The format is wrong on the papers from New Orleans, shall redo ASAP. Susan, May 10, 2005

MRS. LEIGH ANNE BURNS, Instructor of Clinical Medicine, Section of Nutrition:

 
The Role of Diet and Nutrition in Carcinoid Patients

                                                       

      I want to thank you-all so much for having me speak today.  This is

 

exciting to speak to so many people.  I have really enjoyed taking care of the

 

patients that I have seeing of Dr. Anthony's over the last two years with

 

carcinoid cancer.                          

 

      Today we're going to concentrate on involuntary weight loss that is a big

 

complication of the patients that I see in our practice and in many of the folks

 

who are here in the room.  When we get to those questions if we have questions

 

on general nutrition, I'll be glad to take those then.

 

      Using a multidisciplinary approach to reducing involuntary weight loss has

 

become a true asset of practice for us at LSU.  We have banded together as a

 

team of nurses, physicians and dieticians to stop involuntary weight loss as

 

quickly as we can in patients that we work with and maintain the quality of life

 

of those patients while they're going through treatment. 

 

      Involuntary weight loss is any unintentional weight loss that you might

 

have from disease.  Carcinoid may affect many of the organs that we need to be

 

able to metabolize and absorb calories and proteins.  When these are injured,

 

involuntary weight loss occurs.  So what we do when we go through our decision-

 

making process is first decide who's at risk for involuntary weight loss.  What

 

are our meaningful in-points? 

 

      Where are we trying to get?  When should we intervene?  Why do we need a

 

three-phased approach that we've taken in the past?  Because as many of you may

 

know weight loss in oncology has been seen in the past and is not unusual nor

 

do many people approach trying to stop it to the degree that is needed.

 

      How important is it to stop it?  Can we reverse it?  Is it important to

 

add functional weight in the muscle mass so that we can adequately increase

 

the strength and your performance status near the time of your treatment, in

 

treatment, and after it? 

      Studies done in weight loss date back to the 1930s show that surgical

 

outcomes in particular have involved weight loss among patients in the hospital

 

setting and post-op.  This was picked up again in the 1970s by Dr. George

 

Blackburn who spent many years of work in the nutrition support area with

 

physicians, nurses, and dieticians such as myself to stop hospital patients'

 

weight loss. 

 

      What are the implications of the weight loss?  Is it just the physical

 

appearance?  Not really.  What weight loss does is increase the risk and

 

complications of death and their treatment response, hospital length,      

 

rehospitalization, and also the part of the maze that we're working on these

 

days is the quality of life factors and helping patients with self-appearance,

 

quality of life, and satisfaction with care.

 

      The first thing the healthcare team needs to do in carcinoid is identify

 

weight loss seriousness.  So I'm going to go through some research in a few

 

minutes about general oncology patients and weight loss.  But carcinoid's a

 

little bit different and many of you might know this much better than I. 

 

      Carcinoid cancer is associated with a slow decline in weight and not an

 

acute weight loss.  There are studies that have been done with 3,047

 

chemotherapy patients with advanced cancer.  They found poor performance status

 

or ECOG performance statuses.  Patients with low performance status have less

 

ability to function and that most have a weight loss greater than 5 percent in

 

six months.

 

      Consequences of this weight loss are the shorter survival, decrease

 

response rates, toxicity increased and decreased of quality of life in patients.

 

      Carcinoid cancers by their nature affect your endocrine system directly or

 

indirectly.  One way is by interfering with nutrient intake and absorbtion. 

 

This results from increased metabolism, increased stress or decreased

 

absorbtion. 

 

      Contributing factors include lack of appetite, an impairment that prevents

 

you from taking food in, or things like an actual bowel obstruction or small

 

bowel resection which limits your absorption of nutrients. 

 

      Chronic malabsorbtion and diarrhea are the most common problems I see

 

among my patients, causing reduced performance status.  In times past, people

 

just say diarrhea, but we don't get the idea of what was causing it or that we

 

can help you with it and stop some of the side effects associated with it.  But

 

some of the problems are natural decrease or inactivity of the pancreatic

 

enzymes.  Pancreatic enzymes break down not only fats but also protein and

 

carbohydrates in your body.  It's important that you have enough pancreatic

 

enzymes to be able to help with your digestion in the small intestines.

 

Octreotide can cause this.

 

      Many times we have malabsorbtion or just not enough pancreatic enzymes

 

present as a result of the damage of the disease, requiring us to supplement the

 

pancreatic enzymes.  It is important that these enzymes are taken with food. 

 

The timing of these things will make a big difference.  Another reason for

 

diarrhea is the location and length of the bowel resection, which may lead to a

 

deficiency or inactivation of the bile salts.  Short bowel syndrome which is

 

probably one of the biggest causes of the weight loss among patients that have

 

had multiple short bowel resections. 

 

      Hypoalbuminia.  It's your albumin that is the protein marker in your body. 

 

Many times diarrhea results from a low protein status and not necessarily from 

 

fat malabsorbtion.    

 

      Medication induced diarrhea may result from a high osmolality -- a example

 

is a highly concentrated cough medicine going into the small intestine can cause

 

diarrhea.  Also some of the medications that we know help with many of the

 

symptoms associated with carcinoid such as Sandostatin causes  malabsorption of

 

fat and diarrhea (steatorrhea).

 

      We're going to talk more about special screenings that we're using in the

 

clinical areas now.  But critical weight loss is one of the biggest categories

 

that put you in touch with the dietician because these things are directly

 

related to the outcome.

 

      Proteins.  Proteins carry medications to different areas of the body. 

 

Some problems are related to just getting the medicines where they need to be in

 

the body.  This is a very important nutritional screening marker. 

 

      Cholesterol levels.  We talk about cholesterol levels as being too high. 

 

We usually hear high and everybody wants to worry about where the level is

 

and keeping it from going too high.  But in malnutrition, we look for low

 

cholesterol level.

 

      Less than 160 is usually a sign of malnutrition and becomes important

 

marker for us in the area.

 

      It is important to monitor weight change time.  This is very, very

 

important.  It doesn't matter if you weigh 250 pounds and you're 5 foot 10,

 

which would put you overweight.  If you lose -- If you've lost 30 pounds in 6

 

months, it's significant.  It no longer matters that you were overweight. 

 

You're very much at risk for malnutrition, and it's very important that you get

 

taken care of as a patient for malnutrition and that you're not seen just as an

 

obese patient. 

 

      We do a complete height and weight and nutritional assessment.  If someone

 

has lost greater than 2 percent of their body weight in a week, then something's

 

usually going on.  If it's greater than 10 percent in 6 months, then someone

 

needs to intervene.  

 

      Some of the patients in my practice have been overweight and they were

 

fine for the first 30 or 40 pounds that they lost.  They now looked better and

 

feel the weight loss really isn't a big problem, until their proteins decrease

 

and their albumin is also dropping.  They may not even have approached seeing a

 

dietician because actually that's malabsorbtion wasn't causing them actually

 

self-appearance problems it actually was promoting some of the things they may

have been trying to do all their life in weight loss.  So they actually liked

 

the weight loss. 

 

      But in carcinoid cancer, as in any of the oncology areas, we do not advise

 

that you try to lose weight during treatment.  We try to stop this.

 

      One of the biggest problems we've had with weight loss is also every time

 

you're going to lose weight, you're going to lose lean body mass.  So what

 

we try to do is find simple ways that we can identify problems and stop them

 

when patients come to the office.  The best screening tool is to make sure that

 

someone weighs the patient every time they go to a physician.  Sometimes if

 

patients go to the doctor weekly or monthly they may just walk back to a chair

 

and see a nurse and not necessarily go through the full physical. The patient

 

may not get weighed.  So it's very important that we weigh you every chance we

 

get when you're coming into the clinical setting.

 

      When we talk about losing lean body mass, it means that you're going to

 

lose muscle mass.  This muscle mass is a very important part of your body

 

system and it's something that we really try hard to maintain.  This loss of

 

lean body mass is very much associated with compromised outcome.

 

      What do we talk about when we talk about lean tissues?  These are skeletal

 

tissues, the muscle that you build in your arm, and also smooth muscles that you

 

may not see.  These are your organs.  It's very important that you know that

 

some of these lean tissues that you're losing even if you like the weight loss

 

it’s not good.  Because you're also going to lose the normal function of many

 

of your organs. 

 

      Visceral protein is very important because it transports proteins to other

 

parts of your body.  These proteins also make your diaphragm and involve your

 

breathing.  

 

      What enzymes?  Enzymes break down food for digestion.  One of the first

 

things that get damaged is normal cell function of these enzymes when someone

 

starts losing lean body mass.

      Also our antibodies fight infection and are also reduced as well as the

 

growth factor. 

 

      Your extremities and your trunk.  Lean body mass.  If you lose it, you

 

have increased fatigue, decreased activity, increased bed rest, increased risk

 

of deep vein thrombosis and pulmonary embolism and risk of decubiatus.

 

      Decrease in visceral proteins affects your diaphragm and respiratory

 

muscles causing increased work breathing, inability to cough, the ability to

 

clear secretions are all decreased when you've had a decrease in lean body mass. 

 

So although you may have lost weight and that not bother you, actually you may

 

have some of these other symptoms from the decrease in just the lean body mass.

 

      Some of the other tissues are the stomach.  Decreasing gastric emptying,

 

increasing nausea.  Fats digest last from your stomach and can cause nausea.  So

 

many times it's these delays in emptying will actually contribute to many side

 

effects. 

 

      Decreased intestinal motility, or short bowel synrome, decreases nutrient

 

absorption.

 

      And then the biggest tissue that we have and we're worried about is

 

probably the heart and our blood vessels and that's the loss of cardiovascular

 

response and debility.  And heart damage is seen in involuntary weight loss. 

 

      Simple starvation versus catabolic weight loss.  In most areas of oncology

 

we see catabolic weight loss.  But in carcinoid, we see simple starvation and

 

catabolic starvation.  So we have quite a combination of the two going on. 

 

Simple starvation is when we have a metabolic adaptation.  This is what people

 

that may go through a desert and be left without food can live for a longer

 

period of time because your body will actually drop the amount of calories it

 

needs in a day.  As a way of conserving energy, it's not going to use it.  So

 

that your body adapts; it doesn't need as much anymore.  It actually will

 

conserve the lean body tissue so that you don't have the wasted look.    

 

      That's what's in a carcinoid patient or people that I see often in

conserving people's health.  They've been fine for many years, but then there's

 

an insult of some type, an infection, a surgery, something that's going on

 

that's injured something, and then now we have a catabolic weight loss.  That

 

means there is no adaptation; your body is just going to continue to need higher

 

and higher calorie amounts and you're going to break down that lean tissue.  It

 

continues despite the nutrition, the nutrients that we take in.  That's because

 

of this injury to our metabolism.

 

      And it's -- when we go to case studies, I think you'll see what's really

 

interesting because this albumin marker that I've talked about as being real

 

important as an indicator of malnutrition, in a simple starvation, it will show

 

normal; it'll stay normal.

 

      Good clinicians that are trained to use it will say: Well, that albumin's

 

okay.  They're okay.  Because it stays okay.  It's held its own even though

 

you're losing weight.  But as soon as you have injury, this can drop very

 

rapidly in a Carcinoid patient.  When it drops, many times that's when you're

 

going to see the side effects of edema, the swelling in your feet and your knees

 

and throughout the rest of the body.  Those are related to this albumin and this

 

protein factor. 

 

      We've talked a little bit -- I've told you a little bit about the colon,

 

the catabolic features, the different types of hormones, burns, long ago

 

practice, surgery.  We talked about extensive abdominal surgery that Dr. Frey

 

talked about and interventions.  These are going to increase your catabolic

 

weight loss.  Infection.  Any infection that affects the system, if you have

 

infection, it's going to increase and may put you into some type of catabolic

 

weight loss.  And then the multifactoid etiology such as cancer, COPD.

 

      Well, how do we work with this?  Well, we do it in our facility as an

 

integrated strategy, each of us just taking parts of the puzzle and working with

 

it.  So that we can take our nutrition therapy, do some exercise, and some

 

meditation so that we can provide an optimal body composition and for the

physiological function to come back. 

 

      One reason we have to do this is when we think about -- we need to rethink

 

our bodies.  We found out that nutrition alone doesn't necessarily work.  And

 

medications alone don't necessarily work.  And if you don't keep that body mass

 

up, then we're not able to get the responses we need.  And that comes from some

 

type of exercise or function that's within your day to promote those muscle

 

builders for the muscles to stay healthy. 

 

      So what we do first is we're going to put together a plan of action.  And

 

this is going to be our endpoint.  It's: what do we want for weight and body

 

composition?  Our strength.  Before, we said appetite and quality of life. 

 

These are the objectives and what we're trying to work with and how we're going

 

to get there is through nutrition, meditation, and exercise.

 

      Here are some of the interventions that we use.  We want to -- first we

 

take in the assessment, what your age may be.  Caloric needs are different

 

according to your age.  And primary diagnosis, any other kind of differences. 

 

Just like anything else, you may have complication of Carcinoid cancer, but you

 

may also be diabetic or you may have other kinds of medical problems that we'll

 

have to take into consideration to make sure we're giving you something that

 

actually is going to benefit you in the long run.

 

      Your weight loss history is very, very important because all before -- I

 

need to know what percentage you lose in a certain length of time, that that's

 

very relevant to how we're going to treat you and how we're going to rebuild. 

 

When fluid is lost and a tremendous amount of weight, you can't refeed them

 

real fast.  You have to do it in a slow process or we can possibly do more harm

 

than good.  We can even cause somebody to have a heart attack if we do this

 

wrong.  So knowing how long you've taken to lose this weight, no matter what

 

your weight is, is very important for us.

 

      Many people have symptoms: diarrhea, vomiting.  Some of the complications

 

are fullness, no appetite.  When we're looking for loss of muscle and loss of

fat, you may have maintained some fat stores, but for the patients that have

 

done this for a long time, you may be down to where you really have very little

 

fat stores left.  You may actually showing signs of lean body mass that are

 

almost to where there's no appearance of fat.  It happens very quickly

 

especially to someone who wasn't real active before, didn't have a lot of muscle

 

mass previous to the diagnosis of carcinoid or cancer. 

 

      And then we're going look at the lab abnormalities.  We look at glucose to

 

see if you're tolerating.  We're going to look at the liver function.  We’re

 

going to look at calorie and protein needs for your system.  So there's many

 

aspects in trying to decide what we need to use when we get started with this. 

 

      We like to tell you things that are going to limit the weight loss –

 

reverse or limit any stressors.  First we've got to stop what is causing the

 

fever.  You've got to get to the bottom of everything that's causing this weight

 

loss in order to do a better job of correcting the weight loss and so we get you

 

on the right track. 

 

      This is where I talk about what I do now.  Oncology as a nutritionist is a

 

specialty just like you have physicians and you've seen physicians that are

 

specialists in different areas.  Not all dieticians are trained to take care of

 

cancer patients.  Some of us specialize in diets that are diabetic controlled,

 

diabetes.  Some of us specialize in hypolipidemia or cardiovascular areas.  And

 

some of us specialize in nutrition support.  And that is critical care work. 

 

      So those of us that have these specialties work in accordance with

 

standards of care that are put out for us by these programs.  One of them is

 

ASPEN, the American Society of Parental and Clinical Nutrition.  These standards

 

help us do a better job of taking care of patients in a very systematic

 

approach.

 

      They assist in development of the nutritional plans and establish

 

maintenance goals and approaches to use and monitor the effectiveness of these

 

goals. 

 

      These things are very important in knowing how to choose a dietician as

 

well as any other area of the field.  Some of the things that doctors' offices

 

have used in the past to do this are some screening tools.  And some of you

 

might not have been screened, and I hope that some of you have been screened. 

 

      But some of these in the past have been the common toxicity criteria. 

 

We'll just look at weight loss.  It didn't particularly look at the time factor,

 

just weight loss in general.  The PSSGA is a very good tool to help monitor

 

weight loss over time.  And it also takes in some other factors that will give

 

you a reading of "No nutritional needs," "Mild," "Moderate," or "Severe," "Life

 

threatening." 

 

      There's no reimbursement for a nutritionist in oncology yet.  There's not

 

a third-party payer for it yet.  So if you have a dietician in your office,

 

that's a real luxury. 

 

      Probably one of the best training forms for the elderly is Determine

 

screening tool.  Now, this one goes very extensively into weight loss, and also

 

goes into the social aspects such as, if you eat alone, how many meals do you

 

eat alone?  Do you eat three different meals?   They're not going to go just

 

through the questions of weight loss.  They deal with many aspects and they also

 

cover the lab and the albumin and those things that I talked about previously. 

 

Very effective tool.

 

      Nutritional therapy is a very important skill and it is an up and coming

 

skill.  What registered dieticians do is evaluate the individual's needs and

 

prepare their care plan so that we can identify the bowel absorbtions, deal with

 

the diarrhea, help determine if the diarrhea is caused because you don't

 

tolerate fats, if the diarrhea is caused because you have short bowel syndrome,

 

if the diarrhea is caused because you don't tolerate fiber, or is it because the

 

Sandostatins make you go fast.  So we're going to be looking at these aspects

 

and along with what causes you not to have an appetite.  We may have to give you

 

something that really could work.  

 

      Sometimes the patients come in to see me and it seems like the doctors and

 

everybody's telling them something different so they're a little bit confused or

 

just not too sure I'm doing anything different.  One way of doing this, one

 

example of this, is we put together meal plans for you and your family.  And I

 

have known you're malabsorbant, and you maybe lack several vitamins, and you may

 

have had diarrhea for a long time, and I may want you to get some things on

 

board.  But instead of saying: You need 15 milligrams of these a day.  I'm going

 

to say: Can you eat eggs? 

 

      I'm going to give you a source of that nutrient that I want you to build

 

back in, and I'm going to tell to have that food instead of giving you a lot of

 

numbers and saying things that may confuse you, or give you specific nutrients

 

because people tend to go to the pharmacy and start buying bottles of these

 

things instead of trying to eat the foods themselves.

 

      So if it sounds as simple as: Well, should I go in there?  And the only

 

thing she told me to do is I eat an egg every day.  We don't want to overload

 

you with information.  We don't want to confuse you, but we really look at

 

things that are going to make it easier for you.  And if you're going to stay in

 

with a diabetic diet counseling meal, you'll appreciate the fact that I don't

 

have you measuring everything and giving you the exact amount of everything. 

 

All I'm going to do is try to give you things that you can eat in a time that I

 

think you can do the best with after you do some things for me such as what I'm

 

going to talk about next: Use the tools that I have from the assessment, give me

 

a record of what you eat, when you eat, when you have a bowel movement, and so

 

that I can get a better picture, what you’re absorbing.

 

      I can't assume that any two people in this room are going to eat the same

 

food or the same amount of calories or get the same amount of protein in a day. 

 

The only way I can do that is follow the necessary nutrients themselves and

 

seeing.  But we're like calculators.  We look at milk  and we think of in terms

of calories.  And we look at milk and we think 8 grams of protein.  We're not

 

looking just at a white substance in a glass.  So we're trained to do a little

 

bit more than we actually let on that we do.

 

      Because the medical and surgical history is extremely important, we have

 

to go back and look at this.  We need to get as close as we can to finding out

 

what part of the bowel has been resected because it plays a big part in a

 

malabsorbtion and what nutrients that you need to have replaced daily, and some

 

things that may have to be injected such as B-12 because you know that you're

 

not going to get enough of this because of the surgery that you've had.

 

      When we start we're going to estimate how many calories you need daily. 

 

And it is a guesstimation and I'm going to go through how we get to that

 

guesstimation in just a minute.  If estimating calorie needs, we're going to say

 

how far out of surgery you are because if you've had surgery, how many calories

 

you need in a day goes up.  Your metabolism is going to increase.  If you have a

 

metastatic disease, if it's a disease of a specific organ, it's going to make a

 

difference in the types of carbohydrates that you tolerate and the amount I can

 

give you at one time, also the protein and catabolic needs in a day is going to

 

increase.  And then the type of tumor.  So all patients with different types of

 

cancers and tumors don't always lose a lot of weight.  So knowing the type of

 

cancer and the type of tumors that we are treating makes a big difference. 

 

      In a normal individual, your calorie needs are about 25 calories per

 

kilogram of body weight.  In carcinoid cancer and in as well many of the

 

cancers, this need increases to 35 calories, 35 to 45 calories per kilogram of

 

body weight.  It's very important to know how many calories you need in a day.

 

      Many people are used to eating the same way they did all their lives.  And

 

if you weighed 140 pounds and you ate about 2,000 calories a day, you probably

 

maintained your weight just fine all your life.  Then you have an injury such as

 

this and these tumors, and all of a sudden I know that you're going to gorge and

 

your body's going to need about 2800 calories a day.  If you're not used to

 

eating that much, that in itself is a complication.  It's a problem.  You're

 

just not used to these high loads of calories in a day.

 

      We just say medical weight loss.  I put this on here because I do think

 

it's important for people to know.  3500 calories is equal to 1 pound of weight. 

 

I'm probably going to calculate present intake and add 500 calories a day to it

 

because if I could add 500 calories a day to what you're able to absorb, not

 

necessarily take in, then in seven days you're going to get 3500 calories;

 

right?  And you're going to gain a pound. 

 

      That's one of the steps I use in trying to increase a patient’s weight,

 

trying to stop weight loss, is in increments of 500 calories a day.  If I put in

 

500 calories and I still haven't seen weight production, then I know I've got to

 

go up further.

 

      Protein requirements.  Protein requirements are normally recommended to an

 

individual that has not had any problems of limitation or disease.  It's around

 

.8 per kg/body weight.  But in this area of practice, it will go from 1 gram to

 

1.5 if your albumin is still holding normal, around 3.5 or a little less.  But

 

once it decreases to less than 2.7, these requirements are increased to 1.5 to

 

2.5 per kilograms of body weight.  And the other thing that's real important to

 

remember is that when you increase protein, it increases the risk of

 

dehydration.  So if you're taking protein supplements that someone's given you

 

from the health food store to try to help yourself and you're not getting enough

 

fluid on board or you're having trouble with dehydration in the first place,

 

you're only going to complicate this.  So we have to be very careful with

 

increasing protein levels in patients.

 

      I know you're familiar with a bowel resections and probably pancreatic

 

enzymes, but the “Blind Loop Syndrome” is where you've been on antibiotics for

 

a long time and it's wiped out the system.  And the bacteria make an overgrowth

 

of the lower part of the intestine and that in itself can cause diarrhea.  So a

 

long-term antibiotic and sometimes therapy can cause this.  We need to look at

 

those factors.  So there's things we can do about it and we need to know that

 

that's what's causing it.

 

      The other thing I hear that I think is very important -- we talked a

 

little bit about medication -- but it's herbs in all kinds of therapy.  These

 

things can be very controversial in treatment and no research at this time has

 

shown that these things are of any benefit in this arena. 

 

      My biggest problem with them is there's no one that watches over it, no

 

FDA approval for any of the herbal remedies out there.  And we know that in

 

therapy we can have interaction and many of the problems we've had with bleeding

 

and interactions with medications, these are all related to herbal remedies.

 

And until we see that these things are really beneficial and there's been

 

research on them, I do not recommend the use of these.                                        

 

      But I need to know if someone's doing it because it really does relate to

 

diarrhea and because some of these things actually do induce it.  One of the

 

favorite things that people used to like to drink for diarrhea is aloe juice. 

 

And aloe juice is something that causes diarrhea so we have to be real careful

 

with its use.

 

      A nutrition invention.  Six to eight small meals a day.  I have patients

 

eat six small meals a day because this is very important.  Because in this

 

arena, you have to have enough enzymes to digest what you're taking in and it

 

cannot take in a lot at one time.  And there's also notes from previous works in

 

this field that large feedings are associated with the symptoms that you have

 

with a crisis. 

 

      Fat.  First of all, there's different types of fat.  Some fats are going

 

to cause you more complications than others: long-term fatty acids.  These are

 

the things like salad dressings and margarine.  They're broken down in the

 

system and absorbed through the liver.  And these things, many times, aren't

 

tolerated well.  But we do not recommend a low fat diet; we don't do that

 

anymore because we actually need fats for calories.  So we do allow fats.  We

 

want to encourage them but in moderate amounts.  But we can add pancreatic

 

enzymes to help with absorption.  There's another type of fat called medium

 

transcarglyceride.  And this product is in a lot of the supplements that we

 

give, because it does not have to be absorbed through the liver.  So this has an

 

advantage.             

 

      Fiber.  Some people tolerate fiber very well.  Well, actually, there are

 

two types of fiber.  Insoluble fiber is the type that does not digest and builds

 

the bulk of your stool and it's in the part of your vegetables that doesn't

 

digest, the skins on the beans, potato skins.  This is insoluble fiber.

 

      Sometimes these things are tolerated in patients.  And if you're not

 

having complications of weight loss, this is something that we want more

 

patients to use because it helps with some of the constipation problems that we

 

might have from medications.  So these fibers are used when we can.

 

      When you increase fiber, you also have to increase water.  So remember

 

that if you have a high fiber diet, you need a lot of fluid.  Again, contributes

 

to dehydration if you're not able to take this amount of fluid in the day.  Be

 

careful of high fiber.

 

      The other type of fiber is soluble fiber.  It absorbs in your body.  It

 

can actually help the reabsorbtion of water. 

 

      Carbohydrates.  There are different types of carbohydrates.  Complex

 

carbohydrates or starches give you the best energy source for a longer period of

 

time.  It doesn't use or contribute to the dumping syndrome that our patients

 

have experienced.  Soluble rice formula which is starch, a longer more complex

 

chain.  And it also increases the absorption of hydration better than any other

 

products do. 

 

      But simple carbohydrates are Coca Colas, sucrose, table sugar, or even

 

fruit sugar from a lot of juices, these things really can cause more diarrhea in

 

patients than actually do any good.  If you can tolerate it, fine.  Use it.  But

 

if you happen to be drinking apple juice every day and you have diarrhea every

 

day, at least use half strength of it; dilute it or try to take it out because

 

it really will make a difference.

 

      Proteins are very important.  Proteins in our regular diet, some of them

 

are absorbed better than others.  Red meats, some patients just don't do well

 

with this type. 

 

      Its good to use Enteral products that we give you.  Try it.  We want you

 

to give them a chance.  Now, I will say that the favorite thing that put people

 

on this super Ensure is that's very high in sucrose and, I might comment, is not

 

tolerated well by carcinoid patients.  It's necessarily a good product for them. 

 

      And if we find that you are not tolerating much at all and you have a lot

 

of diarrhea, I would usually use an elemental type product, means that

 

everything is broken down already.  You don't need the enzymes to break it down

 

and it absorbs directly into the intestines.  And these products have been very

 

useful in the patients that I have seen in my practice.

 

      So we haven't done tube feeding in this arena, but we do know by history

 

that there is quite a bit of benefit in small bowel syndrome if we put a tube in

 

the jejunum and just fed a little slow drip feeding of one of these products

 

around the middle, we get really good results and we really do make a difference

 

in weight gain.  But that hasn't been used in this arena quite as much as we

 

do in regular short bowel syndrome. 

 

      And then we can consider keeping in parental nutrition if your body

 

doesn't perform or quality of life warrants that.  And that is kind of a new

 

arena but it has been used very successfully. 

 

      I said it was a three-part thing, so I'm going to go through real quickly

 

what our meditation intervention can be and has been very helpful for us

 

especially in cases that had some anorexia and just had no appetite or they were

 

losing weight. 

 

      First of all, we started and was used previously more than it is now were

 

the corticosteroids.  They did increase especially in very extensive, but they

 

did increase muscle catabolism and we really did not see much weight gain with

 

their use. 

 

      Antiemetics have been used in practice especially with patients receiving

 

chemotherapy.  But again, we saw very little weight gain and it also has other

 

effects on the central nervous system that -- so it's not used very much in

 

practice -- as much in practice now.

 

      The progestitional agents, you have probably been exposed to some of

 

these.  They were used for an appetite stimulus and they're pretty effective. 

 

They can make you really, really hungry.  But what they haven't shown to do is

 

to make you increase in your lean body mass.  The weight gain is primarily fat

 

and it also has other problems in it and hormonal effects.  But it has increased

 

quality of life, so we have used it and continue to use it effectively in

 

practice.

 

      And the last one is the one that we're using more in our practice and I'm

 

real excited about it because we're actually seeing some success.  We're hoping

 

that this will be a practice that we can use and that is the anabolic agents. 

 

And it increases the lean body weight, increases nitrogen retention, increases

 

muscle synthesis, and increases quality of life for its statuses.  Now it does

 

have its side effects.  Some patients may not be able to use it because it is a

 

hepatic metabolism and it has some fluid retention associated with it.

 

      Activity.  Light activity or moderate activity is needed daily.  Some

 

light weight resistance -- a two-pound weight, something light, nothing too

 

strenuous but something that gives that muscle some work.   These are very

 

helpful in building back the muscle.  But also remember that overexertion can

 

lead to increased weight loss.  I don't want y'all running around and burning

 

1,000 calories when I'm trying to get 3,000 calories in you.  So sometimes I

 

have to tell patients you've got to sit down and rest.  Stay in the chair for 30

 

minutes after you eat. 

 

      Then the effects on the quality of life.  This probably is one of the

 

things that I'm most concerned with because many people use nutrition and

 

eating out as their social activity.  And many times when we make these changes

 

and you can't find the foods and you really are not able to do your social

 

functions and this is something that will affect your quality of life. 

 

      The numbers of other things that you're actually having to depend on other

 

people to do for you now that you didn't have to do this previously.  And that

 

can reduce your quality of life. 

 

      And then the overall performance status, the point where you don't feel

 

like getting up and doing those things anymore where you really have a reduced

 

quality of life.

 

QUESTION:

 

      Please recommend what's the best, easiest for a lay person to understand

 

books or to go to get on keeping up weight for cancer patients?  What's the best

 

source for someone to go to?

 

ANSWER:

 

      The NCI has put out a book “Eating Hints for Cancer Patients” and in the

 

back of this it has increasing weight, protein, and calories and convincing

 

products and it's very useful.  And also the Cancer Society has put out a very

 

good book that gives its information a little bit different.  But it's also

 

very useful.  And then a couple of office type of books, but I can find it if I

 

don't have it if you get in touch with me.

 

QUESTION:

 

      People who have carcinoid can't do hard physical exercise.  How is there

 

anything you can do that will help get good results?

 

 

 

 

ANSWER:

 

      Sometime the band therapy where they use  these little bands, resistance

 

bands.  These can be put -- at times I've had patients where we tied them to the

 

bed and they can just reach up and pull when they felt like it.  And they can do

 

the same thing with leg lifts.  Real light.  Those things will help.  They

 

really make a difference.

 

QUESTION:

 

      The nausea that some carcinoid patients experience could it be caused by

 

the carcinoid itself but indirectly by the inability to digest fat? 

 

ANSWER:

 

      Yes.  Many times it's the fat malabsorbtion or the presence of the fat too

 

long in the stomach that will cause some of this nausea.  Some of it's

 

medications.

 

QUESTION:

 

      What causes swelling in the face, more in the morning when getting up or

 

when there's no leg edema and there is weight loss?

 

ANSWER:

 

      That's probably your kidney.  (To Dr. Anthony) You may have to deal with

 

that one more than me.  In the face and legs, many times it's associated with

 

Albumin, but in the face, I'm not too sure that's the problem.

 

DR. ANTHONY:

 

      Well, it's obviously positional because it's more in the morning. 

 

Whenever anybody assumes a supine posture, it's going to shift wastes in the

 

legs and the lower body to the upper body.  So it's a fairly common problem to

 

have more upper body edema if you tend to swell.  It all depends on how

 

collective rest you try to do to see how it acts on that.   Things that we

 

think about with edema in general are what can happen in patients' renal and

 

cardiac functions are and then obviously do many things the oncotic factor of

 

Albumin which can be irrascible.  So it's really where nutrition and oncology

 

come together that determines that.

 

QUESTION:

 

      Is there a difference in coordinating needs?  Protein needs, et cetera, in

 

a patient with carcinoid?  Those without Carcinoid syndrome versus a patient

 

with the syndrome assuming equal therapies?

 

ANSWER:

 

      Yes.  There can be different calorie needs among individuals in regards to

 

the amount of benefit.  Everybody would be different and everybody is such an

 

individual that they get different benefit.

 

QUESTION:

 

      What causes chronic foul smelling burps?

 

ANSWER:

 

      Probably food being retained in the stomach too long is causing these

 

types of eruptions.

 

QUESTION:

 

      How can I put weight on when I have diarrhea every time I eat?

 

ANSWER:

 

      Probably what you're eating at each meal.  That's where we have to look at

 

what you're taking in at that meal, what type of fats.  It's a puzzle.  But it's

 

probably the things that you're eating that are causing that diarrhea. 

 

Sometimes it's just the presence of food alone.  That person I may have to see

 

individually to stop that, to answer that question for you.

 

QUESTION:

 

      Since we never get to a point past treatment through recovery, does this

 

mean we never get to go on the entire weight loss regimen?

 

ANSWER:

 

      I don't refer anybody to go off.  If someone is very, very stable in

 

treatment and isn't -- we're not seeing the weight loss for any other reason, we

 

might could do it very slowly and individually.  But it is not something that I

 

recommend at all.

 

QUESTION:

 

      Where can I read about phytochemicals in someone with carcinoid?

                

ANSWER:

 

      There is no big research done with those specifically in this area.  We

 

are seeing it in other areas of the cancer and they said some research would

 

be coming down the road.  Phytochemicals are very good for us in prevention. 

 

But as far as treatment, we're not too sure exactly where they play.

 

QUESTION:

 

      Can TPN be administered at home?  If not, why not?

 

ANSWER:

 

      It can’t be made at home.  It has to be made under a sterile hood in a

 

pharmacy under real aseptic conditions.  You can add something to the TP at home

 

and use it at home, but the initial mixing step has done be done at a pharmacy.

 

QUESTION:

 

      Discuss good general nutrition for a patient.  What food items, et cetera,

 

are good?  What is not good?

 

ANSWER:

 

      Again, it's generally, we want you to eat according to the food pyramid

 

that you see in your magazine where you get more complex carbohydrates in a

 

diet and less concentrated sweet and fats.  Do eat some vegetables and fiber,

 

fruits, and vegetables and those that can be tolerated are very important in the

 

prevention and treatment of cancer.  But again, it's to what you can tolerate is

 

the most important thing.

 

QUESTION:

 

      Is Glucerna a tolerable drink for a carcinoid patient with diabetes?  Does

 

your body break it down and absorb it easily?

 

 

ANSWER:

 

      This one is one that would depend on how much injury you've had to the

 

small bowel.  Glucerna has both types of vitamins that I talked about previously

 

but the patients that don't tolerate it – the insolubles, the fibers that stays

 

with you, this part can cause problems.  And in patients that do not tolerate

 

this intact protein which is a protein that hasn't been broken down has not

 

worked for them.

 

QUESTION:

 

      For those of us with short bowel syndrome, what are your thoughts about

 

using Creon as a method to help control diarrhea and Creon being a pancreatic

 

enzyme?

 

ANSWER:

 

      We use Creon and have used it successfully.

 

      QUESTION:

 

      Bowel resection.  Fourteen inches of terminal ileum.  When should B-12

 

shots be used?  Are there other deficiencies possible after bowel resection with

 

no apparent weight loss?

 

ANSWER:

 

      B-12 injections probably starts the following month if you've been eating

 

healthy previously.  If not, I'm sure you probably can get an injection.  And

 

it's given monthly after that.  And then other deficiencies can be -- all your

 

fat soluble vitamins, A, B, E, and K, and zinc will be a problem because of

 

the diarrhea.

 

QUESTION:

 

      What's a short easy exercise if you have no flushing? 

 

ANSWER:

 

      Probably stepping in place in your living room so that you have some

 

control is probably the best one.

 

 

QUESTION:

 

      What is your opinion on the muscle building supplements in health food

 

stores?  Is there one in particular that you would recommend?

 

ANSWER:

 

      No.  I don't hate health food stores.  But I don't like patients going out

 

there and getting recommendations without a physician's recommendation.

 

QUESTION:

 

      Any risks with drinking large amounts of green tea?

 

ANSWER:

 

      There can be diarrhea associated with it.

 

QUESTION:

 

      Would you recommend acidophilus?  Do you buy the stuff already made?

 

ANSWER:

 

      I recommend that you use it daily and use it three times a day.  I do use

 

in my practice the capsule that is put out on the market, Culprel, and it's been

 

used very well.

 

QUESTION:

 

      What are the top 5 foods/products that you recommend?

 

ANSWER:

 

      If you're tolerating protein, probably fish.  For diarrhea, applesauce has

 

been good.  White rice and potatoes.

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