Understanding
Anemia and
Fatigue
International Myeloma Foundation
12650 Riverside Drive, Suite 206
North Hol ywood, CA 91607 USA
Telephone:
800-452-CURE
(USA & Canada)
818-487-7455
Fax: 818-487-7454
TheIMF@myeloma.org
www.myeloma.org
11/06

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Table of Contents
Introduction
5
WhatIsMultipleMyeloma?
6
TheStagesofMultipleMyeloma
7
WhatIsFatigue?
9
WhatIsAnemia?
9
WhatCausesFatigueandAnemia
inPatientswithMultipleMyeloma?
10
HowAreFatigueandAnemiaDiagnosed? 11
WhenShouldAnemiaandFatigue
BeTreated?
15
WhatTreatmentsAreAvailableforFatigue
andAnemia?
16
HowAreTheseTreatmentsAdministered? 19
WhatAreSomeofthePossibleSideEffects
ofTreatment?
20
WillTreatmentforFatigueandAnemia
InterferewithTreatmentforMyeloma?
21
WhatElseCanBeDonetoHelpPatients
withAnemiaandFatigueFeelBetter?
21
AbouttheIMF
23
Glossary
26
Sponsored by an unrestricted educational grant from Ortho Biotech Products, LLP
©2006, International Myeloma Foundation, North Hollywood, California

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Introduction
You may be wondering why you feel so
tired and cannot do many of the things you
want to do, or used to do. You may also be
wondering if there is anything you can do to
feel bet er, be more productive, and regain
your energy. Your healthcare team may have
told you that you have anemia, which may
explain, in part, why you feel so tired and
lack the energy necessary to perform your
daily activities. Anemia and fatigue can be
caused by multiple myeloma itself or by the
treatment for the disease. You have been
given this booklet to learn more about fatigue
and anemia and how they relate to multiple
myeloma and its treatment. In this booklet,
you wil also learn about what you can do
and which medications are available to help
you bet er manage your fatigue and anemia
and enable you to feel bet er and participate
in more activities. After reading this booklet,
you should know the fol owing:
n What fatigue and anemia are and how
they relate to multiple myeloma;
n When anemia and fatigue should be
treated;
n How anemia and fatigue are treated;
n The possible side ef ects of treatment of
anemia and fatigue;
n If treatment for anemia interferes with
your treatment for multiple myeloma;
n What else you can do to feel less tired.
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A short overview of multiple myeloma wil
n Release of an abnormal protein, mono-
be presented first, so that you can see how
clonal protein (M protein), into the blood-
fatigue and anemia are related to the dis-
stream;
ease and its treatment, and bet er understand
n Suppression of normal immune function;
why it is so important that they be managed
observed as reduced levels of normal
properly.
immunoglobulins and increased suscepti-
This booklet is meant to provide you with
bility to infection.
general information only. It is not meant to
Myeloma cel s can also grow in the form
replace the advice of your doctor, nurse, or
of localized tumors or plasmacytomas.
other healthcare practitioner. Your health-
Plasmacytomas may be single or multiple,
care team can answer questions related to
and either medul ary (confined within bone
your specific treatment plan. Al words that
marrow and bone) or extramedul ary (out-
appear in bold type are defined in a glos-
side of the bone). When there are multiple
sary at the end of this booklet.
plasmacytomas inside or outside bone, this
condition is also cal ed multiple myeloma.
What Is Multiple Myeloma?
Confronted with a diagnosis of multiple
Multiple myeloma (also known as "myelo-
myeloma, it is important for your doctor to
ma" and "plasma cel neoplasm") is a
determine the stage of the disease. Disease
malignancy of the immunoglobulin-produc-
staging wil help determine what parts of the
ing plasma cel s found in the bone marrow. It
body have been af ected and to what extent.
is a hematologic malignancy that resembles
This wil al ow the doctor to decide the best
leukemia. However, the malignant plasma
treatment option.
cel s, or myeloma cel s, rarely enter the blood
stream as they do in a true leukemia. Instead,
The Stages of Multiple Myeloma
the myeloma cel s accumulate in the bone
marrow, causing the fol owing:
Stage I (low cell mass): Early disease.
The bone structure appears normal or close
n Disruption of normal bone marrow func-
to normal on x-ray images; the number of
tion, most commonly causing anemia (a
red blood cel s and amount of calcium in the
low level of red blood cel s in the blood-
blood are normal or close to normal and the
stream), although reduction in white blood
amount of M protein is very low.
cel and platelet counts can also occur;
Stage II (intermediate cell mass): An
n Damage to bone surrounding accumulated
intermediate stage between stage I and I I.
myeloma cel s;
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Stage III (high cell mass): More
What Is Fatigue?
advanced disease that includes one or more
of the fol owing:
In healthy people, fatigue is typical y char-
acterized by extreme exhaustion or feelings
n Anemia
of tiredness that interfere to some extent with
n A high level of calcium in the blood
normal everyday activities. It usual y occurs
after excessive stimulation or prolonged exer-
n More than 3 areas of advanced lytic bone
tion of some kind and is temporary. Rest and
lesions
refraining from strenuous activity can help
n A high level of M protein in the blood or
restore energy and make a person feel bet-
urine.
ter. Fatigue that is related to cancer, howev-
er, is dif erent and more severe than normal
Multiple myeloma is a serious malignancy,
fatigue and tends to last longer. Simply rest-
but it is treatable. Many patients experi-
ing does not al eviate the fatigue. This type
ence a series of responses, relapses, and
of fatigue has been defined by the National
remissions. New treatments may extend the
Comprehensive Cancer Network as "a dis-
average survival of 5 years for patients diag-
tressing, persistent, subjective sense of tired-
nosed with multiple myeloma.
ness or exhaustion related to cancer or can-
Fol owing diagnosis, several options are
cer treatment that is not proportional to recent
available for initial or frontline therapy. For
activity and interferes with usual functioning."
patients who may be candidates for high-
In patients with multiple myeloma, fatigue
dose therapy with stem cel transplant, vari-
often is a symptom that anemia is present.
ous induction regimens can be considered,
including thalidomide with dexamethasone,
What Is Anemia?
dexamethasone alone, other dexamethasone-
Anemia is an abnormal y low level of red
containing combinations, or combinations
blood cel s (RBCs) in your body. RBCs con-
containing other adrenocortical steroids. The
tain hemoglobin. Hemoglobin is a protein
combination of the alkylating agent melpha-
found in RBCs that contains iron and trans-
lan plus prednisone, a simple oral therapy, is
ports much-needed oxygen from the lungs
an option for patients not considering high-
to tissues and organs throughout the body.
dose melphalan with autologous stem cel
If the number of RBCs is low, however, then
transplant. At the time of treatment, newer
the hemoglobin count is low, and the body
agents are frequently required to achieve fur-
does not receive the amount of oxygen that
ther response. Revlimid (lenalidomide) and
it needs to function properly. Anemia can
VELCADE® (bortezomib) are important new
have multiple causes: it may be caused by
agents available for use in this set ing.
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some underlying disease that interferes with
shortage of red blood cel s (RBCs). This short-
normal RBC production and functioning, or
age is known as anemia.
it may be the result of the negative ef ects of
There are a number of causes of anemia in
chemotherapy on RBC production.
patients with multiple myeloma. The disease
itself suppresses the body's ability to make
What Causes Fatigue and Anemia in
enough RBCs, resulting in low RBC counts.
Patients with Multiple Myeloma?
Unfortunately, the chemotherapy that kil s
Fatigue: You're Not Alone
the cancer cel s in patients with multiple
Fatigue associated with multiple myeloma
myeloma also destroys normal RBCs, thus
usual y is caused by underlying anemia.
also increasing the chances of developing
This type of fatigue severely af ects patients'
anemia. Anemia is very common in patients
quality of life and everyday functioning. The
with multiple myeloma. In fact, at least
continued interference with normal function-
60%­70% of patients with multiple myeloma
ing is what sets cancer-related fatigue apart
have anemia at the time they are diagnosed
from normal fatigue. Fatigue is very common
with the disease.
in patients with multiple myeloma and is esti-
mated to af ect 90%­100% of patients with
How are Fatigue and Anemia
the disease. Patients need to understand that
Diagnosed?
fatigue is a symptom of their disease and is
Fatigue: Give Them Something to Talk About
not necessarily a sign that their condition is
It can be dif icult to diagnose fatigue associ-
get ing worse. Even though cancer-related
ated with multiple myeloma for a number of
fatigue is very common in patients with mul-
reasons. There are no laboratory tests that
tiple myeloma, the exact physiologic mecha-
can be used to diagnose fatigue; hence, infor-
nisms that cause the fatigue are not known.
It is known, however, that it is related to the
patient's anemia, and there are ways to man-
age it and help you cope.
Anemia: The Case of Missing RBCs
Anemia occurs in patients with multiple
myeloma because plasma cel s in bone mar-
row grow faster than normal, increase in
number, and produce tumors in the marrow.
These tumors interfere with the blood-produc-
ing activities of bone marrow, leading to a
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mation about fatigue provided by patients
so that they can determine the severity of
is very important. Your healthcare team wil
your fatigue and develop strategies to help
need to evaluate your situation and try to
you manage it. Based on your feedback,
identify the source of your fatigue and ways
your healthcare team wil rate your fatigue
to manage it most ef ectively. Patients need
on a scale of 0 to 10 (with 0=no fatigue and
to openly discuss their feelings of fatigue
10=worst fatigue imaginable) and then clas-
with members of their healthcare team. Do
sify your fatigue as one of the fol owing:
not think that your fatigue is not important
n Mild (0­3)
enough to mention at your appointments.
Although fatigue is an expected symptom
n Moderate (4­6)
with multiple myeloma, you do not have to
n Severe (7­10).
accept it. There are things that you and your
Examples of things that you should be looking
healthcare team can do that wil help you
at and want to report to your healthcare team
feel bet er. Make notes for yourself when you
include (but are not limited to) the fol owing:
feel fatigued or when anything in particular
makes you feel bet er or worse. Keep track of
n Time when fatigue is most noticeable
how limiting your fatigue is by noting to what
n Medications that you are taking
extent it interferes with your daily activities.
n Emotional stress, anxiety, and depression
Your healthcare team wil be asking ques-
tions about your fatigue and any input you
n Presence and location of physical pain
can provide wil be very helpful. In addition
n Existence of other conditions or il nesses
to their screening, they need your feedback
n Sleep disturbances
n Dietary changes
n Changes in weight
n Changes in activity or daily routine
n Changes in health.
If there are any changes or other fac-
tors that you think could be adding to
your fatigue, do not hesitate to bring
them to the at ention of your healthcare
team. There are factors that may not be
obvious that could be making your fatigue
worse. Many factors that contribute to
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fatigue are treatable. There are things that
the body. Low hemoglobin levels indicate
can be done to al eviate your fatigue, and
anemia. Severity of anemia is determined
your healthcare team can work with you and
by hemoglobin level, measured in units
your family and caregiver(s) to develop a
designated as grams of RBCs per deciliter
plan for you.
(g/dL). Normal hemoglobin levels are 14
to 18 g/dL for men and 12 to 16 g/dL
Anemia
for women. The National Cancer Institute
If your doctor suspects you have anemia, he
(NCI) has developed the fol owing scale that
or she performs tests for it and determines its
determines the degree of severity of anemia
severity. You wil be asked questions about
through relative levels of hemoglobin.
your health in general. Remember to report
any of the fol owing symptoms:
Grade
Severity Hemoglobin Level (g/dL)
n Shortness of breath
0
None
Normal value
n Lack of energy and motivation
1
Mild
10 to normal value
n Rapid heartbeat
n Swel ing in the legs, especial y in the
2
Moderate
8­10
ankles
3
Severe
6.5­7.9
n Dizziness
4
Life-threatening
Less than 6.5
n Headache
n Chil s
When Should Anemia and Fatigue
n Change in appetite
Be Treated?
n Decreased libido.
It is important that you discuss your symptoms
A physical examination wil be performed.
and how you are feeling with members of
After the examination, your healthcare team
your healthcare team. Do not hesitate to
wil ask you questions in an at empt to iden-
mention that you feel tired or aren't feeling
tify and uncover the source of your fatigue.
particularly wel . Let them know how much
It is wise to have a family member or care-
your fatigue is disrupting your everyday
giver with you at your appointment. He or
activities. Fatigue typical y is a sign of some
she may be able to add to the information
underlying problem; it needs to be treated
you provide.
as soon as possible. Left unmanaged, fatigue
A simple blood test is used to determine what
can have a dramatic ef ect on your daily life
your hemoglobin level is. Hemoglobin levels
and on your health. Your healthcare team
are used to measure the number of RBCs in
wil start treating your anemia as soon as it
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is diagnosed. They wil want to begin restor-
n Treat the underlying cause(s) as is
ing your RBC count as soon as possible.
appropriate;
Your health and response to other treatments
n Create strategies for coping and manag-
depend upon holding these levels to as
ing your fatigue.
near-normal as possible. In some instances,
ANeMiA
in at empts to increase RBCs before anemia
ful y develops, treatment may be started in
For a number of years, the primary treatment
patients identified as being at high risk for
option for anemia has been blood transfu-
developing anemia.
sion. Transfusions replace and replenish
the RBCs that you have lost and are recom-
What Treatments Are Available for
mended when immediate correction of the
Fatigue and Anemia?
anemia is desired. Although transfusions
have an immediate ef ect that is beneficial
There are a number of treatments and things
for patients, the increase in hemoglobin lev-
you can do for fatigue and anemia that wil
els may not be very large and may last only
improve your health and make you feel bet-
up to a few weeks, so repeated transfusions
ter. Treatment of your anemia and fatigue
may be necessary.
wil be based on the severity of each. Al
patients are not candidates for al treatments.
Another option for anemia that needs to be
Your healthcare team wil determine which
treated but that does not have to be corrected
treatment regimen is best suited to and safest
immediately involves treatment with a class of
for you.
medications known as erythropoietic agents
(epoetin alfa, epoetin beta, and darbepoetin
FATiGue
Your healthcare team wil determine if there
are contributing factors to your fatigue.
Depending on their findings, they may do
the fol owing:
n Adjust your medications;
n Change or modification of your dietary
intake;
n Improve your fluid and electrolyte
(sodium, potassium, calcium, and
magnesium) intake;
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alfa). These agents stimulate erythropoiesis,
How Are These Treatments
which is another name for the formation of
Administered?
new RBCs, and are used to treat anemia
caused by a variety of conditions, including
TRANSFuSioNS
multiple myeloma. These drugs have been
Transfusions are administered as intravenous
used to treat anemia associated with cancer
infusions in a hospital or other healthcare
since the early 1990s. They are biological y
facility. A trained healthcare professional
equivalent to erythropoietin, a hormone that
wil give the transfusion. It is recommended
is found natural y in your body. This hormone
that a caregiver or family member drive you
stimulates your bone marrow to produce
to and from the transfusion center. The entire
RBCs. Administering erythropoietic agents
process can take a few hours.
thus signals your body to make RBCs, which
helps to restore normal levels. You should
eRYTHRopoieTiC AGeNTS
be aware that it may take several weeks for
Erythropoietic agents are administered as
these medications to take ef ect, so you may
subcutaneous injections by a healthcare
not feel bet er right away. Treatment with
professional. The amount of medication,
erythropoietic agents can also reduce the
frequency of injections, and schedule of
number of transfusions patients need. Thus,
your injections wil be determined by your
treatment with this class of drugs may be ini-
healthcare team.
tiated to increase hemoglobin levels, reduce
iRoN SuppLeMeNTS
or eliminate the need for blood transfusions,
Iron supplements are available in oral and
and make patients who have been suf ering
intravenous formulations. However, oral
from anemia feel bet er. In some patients, an
products are used most often. Intravenous
erythropoietic agent and transfusion may be
products are helpful in patients who, for vari-
given together.
ous reasons, cannot use the oral forms.
Erythropoietic agents may also be beneficial
in patients who have been identified by their
What Are Some of the Possible
healthcare team as being at high risk for
Side Effects of Treatment?
developing anemia.
poSSiBLe Side eFFeCTS WiTH TRANSFuSioNS
You may also be given iron supplements to
There are a number of possible side ef ects
restore your iron levels to as near normal as
that can occur after receiving a blood
possible. Iron is needed to produce RBCs,
transfusion. Some patients may have a mild
and iron supplements are often given during
fever or develop a rash or hives. These reac-
erythropoietic treatment.
tions are temporary and usual y not severe.
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In very rare instances, patients may experi-
Will Treatment for Fatigue and
ence serious incompatibility reactions. These
Anemia Interfere with Treatment
reactions wil be managed immediately by
the healthcare team. Strict screening pro-
for Multiple Myeloma?
cesses are used to prevent the spread of
Treatments chosen by healthcare teams
viral infections transmit ed in blood during
to manage your fatigue and anemia wil
infusions. Such transmissions were more of a
not interfere with treatments for multiple
concern in earlier years when screening was
myeloma. Treatments approved to treat ane-
not so common or stringent.
mia and fatigue can be done safely and
poSSiBLe Side eFFeCTS WiTH eRYTHRopoieTiC
in conjunction with treatment for multiple
AGeNTS
myeloma.
Erythropoietic agents general y are wel
What Else Can Be Done to Help
tolerated by patients. The most commonly
Patients with Anemia and Fatigue
reported side ef ects experienced by patients
Feel Better?
treated with these drugs are
n Fever
Along with transfusions, medications, and
other adjustments, there are also a number of
n Diarrhea
other things you can do to manage and cope
n Nausea
with your fatigue and anemia, including the
n Vomiting
fol owing:
n Swel ing at the injection site
n Exercise (walking, cycling, swimming)
n Developing coping strategies
n Fatigue.
(distractions)
Al ergic reactions tend to be rare; when they
do occur, they tend to be mild in nature.
n Modification of activities (naps, reestab-
Remember that not al patients treated with
lishment of priorities, use of labor-saving
erythropoietic agents experience any or al
devices)
of the reactions that have been reported
n Counseling.
by other patients. Similarly, patients do not
Patient education can help you understand
experience side ef ects to the same degree.
anemia and fatigue. Ask members of your
However, at the first sign of any reaction,
healthcare team if they have any information
patients should contact a member of their
that they can pass on to you or if they can
healthcare team immediately.
direct you to other sources of information.
Your healthcare team can also work with you
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to develop a general strategy for managing
About the IMF
your fatigue. Involve your family and caregiv-
ers. They can be great support. Do not be
"One person can make a dif erence,
ashamed or afraid to talk about your fatigue
Two can make a miracle."
and the impact it has on your life.
Brian D. Novis
For more information on multiple myeloma
IMF Founder
and treatment options, contact the IMF.
Myeloma is a lit le-known, complex, and
often misdiagnosed bone marrow cancer
that at acks and destroys bone. Myeloma
af ects approximately 75,000 to 100,000
people in the United States, with more than
15,000 new cases diagnosed each year.
Although there is presently no known cure for
myeloma, doctors have many approaches to
help myeloma patients live bet er and longer.
The International Myeloma Foundation (IMF)
was founded in 1990 by Brian and Susie
Novis shortly after Brian's myeloma diagno-
sis at the age of 33. It was Brian's dream
that future patients would have easy access
to medical information and emotional sup-
port throughout their bat le with myeloma.
He established the IMF with the three goals
of treatment, education, and research. He
sought to provide a broad spectrum of ser-
vices for patients and, their families, friends,
and health- care providers. Although Brian
died four years after his initial diagnosis, his
dream did not. Today, the IMF reaches out
to an international membership of more than
135,000. The IMF was the first organization
dedicated solely to myeloma, and today it
remains the largest.
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The IMF provides programs and services to
MYeLoMA TodAYTM NeWSLeTTeR
aid in the research, diagnosis, treatment,
Our quarterly newslet er is available free of
and management of myeloma. The IMF
charge by subscription.
ensures that no one must brave the myeloma
SuppoRT
bat le alone.
MYeLoMA HoTLiNe: 800-452-CuRe (2873)
We care for patients today, while working
Toll-free throughout the United States and
toward tomorrow's cure.
Canada, the IMF Hotline is staf ed by trained
information specialists and is in frequent
How Can the IMF Help You?
interaction with members of our Scientific
Advisory Board.
pATieNT eduCATioN
SuppoRT GRoupS
iNFoRMATioN pACkAGe
A worldwide network of more than 100
Our free IMF InfoPackTM provides comprehensive
myeloma support groups hold regular meetings
information about myeloma, treatment options,
for members of the myeloma community. The
disease management, and IMF services. It
IMF conducts annual retreats for leaders of
includes our acclaimed Patient Handbook.
myeloma support group leaders.
iNTeRNeT ACCeSS
ReSeARCH
Log on to www.myeloma.org for 24-hour
BANk oN A CuRe®
access to information about myeloma, the IMF,
This DNA bank wil provides genetic data
education, and support programs.
research in new drug development.
oNLiNe MYeLoMA FoRuM
THe iNTeRNATioNAL STAGiNG SYSTeM (iSS)
Join the IMF Internet Discussion Group at
This updated staging system for myeloma
www.myeloma.org/listserve.html to share your
enhances physicians' ability to select the most
thoughts and experiences.
appropriate treatment for each patient.
MYeLoMA MiNuTeTM
ReSeARCH GRANTS
Subscribe to this free weekly email news-
Leading the world in col aborative research
let er for up-to-the-minute information about
and achieving extraordinary results, the IMF
myeloma.
Grant Program supports both junior and senior
iMF pATieNT & FAMiLY SeMiNARSTM
researchers working on a broad spectrum of
Meet with leading experts in myeloma treat-
projects. The IMF has at racted many young
ment to learn more about recent advances in
investigators into the field of myeloma; they
therapy and research.
have remained in the field and are actively
MYeLoMA MATRixTM
pursuing a cure for this disease.
On our website and in print, this document is a
comprehensive guide to drugs in development
for myeloma.
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Glossary
Adrenal corticosteroid: Any of the steroidal hormones
Multiple myeloma: A cancer arising from the plasma cel s
produced by the adrenal cortex or their synthetic equiva-
in the bone marrow. The plasma cel s in patients with
lents. Also known as adrenocorticoids, glucocorticoste-
multiple myeloma form abnormal antibodies, possibly
roid, or corticosteroid.
damaging the bone, bone marrow, and other organs.
Alkylating agent: An agent that prevents the growth and
Plasma cel : A type of white blood cel that produces
division of new cancer cel s by inhibiting their ability to
antibodies.
replicate DNA.
Plasmacytoma: A tumor made up of cancerous plasma
Anemia: A low level of red blood cel s in the blood-
cel s.
stream.
Platelet: An element in the blood that helps with clot ing,
Antibody: A protein produced by some of the body's white
which in turn helps repair damaged blood vessels.
blood cel s that helps fight infection.
Proteins: A group of compounds that are the main
Bone marrow: A soft spongy tissue found in most large
components of a cel .
bones that produces red and white blood cel s and
Red blood cel (RBC): A blood cel that carries oxygen from
platelets.
the lungs throughout the body.
Cel : The smal est unit of life. Mil ions of microscopic cel s
White blood cel : A cel made by the bone marrow that
comprise each body organ.
helps fight infection and/or disease.
Cytokine: A growth factor produced by T-cel s that stimu-
lates the growth of T-cel s and B-cel s.
Enzyme: A type of protein that causes chemical reactions
in other substances without undergoing change in the
process.
Erythropoiesis: The formation of new red blood cel s.
Hematologic malignancy: A cancer of the blood or bone
marrow.
Immunoglobulin: An antibody.
Interleukins: Various cytokines involved in the growth and
survival of myeloma cel s.
Lytic (lysis): Dissolution or destruction of cel s.
Monoclonal protein (M protein):
An abnormal protein
produced by myeloma cel s that accumulates in and
damages bone and bone marrow. A high level of
M protein indicates that myeloma cel s are present in
large numbers.
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