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Color me confused (2 questions)
Background: diagnosis = metastatic adenocarcinoma of the pancreas; Now receiving modified "rescue" Folfurinox regimen; following a course of G-A that had to be adjusted in dosage and timing.
Question 1
Has anyone here who started with pancreatic exocrine insufficiency gone on to develop problems with producing enough insulin? I ask since I have been avoiding anything “sweet” for fear of having to add diabetes management to my current unsatisfactory results with Creon.
I am still having significant bouts of bloating and gasiness, long after I should have adjusted to Creon. It was so bad last night that I could not find a comfortable position to sleep.
From reading posts here, it sounds as if I need adjustment in dosage, &/or brand of “Creon” I’m taking.
Question 2
My husband believes that to relieve the metallic taste in my mouth, I could just have a tiny amount of “sugar.” But as we know, “sugar” takes many different forms. That reminded me of some reading in the past when all I was concerned about was I B S; for instance, I have learned that I cannot tolerate high-fructose corn syrup without developing diarrhea.
Has anyone here any experience with glucose as a sweetener? And if so, what form do/did you use?
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I discovered my diabetes and pancreatic cancer the same week (age 58), and unfortunately, can't really try anything with in-your-face levels of glucose unless I want to listen to my alarm blare all night.
With half a pancreas (post-Whipple), I'm dependent on Creon as well as insulin, and deal with the metal-mouth test from my current chemo (Gemcitabine+Abraxane+Cisplatin) as well as my previous (Folfirinox).
I've found the Powerade (Gatorade) "Zero" drinks a tolerable, sugar-free way to mask that taste. They are sweetened with sucralose (Splenda).
I've also found the Jello puddings (chocolate and Dulce de Leche), sweetened with sucralose and maltitol to be "comfort foods" that mask the taste with a low glycemic impact.
Beware the sugar alcohols in general, though. All of them have risk of "laxative effect," particularly anything with sorbitol (often prescribed as a laxative).
Aside from sucralose, my wife has done some cooking with allulose and gotten good results. It bakes like sugar, and tastes a bit more natural than Splenda.
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2 ReactionsI have had struggles with enzyme treatments as well and the pancreatic team nutritionist has worked with me on different dosages as well as different products. Since Oct ‘22 I went from Creon to ZenPep and have been feeling better. I think working on different dosage levels as well as different versions of enzymes is very helpful.
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1 ReactionTo answer question #1, all pancrealipase brands require they be optimized after being prescribed an initial dose which is based on body mass and eating an average diet consisting. Since diet varies with carbohydrates, fats and protein, patients need to determine the number of capsules based on quantity of food and fat content. Keeping a daily food journal and basically trial and error was how it was done. One recorded meal composition and fats being adjusted, then observing if there were GI symptoms 24-40 hours later as this is the average time it takes food to be digested and excreted.
The process has been made a bit easier with an online dosing calculator at https://digestthis.ca. After registering on the site, enter body mass and brand of lipase, select meal type or snack and then choose the menu items of your meal. The number of capsules will be calculated and they need to be taken staggered throughout the meal with the first capsule immediately before or after the first bite. If after a period of optimization the desired effects are not achieved, the manufacturers as well as registered dietitians suggest trying one of the other brands (Creon, Zenpep, Viokace, Pertzye, Pancreaze
Pancrealipase is not identical between brands and therefore not interchangeable. Each brand needs to be optimized. This is because of differences in manufacturing processes such as enzymes extraction, purification, concentration and enteric coatings used. Each patient’s body chemistry differs slightly as well and why one brand may perform better than another within the same patient or among patients.
If changing brands does not resolve the issues, the possibility exists there can be a co-morbidity. It is not uncommon to develop lactose intolerance or gluten sensitivity (celiac disease). Often patients are unaware this is the cause and remain focused on taking enzymes as the sole cause. These pathologies can be determined by the patient using a process of elimination by excluding those items from the diet and then bringing one back at a time and noting the outcome. A registered dietician can provide assistance in doing a process of elimination. There are more serious pathologies than can occur such as ulcerative colitis, Crohn’s disease, IBD/IBS or small intestinal bacterial overload (SIBO). A consultation with a gastroenterologist can do a diagnostic work-up to rule these pathologies in or out.
A source of excessive gas and bloating can also be due to the consumption of the more difficult vegetables to digest. The ones consisting of complex carbohydrates called oligosaccharides require the enzyme alpha-d-galactosidase to digest them. This enzyme in the form needed is not produced by the pancreas nor is it blended into any pancrealipase product. The OTC product Beano is alpha-d-galactosidase and when taken as directed with meals, proactively prevents gas by efficiently digesting vegetables like cabbage, Brussels sprouts, corn, broccoli, etc. Gas-X uses simethicone to relieve gas. It is a reactive treatment rather than a proactive treatment in preventing as Beano is proactive. Both can be taken together without interactions.
Flatulence
https://flatulencecures.com/vegetables-that-cause-gas/
https://www.beanogas.com/
https://www.gas-x.com/
It is also important to follow recommended dietary suggestions on how to eat post-Whipple. The Pancreatic Cancer Action Network publishes a guide available online as well as printed form sent for free on request-
http://media.pancan.org/pdf/patient-services/booklets/Diet-Nutrition-Booklet-Digital.pdf
HOW TO EAT AFTER WHIPPLE SURGERY
https://liverandpancreassurgeon.com/diet-after-whipple-procedure-surgery/
NY PRESBYTERIAN HOSPITAL- Post Whipple Diet suggestions
https://www.nyp.org/documents/nutrition/resources/Client-Ed-Whipple-Surgery-Nutrition-Therapy.pdf&ved=2ahUKEwjOgIHfior-AhW61DgGHZw8DLUQFnoECA4QAQ&usg=AOvVaw2wzs5m9tM-0QXaHRjkKaDl
PANCAN WEBINAR ON DIET, NUTRITION AND TAKING ENZYMES
https://www.pancan.org/facing-pancreatic-cancer/living-with-pancreatic-cancer/diet-and-nutrition/pancreatic-enzymes/
Question#2: Metallic Taste
https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/eating-problems/taste-smell-changes.html
https://www.whatnext.com/blog/posts/15-ways-to-battle-metallic-taste-from-chemo
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4 ReactionsI can’t understand some of your terms. Also, I am on Zenpep, not Creon. One thing I do know is that sugar is bad. Check with your doctor, but any kind of fructose or sugar in any form seems to lead to diarrhea. I use Stevia, and read every label. It may say sugar free, but when you get to the ingredients there’s sorbitol, etc. Good luck. This is one h**l of a journey.
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1 ReactionMy husband has different NETs (Insulinoma) so too much insulin but have recently found that his lasix helps suppress the insulin effects and raises his blood sugars if you are on lasix maybe ask your doctor about this. Regarding the metallic taste another patient we have conversed with said he started using plastic utensils and the metallic taste went away. I wish we had known this was a possible option when he was on the folfdox/5Fu. Now doing CAPTEM so will try if metallic taste starts again.
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1 ReactionPlease do try a food journal. I have done that and now know exactly what will set off my system. I cannot afford Creon just now, so I stay away from particular foods and will take a brand if I just cannot resist.
I was not left diabetic or enzyme deficient so I am blessed in that regard as well.
Lastly, my dietician switched me to ADEK water soluble vitamins and I take extra D3. I eat what I want, but no large meals-and 5-10 servings of fruits/vegetables with 50-80 grams protein daily. Maybe this will help someone…
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2 ReactionsWondering if you have tried Abbvie Assist for Creon. My pharmacist at Mayo Clinic suggested it as my Creon was expensive. I emailed Abbvie Assist, the sent me an online form to fill out, and I was approved for one year of free Creon. Your oncologist needs to fill out a small portion of the form, but it was easy and the effort was worth it. I get 3 bottle with 100 Creon in each bottle (36,000 unit capsules) each month. Good luck!
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2 ReactionsAre you yet on Medicare? I looked at that but thought to be disqualified as I just now receive Medicare.
Maybe I will try anyway. I’m sure they are making enough money to afford to give me a bottle!
I am 72 and on Medicare.
I am receiving Creon with the Abbvie Assist program. I have Medicare, Supplement and RX coverage. My physician assisted me in applying directly to pharmaceutical company. Earned income has to be below a certain amount. Go on line and download the forms.. complete and then take to your physician for signature etc.
I am seeing results after only 10 days on Creon. Diagnosis: EPI and Celiac. In my case, a compassionate and caring physician assisted me. Even with RX insurance, I could not afford the drug.
Bham, AL