What are other survivors doing about pancreatic enzymes replacement?
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 do not believe that a natural enzyme supplement would cause anyone’s CA19-9 to increase. There are likely other causes for that. I know I personally take the Pure Energy Enzyme Power supplement which I purchased from Amazon and my CA19-9 has been decreasing each week with chemo. I’m on the 5-FU regimen. I was at 217 on 6/16 and each week it has decreased significantly. My CA19-9 is currently at 88, still in the high range but on it’s way down. I eat very limited to no sugar. I do eat some fruit though - papaya, cherries, pomegranate, wild organic blueberries & occasionally fresh squeezed orange juice (when my body craves it). Papaya & pineapple are great natural digestive enzymes! I suggest eating more natural sources rather than popping more pills.
Papain contains only the single enzyme papain which is a protease enzyme. It is specific to digesting protein. Papain is extracted from the papaya to make meat tenderizer although Bromelain from the pineapple fruit is also a protease and is now used for producing meat tenderizers.
Papain being a single enzyme does not contain amylase to break down carbohydrates. The salivary glands in addition to the pancreas produce amylase which may be enough for patients to handle a carbohydrate load. Papaya also does not contain any lipase, the enzyme needed to digest fats. A meal other than low fat could be problematic for some from not digesting the fat soluble vitamins to GI tract issues of diarrhea, loose stools and gas.
There are OTC brands of pancrealipase such as Vital Nutrients and Digestive Gold as examples that are considerably less expensive and are a blend of the three digestive enzymes ensuring nutrients and vitamins from carbohydrates, fats and protein are more efficiently absorbed. Vital Nutrients also produces a vegan version where none of the three digestive enzymes come from porcine pancreas. They are either plant or bacteria derived.
I also take plant based digestive enzymes. I don’t rely on JUST papaya. It is a great additive though being a natural fruit. I also don’t eat meat or dairy so I don’t need all the digestive enzymes.
You do need all the digestive enzymes for your pancreas to work efficiently and protein is not just in meat and dairy but also in beans, fish, eggs, and grains. You need protein for muscles, bones, cartilage, hormones, and enzymes. Also, a lack of protein causes muscle wasting.
No you don’t need dairy, eggs, meat or fish. There are plenty of plant based protein sources. I have been a vegan for years. I have done all the research.
Dairy is just plain bad for humans!
My point being, of which you got lost on, is that you are still eating some form of protein of which the body requires and that pancreatic enzymes (whether supplements or your own natural pancreatic enzymes) are needed to digest said protein.
If you go back & read my previous comment. I stated that I also do take a plant based digestive enzyme which is a full spectrum enzyme called Pure Synergy. I supplement that with fresh papaya.
i just had whipple surgery 5 weeks ago and I am still miserable with trying to eat enough to keep my weight on.I have gas and indigestion with burping mostly after every meal. Still having a lot of surgical pain and that just adds to it. Wondering how you can tell if pancreatic enzymes are needed and if they would help or not? Also how many do you take? I have chronic constipation and worried about them causing more of that.
"I also don’t eat meat or dairy so I don’t need all the digestive enzymes."
Again, my point is protein isn't just in meat and dairy. You need protein to survive of which you claim that you don't need all the enzymes because you don't eat meat or dairy. BUT you are still eating protein which requires pancreatic enzymes to digest, whether supplements or your own natural pancreatic enzymes.
You can't see the forest for the trees.
@aceman66
Chronic constipation 5 weeks post-Whipple is surprising to me; I'm almost jealous!
Seriously though, if you haven't already informed your surgeon of this fact, you probably should, just to make sure you don't have some kind of blockage, gastric paralysis, or delayed gastric emptying. Also, if you're taking any opioid pain meds, they are notorious for contributing to constipation.
I lost about 15 pounds in the first 6 weeks after my Whipple, but have been at a very stable weight for the year since.
My big side effect after Whipple was "steatorrhea," which may be similar to diarrhea in consistency and frequency, but noticeably more oily (floating) and orange in color, indicating the need for more enzymes (particularly lipase to digest fat if you're consuming any). I'm a big meat eater and coffee drinker (with heavy creamers), and was consuming some serious "comfort foods" (ice cream, banana nut bread w/ real butter) and other sources of fat that were wreaking havoc on my digestion day and night.
Since normalizing my diet somewhat, and starting enzymes (I didn't have any the first 5 weeks), it has all been under pretty good control. I seem to only get the extra gas with certain foods or if I take too many enzymes, but steaorrhea if I take too few. Three of the 36K unit Creon capsules is about right for me with a typical meal.
Your mileage may vary, and you may need another few weeks to get the right balance. It helps to back off most of your foods and drinks for a few days, then keep a journal as you start adding new ones. It's not surprising to still be a little out of sorts this soon after surgery.