What are other survivors doing about pancreatic enzymes replacement?

Hello @pattie1952

When was your partner diagnosed?

Here is a link to the article I was talking about: https://advancingthescience.mayo.edu/2018/07/02/a-revolution-in-pancreatic-cancer-treatment/

Hello @patti1952

I am so sorry to hear of your partner's diagnosis. That is so unfortunate.

Teresa

Is this the product you were referring to? https://www.pureencapsulations.com/pancreatic-enzyme-formula.html
I believe that my wife is allergic to the pork based Creon since she gets worse diarrhea when she uses it than when she doesn't. Would love to know if you or anyone else is using it and if it is effective. (Wasn't allowed to post the site)

@beachdog, welcome to Mayo Clinic Connect. I see that you wanted to post a link to your post above. New members cannot post web links for a few days. We do this to protect the community from spammers, i.e., people who join only to post links to sell something, etc. Clearly the link you wished to share was not spam. I have inserted the complete link for you.

What enzyme replacement is your wife using?

She was taking Creon. Started taking around her 8th folfironox cycle (she had 9 total) then continued after the radiation and surgery. Gag reflex prevented her from taking the capsules after surgery so she was mixing with applesauce. The doc kept telling her to increase dose because of diarrhea until finally she just stopped taking it altogether because we figured that if no amount is the correct amount, it wasn't working for her. Looking for other options because she can't go to the hospital for iv or feeding tube at this point.

@beachdog, you're wife is not the only person who cannot tolerate Creon. @treadmillann also mentioned having a terrible reaction to Creon. She switched to over-the-counter papaya enzymes, but unfortunately the stool issues didn't subside with that alternative either. I'm tagging @marvinjsturing @cindee60 @kjrita and @tracyweis so they can share their experiences too.

Beachdog, how is your wife's appetite and calorie intake?

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!

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.

@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.

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.