Chocolate &/or sugar cravings Stage IV Pancreatic AdenenoCA

I don't take Creon because I haven't had the Whipple; I don't qualify due to the way my main tumor wraps around blood vessels. However, I've also tended toward starchy and sweet foods, although in the last couple of months I've managed to work in more meat, fruit and veggies. To be honest, I don't worry about it. Pancan is a wasting disease, and calories are necessary. I simply decided not to worry much about diet. It all works out over time.

FYI, Creon is also prescribed when E P I is present in the setting of palliative care with no other treatment (surgery or radiation) planned.
I should also explain that I do worry about it since I am still hoping to find some strategy (other than just giving up and dying) that reduces all the associated discomfort. I'm not a fan of pharmaceutical interventions since in my experience the situation often snowballs into having to take one drug to counteract the effects of another drug, and maybe yet another drug to deal with the side effects of one or both of the other drugs, etc.

Sugar-a very interesting discussion point with cancer! Doctors say there is no proof that sugar feeds cancer-although so many believe differently. Probably due to the way glucose appears as uptake on PET scans.
Dark chocolate has been immensely helpful to me in keeping my platelets up prior to chemo. It comes with raspberry, salted caramel, etc!
If your craving is for flour based products like cakes/cookies could it be your body wanting more carbs?
Sometimes I give in to my craving and have ice cream (and pay later!) or I just brush my teeth for awhile:)

Seriously, would love to know what others think about sugar.

Thanks for your reply.
Maybe luckily (?) I don't have any craving for flour-based products. I also do seem to still be able to tolerate Bays sourdough English muffins. We take these along (with the inevitable Creon) as a snack when I have to travel to an appointment since I don't want to risk becoming lightheaded. I've eaten these English muffins for years in modest quantities (so not every day) since sourdough is supposed to be lower GI than most regular flour-based foodstuffs. Even more interestingly, locally made fresh sourdough bread, even though it tasted wonderful, was not well tolerated.
I also observed some time ago that the foods I now seem to be most intolerant of are relatively high in sucrose. Consequently I have been placing more emphasis on Monash University's concept of glycemic index / load.
Perhaps the Islets of Langerhans in my pancreas are involved after all in whatever process is creating the E P I.

In a segue, I've mention my discovery that I love a salad my husband fixes using a TBSP or 2 of very high quality olive oil to dress organic produce (one or more varieties of lettuce, parsley sprigs, little chunks of celery and a few thin slices of cucumber. It has even made me like tuna! I also generally add a dash of lite salt (my doc wants me to avoid too much sodium since I also have "Chemo Feet" and/or "Venous Insufficiency" following a course of gemcitabine-abraxane Chemo).

Hope some of this gives others some helpful suggestions for what ails them.

I use Stevia based Cinnamon or Root Beer sweetner in a glass of water and it satisfies my cravings for the most part. It is organic and no carb. Also I find that the more carbs that I eat during the day, the more craving for sugar I get at night. If you can keep your carb intake low and your blood glucose down you will have less cravings - AFTER the sugar eating bacteria in your gut is gone.

Good luck!

Thank you beths77.
I have had my symptoms exacerbated by stevia, so that is not an option for me; it has also made me very wary of using any of the sweet sugar-alcohol substitutes.
I've also read that in preparation for time-restricted-eating (AKA intermittent Fasting), cravings can be eliminated or much reduced by following a low carb diet for 2-3 weeks first.
Interesting too that you attribute your sugar cravings to eating *more* carbs during the day, while I am consciously trying to get my carb intake as low as possible during the day given the lack of carb-handling enzymes in E P I or provided by Creon (I'm taking the prescription strength).
Not sure whether I still have sugar eating bacteria in my gut. Back before I was diagnosed, but had had a GI bleed, I was treated with an antibiotic that should have wiped out ALL my gut flora, helpful as well as pathogenic. That is, of course, a set-up for SIBO.
I am now exploring suggestions for repairing the gut microbiome. It is not as simple as just taking an OTC probiotic, as I learned some months ago, when the result was an episode of explosive diarrhea so bad that I could not even make the 20 feet from bed to bathroom.
I am also currently trying to learn as much as I can about mitochondrial function, its repair and maintenance, since many roads seem to wind up there at this point in our collective knowledge...

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.

Thank you for your detailed reply. Many of your suggestions sound mighty appetizing.
Unfortunately, I am coming to the belated recognition of what an extremely damaging role in my health history glyphosate has had and is probably still playing. Where we live we are surrounded by fields where Roundup-Ready crops are grown. One memorable day I could see a cloud of herbicide being sprayed by a local feed store operative being blown across the fields and over to the organic farm just 2 doors down the road.
Our knowledge of how to de-toxify our bodies from this exposure is in its infancy, consisting mainly of the realization that the chance of continuing to build up this toxic chemical in our bodies is reduced by eating organic foodstuffs. Not so much on how to de-toxify.
I'm just listening to a video interview of the MIT scientist who has done the most research into glyphosate, in which she points out that 2 countries in the world have actually banned the use of the product in their countries (Sri Lanka was one, and perhaps the other was El Salvador).
It's also worth remembering that glyphosate is also used on cotton, so I'm glad I now have a few clothing items nice-enough looking that I can wear out in public. This scientist (S Seneff) began her work into the effects of this product Monsanto (now owned by Bayer) has insisted is safe, by looking into the epidemic of autism.

I’ve been taking Creon for the past 5 years. It has vastly improved my quality of life. I gave up using white refined sugar when I was 10 years old. No adding of sugar in foods or drinks and limiting desserts. I was always a healthy eater since my teenage years. After surviving stage IV pancreatic cancer 11 years, I eat chocolate (fine Swiss chocolates having lived in Switzerland and travel there frequently) as well as desserts such as chocolate later cake. My blood glucose level post-Whipple surgery has never been better. I don’t deprive my body when it craves something sweet. I do try to satisfy my cravings with fresh fruits first but enjoy my desserts in moderation.

Do you have a naturopathic doctor? I would strongly recommend finding one. They can significantly help with rebuilding your gut and detoxing. As for my feeling about sugar, I am personally convinced that Pancreatic cancer feeds on sugar as its #1 choice of food. We work on avoiding spikes in blood glucose as a result - similar to if we had diabetes. Have you heard of the Warburg effect? I would recommend reading Jane McClelland's book "How to Starve Cancer". In it you will learn about how to use off-label low toxicity prescription drugs as an adjunct treatment to Standard of Care oncology. It teaches you how cancer feeds itself. Pancreatic cancer prefers eating sugar and then glutamine. The objective that this book points out is to stop cancer cell's ability to process its food sources and thus weaken it and ultimately starve it to death. Jane McClelland is an over 20 year breast cancer survivor who used the methods she outlines in the book to overcome Stage 4 breast cancer and blood cancer. I hope you have great success in your quest to overcome this disease.

Beth