Expert help with proper dosing of Zenpep enzymes after Whipple

I’m sorry to hear that your husband is experiencing those issues. I was diagnosed with pancreatic cancer in March 2023 and had a Whipple in September of 2023, after 8 rounds of Folfirinox and followed by four more. I had been on enzymes prior to the surgery. My oncology clinic has nutritionists on staff and it was she who requested the stool sample that led to the enzyme script. I’ve used Creon & am currently taking Zenpep.

I don’t know the specifics of your situation, What are your husband’s symptoms? Has he seen a nutritionist? How long has it been since the surgery? What are the doses he is taking?

It has been my experience as well that there is a lack of knowledge in this area and it seems like trial-and-error is the norm. That said, it is critically important for someone with pancreatic cancer to get needed energy and nutrients from what they consume. One can’t heal without it.

At this point, I think a consultation with a nutritionist who has experience working with pancreatic cancer would be the next step. I found some useful information at the Pancreatic Cancer Action Network.

Hang in there. I hope you and your husband can get resolution on this soon.

Thank you for sharing your story. My husband was diagnosed with Stage 1B, as well, at the head of the pancreas in Jan.,23 and had the Whipple surgery that Feb.
He followed with 10 rounds of Folfirinox which ended I at the end of September. He is currently taking Zenpep 40,000. He takes between 5/6 capsules with meals and 2/3 with snacks. Are you taking a similar dosage? He still has issues and wonders if that part of his life will ever go back to “normal”. We have met with a Sloan nutritionist, but it’s more of just increase as needed. Will be reaching out to them again this coming week as well as his Whipple surgeon staff to see if they know of some experts in the enzyme area. He is also doing bloodwork and scans at 3 month intervals. I wish you continued progress on your journey. It is very hard to put the worry aside in between re-checks. Thanks for all your help.

Similar to your husband, I was diagnosed stage 1B with a tumor in the head of the pancreas. I take 3 40,000 Zenpep with meals and 1 with snacks. I have not had any significant digestive issues, thank goodness, and I have increased and decreased my dosage when I thought it necessary. Zenpep materials/literature state a maximum dosage, but I am far from it at this point.

I am almost 6 months post-surgery and my digestive system seems to be just getting back to normal. By that I mean there’s very little undigested material in my stools and my weight is going up.

Everyone reacts differently to the cancer and the treatments. I am sorry your husband is having issues with digestion. That said, it sounds like you’re taking the necessary steps. Persistence and patience are important. All the best.

Sounds to me like his surgeon knew exactly what to do. I would suggest not doing anything first.
I had my Whipple operation in 2013 and have not had to take anything other than over-the-counter laxatives over the years.

Has anyone seen any articles or experienced Zenpep as the primary cause of diarrhea?

Very few times that I’ve had diarrhea. I just take over-the-counter medication to stop that and it works. My philosophy is to keep it as simple as possible stay away from prescribe medication’s, if if possible.!!

I agree…. tried a number of OTC meds, but haven’t found anything that helped so far. Still working on what works best. I know what works for others may not work for me…. everyone’s body and condition are different.
Thank you for your response.

There is an on-line dosing calculator at https://digestthis.ca that makes it easier to optimize the dose of pancrealipase based on the meal type, ingredients and quantity, especially if the meal contains dietary fat. The dosing calculator contains several types of pancrealipase but I haven’t checked if the most recent update contains Zenpep as a choice. If not, choose Crean and the dosage closest to Zenpep for it to do the calculation. It will be reasonably close and you may need to do some tweaking of dosage. Keeping a daily food journal and noting GI tract symptoms 24-40 hours after ingesting a meal will help correlate dosage and effect.

Although pancrealipase is all sourced from porcine pancreas, they differ in performance due to how the enzymes are extracted, concentrated, purified, lyophilized, enteric coating on the microspheres and the gelatin capsule composition. Adding to that is variations in body chemistry between individuals and whether a Proton Pump Inhibitor (PPI) is being taken. When multiple capsules are required, the first is always taken with food, never on an empty stomach ahead of the meal. Enzymes when activated have a short span of being active. Stagger the taking of additional capsules throughout the meal to ensure adequate coverage of enzymes to food for thorough digestion.

If the desired performance is not achieved after trying to optimize, the manufacturers and Registered Dietitians suggest evaluating another brand as it may perform better as a result of the differences in manufacture and body chemistry of individual patients.

I have been told by my surgeon that I need to get a Whipple due to a Mucinous Cyst on the head of my pancreas that features some worrisome features. I am concerned about the quality of life after Whipple. Has anyone of you needed IV Feeding, problems with diarrhea, nausea and vomiting? How long did it last? I am glad this is being caught before it turns cancerous, but just want to be prepared for what to expect in recovery. Thank you for your feedback!

I did not have any nausea, vomiting, or diarrhea. I was already on a good dose of Creon due to pancreatic insufficiency. The problem I had was needing to eat frequently. I didn't gain weight until I started eating more often. I was eating small amounts and needed to lie down for a while after eating. It gradually got better. Has taken a while to get back a good level of strength . started driving to the grocery store myself after 8-9 weeks I was able to walk a good distance, but didn't feel confident about driving. My quality of life was OK, I don't feel that I am back to my pre illness levels of energy, but I am able to do the activities I normally did, just not sustaining as long.