Is anyone taking Zenpep rather than Creon? If so what foods work?
I do not have diarrhea, but I have many bowel movements as my digestive system doesn't seem to get the nutrients needed. I go uup and down about 4 pounds every day, but am stuck not moving ahead. I don't have diabetes, but do not eat sugar, salt or sodium. I eat about 1,500 to 1,600+ calories a day, but they all go down the toilet. I'm working with Mayo on this, but so far nothing seems to work. I take 40,000 unitswith my three meals and 10,000 units with each snack. I need to gain 13 pounds and don't know how to regulate the water intake as well. Anyone who has any information would be greatly appreciated! I'm 6 months from surgery and they got it all. I have no cancer. Thank you for reading this!
Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.
Intestinal issues really have limited my enjoyment of going out and socializing or eating away from home, so not to be underestimated in terms of quality of life.
Thanks for all the information. Every day is a challenge!, especially difficult during the week of a round of chemo. Never sure if it’s the enzymes or chemo that causes so many weight challenges.
I couldn’t agree more! Can’t even imagine going out for dinner now. It’s so hard for him to know what might taste good let alone agree with his digestion. Trying to take it one day at a time and coming up with new recipes to try and spark his appetite. Wishing you better days ahead.
I understand. Our lives have been turned upside down. I hear it does get better. I still am wary about COVID. That has kept me housebound. I’m tired of wearing maternity panties, but I’m glad I have them as I’ve been caught unaware.
For me it’s been the enzymes. My weight never changed during chemo, plus I was told to eat anything prior to surgery. Can’t do that now!
Thank you for the good wishes and everyone that has responded to me. Makes me feel as I’m still connected to life on this planet.
I have been housebound a bit, having to eat and wait an hour before I go out and being very aware of where the bathrooms are. I don't like to eat much if I am away from home. I have surgery scheduled June 21st. At least I know that I need 72,000 Creon before meals and that has improved things substantially and my appetite is better. I am hoping this will remain the same after surgery, it took months to get the dose high enough, finally about 3-4 weeks ago with the help of the hepatobiliary dietician at MSKCC.
All the Rx pancrealipase products are the same as far as the basic ingredients go of amylase, lipase and protease. But because of differences in manufacturing processes of how the enzymes are extracted from porcine pancreas, concentrated, purified, and enteric coatings used, each one will perform differently within the same patient. One’s body chemistry differs as well, so this is why it is worth trying different brands to see which one performs best. In the product insert for Creon under the heading “Dosage and Administration” it is stated: “CREON is not interchangeable with any other pancrealipase product (2.1)
The (2.1) refers to the specific section of the product insert regarding administration. It discusses that it requires being optimized by the patient for the specific meal based on food quantity and particularly fat content. There are two ways to do this: keeping a daily food journal noting date/time, meal type, quantities of each food item and particularly fat content. After consumption, noting any GI symptoms related to EPI. If noting noted, the number of capsules was sufficient. If there is excessive gas, changes in stool, steatorrhea, light yellow or light orange color to stool that appears oily and floats with a greasy sheen on the toilet water, it indicated undigested fat. Either eliminate the excess fat from the diet or increase the number of capsules. What is initially prescribed in amount to take is just a “ball-park” figure. One needs to optimize.
An easier way to optimize is going to the site https://digestthis.ca. It is an on-line dosing calculator developed by the Canadian Digestive Health Association in collaboration with Craig’s Cause Pancreatic Cancer Society of Canada. It eliminates most of the trial and error. It works with all the Rx brands of pancrealipase (Creon, Zenpep, Viokace, Pertzye and Pancreaze.
A little more about the misconception that enzyme brands are all identical. During the years I worked in the clinical research lab, I was exposed to enzymology. I had to produce an enzyme from an animal source for an experiment I repeatedly did as part of a long-term clinical investigation. It was a tedious process requiring extraction, purification by dialysis and concentration using a lyophilization process. In looking to find a more efficient method, I was made aware of other processes and gave those a try. I then had to compare the new preparation method with the one currently used. So in addition to quality control steps and making sure the enzyme activity was relatively the same, the other production methods did not work as well. While they were easier for producing the needed enzyme, the enzyme activity was not as efficient as the original.
So when someone says enzymes are enzymes and no need to switch….think twice. It doesn’t hurt to try and physicians and registered dietitians have access to physician samples they can provide to do an evaluation before the prescription is changed to see if an alternate brand performs better.
Wow, a lot of information to digest. I have to reread it again carefully and want to discuss it with my doctor.
Thank you for taking the time and effort to explain the differences and similarities.
I do keep a log of everything I eat, amount, date, time. I also track my bowel movements so I know what foods work and those that produce a problem. The working ones, though, don’t produce weight gain. Mayo is working on this with me. The next test is. Breath test, not sure exactly what they are looking for. Maybe an answer .
Good luck on your surgery. You are lucky to have found the right dosage. Mine is iffy, works 95% of the time, but the other 5% bring surprises.