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
Table of Contents
Introduction
5
WhatIsMultipleMyeloma?
6
TheStagesofMultipleMyeloma
7
WhatIsFatigue?
9
WhatIsAnemia?
9
WhatCausesFatigueandAnemia
inPatientswithMultipleMyeloma?
10
HowAreFatigueandAnemiaDiagnosed? 12
WhenShouldAnemiaandFatigue
BeTreated?
15
WhatTreatmentsAreAvailableforFatigue
andAnemia?
16
HowAreTheseTreatmentsAdministered? 19
WhatAreSomeofthePossibleSideEffects
ofTreatment?
20
WillTreatmentforFatigueandAnemia
InterferewithTreatmentforMyeloma?
21
WhatElseCanBeDonetoHelpPatients
withAnemiaandFatigueFeelBetter?
21
AbouttheIMF
22
Glossary
26
©2010, International Myeloma Foundation, North Hollywood, California (XI10)
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.
4
5
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;
6
7
Stage III (high cell mass): More
relapse, the newer novel agents are fre-
advanced disease that includes one or more
quently required to achieve further response.
of the fol owing:
Revlimid® and VELCADE® are important new
agents available for use in this set ing.
n Anemia
n A high level of calcium in the blood
What Is Fatigue?
n More than 3 areas of advanced lytic bone
In healthy people, fatigue is typical y char-
lesions
acterized by extreme exhaustion or feelings
of tiredness that interfere to some extent with
n A high level of M protein in the blood or
normal everyday activities. It usual y occurs
urine.
after excessive stimulation or prolonged exer-
Multiple myeloma is a serious malignancy,
tion of some kind and is temporary. Rest and
but it is treatable. Many patients experi-
refraining from strenuous activity can help
ence a series of responses, relapses, and
restore energy and make a person feel bet-
remissions. New treatments can extend the
ter. Fatigue that is related to cancer, howev-
survival of many patients diagnosed with
er, is dif erent and more severe than normal
multiple myeloma.
fatigue and tends to last longer. Simply rest-
ing does not al eviate the fatigue. This type
Fol owing diagnosis, several options are
of fatigue has been defined by the National
available for initial or frontline therapy.
Comprehensive Cancer Network as "a dis-
For patients who may be candidates for
tressing, persistent, subjective sense of tired-
high-dose therapy with stem cel transplant,
ness or exhaustion related to cancer or can-
various induction regimens can be consid-
cer treatment that is not proportional to recent
ered including VELCADE® (bortezomib) with
activity and interferes with usual functioning."
cyclophosphamide and dexamethasone, tha-
In patients with multiple myeloma, fatigue
lidomide with dexamethasone, dexametha-
often is a symptom that anemia is present.
sone alone, other dexamethasone-containing
combinations, or combinations containing
What Is Anemia?
other adrenal cortical steroids. The combi-
nation of the alkylating agent melphalan
Anemia is an abnormal y low level of red
plus prednisone, a simple oral therapy,
blood cel s (RBCs) in your body. RBCs con-
is an option for patients not considering
tain hemoglobin. Hemoglobin is a protein
autologous stem cel transplant, as are com-
found in RBCs that contains iron and trans-
binations of melphalan plus prednisone with
ports much-needed oxygen from the lungs
the novel agents VELCADE®, thalidomide,
to tissues and organs throughout the body.
or Revlimid® (lenalidomide). At the time of
If the number of RBCs is low, however, then
8
9
the hemoglobin count is low, and the body
the disease. Patients need to understand that
does not receive the amount of oxygen that
fatigue is a symptom of their disease and is
it needs to function properly. Anemia can
not necessarily a sign that their condition is
have multiple causes: it may be caused by
get ing worse. Even though cancer-related
some underlying disease that interferes with
fatigue is very common in patients with mul-
normal RBC production and functioning, or
tiple myeloma, the exact physiologic mecha-
it may be the result of the negative ef ects of
nisms that cause the fatigue are not known.
chemotherapy on RBC production.
It is known, however, that it is related to the
patient's anemia, and there are ways to man-
What Causes Fatigue and Anemia in
age it and help you cope.
Patients with Multiple Myeloma?
Anemia: The Case of Missing RBCs
Fatigue: You're Not Alone
Anemia occurs in patients with multiple
Fatigue associated with multiple myeloma
myeloma because plasma cel s in bone mar-
usual y is caused by underlying anemia.
row grow faster than normal, increase in
This type of fatigue severely af ects patients'
number, and produce tumors in the marrow.
quality of life and everyday functioning. The
These tumors interfere with the blood-produc-
continued interference with normal function-
ing activities of bone marrow, leading to a
ing is what sets cancer-related fatigue apart
shortage of red blood cel s (RBCs). This short-
from normal fatigue. Fatigue is very common
age is known as anemia.
in patients with multiple myeloma and is esti-
There are a number of causes of anemia in
mated to af ect 90%100% of patients with
patients with multiple myeloma. The disease
itself suppresses the body's ability to make
enough RBCs, resulting in low RBC counts.
Unfortunately, the chemotherapy that kil s
the cancer cel s in patients with multiple
myeloma also destroys normal RBCs, thus
also increasing the chances of developing
anemia. Anemia is very common in patients
with multiple myeloma. In fact, at least
60%70% of patients with multiple myeloma
have anemia at the time they are diagnosed
with the disease.
10
11
How are Fatigue and Anemia
feel fatigued or when anything in particular
Diagnosed?
makes you feel bet er or worse. Keep track of
how limiting your fatigue is by noting to what
Fatigue: Give Them Something to Talk About
extent it interferes with your daily activities.
It can be dif icult to diagnose fatigue associ-
Your healthcare team wil be asking ques-
ated with multiple myeloma for a number of
tions about your fatigue and any input you
reasons. There are no laboratory tests that
can provide wil be very helpful. In addition
can be used to diagnose fatigue; hence, infor-
to their screening, they need your feedback
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:
n Time when fatigue is most noticeable
n Medications that you are taking
n Emotional stress, anxiety, and depression
n Presence and location of physical pain
n Existence of other conditions or il nesses
n Sleep disturbances
n Dietary changes
n Changes in weight
n Changes in activity or daily routine
n Changes in health.
12
13
If there are any changes or other fac-
It is wise to have a family member or care-
tors that you think could be adding to
giver with you at your appointment. He or
your fatigue, do not hesitate to bring
she may be able to add to the information
them to the at ention of your healthcare
you provide.
team. There are factors that may not be
A simple blood test is used to determine what
obvious that could be making your fatigue
your hemoglobin level is. Hemoglobin levels
worse. Many factors that contribute to
are used to measure the number of RBCs in
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
Anemia
to 18 g/dL for men and 12 to 16 g/dL
If your doctor suspects you have anemia, he
for women. The National Cancer Institute
or she performs tests for it and determines its
(NCI) has developed the fol owing scale that
severity. You wil be asked questions about
determines the degree of severity of anemia
your health in general. Remember to report
through relative levels of hemoglobin.
any of the fol owing symptoms:
n Shortness of breath
Grade
Severity Hemoglobin Level (g/dL)
n Lack of energy and motivation
0
None
Normal value
n Rapid heartbeat
1
Mild
10 to normal value
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
n Change in appetite
When Should Anemia and Fatigue
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.
14
15
particularly wel . Let them know how much
bet er. Treatment of your anemia and fatigue
your fatigue is disrupting your everyday
wil be based on the severity of each. Al
activities. Fatigue typical y is a sign of some
patients are not candidates for al treatments.
underlying problem; it needs to be treated
Your healthcare team wil determine which
as soon as possible. Left unmanaged, fatigue
treatment regimen is best suited to and safest
can have a dramatic ef ect on your daily life
for you.
and on your health. Your healthcare team
FATiGue
wil start treating your anemia as soon as it
Your healthcare team wil determine if there
is diagnosed. They wil want to begin restor-
are contributing factors to your fatigue.
ing your RBC count as soon as possible.
Depending on their findings, they may do
Your health and response to other treatments
the fol owing:
depend upon holding these levels to as
near-normal as possible. In some instances,
n Adjust your medications;
in at empts to increase RBCs before anemia
n Change or modification of your dietary
ful y develops, treatment may be started in
intake;
patients identified as being at high risk for
n Improve your fluid and electrolyte
developing anemia.
(sodium, potassium, calcium, and
magnesium) intake;
What Treatments Are Available for
n
Fatigue and Anemia?
Treat the underlying cause(s) as is
appropriate;
There are a number of treatments and things
n Create strategies for coping and manag-
you can do for fatigue and anemia that
ing your fatigue.
wil improve your health and make you feel
ANeMiA
For a number of years, the primary treatment
option for anemia has been blood transfu-
sion. Transfusions replace and replenish
the RBCs that you have lost and are recom-
mended when immediate correction of the
anemia is desired. Although transfusions
have an immediate ef ect that is beneficial
for patients, the increase in hemoglobin lev-
els may not be very large and may last only
up to a few weeks, so repeated transfusions
may be necessary.
16
17
Another option for anemia that needs to be
light of recent reports of their association
treated but that does not have to be cor-
with increased tumor growth and reduced
rected immediately involves treatment with
survival in patients with cancer, and the iden-
a class of medications known as erythropoi-
tification of receptors for them on myeloma
etic agents (epoetin alfa, epoetin beta, and
cel s, although this requires further investiga-
darbepoetin alfa). These agents stimulate
tion.
erythropoiesis, which is another name for the
You may also be given iron supplements to
formation of new RBCs, and are used to treat
restore your iron levels to as near normal as
anemia caused by a variety of conditions,
possible. Iron is needed to produce RBCs,
including multiple myeloma. These drugs
and iron supplements are often given during
have been used to treat anemia associated
erythropoietic treatment.
with cancer since the early 1990s. They are
biological y equivalent to erythropoietin, a
How Are These Treatments
hormone that is found natural y in your body.
Administered?
This hormone stimulates your bone marrow
to produce RBCs. Administering erythropoi-
TRANSFuSioNS
etic agents thus signals your body to make
Transfusions are administered as intravenous
RBCs, which helps to restore normal levels.
infusions in a hospital or other healthcare
You should be aware that it may take several
facility. A trained healthcare professional
weeks for these medications to take ef ect, so
wil give the transfusion. It is recommended
you may not feel bet er right away. Treatment
that a caregiver or family member drive you
with erythropoietic agents can also reduce
to and from the transfusion center. The entire
the number of transfusions patients need.
process can take a few hours.
Thus, treatment with this class of drugs may
be initiated to increase hemoglobin levels,
eRYTHRopoieTiC AGeNTS
reduce or eliminate the need for blood trans-
Erythropoietic agents are administered as
fusions, and make patients who have been
subcutaneous injections by a healthcare
suf ering from anemia feel bet er. In some
professional. The amount of medication,
patients, an erythropoietic agent and transfu-
frequency of injections, and schedule of
sion may be given together.
your injections wil be determined by your
healthcare team.
Erythropoietic agents may also be beneficial
in patients who have been identified by their
iRoN SuppLeMeNTS
healthcare team as being at high risk for
Iron supplements are available in oral and
developing anemia. However, erythropoietic
intravenous formulations. However, oral
agents should be used with caution in the
products are used most often. Intravenous
18
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products are helpful in patients who, for vari-
Al ergic reactions tend to be rare; when they
ous reasons, cannot use the oral forms.
do occur, they tend to be mild in nature.
What Are Some of the Possible
Remember that not al patients treated with
erythropoietic agents experience any or al
Side Effects of Treatment?
of the reactions that have been reported
by other patients. Similarly, patients do not
poSSiBLe Side eFFeCTS WiTH TRANSFuSioNS
experience side ef ects to the same degree.
There are a number of possible side ef ects
However, at the first sign of any reaction,
that can occur after receiving a blood
patients should contact a member of their
transfusion. Some patients may have a mild
healthcare team immediately.
fever or develop a rash or hives. These reac-
tions are temporary and usual y not severe.
Will Treatment for Fatigue and
In very rare instances, patients may experi-
Anemia Interfere with Treatment
ence serious incompatibility reactions. These
for Multiple Myeloma?
reactions wil be managed immediately by
the healthcare team. Strict screening pro-
Treatments chosen by healthcare teams
cesses are used to prevent the spread of
to manage your fatigue and anemia wil
viral infections transmit ed in blood during
not interfere with treatments for multiple
infusions. Such transmissions were more of a
myeloma. Treatments approved to treat ane-
concern in earlier years when screening was
mia and fatigue can be done safely and
not so common or stringent.
in conjunction with treatment for multiple
poSSiBLe Side eFFeCTS WiTH eRYTHRopoieTiC
myeloma.
AGeNTS
What Else Can Be Done to Help
Erythropoietic agents general y are wel
Patients with Anemia and Fatigue
tolerated by patients. The most commonly
Feel Better?
reported side ef ects experienced by patients
treated with these drugs are
Along with transfusions, medications, and
other adjustments, there are also a number of
n Fever
other things you can do to manage and cope
n Diarrhea
with your fatigue and anemia, including the
n Nausea
fol owing:
n Vomiting
n Exercise (walking, cycling, swimming)
n Swel ing at the injection site
n Developing coping strategies
(distractions)
n Fatigue.
20
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n Modification of activities (naps, reestab-
The International Myeloma Foundation (IMF)
lishment of priorities, use of labor-saving
was founded in 1990 by Brian and Susie
devices)
Novis shortly after Brian's myeloma diagno-
n Counseling.
sis at the age of 33. It was Brian's dream
that future patients would have easy access
Patient education can help you understand
to medical information and emotional sup-
anemia and fatigue. Ask members of your
port throughout their bat le with myeloma.
healthcare team if they have any information
He established the IMF with the three goals
that they can pass on to you or if they can
of treatment, education, and research. He
direct you to other sources of information.
sought to provide a broad spectrum of ser-
Your healthcare team can also work with you
vices for patients and, their families, friends,
to develop a general strategy for managing
and healthcare providers. Although Brian
your fatigue. Involve your family and caregiv-
died four years after his initial diagnosis, his
ers. They can be great support. Do not be
dream did not. Today, the IMF reaches out
ashamed or afraid to talk about your fatigue
to an international membership of more than
and the impact it has on your life.
195,000. The IMF was the first organization
For more information on multiple myeloma
dedicated solely to myeloma, and today it
and treatment options, contact the IMF.
remains the largest.
The IMF provides programs and services to
About the IMF
aid in the research, diagnosis, treatment,
and management of myeloma. The IMF
"One person can make a dif erence,
ensures that no one must brave the myeloma
Two can make a miracle."
bat le alone.
Brian D. Novis
IMF Founder
We care for patients today, while working
toward tomorrow's cure.
Myeloma is a lit le-known, complex, and
often misdiagnosed bone marrow cancer
How Can the IMF Help You?
that at acks and destroys bone. Myeloma
af ects approximately 75,000 to 100,000
pATieNT eduCATioN
people in the United States, with more than
iNFoRMATioN pACkAGe
Our free IMF InfoPackTM provides comprehen-
20,000 new cases diagnosed each year.
sive information about myeloma, treatment
Although there is presently no known cure for
options, disease management, and IMF servic-
myeloma, doctors have many approaches to
es. It includes our acclaimed Patient Handbook.
help myeloma patients live bet er and longer.
22
23
iNTeRNeT ACCeSS
SuppoRT
Log on to www.myeloma.org for 24-hour
MYeLoMA HoTLiNe: 800-452-CuRe (2873)
access to information about myeloma, the IMF,
Toll-free throughout the United States and
education, and support programs.
Canada, the IMF Hotline is staf ed by trained
MYeLoMA MANAGeRTM peRSoNAL CARe ASSiSTANTTM
information specialists and is in frequent
This software program was developed by
interaction with members of our Scientific
the IMF and is designed specifical y to help
Advisory Board.
patients and caregivers to capture, display,
SuppoRT GRoupS
and store laboratory test results, and to access
A worldwide network of more than 100
important information. It is available free of
myeloma support groups hold regular meetings
charge on the IMF website at www.myeloma.
for members of the myeloma community. The
org. Currently this program is only compatible
IMF conducts annual retreats for leaders of
with PCs.
myeloma support group leaders.
oNLiNe MYeLoMA FoRuM
Join the IMF Internet Discussion Group at
ReSeARCH
www.myeloma.org/listserve.html to share your
BANk oN A CuRe®
thoughts and experiences.
This DNA bank wil provides genetic data
research in new drug development.
MYeLoMA MiNuTeTM
Subscribe to this free weekly email newslet er
THe iNTeRNATioNAL STAGiNG SYSTeM (iSS)
for up-to-the-minute information about myeloma.
This updated staging system for myeloma
enhances physicians' ability to select the most
iMF pATieNT & FAMiLY SeMiNARSTM
appropriate treatment for each patient.
Meet with leading experts in myeloma treat-
ment to learn more about recent advances in
ReSeARCH GRANTS
therapy and research.
Leading the world in col aborative research
and achieving extraordinary results, the IMF
MYeLoMA MATRixTM
Grant Program supports both junior and senior
On our website and in print, this document is a
researchers working on a broad spectrum of
comprehensive guide to drugs in development
projects. The IMF has at racted many young
for myeloma.
investigators into the field of myeloma; they
MYeLoMA TodAYTM NeWSLeTTeR
have remained in the field and are actively
Our quarterly newslet er is available free of
pursuing a cure for this disease.
charge by subscription.
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Glossary
Adrenal cortical steroid: 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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