Pancreatic enzyme replacement

Posted by marvinjsturing @marvinjsturing, Jul 13, 2018

I am a 4 year survivor of pancreatic cancer. I have been on creon since my Whipple. It is very expensive. I talked to someone who was using Pure Encapsulation instead of creon. The formula doesn’t match my creon, but it is about 1/4 the cost of the co-play on creon. What are other survivors doing about pancreatic enzymes replacement?

Liked by beachdog

@beachdog

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.

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@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?

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@colleenyoung

@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?

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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!

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@fassbinder

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!

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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.

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@colleenyoung

@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?

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@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.

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@beachdog

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.

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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.

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@colleenyoung

@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?

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@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.

Liked by beachdog

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@fassbinder

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.

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@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.

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@beachdog

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)

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

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@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.

Liked by beachdog

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@tracyweis

I had a Whipple at Mayo Clinic nearly 12 years ago and have been on a number of different pancreatic enzymes over the years. I currently taking Creon, but it’s so incredibly expensive. I’d love to hear more about the Pure Encapsulation.

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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.

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@patti1952

Thank you so much but my partner has stage 4 pancreatic cancer that has metastasized to his hip bone. No one had suggested surgery just the radiation to the hip and chemo which he had to stop it caused a heart attack and had left him weaker then the start. They don't understand anything about him or why he is still alive for that matter.

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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.

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@beachdog

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.

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There is a coupon through the creon website that gives a month for $5 instead of our copay of $90. I don't know how long they will offer it though.

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Its been three months since we started working with a cancer nutritionist (all telemedicine visits). She listens well and has been able to provide some needed emotional support as well as suggestions for how to add calories, protein and some variety to my wife's diet. We still get the occasional encouragement to add commercial supplements. My wife is very hesitant because most of them are heavy on chemical ingredients that she wouldn't have eaten even when she was healthy. Just this week we added homemade smoothies with organic vegan protein, fruit, milk and peanut butter. Taking it slow before trying to also add organic whey protein. She's very discouraged because the chronic diarrhea has kept her from gaining weight. The immodium has seemed to lose effectiveness and she was prescribed cholestyramine last month to help the diarrhea. It settles her stomach a bit but hasn't stopped the diarrhea.

Starting to think that her surgery was too drastic and this is her permanent situation. Has anyone ever gotten past the chronic diarrhea stage?

REPLY
@beachdog

Its been three months since we started working with a cancer nutritionist (all telemedicine visits). She listens well and has been able to provide some needed emotional support as well as suggestions for how to add calories, protein and some variety to my wife's diet. We still get the occasional encouragement to add commercial supplements. My wife is very hesitant because most of them are heavy on chemical ingredients that she wouldn't have eaten even when she was healthy. Just this week we added homemade smoothies with organic vegan protein, fruit, milk and peanut butter. Taking it slow before trying to also add organic whey protein. She's very discouraged because the chronic diarrhea has kept her from gaining weight. The immodium has seemed to lose effectiveness and she was prescribed cholestyramine last month to help the diarrhea. It settles her stomach a bit but hasn't stopped the diarrhea.

Starting to think that her surgery was too drastic and this is her permanent situation. Has anyone ever gotten past the chronic diarrhea stage?

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If you live in a state where marijuana is legal, you might try Rick Simpson Oil for the pain. Before we started treatment, my hubby had terrible stomach pain when eating/digesting. He took a rice sized grain on thanksgiving and got immediate relief, better than any pain med. You might ask the doctor about it.

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@debsid

If you live in a state where marijuana is legal, you might try Rick Simpson Oil for the pain. Before we started treatment, my hubby had terrible stomach pain when eating/digesting. He took a rice sized grain on thanksgiving and got immediate relief, better than any pain med. You might ask the doctor about it.

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My wife has been using RSO ever since she started chemo. Without it, she probably would have never eaten again. Using RSO is the only way she got off of Oxy. How does your husband take the RSO? My wife started by putting it onto a cookie or cracker but the smell and flavor were so off-putting that I have been making capsules. Unfortunately taking in a capsule makes the onset of the effect very delayed and hard to predict.

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