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Julie Fleshman: Hi, I'm Julie Fleshman, President and CEO of PanCAN. On today’s podcast, we will learn about pancreatic enzymes.
Alisyn Camerota: We want to welcome our listeners to the eighteenth episode of PancChat. I'm Alisyn Camerota, your host.
We also want to thank our sponsor, Revolution Medicines.
Last time, you'll remember we dove into nutrition and how to best help patients with pancreatic cancer.
Today, our focus shifts to pancreatic enzymes. So to learn more, we're going to be talking to Dallas Lawry, who can help patients understand more about these enzymes and why pancreatic enzyme replacement therapy may be vital during and after treatment. Dallas is an advanced oncology certified nurse practitioner at UC San Diego Moores Cancer Center, where she pioneered and runs a specialized clinic for pancreatic cancer, covering everything from diagnosis to treatment to survivorship.
She also served on the Canopy Cancer Collective's working group, contributing to the first U.S. consensus white paper on identifying and managing exocrine pancreatic insufficiency, also known as EPI, and pancreatic enzyme replacement therapy, also known as PERT, in pancreatic oncology practice.
Welcome, Dallas.
Dallas Lawry: Good morning. Thank you so much, Alisyn.
Alisyn Camerota: Thanks so much for being here. Okay. So what is the role — what is the role of pancreatic enzymes in treatment?
Dallas Lawry: Yeah. So the pancreas is actually vital to digestion. It produces pancreatic enzymes, which are amylase, lipase, and protease, and they break down carbohydrates, proteins, and fats. And without the ability to do that, patients actually can't get any nutrition from the food that they eat. And exocrine pancreas insufficiency is common in up to as high as ninety percent of patients with pancreas cancer.
Alisyn Camerota: And so what happens if they don't — if the pancreas doesn't produce enough enzymes and, as you say, they don't get that nutrition?
Dallas Lawry: Yeah, so the pancreas, whether by way of blocked ducts or atrophy or an actual tumor or the cancer itself, doesn't release enough enzymes or any. And so the patients will get GI symptoms. So nausea, sometimes constipation or diarrhea, abdominal pain with eating, weight loss is the big one. If you think about it, you don't make sense. If a patient isn't able to digest the nutrients in their food, they're going to present with weight loss.
Alisyn Camerota: So let's talk about how a patient can counteract that enzyme deficiency. What's the answer?
Dallas Lawry: Sure. The mainstay of exocrine pancreas insufficiency is pancreatic enzyme replacement therapy, also known as PERT. And so, just like supplementing any other deficiency, we give a supplement. So there are five different prescriptive brands of pancreatic enzyme replacement therapy in America. But essentially, a patient will be prescribed it, and they take it with meals. And that, as far as we know, is replacing the enzymes that they are missing.
Alisyn Camerota: We'll get into — I want to get into a little bit more specifics, but back to the weight loss for a second. Because I'm a little confused about that. Is the weight loss that's associated with cancer because of these enzyme insufficiencies, or does cancer just eat away at calories and at your — just kind of cells itself? Which one — when you see cancer patients who've lost a considerable amount of weight, what's at play?
Dallas Lawry: That's a really good question. Actually, they're all at play. So the cancer itself can cause cachexia, which is where cancer is stealing the nutrients you get from your body. Right. And then pancreatic cancer further complicates that. So if someone is having exocrine pancreas insufficiency or other symptoms of pancreas cancer, like fluid on the abdomen per se, all of these things contribute to not having a good appetite, being able to only eat a little bit at a time or nothing at all if you're experiencing nausea. So pancreas cancer can compound the weight loss that we see in other cancers because it's a GI cancer in origin. And because also now with the exocrine pancreas insufficiency, you're not even able to digest the food and gain the nutrients from it if you're able to eat.
Alisyn Camerota: Yes, that's exactly — that makes a lot of sense. And so the fluid on the abdomen is one of the — you know, complications or I guess frequent symptom of pancreatic cancer — that the ascites, you know, called. And what's that? Is that about digestion or something else?
Dallas Lawry: It's actually related to a fluid shift from malnutrition. So, fluid likes to pull protein, and ascites is a form of what we call third spacing. And so when the protein kind of leaks into the abdominal cavity, fluid will follow, and that's what causes ascites. And that's why when it's drained, it's that yellow color, because it's full of protein-rich fluid.
Alisyn Camerota: Okay, so how can patients get the best out of these supplemental enzymes?
Dallas Lawry: So get it — you get it first — get a prescription from your doctor. We like to start patients at a level of around fifty to seventy two thousand units of lipase. So pancreatic enzymes, whether it's Creon or Pancreatic or Zenpep or any of the formulations that are offered, are dosed on the lipase units, which are the — which is the protein or the enzyme that breaks down fat specifically. When you get your prescription, it will probably say take three times a day with meals. What patients can do to improve this and optimize it even more is to space out the pills through a meal. So usually a patient will be prescribed, or should be prescribed, two to three pills per meal. And what they want to do is take a few bites of food, swallow the first pill, eat half of a meal, swallow the second pill, and so on and so forth. Because we want to mimic the natural secretion of enzymes from the pancreas, which would happen as someone is eating. So taking all of the pills before a meal or fifteen minutes before you sit down to eat is less conducive to it working as well as it could.
Alisyn Camerota: That's fascinating. I didn't know that, but it makes perfect sense — that you want to incorporate it into kind of the bites that you're digesting. Same with snack. I mean, whenever — should a patient be taking these whenever they eat anything?
Dallas Lawry: Yes, they should. And usually with snacks, we say take half the amount with a snack. And we give that freedom because some patients are on two capsules a meal, so they would take one with a snack. Some patients are on four or five capsules with a meal, so they would take two for a snack. And that's because everyone is different, and everyone's diet is different. Now, the question sometimes comes up with tube feeds or protein shakes, or even coffee with butter or half and half. We want them to be taking a small amount of Creon with those meals too, because if they don't, and they contain fat and protein, not only are they minimizing the nutrition they can get from these meals or the snacks, but they also might experience some GI upset. So, patients who have exocrine pancreas insufficiency — when they eat, and they're not able to digest the food, it gives them upset stomachache, abdominal pain, nausea — and the Creon or Zenpep or Pancreatic or any pancreatic enzyme replacement therapy can help to mitigate that.
Alisyn Camerota: So that is — I did not know that, even with liquid nourishment, to try to take them. Are these enzymes covered by insurance?
Dallas Lawry: Good question. Often it's a mixed bag. Everyone has different insurance. They can be. And I've got to be totally honest here. I have seen the prescription be $0, completely covered by insurance. I have seen the prescription be $4,000 a month. I always tell patients, I'm going to sign this prescription. I have no way of knowing exactly how much it's going to cost until it hits the pharmacy. All you need to do is call me if it's too expensive, and too expensive looks different for everybody. It might be $25. It might be $2,500. So it's really dependent on the type of insurance and the formulation that the doctor prescribes. So for Medicare patients, they're kind of in a special group because now with the $2,000 cap, they might get hit with a really high bill the first month and then pay nothing for the rest of the year. Or if they sign up for that new M3P program, which again is opt in — it's not automatic — they can spread out that $2,000 over the course of a year and not get slammed with a high bill for that first prescription. So I think the patients, as long as they know if it's too expensive that they should tell someone, we have ways to work around that.
Alisyn Camerota: That's some great tips. Those are some great tips that you just gave, because I think that people can feel totally overwhelmed when they get a huge, you know, tab at the drugstore. And I love that you're telling them that's not a dead end. There are still things that you can do at that point to help ameliorate, you know, the cost of this. Yes. Okay. So Dallas, what else? What else do you want people to know?
Dallas Lawry: Yeah. You know, I'm going to just piggyback on that last conversation. If a prescription is too expensive, there are things that we can do. You know, sometimes we require like a prior auth or need to submit someone through the patient assistant program with the actual company. And all the different companies have kind of different routes and different phone numbers and different programs that can help patients. The other option, and this is if we've exhausted everything, right? Like we've tried this formulation, then we've attempted to send a new prescription of a different formulation to the pharmacy, and it's still just too expensive. We can look into over-the-counter options. Now, as a Western medicine provider, I don't necessarily prescribe supplements, but these over-the-counter supplements are a workaround that many patients are using and, unfortunately have to use due to cost, and because of the amount of pills they have to take every day. So if someone does need this option, it's a fantastic option. If we've exhausted all other methods and resources, they usually have to take a little bit of a higher dose. It's less potent than a prescriptive brand, but it's how a lot of patients get through if they can't get it through their insurance or their doctor's office.
Alisyn Camerota: That's really excellent information. Really good to know. What else, Dallas? Anything we've missed?
Dallas Lawry: I think when somebody is faced with their new diagnosis of pancreas cancer or a pancreas tumor, there's so much going on and they're starting on a lot of medications. You know, it seems really daunting to take three pills every meal, three times a day, plus snacks. And I just let the patients know that I know this seems like so many pills, probably more pills than you've ever experienced, but the patients feel a lot better. And I get about 500 new referrals of pancreas cancer a year. It is the only thing that I do. And I have had maybe two patients ever tell me that it caused abdominal pain. So it's not impossible, but the side effect profile of this drug is very low. Patients can stay on it for a long time. And in survivorship, patients are on it for the long haul, and not commonly do they come off of the medication. And that's okay. If the patient goes through surgery or doesn't, it is still very likely that they're going to have pancreas insufficiency and need this medication for life, and you get used to it. So, as daunting as it seems, it's something that you guys can overcome.
Alisyn Camerota: I'm so glad that you made that point, because I came to see it — when I would give it to my husband who was going through this — as basically just a vitamin. It didn't even really feel like medication. It felt like here's your vitamin C, here's your vitamin D. It felt like a supplement in that way. Somehow it felt quite different than any kind of oral medication, I think, because I don't think he experienced any side effects with it. It was just like taking what you would take with your meal of extra vitamin D.
Dallas Lawry: Yeah. And it is a supplement, right? We're supplementing pancreatic enzymes. So it's a great way to think about it. Now, remembering to take the pills with food also gets easier as you go along, because sometimes if you miss the PERT, the GI symptoms come back.
Alisyn Camerota: Got it. All right. Well, Dallas Lawry, thank you very much for all of this information and these tips. Really great stuff.
Dallas Lawry: My pleasure. Thanks for reaching out, you guys. Happy, happy to be here.
Alisyn Camerota: Great. And thanks to all of you for listening to PancChat. I'm Alisyn Camerota, your host, and I'll see you next time.
Cindy Gavin: Thank you, Dallas and Alisyn, for that informative discussion on pancreatic cancer enzymes. I'm Cindy Gavin, CEO and co-founder of Let's Win Pancreatic Cancer.
If you or a loved one has been diagnosed with pancreatic cancer, navigating this journey can be extremely overwhelming. But you don't have to do it alone.
Be sure to explore the abundance of resources available for pancreatic cancer patients and caregivers through Let's Win and PanCAN. PanCAN can be found at pancan.org, and Let's Win can be found at letswinpc.org.
Together, Let's Win and PanCAN are committed to guiding you through every step of the pancreatic cancer journey, offering support, information, and hope.
In our next episode, we'll be speaking about pancreatic cancer vaccines. Follow PancChat and get new episodes twice a month, where you get your podcasts on all available major platforms. Thank you, and we look forward to seeing you next month.