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Neuroendocrine Cancer and Pancreatic Enzyme Replacement Therapy (PERT) – the Digested Version (Nutrition Series Article 5)

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After 7 years of avoiding pancreatic enzyme replacement therapy (PERT), I finally asked for some on a trial basis.  To be honest, for some time, I thought they were really only needed in the NET world for those with pancreatic issues (pNETs).  I’ve always known I’ve had some digestive issues related to malabsorption. However, I’m not losing weight – this has been stable for some years.  Plus my key vitamin levels (B12 and D) are in range.  However, I’ve been struggling with a lot of bloating issues in the last couple of months, thus the trial.  You know me, I like to research and analyse such things! I’ve actually written about a lot of these issues in my Nutrition series ….. so this is now ‘Article Number 5’.

Crash Course. We eat food, but our digestive system doesn’t absorb food, it absorbs nutrients. Food has to be broken down from things like steak and broccoli into its nutrient pieces: amino acids (from proteins), fatty acids and cholesterol (from fats), and simple sugars (from carbohydrates), as well as vitamins, minerals, and a variety of other plant and animal compounds. Digestive enzymes, primarily produced in the pancreas and small intestine, break down our food into nutrients so that our bodies can absorb them.

Background

Some of the common symptoms of NETs are gas, bloating, cramping and abdominal pain and the root cause of these issues can sometimes be as a result of insufficient ‘digestive’ enzymes.  They are primarily produced in the pancreas (an exocrine function) and the small intestine but also in the saliva glands and the stomach.  This post will focus on pancreas and to a certain extent, the small intestine.  There are actually some key tell-tale signs of a pancreatic enzyme deficiency, such as steatorrhoea which is described as an excess of fat in faeces, the stool may float due to trapped air, the stool can be pale in colour, may be foul-smelling, and you may also notice droplets of oil or a ‘slick’ in the toilet pan.  Steatorrhoea is mainly due to malabsorption of fat from the diet and this can actually be caused or made worse by somatostatin analogues which are known to inhibit the supply of pancreatic enzymes. Of course if fat is not being absorbed, then the key nutrients your body needs to function properly might not be either.  The signs from that might not be so noticeable but can be even more problematic over time. Please see Article 1.

Those who have had surgery, in particular, in GI tract/digestive system, are at risk of malabsorption; as are those prescribed somatostatin analogues (Lanreotide/Octreotide) as these drugs can inhibit digestive enzymes, causing or adding to the malabsorption effect.  For those who need to read more, see Article 2.

One way to combat these issues is with Pancreatic Enzyme Replacement Therapy (PERT) which can mimic the normal digestive process. However, this is not the whole story as there could be numerous reasons for these issues, perhaps even some which are unrelated to NETs. If you are in doubt about whether you suffer from malabsorption and/or any form of digestive enzyme insufficiency, you should consult your doctors.

Pancreatic Enzyme Replacement Therapy

Many NET patients succumb to malabsorption issues and as a result are given Pancreatic Enzyme Replacement Therapy, or PERT for short.  There are various brands available (e.g. Creon®, Nutrizym®, Pancrease HL® or Pancrex®). Most are in capsule form in various doses.

How does PERT work? Most people experiencing the issues above are going to benefit from a multiple-enzyme replacement which tend to include the key ones such as:

  • protease which breakdown proteins (e.g meat, fish, seafood, dairy, nuts, etc)
  • lipase which break down fats (e.g from many different foods)
  • amylase which breaks down starchy carbohydrates (e.g. potatoes, bread, rice, pasta, cereals, fruits, fibre, etc).

The dose sizes tend to be based on the amount of lipase, i.e. a 25,000 strength would mean 25,000 units of lipase and (normally) a lesser amount of amylase and protease (it is with Creon).  The entire mix of enzymes may be given a name, in my case it’s ‘Pancreatin’. You will be given a number of capsules to be used from your prescribing doctor.

The pancreatic enzyme capsule is swallowed along with food and digests food as they pass through the gut. If your capsules contain an enteric coat or enteric coated granules (delayed release), they should not be affected by stomach acid. The replacement enzymes will help to break down food allowing the nutrients to be absorbed beyond the stomach (i.e. in the small intestine). Do not be alarmed at the dose sizes, a healthy pancreas will release about 720,000 lipase units during every meal!

Frequently Asked Questions (FAQ)

When I first started taking the supplements, I thought of numerous questions, many of which I could not find definitive answers to! Different sites say different (and contradictory) things.  Clearly, you should always consult your prescribing doctor and the medicine patient information leaflet. That said, I found the patient information leaflet which came with the capsules is just not detailed enough for an inquisitive patient such as myself!

I always like to refer to best practice which is why I’ve consulted one of the top NET Dietitians (Tara) and she has agreed to an online Q&A session HERE (date and timings to follow). Once this session has taken place, I’ll update this article with the output of this session.  Depending on how this goes, more sessions are planned (tbc) so it’s worth taking a place in the group (lurking is fine!). I need sufficient numbers before I can set it up. This is actually a new project for 2018 to provide an ‘educational’ place but with some privacy, on a worldwide basis, and with expert input when required.

Summary

I’ve always known about issues such as steatorrhoea and vitamin/mineral deficiency. My weight is fine but very happy to trial PERT to see the differences. I made a mistake of starting the capsules on Dec 23rd just before Christmas – it made for an interesting week!  Early days so far but I’m getting used to taking them (and remembering to take them ….). Still seeing signs of steatorrhoea but am tracking this against diet,  No change to stool frequency. I would appear to be belching more though!

In the meantime, I’d love to hear about your experiences so I can formulate some questions for the sessions – you may have a question already prepared? Also if you could give me some indication if this is a Q&A session you would like to take part in, please let me know.  You can either comment here, on the Facebook entry or message me here.

You may also enjoy these articles:

“Nutrition Article 1 – Vitamin/Mineral Risks”click here.

“Nutrition Article 2 – GI Malabsorption”click here.

“Nutrition Article 3 – SIBO/Probiotics”click here

“Nutrition Article 4 – Food for Thought – amines etc”click here

 

Thanks for reading

Ronny

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!


 


18 Comments

  1. Lizz says:

    I’ve been on Creon since 2011(when I had a partial pancreatectomy and a splenectomy) and I’m sure it helps me maintain my weight. I’m certainly interested in signing up for the nutritional Q&A. This is a tremendously useful blog and I recommend it whenever I can.

    Liked by 1 person

  2. John, husband, has been on Creon 24,0 with meals and Creon 12,0 with snacks. Very expensive, even with our Medicare D Program and the coverage gap it puts him in. He has PNETS, diagnosed after a ruptured gall bladder last summer. He is inoperable and qualified for the Lutathera targeted radioactive therapy. He will have his third of four treatments in Feb . Hoping he will be progression free. In the meantime he went from borderline to insulin dependent diabetes.
    He hasn’t been able to gain weight. My question for your dietician would be how the carbohydrate absorption is affected by the Creon? His appetite is great, but he runs blood sugars greater than 200. He is covered by sliding scale insulin with meals, but is there more we can do to get his weight back to normal.

    Liked by 1 person

  3. […] Ronny’s latest post – Neuroendocrine Cancer and Pancreatic Enzyme Replacement Therapy (PERT) – the Digested Version (Nut… […]

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  4. Alison Brighousr says:

    I’ve been taking creon with all my meals since my total pancreatectomy 2 years ago.There was a period of readjustment to start with but I can honestly say I don’t suffer any problems with them at all now. I generally take 35,000 with breakfast and lunch and 50,000 with main meals. I tend not to take any with snacks ( mainly because I forget) but have never suffered as a consequence. Prob totally unnecessary but I no longer eat pork products!

    Liked by 1 person

  5. I’m very interested in this topic. I have used creon and its competitive products on and off since my November 2013 right hemicolectomy. I have been on sandostatin LAR 40mg monthly all this time too. I have not been that pleased with the prescribed enzymes but I see no differences between the brands. My problem is the extreme discomfort of gas, cramping, and increased diarrhea I experience when I use them. I don’t think I am benefiting from them, but I will sometimes use them for a few weeks then have to stop them. My docs want to improve my absorption of nutrients. Nothing seems to fit the bill.

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  6. Jane osborne says:

    I have been taking it for over a year but tend to prefer to take it in the morning or (if I remember) with a rich meal I find I still have the diahorrea issues but if I take too much of the Creon it tends to be constipated too which is very uncomfortable. Like you I tend to have a lot of flatulence but sometimes I wonder whether this is due to eating bread or dairy. I sometimes dont eat very sensibly which doesn’t help but I am seeing a nutritionist in March.

    Liked by 1 person

  7. Happy to take part as well Ronnie, I’ve been taking Creon for five and a half years, I’m better at int now than I was a bit trial and error to start with. Im still a bit poor at remembering it but i tend to keep various pouches and bottles of it in lots of places so i have only once completely forgotten them and to be honest i avoided eating that day till i got home. There is also occasionally an issue with stock (certainly at my Pharmacy)

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  8. edebock says:

    Very interesting! At this point, I’m not experiencing any digestive issues and this type of therapy has not been suggested, but it’s good to know what’s out there in case of future need.

    Liked by 1 person

  9. Would be quite happy to participate Ronny, I’m just coming up for 2 years on Creon and going through a stage of re-adjustment. It is definitely not straight forward and has also been a point of conversation at a few NET natters. My specialist nurse is very interested in this area and is also gathering as much info as she can.

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