Nutrition and Pancreatic Cancer: Weight Loss, Enzymes and More

0:04 Hi everyone,

0:04 I'm Anna Berkenblit,

0:06 PanCAN's chief

0:06 scientific and medical officer.

0:08 Thank you for joining us

0:10 for a conversation

0:11 about nutrition in pancreatic cancer.

0:13 This is such an important topic.

0:15 We know that good nutrition care

0:17 improves outcomes for patients

0:19 and is critical for quality of life.

0:21 Our patient services team

0:22 fields many questions

0:24 from survivors and caregivers

0:26 about how to make healthy choices,

0:27 maintain weight,

0:28 and minimize

0:29 the side effects of treatment.

0:31 Today, we'll be talking

0:32 about all of these topics and more,

0:34 including the important role

0:36 of a dietitian

0:37 and new guidance

0:38 related to pancreatic enzymes.

0:40 We'll also hear about leading edge

0:42 research related to a common

0:44 and hard to treat condition

0:46 called cancer cachexia,

0:48 which is characterized

0:49 by significant

0:50 unintentional muscle and weight loss.

0:52 There will be a lot of information

0:54 provided today,

0:55 so if you have any questions

0:56 or need personalized support,

0:58 PanCAN patient

0:59 Services is available to you

1:01 via phone and email.

1:03 Monday through Friday from 7 a.m.

1:05 to 5 p.m. Pacific Time.

1:07 This free service

1:08 connects you

1:09 to an expert case manager

1:11 who can answer all of your questions.

1:13 Now, I'm excited to introduce you

1:15 to our panel of special guests.

1:17 Let's meet them.

1:19 Dr. Andrew Hendifar

1:20 is an oncologist

1:21 and medical director of both

1:22 the Gastrointestinal

1:24 Oncology Disease

1:25 Research Group

1:26 and Clinical Trials Office

1:28 at Cedars-Sinai.

1:29 We're also grateful for his leadership

1:31 as a member of PanCAN’s Scientific

1:33 and Medical Advisory Board.

1:36 Shelby Yaceczko is a registered

1:37 dietitian at UCLA health,

1:39 specializing in gastroenterology nutrition.

1:43 She co-led an expert working group

1:45 that includes

1:45 several members of our PanCAN team

1:48 that developed new recommendations

1:50 about managing exocrine

1:51 pancreatic insufficiency.

1:53 We'll talk more about this today.

1:56 And I'm also glad to

1:57 welcome Brooke Schasteen-Smith

1:59 to our panel today.

2:00 She volunteers for PanCAN’s

2:02 Survivor and Caregiver Network

2:04 and is the caregiver for her

2:05 father, Rob Schasteen,

2:07 who was diagnosed

2:08 with pancreatic cancer in 2022.

2:11 Through her volunteer role,

2:12 Brooke speaks with people

2:13 from across the country

2:14 who are faced with this disease,

2:16 offering support and encouragement.

2:19 And this volunteer work

2:20 is a family affair.

2:22 Rob is also involved with the network.

2:25 And lastly, we have Lizz Sanchez with us.

2:27 She is a PanCAN Patient Services

2:29 Senior case manager

2:31 who speaks with patients

2:32 and their caregivers every day,

2:34 answering questions

2:35 about the disease, treatment,

2:37 diet and nutrition, and much more.

2:39 So thank you

2:40 all for being part of this discussion.

2:41 Let's get started.

2:45 Dr. Hendifar, let's start with you.

2:47 You're an oncologist

2:48 as well as a researcher.

2:50 How does nutrition care

2:51 fit into your approach

2:52 to treating patients?

2:55 Hello.

2:56 Well, for pancreas cancer patients

2:58 and really all cancer

2:59 patients, nutrition

3:00 is always a vital issue.

3:03 Cancer inevitably leads to weight loss

3:05 from several factors,

3:07 and it's important

3:07 to address these immediately.

3:10 Weight loss can come from the pancreas

3:12 not working well, either

3:13 through an enzyme deficiency or diabetes.

3:16 It can also come from pain

3:19 and lack of appetite.

3:21 And most importantly,

3:22 an under-recognized.

3:23 It can be caused by the medication

3:24 we use to treat both pain

3:26 and of course, chemotherapy.

3:29 Unfortunately, the treatments for cancer

3:31 usually worsen the weight loss.

3:34 So our team at Cedars-Sinai

3:36 has been working with PanCAN

3:37 for more than ten years

3:39 to encourage patients

3:40 and doctors

3:41 to start pancreatic enzymes

3:42 as soon as possible.

3:44 While pancreatic

3:45 enzymes are widely available.

3:46 Having a dietitian

3:48 who understands pancreas

3:49 cancer associated weight

3:50 loss can be hard to find,

3:52 but definitely worth

3:53 looking and searching for.

3:56 Thank you.

3:57 Your leading research related to cancer cachexia,

4:01 a debilitating condition for which

4:03 there are no approved therapies.

4:05 Let's first define

4:06 this term for our audience.

4:07 What is cancer cachexia

4:10 and why is this condition

4:11 so challenging to understand and treat?

4:14 So when I think of cancer cachexia,

4:16 I usually visualize

4:17 someone who has been losing weight

4:19 and strength over several months.

4:21 And this is from the cancer itself.

4:24 Although the cancer

4:25 might not be diagnosed at first.

4:27 When it first starts out,

4:28 the weight loss is actually welcome.

4:30 People are usually trying to lose weight,

4:32 but soon everyone realizes

4:33 that this is becoming a problem.

4:35 It leads to changes in the ability

4:37 to perform tasks, that you normally do.

4:41 And finally,

4:42 it causes them

4:42 to change their physical appearance.

4:45 Patients try to eat,

4:46 but they don't really have an appetite.

4:48 And even when they're

4:49 forcing themselves to eat,

4:50 they seem to continue to lose weight.

4:53 When this occurs in a cancer patient,

4:55 we describe it as cancer cachexia.

4:57 Now the actual scientific definition

5:00 is 5% weight loss

5:01 over the last six months.

5:04 Now why why this is so challenging

5:06 is that our fundamental belief

5:09 is that the cancer is somehow interacting

5:12 with the patient,

5:13 with the human body

5:14 to cause this weight loss,

5:16 weakness and fatigue.

5:18 But we don't quite understand why.

5:21 And until recently

5:22 we haven't had any good leads

5:24 or good treatments

5:26 to reverse this weight loss.

5:30 Thank you for that overview.

5:32 You know, the good news,

5:33 though, is that

5:34 within the last

5:35 year, we've seen some

5:36 promising new research

5:37 into potentially effective

5:39 treatments for cancer cachexia

5:41 based on our increased

5:43 understanding of the biology

5:45 that's driving it.

5:46 I'm really excited about this.

5:48 Can you tell us more about it?

5:49 What have you been working on

5:50 and what's in the pipeline?

5:52 Yes, there are several

5:53 promising new approaches.

5:55 Researchers from around

5:57 the globe have developing

5:58 two concepts in parallel.

6:00 One of them is using

6:02 anti-inflammatory therapies.

6:04 Recently, we participated in the clinical

6:07 trial from investigators around the world

6:10 showing that using protein shakes,

6:12 anti-inflammatory medications

6:14 like ibuprofen,

6:15 omega three

6:16 supplementation,

6:17 which is widely found in fish oil,

6:20 and the physical activity routine

6:22 can improve weight

6:23 in pancreatic cancer patients

6:25 receiving chemotherapy.

6:27 This is one of the first interventions

6:29 to show weight gain

6:30 in this patient population.

6:32 Very exciting.

6:33 But even more importantly,

6:35 we have been working on

6:37 better understanding a novel pathway.

6:41 It's called the GDF 15

6:44 or growth differentiating factor 15.

6:46 And now we're better understanding

6:48 how this contributes

6:48 to cancer architecture.

6:50 So the facts are that we know

6:52 that this growth factor

6:53 is incredibly elevated

6:55 pancreas cancer patients.

6:57 In fact,

6:57 more than 90% of patients

6:59 with pancreatic cancer

7:00 have this growth factor

7:02 exponentially elevated.

7:04 Why?

7:05 We don't really know,

7:06 but it's very linked.

7:08 It's linked

7:08 very strongly to cancer cachexia.

7:11 We believe that a binds to a receptor

7:13 is actually in the brain,

7:15 and that this causes changes in appetite

7:18 and metabolism that leads to weight loss.

7:21 But we have also learned

7:23 that a new antibody to GDF 15

7:26 given to patients with cancer

7:28 taxi, was able to improve weight,

7:30 improve muscle mass,

7:32 and improve performance in patients

7:34 with pancreatic cancer,

7:36 colon cancer, and lung cancer.

7:38 These results were so profound

7:40 and surprising that they were published

7:42 in the New England Journal of Medicine.

7:44 Now, for our pancreas cancer

7:45 patients, there's currently

7:46 a phase three trial underway

7:48 evaluating a medication

7:50 called Pan Sacrum AB to treat 1000

7:53 pancreatic cancer patients

7:55 with weight loss.

7:57 This study is to better

7:59 learn how this medication

8:00 can improve weight, improve performance,

8:03 and hopefully extend the lives

8:05 of our friends and family members

8:06 affected by this disease.

8:08 I am so excited that we are

8:11 at this point where we have

8:12 a phase three trial

8:14 for a GDF 15 Targeted Therapy

8:17 for cancer cachexia.

8:18 The research

8:19 that we've all been investing

8:21 in over years

8:22 and years and years

8:22 is finally coming to fruition here.

8:25 And so I'm glad we're really uncovering

8:27 some potentially effective

8:28 treatments for cancer cachexia. Thank you.

8:31 So bottom line today,

8:34 what should patients know

8:35 about these clinical trials.

8:36 And what's your advice for

8:37 someone who's experiencing cancer cachexia now?

8:41 Yeah these these are great questions.

8:43 Firstly patients have pancreatic cancer

8:44 and weight loss

8:45 should try and enroll in these studies.

8:48 Not only will these medications

8:49 hopefully prove incredibly helpful,

8:52 but they're also very safe

8:53 and well tolerated.

8:55 There are

8:55 antibodies to the growth factor,

8:57 and they're monoclonal

8:59 and they don't

8:59 really have any side effects.

9:00 I know it's hard to believe.

9:02 And what is so exciting about this

9:04 particular trial

9:05 is that it's

9:06 the first registration trial on cancer cachexia

9:09 that's being performed exclusively

9:11 in pancreas cancer patients.

9:13 And historically,

9:13 as we all know, we're

9:14 usually the group

9:15 that is left out

9:16 from developing new medications.

9:18 Now, for those unable

9:19 to participate in this trial,

9:21 please try and see a dietitian.

9:24 They can help identify

9:25 if you need pancreatic enzymes.

9:27 They can also help you

9:28 with techniques and menus.

9:30 Food menus

9:31 to avoid additional weight loss.

9:33 And if seeing a dietitian

9:34 is not possible,

9:35 then please discuss your weight concerns

9:37 with your oncologist

9:38 and inquire

9:39 whether pancreatic enzyme supplementation

9:42 are indicated to help you digest your food

9:45 and gain weight.

9:47 Thank you, Dr. Hendifar.

9:48 And I'll put a plug in

9:49 for calling PanCAN’s

9:51 Patient Services as well,

9:52 because we have tons of resources

9:54 to help patients.

9:55 So perfect segue.

9:57 We'll return to you

9:58 a little bit later, Dr. Hendifar,

10:00 with some more questions.

10:02 But perfect segue

10:03 now to bring in Shelby

10:04 into the conversation.

10:05 Shelby, as a dietitian,

10:07 you work with patients

10:08 diagnosed with pancreatic cancer

10:10 and their families day in and day out.

10:12 Let's start with the basics.

10:14 What is a registered dietitian

10:15 and what role

10:16 do you play on the care team?

10:18 Yeah. Thank you.

10:19 And I think this is

10:20 a really important question

10:22 because it can get mixed up

10:23 between seeing,

10:25 nutritionist or a health coach.

10:27 And then what

10:28 a registered dietitian actually is.

10:30 So a registered dietitian

10:31 is a healthcare professional

10:33 that has specialized training

10:35 and is registered

10:36 under the Commission

10:37 on Dietetic Registration in the States.

10:40 And training

10:40 specific to what's called

10:42 medical nutrition therapy.

10:44 So I like to explain it

10:45 like how do we use nutrition

10:47 as part of the clinical care plan to help

10:50 manage or treat a disease or condition?

10:53 So on our cancer care teams are

10:55 RDs do a lot of different things.

10:57 And it can also depend

10:58 on the patient population

10:59 that we're working with.

11:01 But specifically in pancreatic cancer,

11:02 a lot of the work

11:03 that a registered dietitian would do

11:05 would be to help manage,

11:07 treatment side effects or complications

11:10 that may pop up,

11:11 help maintain body weight,

11:13 strength, lean muscle mass,

11:15 and help really optimize nutrition

11:17 to help support

11:18 quality of life

11:19 as well as clinical outcomes.

11:21 This is starting at time of diagnosis

11:23 and goes

11:23 all the way through that care continuum.

11:26 Registered dietitians

11:27 are recommended to be a member

11:29 of every cancer care team.

11:31 Since there are so many different

11:33 nutrition complications

11:34 that can arise

11:35 during somebody's care journey

11:36 all the way through survivorship and,

11:41 sometimes,

11:42 unfortunately, a registered dietitian

11:44 is not part of the care team.

11:45 As doctor head to Far just mentioned.

11:47 But I would always encourage you to ask

11:49 or seek those out

11:50 because there are registered databases

11:52 that you can look for

11:53 with specialized

11:54 dietitians who have specialty area

11:56 in oncology care.

11:59 Thank you.

12:00 The expertise that you provide

12:01 is so important

12:02 right from the time of diagnosis.

12:04 Shelby, I'd love to talk with you

12:06 about the research

12:06 that you've been involved in.

12:08 You have co-lead an expert

12:10 working group

12:10 through the Canopy Cancer Collective

12:12 that also includes

12:13 several members of the PanCAN team.

12:15 And this group developed

12:17 new recommendations

12:18 for managing exocrine

12:19 pancreatic insufficiency.

12:22 This is a common challenge

12:23 for patients with pancreatic cancer.

12:25 It can often go

12:26 unrecognized and untreated,

12:28 and it can have a real impact

12:30 on quality of life.

12:31 So lay the ground for us.

12:32 What is pancreatic exocrine insufficiency

12:35 and why does it so often

12:36 fly under the radar?

12:38 So EPI

12:40 essentially occurs

12:40 from two different reasons one,

12:43 when the pancreas isn't producing

12:45 enough digestive enzymes or two

12:47 when there's potential,

12:49 what's called asynchrony or those enzymes

12:51 aren't mixing in the right

12:52 timing that they used to.

12:54 That can often happen

12:55 if somebody has kind of a large

12:57 GI resection surgery,

12:59 and we're

12:59 hooking things up in a different

13:01 anatomy than we had before,

13:02 it's a new plumbing system.

13:04 But often what we see,

13:06 you know, in pancreatic cancer

13:07 is as the cancer cells, can progress

13:11 or the pancreas function

13:13 isn't working as well as it used to.

13:16 Essentially, we're not producing

13:18 enough digestive enzymes

13:19 to be able

13:19 to really break down and absorb

13:21 our food as well as we used to.

13:23 And you can

13:24 this can lead to a number of different

13:25 things like malabsorption,

13:27 unintentional weight loss or muscle

13:29 loss, vitamin deficiencies

13:31 or nutrition deficiencies,

13:33 diarrhea, loose

13:34 stools, urgency to have bowel movements.

13:37 Frequently people can feel

13:38 really, really fatigued and tired

13:40 despite them

13:41 trying to eat more,

13:42 get in more nutrition

13:44 because they're just not absorbing it

13:45 very well.

13:46 It's really common in pancreatic cancer,

13:48 but it's often missed

13:49 because these symptoms can overlap

13:51 with so many other

13:52 things and conditions,

13:54 as well as just treatment itself.

13:57 And there's not often

13:58 routine screening for EPI

14:00 that's built into the clinical pathways

14:02 at institutions.

14:04 So it is often under-recognized.

14:07 Thank you, Shelby.

14:08 And that's

14:08 really the genesis of the project,

14:11 to help

14:12 make sure that everybody gets recognized

14:14 and then treated appropriately.

14:15 So the team surveyed patients

14:17 and their families

14:18 and brought together health care

14:19 professionals, including dietitians

14:22 and other advanced practice providers,

14:24 all with the goal to understand

14:25 why this condition

14:26 doesn't get the attention it deserves,

14:28 and to establish

14:29 some consensus around

14:31 what needs to change

14:32 to give more people access

14:34 to pancreatic enzyme replacement therapy.

14:37 What did the team learn

14:38 and what are some of the key takeaways?

14:40 So through we use patients caregivers

14:43 and clinician input through different

14:45 focus groups, surveys and discussion

14:47 as part of the Canopy Cancer Collective

14:50 as well

14:50 as with partnership with PanCAN.

14:52 And we identified three big gaps.

14:55 So number one,

14:56 there's a lack of awareness of EPI. Just

15:00 all all from start to finish.

15:03 There's unclear ownership among providers

15:06 for who is responsible

15:08 for recognizing and diagnosing

15:10 and who's responsible

15:11 for managing and treating.

15:13 And then there was significant access

15:15 to barriers in to receiving

15:17 pancreatic enzyme replacement therapy,

15:20 which is otherwise known as PERT,

15:21 which is really the gold

15:23 standard treatment for EPI management.

15:26 We found strong consensus

15:27 that standardized screening for EPI,

15:31 clear clinical responsibility,

15:33 and ownership

15:34 in proactive education

15:35 are needed

15:36 in order to really meet

15:38 the needs of patients

15:39 with pancreatic cancer

15:41 in EPI recognition and treatment.

15:44 Wow, it sounds like

15:44 we learned quite a lot.

15:46 So what's next for this project?

15:47 Where does this research go from here?

15:49 How does it stand

15:50 to help patients

15:51 and families moving forward?

15:53 As the White Paper was published in 2025,

15:56 some of the next steps

15:57 that are kind of on the docket

15:59 include translating these recommendations

16:01 into actual clinical practice.

16:03 So it's great

16:04 that we wrote about it,

16:05 but now we need it to actually

16:06 move into action, right?

16:08 As well as educating care teams

16:10 and informing future research

16:12 on what gaps still exist

16:14 in what we can do,

16:14 potentially to help kind of bridge

16:16 those gaps.

16:17 The goal

16:18 overall is earlier identification of EPI,

16:22 more consistent access to enzymes,

16:24 and reducing those barriers to treatment

16:27 and ultimately better

16:28 symptom control,

16:29 nutritional status

16:30 for individuals,

16:31 and quality of life

16:32 for patients and families.

16:34 Impacted by pancreatic cancer,

16:36 particularly those with EPI.

16:39 Thanks, Shelby.

16:40 And again, I have to put a plug in

16:41 for PanCAN patient services

16:43 because we have the resources

16:45 and the materials.

16:46 We know what you all know from the,

16:49 the work that you did together.

16:50 And so we can help

16:51 patients, as you'll hear

16:52 more from Lizz Sanchez

16:54 and a little bit

16:55 about how we can support patients

16:56 with this issue.

16:58 So let's move

16:59 then, to our next panelist, Brooke.

17:02 So glad to have you with us today.

17:04 Your father was diagnosed in 2022,

17:06 and I understand

17:07 you've been his caregiver

17:08 right from the beginning.

17:10 It would be great to hear more

17:11 about your family's story.

17:13 Yeah.

17:14 Thank you so much for having me

17:15 as part of this panel today.

17:17 It is such an honor to be here,

17:18 and I'm so grateful to speak amongst,

17:22 you all

17:22 and on behalf of other care partners,

17:25 here on this journey.

17:25 So to share a little bit

17:26 about my family journey.

17:28 My dad was diagnosed

17:30 with pancreatic cancer in 2022.

17:33 And like many families,

17:34 it went from something is wrong to,

17:37 terminal diagnosis

17:38 that was completely life

17:40 altering for all of us.

17:42 He, his original prognosis

17:44 was 3 to 6 months.

17:46 So when you talk about a journey,

17:48 we're here

17:49 four years later, and,

17:50 you know,

17:51 might sound strange

17:52 to say

17:52 that we celebrate that,

17:53 but we do celebrate

17:55 each and every day that we have together

17:56 because we were faced with such a,

18:00 serious prognosis in the very beginning.

18:01 So,

18:03 we know what a life

18:04 altering diagnosis can do to a family.

18:07 Pancreatic cancer shows up

18:08 and it shows up loudly.

18:10 And so by the time we had the diagnosis,

18:13 our immediate action

18:14 was, what do we do to try to elongate

18:18 this?

18:18 You know,

18:18 how can we get the best care possible?

18:21 And so from day one,

18:22 I stepped in as that care partner

18:24 role, coordinating

18:25 all of his appointments

18:26 and going to every single, consult that

18:29 we had,

18:29 tracking everything

18:30 with him,

18:31 managing all of the side effects,

18:33 advocating for second,

18:34 third, fourth opinions,

18:37 translating medical language, actually.

18:38 So bringing my computer in

18:40 and making sure that he understood

18:42 what was being said

18:43 and making sure

18:44 that we were, again,

18:45 processing the information really well.

18:48 And then you know, doing

18:49 all of that

18:50 on top of a full time job,

18:51 I actually had to relocate to,

18:53 to care for him.

18:55 And, and

18:56 what struck me most

18:57 is just how disorienting

18:58 the diagnosis is for families.

19:00 And so that is something

19:01 that I don't mention, very lightly.

19:04 But also overnight,

19:06 we were expected to become

19:08 owners and experts in, pancreatic cancer,

19:11 which we,

19:12 you know, did not know much about before.

19:15 Since the original diagnosis,

19:17 my dad has celebrated,

19:19 93 chemo treatments.

19:22 And so 94, hopefully next week.

19:25 We've been

19:25 through a lot of different

19:27 variations of his treatment.

19:29 But he's also been able to.

19:31 I have a two year old daughter now.

19:32 So within those four years,

19:33 he got to meet his granddaughter.

19:35 And, she is literally

19:38 he is her favorite person.

19:39 So it's really amazing

19:41 to to know that he is still here

19:42 fighting every single day,

19:44 to to be here with us.

19:45 And we're fighting,

19:46 you know, right alongside him as well.

19:48 So that's

19:49 been a little bit of our journey

19:50 over the last four years.

19:52 Wow.

19:53 Well,

19:53 so glad that your father is doing well,

19:55 and he's lucky to have you

19:57 as his care partner for sure.

19:59 So given this long term treatment,

20:02 I imagine

20:02 your father's nutrition

20:03 needs have changed over time.

20:05 How do you approach conversations

20:07 about food and nutrition,

20:08 both with your father and his care team?

20:10 Yeah.

20:11 You know, it's it's interesting

20:12 because nutrition, we're not a family of,

20:16 you know, nutritionists or dietitian.

20:18 Shelby,

20:18 I wish we had had that in our family.

20:21 But we we had to take nutrition

20:23 very seriously.

20:24 So once the diagnosis happened

20:26 and, and,

20:27 you know, my dad had originally

20:28 his symptoms were that he

20:29 couldn't keep anything down.

20:32 You know, it was very

20:32 painful for him to eat.

20:34 And so we obviously he actually lost

20:36 almost 50 pounds initially within that,

20:40 the trying to figure out

20:41 what was actually really happening.

20:42 And so as you can imagine,

20:44 that was devastating to him.

20:46 So you talk about you

20:47 both have talked about fatigue

20:48 and kind of what, what's really going on.

20:50 And he was experiencing

20:51 everything you both mentioned.

20:52 And so,

20:53 in doing that,

20:54 I realized nutrition

20:55 was going to be critical

20:56 for success here.

20:57 And you obviously research a lot of that.

20:59 A big shout out to PanCAN

21:01 is that we got some pamphlets from them.

21:03 I actually used,

21:05 one of their,

21:05 you know, care partner,

21:07 social workers as well

21:08 to really try to understand

21:10 what in the world can we do here?

21:12 And so really early on,

21:14 we had had that discussion.

21:15 My dad was not interested in

21:18 eating to be quite honest,

21:20 and that was really challenging. So,

21:23 with pancreatic

21:24 cancer, eating isn't really simple

21:26 and most times.

21:27 So with the loss of their appetite,

21:29 the losing of the weight,

21:31 digestive issues, of course

21:33 fatigue, food was no longer

21:35 something that was

21:36 he was looking forward to with eating.

21:39 It was actually becoming very painful

21:40 and he just didn't want to.

21:42 So,

21:43 food was not and it was it was necessary

21:46 for, for us to figure out,

21:48 a real, you know, solve forward.

21:51 And so what we really did was discuss,

21:53 how can we move forward with that?

21:54 And honestly,

21:55 what whatever he wanted,

21:57 we tried to make for him,

21:59 to try to try to solve that.

22:00 I will say one element

22:02 that we discovered early on was Creon.

22:06 So how can he start to replace those

22:08 enzymes to make sure

22:09 that he is digesting things properly?

22:11 So he did add Creon, early on in his journey

22:16 to try to just get anything to

22:17 digest for him,

22:18 which was really beneficial, for our,

22:22 our nutritional,

22:24 aspect of, of the journey as well.

22:26 Thank you. Brooke.

22:27 Creon is one of the pancreatic enzyme

22:30 formulations that's available

22:32 for patients

22:32 who have exocrine

22:34 pancreatic insufficiency.

22:36 And it's one of.

22:36 The pancreatic enzyme replacement

22:38 therapies, or PERT,

22:39 as you heard from Shelby.

22:41 So you've talked, Brooke,

22:43 about all the things

22:44 that you've been doing with your father.

22:45 And I don't know how you do it,

22:47 but you also share your gifts,

22:50 as a volunteer, as part of our survivor

22:52 and caregiver network.

22:53 So you talk with many people affected

22:55 by pancreatic cancer

22:56 from all over the country.

22:57 What are some of your top

22:58 tips and guidance that you share

23:00 with everybody related to nutrition,

23:02 especially for fellow care, partners

23:05 out there? Yeah.

23:07 I will give another shout out to PanCAN

23:10 for the mentor program

23:11 that they have.

23:11 It's been,

23:13 really amazing to be a part of.

23:14 And my dad is a part of it, too,

23:15 which, we share that together.

23:18 And so if, if anyone needs

23:20 that mentor,

23:21 type of a relationship

23:22 or seeking advice from someone, please,

23:25 reach out to PanCAN

23:26 they will match you with someone.

23:28 But tips that I always share actually are

23:31 prioritize the calories over.

23:35 For my dad

23:36 it was getting the calorie intake.

23:38 So we

23:39 we really tried to do that over anything

23:41 that was perfection.

23:43 What we needed to do

23:44 was get him to eat anything.

23:46 So was it a smoothie?

23:48 Was it a protein shake?

23:50 What could he do to tolerate it

23:52 and get that in?

23:53 That's really, really critical.

23:56 Also, don't be too hard on yourself

23:58 if you are a care partner

23:59 or even a patient.

24:00 It's a journey together.

24:02 So understanding each other

24:04 and knowing that, yes,

24:05 a person

24:05 may not want to be eating right now.

24:08 I know there were times

24:09 where I was unfortunately forcing,

24:11 my dad to to eat things

24:13 just so that he could get

24:14 that calorie intake,

24:15 and he did not want to,

24:16 but we made it through.

24:18 And he did actually gain

24:19 all of the weight back

24:20 that he had lost, which was, incredible.

24:22 It happened over time.

24:25 But definitely

24:26 also ask about a dietitian.

24:29 So that was one of the thing

24:30 that I did immediately

24:31 when we I think actually

24:33 at our first appointment,

24:35 and we were down

24:36 actually in the infusion room

24:37 and a dietitian came to meet with us

24:39 because I was

24:40 adamant that we needed

24:42 to fix this nutritional gap that he had.

24:44 And so within that,

24:46 I created a meal plan.

24:47 And every single, you know,

24:49 breakfast is going to be

24:49 this many calories.

24:51 Your snack needs to be

24:51 this many calories.

24:53 I became a pretty obsessed

24:54 with making sure

24:55 that we could try to get

24:56 that caloric intake that he needed,

24:58 but again, not perfection.

24:59 So if it didn't happen, that's okay.

25:01 Try to fix something else in there.

25:03 I would also say that small meals are

25:08 and maybe more frequent

25:09 if they can, are more digestible

25:11 than really large big meals.

25:14 It was something that really helped us

25:16 as well.

25:18 Also trying to keep

25:19 something on his stomach

25:20 to try to, mitigate the nausea.

25:22 So also,

25:22 before he goes in for a chemo treatment,

25:25 make sure that he has,

25:26 nutritional breakfast

25:27 that morning

25:28 so that he's not having an infusion

25:29 on an empty stomach.

25:31 I would also say,

25:32 I know this was mentioned earlier, but,

25:35 we really try to keep hydration,

25:36 but then also the exercise piece as well.

25:38 So I know he didn't

25:39 he was very fatigued, but trying to

25:42 get some sort of exercise,

25:43 walking 5, 10, 15 minutes a day

25:46 just to try to get some things moving for

25:48 digestion was was really helpful for,

25:50 for him too.

25:51 So I know

25:51 that was a more than a few tips,

25:53 but I keep going.

25:55 It's it's just so, so important.

25:57 So I hope that that that is,

26:00 coming across.

26:00 And what I'm sharing.

26:02 It sure is.

26:03 Thank you.

26:03 Brooke,

26:04 thank you for sharing your family's story

26:06 and all of this great advice

26:07 and information.

26:09 Lizz, we've just heard from Brooke.

26:11 Patients with pancreatic cancer

26:12 often face unique challenges

26:14 related to nutrition.

26:15 So how can PanCAN patients services

26:17 help patients and families

26:18 with their specific needs?

26:21 Yeah.

26:21 So one of the great things

26:22 about being a case

26:23 manager is really meeting

26:26 patients and caregivers

26:27 where they are

26:27 and get to learn where they are

26:28 in their journey

26:29 to help

26:30 guide them in the right direction.

26:32 Although we're not medical

26:34 nutritional professionals

26:35 and we're not able to give a recommend,

26:38 any medical

26:38 or nutritional advice or recommendations,

26:41 we are able to talk about

26:43 general diet and nutrition

26:44 information that addresses

26:45 some of those common challenges

26:47 that patients experience, such as,

26:50 weight loss,

26:51 poor appetite,

26:52 and pancreatic insufficiency

26:55 to help guide those conversations

26:56 they may have with their healthcare team.

26:58 But since patients with pancreatic cancer

27:01 often have specific nutritional needs,

27:04 especially those

27:05 who have had pancreatic surgery

27:06 or are receiving treatment,

27:08 it is recommended for patients

27:11 to have access to pancreatic enzymes,

27:12 and they consult with

27:13 the registered dietitian,

27:16 a dietitian who is familiar with cancer

27:19 may be able to create a personalized diet

27:21 plan that is specifically

27:23 for pancreatic cancer patients.

27:25 And, we're able to provide patients,

27:28 with a high volume

27:29 pancreatic cancer dietitian.

27:31 So they need to locate one in their area.

27:33 We also have our incredible

27:35 identification booklet

27:36 that has so much information,

27:38 addressing some of those nutrition

27:41 challenges that patients may have,

27:42 as well as healthy

27:43 eating recommendations and meal plans

27:45 specifically for pancreatic cancer.

27:47 And our booklet is available

27:49 in a hardcopy or electronically.

27:51 And anyone interested

27:52 in receiving

27:53 a copy can contact

27:54 PanCAN Patient Services.

27:57 And we have the booklet available

27:59 in English as well as Spanish,

28:00 which is really fantastic.

28:02 So that's great, Lizz.

28:03 It's really that personal connection

28:05 and support

28:06 with a case manager

28:07 that often makes all the difference,

28:08 particularly for patients

28:10 who don't have a care partner

28:12 like Brooke in their lives.

28:13 And not everybody does.

28:15 So PanCAN really,

28:16 provides that additional support.

28:18 Thank you, Lizz.

28:19 Next, I'd like to do a round robin

28:21 with a few common questions

28:23 related to nutrition

28:24 and pancreatic cancer.

28:26 So, Dr. Hendifar,

28:27 let's start with you.

28:28 Patients who have gone

28:29 through major surgeries,

28:30 like the Whipple procedure,

28:32 often have specific nutritional needs.

28:34 What should patients be

28:35 thinking about after surgery?

28:38 So important.

28:39 So, after a Whipple, I would say

28:42 some of the major issues

28:44 for nutrition include,

28:47 the pancreatic enzyme deficiency

28:49 we discussed.

28:50 So of course,

28:52 when you have a surgery of the pancreas,

28:54 a lot of the pancreas is removed.

28:56 And in fact,

28:57 this was the original label for the FDA

29:00 for approving these enzymes

29:02 or for patients who underwent

29:04 pancreatic surgery.

29:06 And sometimes

29:08 I wouldn't say it's out of hubris,

29:10 but sometimes the surgeons are like,

29:11 oh no, the pancreas got reconnected.

29:13 Everything is working great.

29:15 You don't really need enzymes,

29:17 but I would always err on the side of

29:19 just taking them, because it's

29:20 sometimes really hard to know

29:23 if your weight loss

29:24 is coming from the enzyme deficiency,

29:25 because there's no real test

29:28 that you can check

29:29 that you can know for sure.

29:30 I think the other issue

29:31 after Whipple surgery

29:33 is, the pain and the kind of, you know,

29:36 you're you're tired,

29:38 you've been through a big,

29:39 major operation,

29:40 so it does take some time,

29:42 to get stronger,

29:43 to get your appetite back,

29:45 to be able to tolerate food.

29:46 A lot of patients suffer with diarrhea

29:49 after a Whipple surgery.

29:50 That takes some time to get better.

29:52 And the surgeons

29:53 are not going to like to hear this,

29:54 but this is between us.

29:56 It takes about a year to recover

29:58 from the Whipple surgery.

29:59 No matter what

30:00 anyone tells you,

30:01 it's a it's a long journey,

30:02 so be patient.

30:04 Don't be discouraged.

30:05 It just takes some time

30:07 and sooner rather than later,

30:08 you start to feel better.

30:09 Your appetite will come back

30:11 and your weight will return.

30:12 Thank you.

30:13 Let's let's probe

30:15 a little bit

30:15 more into the specific GI problem

30:18 diarrhea, because we've touched on it

30:21 a little bit today.

30:22 There's so many different reasons

30:23 somebody can have diarrhea.

30:25 Is it,

30:25 you know after the Whipple

30:26 and not getting hooked up

30:27 quite the way you used to be.

30:29 Is it due to pancreatic

30:30 enzyme insufficiency.

30:32 Is it due to the chemotherapy.

30:33 And it can be really hard to tell

30:35 what's causing it.

30:36 So what is important for patients

30:39 to communicate with their health

30:40 care team in this scenario.

30:42 So you can figure out

30:44 what's causing the diarrhea

30:46 so you can treat them the best.

30:49 Yeah.

30:50 Yeah.

30:50 So,

30:51 I'm going to again

30:52 get on a piece of paper and a pen

30:54 and write these things down.

30:55 These are what you should be asking

30:56 your doctor.

30:57 Do I have pancreatic insufficiency?

31:01 Do I have diabetes?

31:04 Do I have bile acid issues?

31:08 So there's a way that you can fix that.

31:10 Now this last one

31:11 is going to blow your mind

31:12 because we're studying

31:13 this right now is do I have SIBO.

31:17 So small intestinal bacterial overgrowth.

31:20 One of the most common patient groups

31:23 is patients who require PERT.

31:26 So if you're if you're pancreas

31:27 doesn't work

31:28 it's going to lead

31:28 to bacterial changes in the intestine.

31:30 That malabsorption

31:32 causes issues all the way down.

31:34 And it can cause bacterial overgrowth.

31:36 And we've known this for years.

31:37 But no one's ever made

31:38 the connection to pancreas cancer.

31:40 So we've been checking SIBO

31:41 in all our patients.

31:42 We're doing it on a study,

31:44 because we recognize that many patients,

31:46 many years after the Whipple,

31:47 will still have weight loss.

31:49 They'll still be losing,

31:52 nutrition.

31:52 They'll have vitamin deficiencies.

31:54 I mean, I even had

31:55 somebody who was vitamin

31:56 A was so long and so low,

31:59 they were having vision problems,

32:00 for God sakes.

32:00 And we realized like, oh my God,

32:03 they have SIBO.

32:03 Once the SIBO was treated,

32:05 they did so much better

32:06 and SIBO can come back.

32:08 So sometimes you have to check again

32:09 and treat it again etc..

32:11 So I think those are the four things

32:12 you should ask your medical team about.

32:16 One.

32:16 Do I have exocrine pancreatic

32:19 insufficiency and do I need

32:21 enzyme replacement?

32:23 Number two

32:24 do I have bile acid malabsorption

32:27 and do I need sequesterants prescribed?

32:30 Number three,

32:31 do I have

32:32 small intestinal bacterial overgrowth

32:36 and do I need antibiotics prescribed?

32:39 And lastly, do I have diarrhea?

32:41 That's from,

32:42 you know, post operative diarrhea.

32:45 And could I maybe use

32:46 some stool

32:47 bulking agents like psyllium fiber?

32:50 Wow. You nailed it. Thank you.

32:52 And you've taught us so much.

32:54 Oh, wonderful.

32:56 Liz, let's come back to you for this one.

32:59 What are some tips on balancing

33:00 new dietary needs while continuing

33:03 to make space for your favorite foods?

33:06 Yeah.

33:07 Balancing new dietary

33:08 needs after,

33:09 pancreatic cancer

33:10 diagnosis can be challenging

33:12 for some patients.

33:13 It doesn't necessarily mean

33:14 that patients have to cut out

33:16 certain foods.

33:17 Flexibility really is key here.

33:19 And prioritizing, lean protein

33:22 such as eggs, fish and poultry

33:25 and healthy fats

33:26 and tolerable

33:27 amounts such as avocado or nut butters,

33:30 and easy to digest carbohydrates

33:33 while still incorporating

33:34 some of those foods that they enjoy.

33:35 Eating in moderation

33:37 may be a way to maintain

33:39 those modified

33:39 nutritional goals

33:40 while still including some of their

33:42 favorite foods and cultural,

33:44 diverse foods. At the same time.

33:46 For that reason,

33:47 working with a dietitian is so important,

33:49 and as they can create a meal plan

33:51 that incorporates

33:52 the nutrition that they need while still

33:54 including some of their favorite meals.

33:57 Thanks, Lizz.

33:58 And Brooke,

33:59 I'm going to ask you

34:00 a slightly different question.

34:01 Since you've shared with us

34:03 some of the tips

34:04 you've already used with your dad.

34:06 But, you know, there's

34:07 so much about a pancreatic cancer

34:09 diagnosis that you can't control,

34:11 and food

34:11 is something that you can control.

34:14 So how do you walk the fine line

34:17 between encouraging

34:18 and being a cheerleader

34:20 and avoiding food,

34:21 becoming kind of a bone of contention

34:23 and an area of strife,

34:25 in your interaction with your dad?

34:27 Oh, man, I kind of wish

34:28 he was here to answer this question.

34:30 Hahaha.

34:34 Just because there are so many things

34:35 that were said,

34:37 between being a cheerleader versus,

34:39 of course,

34:39 and needing to get the right nutrition

34:42 and the caloric intake,

34:44 I think I alluded to this

34:45 a little bit earlier,

34:46 but it wasn't always fun,

34:48 to try to get that nutrition or to,

34:51 to really make sure that,

34:52 he was honestly eating.

34:54 And so what I would say, though,

34:55 we really tried to incorporate

34:58 I think Lizz just mentioned this, but

35:01 you need certain things,

35:02 but also you don't

35:03 have to cut everything out

35:04 and you can still try to enjoy things

35:07 that you did enjoy before.

35:09 So one thing that we did

35:11 is honestly anything he

35:13 that sounded good to him at the time.

35:14 So my dad loves meatloaf

35:16 and I'm not a chef

35:18 and neither is my husband.

35:19 But we were like, meatloaf? Amazing.

35:22 We'll find a recipe.

35:23 We'll do whatever you need.

35:24 We'll get it for you.

35:26 And I think, honestly,

35:27 that was one of the

35:27 like core memories

35:28 that we have is

35:29 because it was the first meal

35:30 he actually ate and tried to keep in and

35:34 and digest.

35:35 But to balance it, to answer

35:36 your question is really just trying

35:38 to have really open,

35:39 honest conversations about what is it,

35:42 what feels good, what's okay,

35:45 and what's necessary.

35:47 We're all of after the same goal here,

35:49 so how can we make sure

35:50 that we can try to get you what you need?

35:52 And I will also say

35:53 celebrate the small wins,

35:54 because I remember there was a time where

35:57 I think he finally was like, yeah,

35:58 oh fine, I'll drink the smoothie

36:00 that you made me and I. Yes, okay.

36:02 Thank you.

36:03 You know,

36:03 this is something that and he was able

36:04 to keep it down and able to tolerate it.

36:06 And so those are things

36:07 that I would say, again,

36:08 trying to balance

36:09 between the cheerleader

36:10 and the enforcer of

36:12 just trying to work together

36:13 and, and find something that is,

36:16 a happy balance

36:17 and then also something

36:18 that you can agree on,

36:19 but then celebrate it

36:20 if it

36:20 if you were able to tolerate it

36:21 afterwards. I hope that was helpful.

36:23 Great advice, Brooke.

36:25 Thank you.

36:26 So Shelby, let's come back to enzymes.

36:29 What would you recommend for patients

36:30 who think they may benefit

36:31 from pancreatic enzyme

36:33 replacement therapy?

36:34 Where should they start?

36:35 And what are some next steps?

36:37 I'd say first start just by opening up

36:39 the conversation

36:40 with your oncology care team.

36:42 If you're working with

36:44 a general medical oncologist

36:46 or your physician

36:47 is not specialized in treating GI,

36:49 but they treat all different

36:51 types of cancer care,

36:53 sometimes they don't know

36:54 about EPI, to be honest, and they

36:56 they may have heard of it

36:57 or read it in a textbook,

36:58 but they're not routinely

37:00 kind of treating and managing.

37:01 So we often see things

37:03 like under dosed

37:04 prescriptions with providers

37:05 that are not familiar with prescribing,

37:08 pancreatic enzymes.

37:10 So I'd say first, just start

37:11 by opening up that conversation,

37:13 asking the questions, ask about

37:15 if they're familiar with the EPI,

37:17 if they think

37:18 you you might kind of have EPI

37:20 or qualify to have EPI.

37:22 And if pancreatic enzyme replacement

37:24 therapy may be potentially

37:25 beneficial for you,

37:26 whether it's a short term trial

37:27 or whether it's moving forward

37:29 with more of a longer term

37:30 therapy with it.

37:32 A registered dietitian that specializes

37:34 specifically in oncology

37:35 care is a tremendous help,

37:37 and I'm a dietitian myself.

37:39 So, a little bit of bias there.

37:41 But also,

37:42 I know

37:43 the field that I work

37:44 in, there's

37:44 so many dietitians

37:45 that are incredible clinicians

37:47 that can really help assess,

37:49 help guide

37:49 dosing in the timing

37:51 of pancreatic enzyme, medications

37:54 and help

37:54 troubleshoot side effects just in general

37:56 throughout the cancer continuum.

37:58 So if enzymes are prescribed,

37:59 we also have to follow up on them

38:01 to make sure

38:02 that we don't need adjustments in dosing

38:04 or if there's any changes

38:05 to your diet pattern.

38:06 They're meant to be taken

38:07 every time we're eating our meals

38:09 and snacks,

38:09 which can be a misconception

38:11 depending on who you talk to.

38:13 So I do think it's important

38:14 to make sure that your team

38:16 has the expertise

38:17 and knowledge to prescribe

38:18 and follow up on your enzymes,

38:20 and if they don't, that's okay.

38:22 We can find somebody else

38:23 that may have that expertise

38:24 to better support you in this area.

38:28 Fantastic.

38:28 Thank you. Shelby.

38:29 So Brooke, we've covered a lot of ground.

38:32 Last question,

38:33 drawing from your volunteer work

38:34 and your role as a care partner,

38:36 how can families advocate

38:37 for better nutrition support?

38:39 What are some ways

38:39 to approach these conversations?

38:41 Any kind of final thoughts here?

38:43 Yeah, absolutely.

38:45 One thing I want to just say is that,

38:48 family members or care partners,

38:49 you are an essential member

38:51 of the care team.

38:52 So advocacy is critical to success.

38:55 And and please know that I

38:57 you if if you if a patient

38:58 can advocate for themselves

39:00 please help them advocate.

39:02 It's really, really, really important.

39:04 Sometimes nutrition can feel secondary

39:06 to the actual treatment.

39:07 So chemotherapy or scans

39:09 or those results.

39:10 But nutrition is foundational.

39:13 And that's one thing

39:13 that we continue to go back to.

39:16 You need nutrition for strength.

39:18 And that determines resilience

39:20 for the patient to be able to to fight.

39:23 So I would say advocate early advocate

39:26 as much as you can ask for the dietitian

39:29 that was not something

39:30 that was given to me.

39:31 I had to ask for that.

39:33 So glad that I did.

39:35 Ask about the enzymes.

39:37 So that's really key.

39:38 I think that's been a common thread

39:40 throughout today.

39:41 So but ask about that

39:42 and make sure

39:43 that you can get ahead of it

39:44 if, if you can. Or on top of it.

39:47 Pancreatic cancer moves quickly.

39:49 So anything that you can do proactively

39:50 to support really matters.

39:53 I would say that

39:55 above and beyond everything else,

39:58 the greatest gift

39:59 that you can have together

39:59 is a partnership.

40:00 So with your dietitian,

40:02 with your care team, doctors, physicians,

40:04 and obviously the patient

40:06 and the care partner as well,

40:08 families,

40:09 you don't have to carry this alone.

40:10 So remember that you have others

40:12 to, to care with you.

40:13 And again, I think that the pain can

40:14 is an amazing resource for that.

40:16 And so again, you're not alone.

40:19 And, and we're all here to, to help you,

40:22 get through this.

40:23 So that's what I would say.

40:25 Wonderful. Thank you.

40:27 Thank you all for participating.

40:28 This was a great conversation.

40:31 Really, really. Thank you.

40:33 Thank you so much to

40:34 our incredible panelists

40:36 for taking the time

40:36 to share your insights

40:38 and expertise with us today.

40:39 This has been such a great conversation.

40:42 We covered a lot of ground,

40:43 so please get in touch

40:44 with PanCAN Patient Services

40:46 for more information on any of the topics

40:48 we discussed.

40:50 Our team provides

40:51 free support and resources

40:52 to help patients and caregivers

40:54 navigate any questions

40:55 related to pancreatic cancer.

40:57 Contact PanCAN Patient services

40:59 and a case manager can help you.

41:02 I'd like to take a moment

41:03 to thank our partners and sponsors.

41:04 Thank you to our leading

41:05 national partner, Revolution Medicines.

41:08 Thank you to our national education

41:10 partner, Ipsen.

41:12 And thank you to our webinar

41:13 sponsors, AbbVie,

41:14 Eli Lilly, Immunoavia, and Endevica Bio.

41:19 And thank you to our Scientific

41:20 and Medical Affairs

41:21 industry champions, Astellas, Immuneering,

41:24 Ipsen, Novocure, Partner Therapeutics,

41:27 and Revolution Medicines.

41:29 Also, a very

41:30 special thank you to all our donors

41:32 joining us today.

41:33 All of the research we fund

41:35 and the comprehensive support

41:36 PanCAN provides to people

41:38 facing pancreatic cancer

41:39 is only possible because of you.

41:42 Thank you.

41:43 And don't forget PanCAN Purple Stride.

41:45 Our biggest community

41:47 event of the year

41:47 is just about a month away on Saturday,

41:50 April 25th.

41:51 It's a day of hope, inspiration and fun

41:54 and every dollar raised is a step toward

41:56 a cure.

41:57 Register for free at purplestride.org.

42:01 Thank you all for tuning in.

42:02 A recording of this webinar

42:04 will be available

42:04 if you want to watch it again

42:06 or share it with friends and family.