Still losing weight: Does timing of Creon help?

@shhill
Hi! I am new to this group as well, and I'm finding it very helpful to hear from others who have similar issues. My husband has pancreatic cancer and has had four months of chemo and the Whipple in January, and then two more months of chemo. His starting weight was approximately 182, and he has now dropped to 151. He was on Creon 24000 units for a few weeks, and the oncologist had him stop it so he could take a test to see if his pancreas was secreting enzymes. We went to the oncologist today and my husband is going back on Creon with 36,000 units. He will take two pills at each of three meals and one pill at each of two snacks each day. The oncologist said he should not expect to get back to the weight he was originally, but to have a goal of 165. I would encourage you to check and see if your husband should be taking a higher level of Creon and two pills with meals instead of just one pill. Also, I think it is very important for him to get lots of protein. I make my husband smoothies and load them up with protein foods such as yogurt, the protein drink, and protein powder. He eats a lot of cheese omelets for breakfast, and I found a recipe for protein blueberry muffins and one for protein pancakes. If he has a substantial breakfast, he seems to have a better day. I have become quite the nag, but I want him to eat five times a day like his doctor said he should do. He also is eating more potatoes and ice cream. Without the pancreatic enzymes, he won't be able to gain weight, so Creon will be necessary, probably for the rest of his life. I will let you know if he puts on weight after he's been on the increased units for a few weeks. His doctor said he should gain about one-half a pound per week with this higher dose of Creon. Hope our experience and others will help you in your journey. Knowing others care has really helped us. All the best!

I have not heard about taking Creon after eating. From everything I have read, you should take it before you eat!

@shhill, just checking in. How are you doing? How is your husband doing?

@dpaynebhs123. Creon must be taken WHEN you eat. Not before, not after. You take it with first couple of bites of food. It is a digestive enzyme that goes with the food into the stomach and then activates when it gets with the food in your upper intestine. It mimics the production of enzymes you would normally produce when you start salivating for food. For a longer meal, you can spread the 2 pills out , and for a larger and/or fatter meal add a pill towards the end, say maybe for the dessert. Otherwise, it is wasted if it leaves your stomach too soon or too late.

I have a friend that kept losing weight and after many tests they found that his biliary conducts were blocked. Had stents put in and is finally gaining a little weight. As for Creon, after taking it for 4 years, the best way it has worked for me is having a few bites, taking one pill, then finish the meal and take another pill.

@cpblanco try taking final pill 2 to 3 bites before last bite. That allows it to get into your stomach easier. Taking afterwards might have it actually lin g er a bit on the way to your stomach and not be as effective because of timing of when the food from stomach moves to intestine for digestion. That's why some pills recommend a full glass of water to push the pill to the stomach.

@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.

@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.

@deanhobart thank you so much for all this information. I will consult with my gastroenterologist and report back here. I have an appointment next Friday. I am sure my pancreas is still producing some enzymes because supposedly the enzymes are mostly produced by the head of the pancreas and I still have the head and the body, only the tail was removed. But I will still ask the doctor. Like I said, I don't take the Creon on a regular basis, and when I do, it is two 25,000 unit capsules. Thank you again.