosage of Creon specific to the amount of carbohydrates, protein and fats in the meal, use the on-line dosing calculator at: pertcalculator.org

Take the first capsule at the start of the meal with food. Take additional capsules as calculated staggered throughout the meal.

If you et high fiber vegetables and legumes, pancrealipase does not contain the enzyme alpha-d-galactosidase needed to digest these oligosacchride-containing foods. The OTC product BEANO is the enzyme alpha-d-galactosidase and will digest high-fiber foods without the formation of gas or bloating.

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@stageivsurvivor
How many Beano should I take?
Vegetarian

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valerina30 | @valerina30 | 2 days ago
In reply to @tomrennie "@valerina30 Good luck with the results of the cat scan. Any idea on when you might..." + (show)
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@valerina30 Good luck with the results of the cat scan. Any idea on when you might get them?

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@tomrennie well finished the optune pax had cat scan. Cancer spread some. I have couple lesions in my stomach now. Waiting on the new cancer pill now will you be trying it

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Turkey, Volunteer Mentor | @tomrennie | 2 days ago
In reply to @valerina30 "@tomrennie well finished the optune pax had cat scan. Cancer spread some. I have couple lesions..." + (show)
Profile picture for valerina30 @valerina30

@tomrennie well finished the optune pax had cat scan. Cancer spread some. I have couple lesions in my stomach now. Waiting on the new cancer pill now will you be trying it

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@valerina30 Sorry to hear about the new stomach lesions. Has your oncologist already prescribed the daraxonrasib? Since its FDA approval on 8/26/2026, I wonder if it will be easier to get than before the approval. Did your oncologist suggest a time table on when you might get it? I will not be trying it. My understanding is that it works only for RAS driven tumors. I don't have that mutation. I also have neuroendocrine carcinomas and not adenocarcinomas. My chemo regimen is completely different.

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valerina30 | @valerina30 | 2 days ago

Hi yes my doctor ordered before the actual approval day but think he had to do it again, originally around 2 weeks but waiting on insurance now. So many people want this. I don’t have mutations but I did run out of options and since it spread some. We will see.

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Turkey, Volunteer Mentor | @tomrennie | 2 days ago
In reply to @valerina30 "Hi yes my doctor ordered before the actual approval day but think he had to do..." + (show)
Profile picture for valerina30 @valerina30

Hi yes my doctor ordered before the actual approval day but think he had to do it again, originally around 2 weeks but waiting on insurance now. So many people want this. I don’t have mutations but I did run out of options and since it spread some. We will see.

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@valerina30 Sorry to hear that. Good luck on your request. Please let me know how it goes.

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