One thing you can expect is for things to be different than before pancreatic cancer! I used to cook mostly chicken and fish. Chocolate was a must in my life. I had been treated with an antibiotic for a sinus infection a couple of weeks before my diagnosis, so I attributed my diarrhea to the antibiotic. I developed jaundice and the CT showed the tumor. I had blockage of the bile duct and had a stent and a biopsy. In addition to blockage of the bile ducts, there was blockage of pancreatic ducts and the pancreas appeared atrophic (smaller than normal). I asked the GI who placed the stent about pancreatic insufficiency and he wasn't sure. It was the oncologist who subsequently saw me who first prescribed the Creon. I initially lost weight, from usual weight of 145 to 120. I was referred by my second opinion oncologist at MSKCC to a specialty dietician. Having a knowledgeable hepatobiliary dietician has been incredibly helpful to me.

I was quite reluctant to take Creon and started with just 12,000 units. As the dose was increased, I started having formed stools and my appetite returned, however my tastes changed. I acquired a taste for beef. Chocolate had no appeal. After chemo started, I would feel hungry but didn't have a taste for food. I ate because I knew I needed to. I also couldn't stand cold food. My dietician worked with me on increasing the dose of Creon. I gradually had fewer symptoms of gas, frequent bowel movements, but was still losing weight gradually. I got down to as low as 106 lb. Fats were difficult for me. Butter definitely out! An egg roll resulted in 24 hours of misery. Trial and error. It's hard to get enough calories in without the fats. Coconut oil, olive oil, seem best tolerated. The dietician suggested nut butters. These seemed fine. It wasn't until I got up to taking two of the 36,000 units of Creon about three weeks before the Whipple that my gut symptoms were under control. Not needing a trip to the bathroom an hour after eating, stools stopped being yellow and floating. and my weight was up to 110. My cancer responded to the chemo with oxaliplatin and 5-FU and I went from being borderline resectable to resectable and had the Whipple's June 21st.

After the Whipple, I went down to 103 lb and recovery has been slow. It is hard to eat every 3-4 hours. Can't go by appetite, need to keep an eye on the clock. At nine weeks, I am able to eat more at one time, and I am going 3-4 hours between eating, sometimes 5 hours if something comes up where I am not able to eat within 4 hours. If I go to long and get hungry, I can't eat enough to really satisfy appetite. I am back to 110 lb and feel stronger.

Amylase needed for digestion of complex carbohydrates is found in saliva. I find that I can eat something like an apple or other fruit which is pretty much pure carbohydrate without Creon. I also found I could eat Twizzlers without Creon so I take them with me when I am away from home. My dosing of Creon hasn't increased since surgery, but I take it more often. Since I fill up easily and need to eat high calorie foods, I cut out the salads and most fresh vegetables. I have been eating a lot of fresh fruits.

I believe that Creon saved my life. Certainly has improved the quality of my life. I can have a more normal social life. I am more comfortable in being away from home. Others on this forum have reported that the non prescription natural pancreatic enzymes have been beneficial for them. You have to listen carefully to your body and try and accommodate changes in appetite and gut symptoms and changes in your taste as you proceed with treatment. I wish I had taken higher doses of Creon earlier on. I might have been at a safer weight going into surgery. I think being underweight slowed down recovery from surgery. I would like to get my weight up to around 120 lb, gives me more of a margin of safety.

My great discovery is that walnut butter is amazingly tasty! I also like almond butter and Nutella. Cashew butter not any better than almond butter and more expensive. Haven't tried with the macadamia nut butter I bought yet. Peanut butter not particularly appealing but I might need to try with some different kinds.

Every one is different, but many people have dietary issues and gut symptoms as one of the more difficult aspects of the pancreatic cancer experience. and it seems no easy answers. If you try with pancreatic enzymes and it isn't helpful, you can always stop. Trust yourself.