What are other survivors doing about pancreatic enzymes replacement?

Patti, did you ask about any clinical trials? If you are on palliative care, some get relief from cbd and RSO (Rick Simpson Oil
or Charlottes web). You have the right to try. Blessings to you both.

Did creon help you with the cost? We have gotten a coupon for 5/month. Don't know how long they will offer that. Haven't had surgery yet and pancreas is still working pretty well.

@beachdog, @fassbinder, @marvinjsturing, and others. I know you have all been discussing supplements to help with diarrhea etc. While I have never had to personally use this product I have heard of it in a support group I've attended for folks with a rare form of gastric cancer. Members of this support group (for NET patients) say it is helpful post-surgery, during chemo treatments, etc. It is called, Enterade. Here is the website that gives you more information, https://enterade.com.

@beachdog I know someone who uses this product. He uses it because of the cost of Creon.

@fassbinder EXACTLY! We still have been trying to get to a pancreatic or at least a digestive cancer specialist dietician because the advice we receive even from the pancan surgical team is the generic, "use the Creon, take ensure, take protein supplements ..." But what are you supposed to be doing when those things cause the vomiting and severe diarrhea?

In my wife's case, the chemo caused temporary changes in tastes that made food taste vile but it lasted only a few days. Something about the surgery, whether the loss of multiple organs or the side effects of the anesthesia, epidural and pain meds, made food so vile that she immediately spit it out or gagged it up. That lasted over a month. No one has acknowledged what else to do. Now 2 months later these reactions have subsided for well-prepared foods but continue for anything like ensure or other supplements. We're really seeking a detailed dietary meal plan that I can prepare for her that provides enough nutrition and variety.

@beachdog My doctors started me on Creon immediately after my Whipple. I have been on it for 6 years now. I asked my nurse practitioner at Mayo about switching to Pure Encapsulation or other over the counter enzymes. She checked with a pharmacist. I was told that I could try other enzymes but I should not use anything that is not USP certified. I was checking not because I could not tolerate Creon but because of the cost of Creon. I have had to adjust my dosage from time to time, but I have used nothing but Creon and it has worked for me.

That's an interesting idea, thank you. We've probably talked to five different Mayo nutritionists at various stages over this past year and haven't really felt the advice was tailored to my husband's personal situation - it felt generic. I realize it can be hard to give this advice when a person' body is going through so much change, but it would at least feel better if we sensed the advicet was unique to him. Probably tough to do since everyone's anatomy, tastes, needs, health, etc. is so different.

@colleenyoung My wife has a combination of forcing herself to eat because she has to and some minimal appetite because she's using medical marijuana. She also takes megace and marinol (laboratory thc) which seems to provide no benefit at all. She's eating 6 meals and snacks per day now with calories estimated to be 1000-1500 but the first month she probably didn't even get 500-1000 per day. I have no question that she has severe malnutrition. A week of eating well with intermittent diarrhea she might gain a pound or two but a day of diarrhea can set her back 2-3.

I wish your husband a good recuperation. If your situation is similar to ours, seek nutritional guidance outside of the oncology or hospital. We hired our own dietician because we've been waiting 2 months for the hospital's oncology nutritionist. I had no idea that the Creon was so expensive. Ever since her diagnosis we've met the out of pocket maximums both years.

My husband has been taking creon since last June. We always assumed the diarrhea was due to chemo, but maybe not since it has continued off and on since chemo ended in December. This is the first time I've heard that maybe this enzyme might be the cause? Does anyone know if the Pure Encapsulation works better? You'd think the docs could suggest trying something different to combat this problem rather than us trying to figure it out on our own. When we paid $1600 in January for John's first Creon prescription of 2020 (insurance deductible had not been met yet), many friends suggested I try mail order from Canada and even Sweden - same creon pills for one tenth the cost! I have not resorted to that yet since our supply is good but am keeping the info handy just in case. John's Whipple procedure last week went well and we won't know for a few weeks yet if he can discontinue using creon. Lots to balance!