What are other survivors doing about pancreatic enzymes 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?

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I was on a supplement for pandemic enzymes, company is Megeagetics.
My oncologist was against it but made me feel good, no cramping but, my CA-19 went up and my liver was bothering me. So I am also looking. I am taking Ceron again and having constipation issues. Any suggestions? Meralax ?
Thanks

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I am a 2 year survivor but recently spent 2 weeks in hospital with a blocked duct and infection in my pancreas. The surgeon found no cancer. 6 weeks and I am feeling a little normal. I went to a functional medicine doctor and she suggested Metagenics. SpectraaZyme Pan 9x I take one with each meal and do not have the side effects of Ceron. I could not tolerate the medication and tried for 2 years. Blurred vision, all over not feeling well, and not to mention cramping constantly. The only issue with a natural supplement is the medical doctors don’t approve. My oncologist has agreed to let me stay on it. For some strange reason my CA-19 went from 45 to 100. Nobody can give me an answer why that could happen. I am reaching out to let others know of how good I feel, but not happy about numbers. Had mri 6 weeks ago and no cancer and had been on it for months. Welcome to any thoughts. The Pure enzymes gave me the same feeling as Ceron. I know we are all different. Thank you my PC friends.

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Profile picture for momof3gals @momof3gals

Hi
I am 11 months post Whipple for pancreatic Ca. I have spoken to my gastroenterologist about this a few times. I do not take any enzymes, I was originally prescribed Creon and did take it for a short while, but I am able to eat without it, I have no symptoms after eating. The doctor said if it doesn’t seem to make a difference there is no reason to take it. I have been blessed with the ability to eat just about anything post surgery

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You take creon if you get gas a lot. And if your stools are floating, if you don’t need them - that’s great! Creon helps with absorption of nutrients.

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Profile picture for marvinjsturing @marvinjsturing

Hello @patti1952

The Whipple procedure was developed by a Dr. Whipple back in the 1930's. It is a surgery for early stage pancreatic cancer patients.. (Although doctors at Mayo are developing procedures that are allowing them to successfully do surgery on patients with more advanced stages now.) In a typical Whipple, the surgeon removes the cancerous tumor from the pancreas, the duodenum, the gall bladder and part of the stomach. The surgeon then attaches the stomach and the pancreas to the small intestine.

In my case, I had already had gall bladder surgery, so the surgeon removed my duodenum, 1/3 of my stomach and most of my pancreas. What was left of my pancreas was so bad that the surgeon did not attach it to the digestive system. The pancreas makes insulin and digestive enzymes. I am now a Type I diabetic and I have to get the digestive enzymes in capsules every time I eat.

If you have any other questions, let me know and I will try to answer them.

Marv

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@ marvinjsturing how are you doing now? I take creon.

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Hi
I am 11 months post Whipple for pancreatic Ca. I have spoken to my gastroenterologist about this a few times. I do not take any enzymes, I was originally prescribed Creon and did take it for a short while, but I am able to eat without it, I have no symptoms after eating. The doctor said if it doesn’t seem to make a difference there is no reason to take it. I have been blessed with the ability to eat just about anything post surgery

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Profile picture for purpleturtle @purpleturtle

My husband has had 2 severe cases of pancreas. He has also been prescribed creon and sadly it is very expensive. $480 for one month and $150 for 3 months with insurance after deductible has been made. I suggest checking Amazon pharmacy, goodrx, Mark Cubans pharmacy, and if it is still too expensive you can contact the manufacturer to see if you qualify for a reduced price. I was also going to try a Canadian pharmacy.
Best wishes for you.

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Scroll up to the stage4survivor post- could be very helpful to you to find a better price or other options.
Best of luck to you.

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Profile picture for nonnie9153 @nonnie9153

For what Pancreatic issue did you have surgery?

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I was diagnosed with gastrinoma neuroendocrine tumor in the pancreas head which was removed in May 2020 by Whipple Surgery. Once a while I still have occasional diarrhoea, bloated stomach, heart burnt hence try to have frequent smaller portion of meals, avoid spicy & oily food & alcohols.

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Profile picture for jessie59 @jessie59

I stopped taking Creon for approx 6 months after pancreatic surgery in 2020. Now no issue on nutrition or energy level. I believe the body got adjusted to it & I have been eating well. Start off with daily walking exercise which I think help in the recovery.

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For what Pancreatic issue did you have surgery?

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I am also interested in Pure enzymes. I am having stomach issues with Ceron and also bowel, hemorrhoids, just don’t feel good on them the higher the dose the worse it gets. I have been told by friends that Pure encapsulations are good. Any comments?

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My husband has had 2 severe cases of pancreas. He has also been prescribed creon and sadly it is very expensive. $480 for one month and $150 for 3 months with insurance after deductible has been made. I suggest checking Amazon pharmacy, goodrx, Mark Cubans pharmacy, and if it is still too expensive you can contact the manufacturer to see if you qualify for a reduced price. I was also going to try a Canadian pharmacy.
Best wishes for you.

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