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Still losing weight: Does timing of Creon help?

Pancreatic Cancer | Last Active: Jun 13 6:31pm | Replies (32)

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@deanhobart I will do that. Also, I don't take it when I have breakfast or snacks because I feel that I only need it when I go out to eat, you never know how much fat they put in food so I am careful when I go out. I still have 2/3 of my pancreas so I imagine I am producing some enzymes. Will ask my doctor when I see him next week.

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Replies to "@deanhobart I will do that. Also, I don't take it when I have breakfast or snacks..."

@cpblanco I am not a doctor, but everything i have read and watched (including the drug manufacturer) is that if you "need it", you need it for everything that you want to get nutrition for. I made the mistake of thinking like you seem to be, where i thought 'weaning ' myself off of the enzymes would help my body produce more and recover , [similar to how if one takes testosterone supplement your body stops or slows down production since it no longer registers as a insufficiency ].

Not so. If you need it and you don't take it, you eventually become malnourished. By not taking it with breakfast or snacks, you are not really getting any nutrients from them (or just 2/3 of what you need, at best). Maybe all you are getting is fiber and what water they have in them.

CREON has lipase, protease, and amylase, and it comes in a number of strengths, starting with 3,000 USP units of lipase and going up to 36,000 USP. The other 2 enzymes increase proportionally. If prescribed correctly, the dose you need is based on your body weight and amount of fat expected in each meal in relation to how much your body produces. If they haven't done a stool sample to determine, then they probably did the dose for 'average ', which i think starts at 24,000 lipase for avg adult. Even so, you are supposed to then adjust it based on what you are actually eating.

There is a great overview at the UK National Health Service. I don't have the doc I read, but Google 'NHS Creon Dosage ' and there are many results. The Scottish one from sayside was my first result and has incredible details about it with meal examples. The Mayo Clinic might have something. I find UK info more informative because they have a first world healthcare system, and we have an inferior system burdened by cost inefficiencies for insurance and then rationed based on income level.

I know this because as a 6 ft man in Texas at 260 lbs who eats out a lot, I was prescribed 36,000 lipase (2/meal, 1/snack). I coincidentally have a cousin here who was also diagnosed with pancreatic cancer last year, and she was prescribed less (shorter and thinner). It helped immensely during chemo. After 5 months I was in hospital for sepsis because bile duct stent became infected. I brought my creon but they had to prescribe directly. They gave me the starting dose of 3,000 lipase, which i took assuming that they had run tests to find the amount I needed and that maybe i was improvingsince chemowas over. A couple of weeks later when released, they had prescribed the same 3,000 units. During my stay, my taste came back [which I initially thought was because of the smaller dose meaning that I was improving]. Instead I discover it was because my stent was replaced and infection cleared.

Anyway, I continued on the lower dose for a couple of months and then, maybe similar to you, felt that I could help my body more "fully recover " by taking only 1 instead of 2. I had a checkup saying I was generally improving, but they didn't actually test my stool. 3 months later my checkup showed continued improvement, so I mistakenly thought it was helped by decreased creon. I then stopped taking it. At first I felt fine but over the next month I grew weaker and weaker. I was basically malnurishing myself. When I went to doc, they said I should have told them because creon doesn't work that way. You need it or you don't. Turns out that the hospital had probably made an error by picking 3,000, which shows up first, instead of 36,000 I had at the time, and everyone later just assumed hospital did it on purpose based on testing. Because I was then at 180 lbs, my dose was changed to 24,000 [2/m, 1/s] and I dramatically improved over the next week. At this point i will have a stool sample test during next 3 to 6 months to evaluate my natural enzyme production and adjust accordingly. Coincidentally, my cousin here had the Whipple (i could not due to other reasons) , and she was told she will need them the rest of her life but that the dose most likely will decrease over time.

Hope this info helps. Your enzyme dose is specific to your body in conjunction with what you eat and how much.

@cpblanco one additional comment about creon. If you are eating protein or fat in your snack, I then suggest taking at least 1 pill. For example I drink 1 cup of coffee with 1 cup 30mg protein meal replacement type drink in coffee flavor or, say latte flavor, and I take 1 pill because of protein. If eating toast with butter, maybe peanut butter, i take 1 pill. I only take with fruit snack if large amount, and typicallydont take if eating chocolate bar piece or 1 cookie with tea as a snack.