A pu

blic

atio

n of

the

Inte

rnat

iona

l Mye

lom

a Fo

unda

tion

Mul

tiple

Mye

lom

a |

Canc

er o

f the

Bon

e M

arro

w

© 2015, International Myeloma Foundation, North Hollywood, California – u-fat_h2_EN_15

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ves F

indi

ng th

e Cu

re®

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ovin

g Li

ves F

indi

ng th

e Cu

re®

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0 Ri

vers

ide

Driv

e, S

uite

206

Nor

th H

olly

woo

d, C

A 91

607

USA

Tele

phon

e:80

0-45

2-CU

RE (2

873)

(U

SA &

Can

ada)

818-

487-

7455

(w

orld

wid

e)

Fax:

818

-487

-745

4

TheI

MF@

mye

lom

a.or

gm

yelo

ma.

org

Unde

rsta

ndin

gFa

tigue

281

8-48

7-74

55 w

orldw

ide

• 8

00-4

52-C

URE

(287

3) to

ll-fre

e in U

S & Ca

nada

Abo

ut th

e In

tern

atio

nal M

yelo

ma

Foun

dati

on

Foun

ded

in 1

990,

the

Inte

rnat

iona

l Mye

lom

a Fo

unda

tion

(IMF)

is th

e ol

dest

and

larg

est m

yelo

ma-

spec

i!c

char

ity in

the

wor

ld. W

ith m

ore

than

35

0,00

0 m

embe

rs in

140

cou

ntrie

s, th

e IM

F se

rves

mye

lom

a pa

tient

s, fa

mily

m

embe

rs, a

nd th

e m

edic

al c

omm

unity

. The

IMF

prov

ides

a w

ide

rang

e of

pr

ogra

ms i

n th

e ar

eas o

f Res

earc

h, E

duca

tion

, Sup

port

, and

Adv

ocac

y:

RESE

ARC

H T

he IM

F is

the

lead

er in

glo

bally

col

labo

rativ

e m

yelo

ma

rese

arch

. Th

e IM

F su

ppor

ts la

b-ba

sed

rese

arch

and

has

aw

arde

d ov

er 1

00 g

rant

s to

top

ju

nior

and

seni

or re

sear

cher

s sin

ce 1

995.

In a

dditi

on, t

he IM

F br

ings

toge

ther

th

e w

orld

’s le

adin

g ex

pert

s in

the

mos

t suc

cess

ful a

nd u

niqu

e w

ay th

roug

h th

e In

tern

atio

nal M

yelo

ma

Wor

king

Gro

up (I

MW

G),

whi

ch is

pub

lishi

ng in

pr

estig

ious

med

ical

jour

nals

, cha

rtin

g th

e co

urse

to a

cur

e, m

ento

ring

the

next

ge

nera

tion

of in

nova

tive

inve

stig

ator

s, an

d im

prov

ing

lives

thro

ugh

bett

er c

are.

EDU

CATI

ON

The

IMF’

s edu

catio

nal P

atie

nt &

Fam

ily S

emin

ars,

Med

ical

Ce

nter

Wor

ksho

ps, a

nd R

egio

nal C

omm

unity

Wor

ksho

ps a

re h

eld

arou

nd th

e w

orld

. The

se m

eetin

gs p

rovi

de u

p-to

-dat

e in

form

atio

n pr

esen

ted

by le

adin

g m

yelo

ma

spec

ialis

ts a

nd re

sear

cher

s dire

ctly

to m

yelo

ma

patie

nts a

nd th

eir

fam

ilies

. Our

libr

ary

of m

ore

than

100

pub

licat

ions

, for

pat

ient

s and

car

egiv

ers

as w

ell a

s for

hea

lthca

re p

rofe

ssio

nals

, is u

pdat

ed a

nnua

lly a

nd a

vaila

ble

free

of

cha

rge.

Pub

licat

ions

are

ava

ilabl

e in

mor

e th

an 2

0 la

ngua

ges.

SUPP

ORT

Our

toll-

free

Info

Line

at 8

00-4

52-C

URE

(287

3) is

sta!

ed b

y co

ordi

nato

rs w

ho a

nsw

er q

uest

ions

and

pro

vide

supp

ort a

nd in

form

atio

n

via

phon

e an

d em

ail t

o th

ousa

nds o

f fam

ilies

eac

h ye

ar. T

he IM

F su

stai

ns a

ne

twor

k of

mor

e th

an 1

50 su

ppor

t gro

ups a

nd o

!ers

trai

ning

for t

he h

undr

eds

of d

edic

ated

pat

ient

s, ca

regi

vers

, and

nur

ses w

ho v

olun

teer

to le

ad th

ese

gr

oups

in th

eir c

omm

uniti

es.

AD

VOCA

CY T

he IM

F Ad

voca

cy p

rogr

am tr

ains

and

supp

orts

con

cern

ed

indi

vidu

als t

o ad

voca

te o

n he

alth

issu

es th

at a

!ect

the

mye

lom

a co

mm

unity

. W

orki

ng b

oth

at th

e st

ate

and

fede

ral l

evel

, the

IMF

lead

s tw

o co

aliti

ons t

o

advo

cate

for p

arity

in in

sura

nce

cove

rage

. Tho

usan

ds o

f IM

F-tr

aine

d ad

voca

tes

mak

e a

posi

tive

impa

ct e

ach

year

on

issue

s crit

ical

to th

e m

yelo

ma

com

mun

ity.

Lear

n m

ore

abou

t the

way

the

IMF

is h

elpi

ng to

impr

ove

the

qual

ity o

f life

of

mye

lom

a pa

tient

s whi

le w

orki

ng to

war

d pr

even

tion

and

a cu

re.

Cont

act u

s at 8

00-4

52-C

URE

(287

3) o

r 818

-487

-745

5, o

r vis

it m

yelo

ma.

org.

Impr

ovin

g Li

ves F

indi

ng th

e Cu

re®

Tabl

e of

Con

tent

s

The

Unde

rsta

ndin

g se

ries a

nd 1

0 St

eps t

o Be

tter

Car

e 4

Wha

t is f

atig

ue?

4

Wha

t cau

ses f

atig

ue in

pat

ient

s with

mye

lom

a?

5

Grad

ing

syst

em fo

r fat

igue

5

Impo

rtan

t des

crip

tors

of f

atig

ue

5

Mye

lom

a-re

late

d fa

tigue

6

Trea

tmen

t-re

late

d fa

tigue

7

Man

agin

g tr

eatm

ent-

rela

ted

fatig

ue

9

Oth

er p

ossi

ble

sour

ces o

f fat

igue

10

Goin

g fo

rwar

d 12

Term

s and

def

initi

ons

13

54

mye

lom

a.or

g81

8-48

7-74

55 w

orldw

ide

• 8

00-4

52-C

URE

(287

3) to

ll-fre

e in U

S & Ca

nada

Wha

t cau

ses f

atig

ue

in p

atie

nts w

ith

mye

lom

a?Th

ere

are

man

y ca

uses

of

fa

tigue

in

m

yelo

ma

patie

nts:

� Th

e m

yelo

ma

itsel

f

� Tr

eatm

ents

for m

yelo

ma

� O

ther

med

ical

pro

blem

s (kn

own

as

“com

orbi

ditie

s”) a

nd m

edic

atio

ns

for o

ther

med

ical

pro

blem

s

It ca

n be

di!

cult

to d

iagn

ose

fatig

ue

asso

ciat

ed w

ith m

yelo

ma

for

a nu

mbe

r of

rea

sons

. If y

our

fatig

ue is

the

res

ult

of

a so

urce

oth

er t

han

anem

ia,

ther

e ar

e no

lab

orat

ory

test

s th

at c

an b

e us

ed t

o di

agno

se it

. You

mus

t re

port

it, o

r it

will

go

un

dete

cted

. Yo

ur

heal

thca

re

team

w

ill n

eed

to e

valu

ate

your

situ

atio

n an

d tr

y to

ide

ntify

the

sou

rce

or s

ourc

es o

f yo

ur fa

tigue

and

"nd

way

s to

man

age

it m

ost

e#ec

tivel

y. P

atie

nts

need

to

open

ly

disc

uss t

heir

feel

ings

of f

atig

ue a

nd w

eak-

ness

with

mem

bers

of

thei

r he

alth

care

te

am. D

o no

t th

ink

that

feel

ing

tired

and

w

eak

is no

t im

port

ant e

noug

h to

men

tion

at y

our a

ppoi

ntm

ents

.

Gra

ding

syst

em fo

r fat

igue

Mak

e no

tes

for

your

self

whe

n yo

u fe

el

fatig

ued

or w

hen

anyt

hing

in

part

icul

ar

mak

es y

ou fe

el b

ette

r or w

orse

. Kee

p tr

ack

of h

ow l

imiti

ng y

our

fatig

ue i

s by

not

-in

g to

wha

t ext

ent i

t int

erfe

res

with

you

r da

ily a

ctiv

ities

. Any

inpu

t you

can

pro

vide

ab

out

your

fat

igue

and

wea

knes

s w

ill

be v

ery

help

ful t

o yo

ur h

ealth

care

tea

m.

They

nee

d yo

ur f

eedb

ack

so t

hat

they

ca

n de

term

ine

the

seve

rity

of th

ese

prob

-le

ms

and

deve

lop

stra

tegi

es t

o he

lp y

ou

man

age

them

.

Base

d on

you

r fe

edba

ck, y

our

heal

thca

re

team

will

rat

e yo

ur f

atig

ue o

n a

scal

e of

0

to 1

0 (w

ith 0

= no

fatig

ue a

nd 1

0 = w

orst

fa

tigue

imag

inab

le) a

nd th

en c

lass

ify y

our

fatig

ue a

s one

of t

he fo

llow

ing:

� M

ild (0

to 3

)�

Mod

erat

e (4

to 6

)�

Seve

re (7

to 1

0)

Impo

rtan

t des

crip

tors

of

fati

gue

Exam

ples

of

thin

gs t

hat

you

shou

ld b

e lo

okin

g at

and

wan

t to

rep

ort

to y

our

heal

thca

re te

am in

clud

e (b

ut a

re n

ot li

m-

ited

to) t

he fo

llow

ing:

� Ti

me

whe

n fa

tigue

is m

ost n

otic

eabl

e�

Med

icat

ions

that

you

are

taki

ng�

Emot

iona

l str

ess,

anxi

ety,

or d

epre

ssio

n�

Pres

ence

and

loca

tion

of p

hysic

al p

ain

� Ex

isten

ce o

f oth

er c

ondi

tions

or

illn

esse

s�

Slee

p di

stur

banc

es�

Die

tary

cha

nges

� C

hang

es in

wei

ght

� C

hang

es in

act

ivity

or d

aily

rout

ine

� C

hang

es in

hea

lth

The

Und

erst

andi

ng se

ries

an

d 10

Ste

ps to

Bet

ter C

are

The

IMF’s

Und

erst

andi

ng se

ries o

f boo

klet

s is

desig

ned

to a

cqua

int

you

with

tre

at-

men

ts a

nd s

uppo

rtiv

e ca

re m

easu

res

for

mul

tiple

mye

lom

a (w

hich

will

be

refe

rred

to

as m

yelo

ma

for t

he sa

ke o

f sim

plic

ity).

For

a ge

nera

l ove

rvie

w o

f m

yelo

ma,

the

IM

F’s P

atie

nt H

andb

ook

shou

ld b

e yo

ur

"rst

ste

p, w

hile

the

IMF’s

Con

cise

Rev

iew

of

the

Dise

ase

and

Trea

tmen

t O

ptio

ns i

s a

mor

e in

-dep

th o

verv

iew

des

igne

d fo

r he

alth

care

pr

ofes

siona

ls an

d kn

owl-

edge

able

re

ader

s ou

tsid

e th

e m

edic

al

com

mun

ity.

Both

pub

licat

ions

, as

wel

l as

the

man

y bo

okle

ts in

the

IMF’s

Und

er-

stan

ding

ser

ies,

are

avai

labl

e on

the

IMF

web

site

mye

lom

a.or

g,

whe

re

you

will

"n

d a

wea

lth o

f in

form

atio

n. Y

ou c

an

also

ord

er c

opie

s of

our

boo

klet

s by

cal

l-in

g th

e IM

F at

800

-452

-CU

RE (2

873)

tol

l-fre

e in

the

Uni

ted

Stat

es a

nd C

anad

a, o

r 81

8-48

7-74

55 w

orld

wid

e, o

r by

sen

d ing

an

em

ail t

o th

eIM

F@m

yelo

ma.

org.

To h

elp

you

navi

gate

the

IMF

web

site,

we

have

org

aniz

ed o

ur i

nfor

mat

ion

acco

rd-

ing

to th

e 10

Ste

ps to

Bet

ter C

are®

, whi

ch

take

s you

from

dia

gnos

is (S

tep 

1) th

roug

h cl

ini c

al

tria

ls an

d ho

w

to

"nd

them

(S

tep 

10).

Info

rmat

ion

rele

vant

to

each

st

ep a

long

the

way

, inc

ludi

ng g

uide

lines

fo

r tes

t ing,

trea

ting,

tran

spla

ntin

g, a

sses

s-in

g re

spon

se,

man

agin

g sid

e e#

ects

, m

oni to

ring,

and

trea

ting

rela

psed

dise

ase,

is

avai

labl

e un

der t

he a

ppro

pria

te st

ep o

n th

e pa

th to

bet

ter c

are.

Wor

ds

appe

arin

g in

bo

ld

type

ar

e ex

plai

ned

in t

he “

Term

s an

d de

"niti

ons”

se

ctio

n at

the

end

of

this

book

let.

For

a m

ore

com

plet

e co

mpe

ndiu

m, p

leas

e re

fer

to th

e IM

F’s G

loss

ary o

f Mye

lom

a Te

rms a

nd

De!

nitio

ns a

t glo

ssar

y.m

yelo

ma.

org.

Wha

t is f

atig

ue?

Canc

er o

r can

cer t

reat

men

t fat

igue

is a

di

stre

ssin

g, p

ersis

tent

, sub

ject

ive s

ense

of

tire

dnes

s or e

xhau

stio

n th

at is

not

pr

opor

tiona

l to

rece

nt a

ctiv

ity a

nd

inte

rfer

es w

ith u

sual

func

tioni

ng.

In h

ealth

y pe

ople

, fat

igue

is u

nder

stoo

d as

exh

aust

ion

or t

iredn

ess

that

inte

rfer

es

to s

ome

exte

nt w

ith n

orm

al e

very

day

activ

ities

. It

usua

lly o

ccur

s af

ter

stre

nu-

ous

or p

rolo

nged

exe

rtio

n of

som

e ki

nd

and

is te

mpo

rary

. Res

t and

refra

inin

g fro

m

stre

nuou

s act

ivity

can

hel

p re

stor

e en

ergy

an

d m

ake

a he

alth

y pe

rson

feel

bet

ter.

Fatig

ue t

hat

is re

late

d to

can

cer

and

its

trea

tmen

ts,

how

ever

, is

di#e

rent

an

d m

ore

seve

re t

han

norm

al f

atig

ue a

nd

tend

s to

last

long

er. S

impl

y re

stin

g do

es

not

alle

viat

e th

is ty

pe o

f fa

tigue

, whi

ch

has

been

de"

ned

by t

he N

atio

nal

Com

-pr

ehen

sive

Canc

er N

etw

ork

(NCC

N)

as a

di

stre

ssin

g, p

ersis

tent

, sub

ject

ive

sens

e of

tir

edne

ss o

r ex

haus

tion

rela

ted

to c

ance

r or

can

cer

trea

tmen

t th

at i

s no

t pr

opor

-tio

nal

to r

ecen

t ac

tivity

and

int

erfe

res

with

us

ual

func

tioni

ng.

Asth

enia

(th

e m

edic

al t

erm

for

wea

knes

s or

the

loss

of

phys

i cal

str

engt

h) o

ften

acco

mpa

nies

or

is a

com

pone

nt o

f fat

igue

. Can

cer-r

elat

ed

fatig

ue (C

RF) m

ay a

lso b

e as

soci

ated

with

di

!cu

lty co

ncen

trat

ing,

diz

zine

ss, o

r a d

is-in

tere

st in

wha

t is g

oing

on

arou

nd y

ou.

In p

atie

nts

with

mye

lom

a, f

atig

ue a

nd

asth

enia

can

be

the

resu

lt of

man

y in

di-

vidu

al o

r co

llect

ive

caus

es.

You

shou

ld

repo

rt p

ersis

tent

fat

igue

and

/or

wea

k-ne

ss to

you

r hea

lthca

re p

rovi

ders

and

not

sim

ply

assu

me

that

the

y ar

e an

una

void

-ab

le

cons

eque

nce

of

your

di

agno

sis

and

trea

tmen

t.

76

mye

lom

a.or

g81

8-48

7-74

55 w

orldw

ide

• 8

00-4

52-C

URE

(287

3) to

ll-fre

e in U

S & Ca

nada

Mye

lom

a-re

late

d fa

tigu

eM

yelo

ma,

lik

e al

l ca

ncer

s, ca

n ca

use

debi

litat

ing

fatig

ue, q

uite

apa

rt fr

om t

he

fatig

ue c

ause

d by

tre

atin

g th

e di

seas

e.

Ther

e ar

e th

ree

com

mon

cau

ses o

f fat

igue

in

mye

lom

a pa

tient

s: m

yelo

ma-

indu

ced

anem

ia,

high

lev

els

of c

ytok

ines

, an

d pe

rsist

ent

pain

, al

l of

whi

ch c

an r

esul

t in

wei

ght

loss

, de

crea

sed

appe

tite,

and

fa

tigue

and

wea

knes

s. W

hen

they

are

co

mbi

ned,

fatig

ue c

an b

e se

vere

.

Ane

mia

Mye

lom

a ce

lls i

nter

fere

with

the

blo

od-

prod

ucin

g ac

tiviti

es

of

bone

m

arro

w,

ofte

n le

adin

g to

a s

hort

age

of r

ed b

lood

ce

lls (

RBCs

), or

ane

mia

. RB

Cs t

rans

port

ox

ygen

from

the

lung

s to

the

orga

ns a

nd

tissu

es a

roun

d th

e bo

dy, a

nd if

the

bod

y do

es n

ot r

ecei

ve e

noug

h ox

ygen

, th

e re

sult

is ex

haus

tion,

sho

rtne

ss o

f br

eath

, an

d th

e in

abili

ty t

o ca

rry

out

the

activ

i-tie

s of d

aily

livi

ng. A

nem

ia is

ofte

n th

e !r

st

sym

ptom

of m

yelo

ma.

Anem

ia is

ver

y co

mm

on in

pat

ient

s w

ith

mye

lom

a. A

t le

ast

60 %

–70

% o

f pa

tient

s w

ith m

yelo

ma

have

ane

mia

at

the

time

they

ar

e di

agno

sed

with

th

e di

seas

e.

Mos

t pa

tient

s w

ith

mye

lom

a ex

peri-

ence

ane

mia

at

som

e po

int

durin

g th

eir

dise

ase

cour

se.

If yo

ur d

octo

r sus

pect

s yo

u ha

ve a

nem

ia,

a ph

ysic

al e

xam

inat

ion

will

be

perf

orm

ed

and

your

blo

od w

ill b

e dr

awn

for l

ab te

sts.

It is

wise

to b

ring

a fa

mily

mem

ber o

r car

e-gi

ver w

ith y

ou to

you

r app

oint

men

t. H

e or

sh

e m

ay b

e ab

le to

add

to th

e in

form

atio

n yo

u pr

ovid

e. R

emem

ber

to r

epor

t an

y of

th

e fo

llow

ing

sym

ptom

s:

� Sh

ortn

ess o

f bre

ath

� La

ck o

f ene

rgy

and

mot

ivat

ion

� Ra

pid

hear

tbea

t�

Swel

ling

in th

e le

gs, e

spec

ially

in

the

ankl

es�

Diz

zine

ss�

Hea

dach

e�

Chi

lls�

Cha

nge

in a

ppet

ite�

Dec

reas

ed li

bido

A sim

ple

bloo

d te

st is

use

d to

det

erm

ine

your

hem

oglo

bin

leve

l, w

hich

mea

sure

s th

e nu

mbe

r of

RBC

s in

the

bod

y. L

ow

hem

oglo

bin

leve

ls in

dica

te

anem

ia.

Hem

oglo

bin

is m

easu

red

in u

nits

des

ig-

nate

d as

gra

ms

of R

BCs

per

deci

liter

of

bloo

d (g

/dL)

. Nor

mal

hem

oglo

bin

leve

ls ar

e 14

to 1

8 g/

dL fo

r men

and

12 to

16

g/dL

fo

r w

omen

. If

your

hem

oglo

bin

leve

l is

2 gr

ams

or m

ore

belo

w th

e le

vel t

hat w

as

norm

al fo

r you

bef

ore

your

mye

lom

a di

ag-

nosis

, you

are

con

sider

ed a

nem

ic.

For

new

ly d

iagn

osed

pat

ient

s w

ho a

re

anem

ic, t

he !

rst a

nd m

ost i

mpo

rtan

t thi

ng

to d

o is

trea

t th

e m

yelo

ma.

Ver

y of

ten,

w

hen

a tr

eatm

ent s

ucce

ssfu

lly a

ttac

ks a

nd

dest

roys

mye

lom

a ce

lls in

the

bon

e m

ar-

row

, whe

re a

ll bl

ood

cells

are

mad

e, t

he

mar

row

will

onc

e ag

ain

be a

ble

to m

ake

a no

rmal

num

ber o

f RBC

s, an

d th

e he

mo-

glob

in le

vel w

ill ri

se.

Whe

n a

patie

nt

is be

ing

trea

ted

for

mye

lom

a an

d is

resp

ondi

ng

wel

l to

th

erap

y, t

he b

lood

cou

nts

shou

ld id

eally

re

turn

to n

orm

al. H

owev

er, i

t is

ofte

n th

e ca

se th

at b

lood

cel

l cou

nts

drop

as

a sid

e e#

ect

of t

reat

men

t. So

me

of t

he t

hera

-pi

es t

hat

succ

essf

ully

kill

mye

lom

a ce

lls

supp

ress

the

bon

e m

arro

w’s

abili

ty t

o m

ake

need

ed b

lood

cel

ls. (S

ee “T

reat

men

t-re

late

d fa

tigue

” sec

tion.

)

Bloo

d tr

ansf

usio

ns

can

repl

ace

and

repl

enish

the

RBCs

that

you

hav

e lo

st a

nd

are

reco

mm

ende

d w

hen

imm

edia

te c

or-

rect

ion

of th

e an

emia

is d

esire

d. A

lthou

gh

tran

sfus

ions

hav

e an

imm

edia

te e

#ect

that

is

bene

!cia

l for

pat

ient

s, th

e in

crea

se in

he

mog

lobi

n le

vels

may

not

be

very

larg

e an

d m

ay la

st o

nly

up t

o a

few

wee

ks, s

o re

peat

ed t

rans

fusio

ns m

ay b

e ne

cess

ary.

U

nfor

tuna

tely

, afte

r a p

rolo

nged

per

iod

of

rece

ivin

g tr

ansf

used

blo

od, a

pat

ient

may

be

com

e re

sista

nt to

tran

sfus

ions

of b

lood

fro

m o

ther

peo

ple.

Hig

h le

vels

of c

ytok

ines

Som

e m

yelo

ma

patie

nts

have

hig

h le

vels

of c

ytok

ines

, w

hich

are

kno

wn

to b

e a

sour

ce o

f CRF

. Cyt

okin

es s

uch

as in

terle

u-ki

ns, i

nter

fero

n, a

nd t

umor

nec

rosis

fac

-to

r alp

ha (T

NFα

) are

mol

ecul

es th

at s

end

signa

ls w

ithin

the

imm

une

syst

em. W

hile

cy

toki

nes

are

rele

ased

by

T-ly

mph

ocyt

es

in r

espo

nse

to in

fect

ion

or in

%am

mat

ion

to h

elp

guar

d th

e bo

dy,

they

can

also

st

imul

ate

canc

er

cells

’ gr

owth

, hi

nder

ca

ncer

cel

ls’ n

atur

ally

pro

gram

med

dea

th

(apo

ptos

is), a

nd a

id c

ance

r cel

ls in

spre

ad-

ing

to o

ther

are

as o

f the

bod

y.

In h

igh

amou

nts,

cyto

kine

s ca

n be

tox

ic

and

lead

to

pers

isten

t fa

tigue

. The

e#e

ct

of c

ytok

ine

rele

ase

is m

uch

like

the

fatig

ue

you

feel

w

hen

!ght

ing

a vi

ral

illne

ss

such

as

the

%u, b

ut it

last

s m

uch

long

er.

E#ec

tive

anti-

mye

lom

a tr

eatm

ent

low

ers

the

leve

l of c

ytok

ines

in th

e bo

ne m

arro

w

envi

ronm

ent w

here

mye

lom

a gr

ows.

Pain

Man

y m

yelo

ma

patie

nts

su#e

r fro

m p

ain-

ful b

one

dise

ase

or f

rom

pai

n re

late

d to

pe

riphe

ral

neur

opat

hy (

PN),

a co

nditi

on

a#ec

ting

the

nerv

es in

the

hand

s and

feet

. PN

can

be

caus

ed b

y m

yelo

ma’s

e#e

ct o

n ne

rve

tissu

e an

d/or

by

the

side

e#ec

ts o

f ce

rtai

n tr

eatm

ents

. Ch

roni

c, s

ever

e pa

in

caus

es f

atig

ue,

and

som

e of

the

mos

t im

port

ant m

edic

atio

ns u

sed

to re

lieve

it –

an

ticon

vulsa

nts,

opia

tes,

and

antid

epre

s-sa

nts

– ca

n al

so c

ause

dro

wsin

ess,

loss

of

appe

tite,

nau

sea,

wei

ght

loss

, and

hea

d-ac

he, a

ll ad

ding

to fa

tigue

.

Trea

tmen

t-re

late

d fa

tigu

eFa

tigue

is th

e mos

t com

mon

side

e!ec

t of

canc

er tr

eatm

ent.

Acco

rdin

g to

the

Nat

iona

l Ca

ncer

Ins

ti-tu

te (

NCI

), fa

tigue

is

the

mos

t co

mm

on

side

e#ec

t of c

ance

r tre

atm

ent.

As lo

ng a

s th

ere

have

bee

n dr

ugs

to tr

eat m

yelo

ma,

bo

th s

tand

ard

chem

othe

rapy

age

nts

and

the

new

er t

hera

pies

(kn

own

as “

nove

l ag

ents

”),

fatig

ue h

as b

een

a co

mm

on

side

e#ec

t of

tre

atm

ent.

Chem

othe

rapy

, ra

diat

ion

ther

apy,

su

rger

y,

high

-dos

e th

erap

y w

ith s

tem

cel

l re

scue

, an

d th

e ne

wer

the

rapi

es (w

hich

fall

into

the

new

dr

ug c

ateg

orie

s of

im

mun

omod

ulat

ory

drug

s an

d pr

otea

som

e in

hibi

tors

) m

ay

all c

ause

fatig

ue.

Chem

othe

rapy

You

may

ex

perie

nce

fatig

ue

beca

use

ther

apy

can

kill

heal

thy

cells

alo

ng w

ith

canc

er c

ells,

and

the

body

exp

ends

ext

ra

ener

gy t

o re

pair

the

heal

thy

cells

. If

too

man

y w

hite

cells

are

kill

ed d

urin

g th

erap

y,

98

mye

lom

a.or

g81

8-48

7-74

55 w

orldw

ide

• 8

00-4

52-C

URE

(287

3) to

ll-fre

e in U

S & Ca

nada

you

may

get

an

infe

ctio

n, c

ontr

ibut

ing

furt

her t

o fa

tigue

. If t

oo m

any

red

cells

are

ki

lled,

ane

mia

resu

lts. S

ide

e!ec

ts s

uch

as

naus

ea a

nd v

omiti

ng,

inso

mni

a, m

uscl

e w

astin

g, a

nd c

hang

es in

moo

d m

ay a

lso

caus

e fa

tigue

and

wea

knes

s, an

d ar

e co

m-

mon

whe

n pa

tient

s un

derg

o hi

gh-d

ose

chem

othe

rapy

(us

ually

mel

phal

an)

with

st

em c

ell r

escu

e.

Nov

el th

erap

ies

In t

he c

ase

of t

he n

ewes

t pr

otea

som

e in

hibi

tor,

Kypr

olis®

(ca

r"lz

omib

), fa

tigue

is

the

mos

t co

mm

on s

ide

e!ec

t pa

tient

s ex

perie

nce

(50

% o

f th

e pa

tient

s in

clin

i-ca

l tria

ls re

port

ed fa

tigue

), an

d it

can

be

cum

ulat

ive,

incr

easin

g in

seve

rity

over

the

dura

tion

of tr

eatm

ent.

For m

ore

info

rma-

tion,

see

the

IMF’s

boo

klet

Und

erst

andi

ng

Kypr

olis®

(car

!lzo

mib

) for

Inje

ctio

n.

Fatig

ue

is al

so

a co

mm

only

re

port

ed

side

e!ec

t of

Pom

alys

t® (p

omal

idom

ide)

, Re

vlim

id®

(lena

lidom

ide)

, an

d Ve

lcad

e®

(bor

tezo

mib

), fo

r re

ason

s kn

own

and

unkn

own.

The

se d

rugs

can

all

impa

ir th

e pr

oduc

tion

of n

ew b

lood

cel

ls, le

adin

g to

an

emia

and

infe

ctio

n, b

ut th

ere

are

othe

r fa

ctor

s, in

clud

ing

incr

ease

d cy

toki

ne

leve

ls, t

hat

can

caus

e fa

tigue

. With

the

se

drug

s, fa

tigue

may

im

prov

e ov

er t

ime

with

dur

atio

n of

trea

tmen

t. D

octo

rs h

ave

repo

rted

tha

t as

then

ia a

nd fa

tigue

ofte

n im

prov

e as

the

mye

lom

a di

seas

e bu

rden

de

crea

ses,

usua

lly a

fter t

he "

rst t

wo

cycl

es

of th

erap

y. In

the

case

of V

elca

de, p

atie

nts

may

dev

elop

PN

, and

som

e ca

ses o

f PN

are

pa

infu

l, w

hich

is in

itse

lf fa

tigui

ng. A

dd to

th

is th

e us

e of

pai

n m

edic

atio

ns o

f var

ious

ty

pes t

hat c

an a

lso c

ause

fatig

ue, a

nd th

is sid

e e!

ect c

an b

e an

ong

oing

con

cern

.

Thal

omid

® (th

alid

omid

e),

the

earli

est

nove

l th

erap

y, n

ot o

nly

caus

es P

N a

nd

drow

sines

s, bu

t ca

n al

so s

uppr

ess

the

func

tion

of t

he t

hyro

id g

land

, ca

usin

g hy

poth

yroi

dism

(lo

w l

evel

s of

sec

retio

n of

thy

roid

hor

mon

e) w

hich

slo

ws

dow

n th

e m

etab

olism

so th

at th

e bo

dy d

oes n

ot

burn

cal

orie

s fro

m f

ood

fast

eno

ugh

to

prov

ide

adeq

uate

ene

rgy.

Ster

oids

Ster

oids

(d

exam

etha

sone

, pr

edni

sone

, an

d m

ethy

lpre

dniso

lone

), w

hich

ar

e pa

rt o

f al

mos

t ev

ery

trea

tmen

t re

gim

en

for

mye

lom

a, c

an c

ause

inso

mni

a, a

!ect

m

ood,

sup

pres

s th

e im

mun

e re

spon

se,

and

caus

e m

uscl

e w

astin

g, a

ll of

whi

ch

resu

lt in

fat

igue

and

wea

knes

s. St

eroi

ds

can

caus

e a

num

ber o

f oth

er s

erio

us s

ide

e!ec

ts a

s w

ell,

and

shou

ld b

e m

onito

red

clos

ely.

You

may

nee

d th

e fu

ll pr

escr

ibed

do

se o

f de

xam

etha

sone

ini

tially

to

get

the

mye

lom

a un

der c

ontr

ol, b

ut if

you

are

re

ceiv

ing

ther

apy

with

ste

roid

s an

d ar

e ex

perie

ncin

g sid

e e!

ects

tha

t th

reat

en

your

hea

lth a

nd/o

r qu

ality

of

life,

you

m

ust

repo

rt t

hem

to

your

doc

tor,

who

w

ill a

djus

t you

r dos

e or

sch

edul

e, c

hang

e th

e st

eroi

d yo

u’re

tak

ing,

or

give

you

a

“ste

roid

vac

atio

n.”

Radi

atio

n th

erap

yRa

diat

ion

ther

apy

is kn

own

to

caus

e fa

tigue

rega

rdle

ss o

f the

site

bei

ng tr

eate

d,

and

it se

ems

to g

row

wor

se o

ver

time.

Fa

tigue

fro

m r

adia

tion

ther

apy

usua

lly

last

s 3–

4 w

eeks

afte

r the

trea

tmen

t end

s, bu

t may

last

up

to 3

mon

ths.

Up

to 8

0 %

of

patie

nts

repo

rt fa

tigue

dur

ing

trea

tmen

t, an

d up

to 3

0 %

repo

rt it

at f

ollo

w-u

p vi

sits.

Not

onl

y do

es r

adia

tion

ther

apy

dam

age

both

hea

lthy

cells

and

can

cer c

ells,

requ

ir-in

g ex

tra

ener

gy to

repa

ir ce

llula

r dam

age,

bu

t if y

ou a

re h

avin

g ra

diat

ion

ther

apy

in

the

uppe

r che

st o

r nec

k ar

ea, t

he th

yroi

d

glan

d m

ay b

e a!

ecte

d, c

ausin

g hy

poth

y-ro

idism

. As

is no

ted

abov

e, h

ypot

hyro

id-

ism s

low

s do

wn

the

body

’s m

etab

olism

so

tha

t it

does

not

bre

ak d

own

food

fast

en

ough

to p

rovi

de a

dequ

ate

ener

gy.

Man

agin

g tr

eatm

ent-

rela

ted

fati

gue

Ane

mia

Trea

tmen

ts f

or m

yelo

ma

can

redu

ce a

ll th

e bl

ood

cell

coun

ts, i

nclu

ding

RBC

s, an

d th

us ca

n ca

use

anem

ia. If

your

trea

tmen

t is

the

caus

e of

the

anem

ia, a

nd th

e m

yelo

ma

is im

prov

ing

whi

le th

e tr

eatm

ent i

s tak

ing

a to

ll on

you

r re

d bl

ood

cells

, you

r do

c-to

r may

ord

er a

blo

od tr

ansf

usio

n an

d/or

an

ery

thro

poie

sis

stim

ulat

ing

agen

t, or

ES

A. T

hese

age

nts

(Pro

crit®

, Epo

gen®

, or

Neu

last

a®)

can

be u

sed

to s

timul

ate

the

prod

uctio

n of

RBC

s on

ly w

hen

ther

e is

a co

ncom

itant

che

mot

hera

py a

gent

in u

se,

and

carr

y th

eir o

wn

side

e!ec

ts a

nd ri

sks.

They

sho

uld

be u

sed

with

cau

tion

in li

ght

of th

eir a

ssoc

iatio

n w

ith in

crea

sed

tum

or

grow

th a

nd r

educ

ed s

urvi

val i

n pa

tient

s w

ith

canc

er,

and

the

iden

ti"ca

tion

of

rece

ptor

s for

them

on

mye

lom

a ce

lls.

Neu

trop

enia

If yo

ur

trea

tmen

t is

caus

ing

low

ered

w

hite

cel

l cou

nts

(neu

trop

enia

), an

d yo

u de

velo

p an

infe

ctio

n, tr

eatm

ent w

ith a

nti-

biot

ics

and

antiv

irals

and

the

supp

ort

of

a dr

ug t

hat

stim

ulat

es w

hite

cel

l pro

duc-

tion

(suc

h as

Neu

poge

n®) c

an h

elp

to tr

eat

the

prob

lem

un

derly

ing

the

infe

ctio

n an

d fa

tigue

, and

will

hel

p pr

even

t it f

rom

oc

curr

ing

agai

n.

Oth

er o

ptio

ns fo

r man

agin

g tr

eatm

ent-

rela

ted

fati

gue

Your

do

ctor

ca

n as

sess

yo

ur

leve

l of

fa

tigue

and

the

exte

nt to

whi

ch it

impa

irs

your

qua

lity

of li

fe, a

nd e

ither

redu

ce y

our

dose

of m

edic

atio

n, su

gges

t a b

ette

r tim

e of

day

to ta

ke o

r rec

eive

it, o

r sto

p it

until

yo

ur fa

tigue

impr

oves

.

� If

your

fatig

ue is

sev

ere

enou

gh to

pre

-ve

nt y

ou f

rom

per

form

ing

the

norm

al

activ

ities

of d

aily

livi

ng, t

he d

octo

r can

pr

escr

ibe

drug

s th

at a

re t

aken

at

low

do

ses

early

in

the

mor

ning

to

ensu

re

that

you

are

abl

e to

be

mor

e ac

tive

dur-

ing

the

day:

• Pro

vigi

l® (a

rmod

a"ni

l)• R

italin

® (m

ethy

lfeni

date

)• A

dder

all®

(am

phet

amin

e an

d de

xtro

amph

etam

ine)

� A

t the

201

2 Am

eric

an S

ocie

ty o

f Clin

ical

O

ncol

ogy

(ASC

O)

annu

al m

eetin

g, t

he

resu

lts o

f a p

hase

III t

rial u

sing

Wisc

on-

sin g

inse

ng to

trea

t CRF

wer

e pr

esen

ted

by D

ebra

Bar

ton,

RN

, PhD

(May

o Cl

inic

, Ro

ches

ter,

MN

). Th

e re

sults

of t

his

tria

l w

ere

publ

ished

in

the

Jour

nal

of t

he

Natio

nal C

ance

r In

stitu

te, J

uly

13, 2

013,

co

nclu

ding

tha

t da

ta s

uppo

rt t

he b

en-

e"t o

f Am

eric

an g

inse

ng, 2

000

mg

daily

, on

CRF

ove

r an

8-w

eek

perio

d. T

here

w

ere

no d

iscer

nabl

e to

xici

ties

asso

ci-

ated

with

the

tre

atm

ent.

The

rese

arch

-er

s di

scov

ered

tha

t pa

tient

s w

ho w

ere

rece

ivin

g an

ti-ca

ncer

tre

atm

ent

at t

he

time

they

too

k th

e gi

nsen

g re

spon

ded

bett

er t

han

thos

e w

ho w

ere

not

cur-

rent

ly b

eing

trea

ted.

Fur

ther

clin

ical

tri-

als

to v

alid

ate

thes

e re

sults

are

nee

ded,

bu

t it

is en

cour

agin

g to

kno

w t

hat

a w

idel

y av

aila

ble

and

inex

pens

ive

herb

al

agen

t with

min

imal

sid

e e!

ects

may

be

help

ful f

or tr

eatm

ent-r

elat

ed fa

tigue

.

� It

is a

lso w

orth

men

tioni

ng t

hat

at t

he

time

this

publ

icat

ion

is be

ing

writ

ten,

1110

mye

lom

a.or

g81

8-48

7-74

55 w

orldw

ide

• 8

00-4

52-C

URE

(287

3) to

ll-fre

e in U

S & Ca

nada

man

y cl

inic

al tr

ials

are

bein

g co

nduc

ted

with

va

rious

ap

proa

ches

to

he

lpin

g ca

ncer

pat

ient

s be

tter

man

age

thei

r CR

F. Th

e N

CI c

linic

al tr

ials

data

base

will

en

able

you

to

!nd

clin

ical

tria

ls te

st-

ing

vario

us m

etho

ds t

o m

anag

e CR

F. Cu

rren

t cl

inic

al t

rials

for

CRF

incl

ude

thos

e te

stin

g:

� G

inse

ng�

Oth

er h

erbs

� A

cupr

essu

re�

Acu

punc

ture

� Ex

erci

se p

rogr

ams

� Pr

escr

iptio

n dr

ugs

Oth

er p

ossi

ble

caus

es

of fa

tigu

eM

edic

atio

ns fo

r oth

er

med

ical

cond

itio

nsAn

othe

r fa

ctor

to

cons

ider

in t

reat

men

t-re

late

d fa

tigue

is o

ther

dru

gs y

ou m

ay b

e ta

king

for o

ther

med

ical

con

ditio

ns w

hile

yo

u ar

e be

ing

trea

ted

for

mye

lom

a. T

he

drug

s th

emse

lves

, or

the

com

bina

tion

of

drug

s, m

ay b

e ca

usin

g fa

tigue

. If y

ou a

re

taki

ng a

num

ber

of d

rugs

at

once

, it

is be

st to

con

sult

with

you

r pha

rmac

ist a

nd

prov

ide

him

or h

er w

ith a

com

plet

e lis

t of

the

med

icat

ions

(w

ith c

orre

ct d

osag

es)

you’

re t

akin

g. Y

our

phar

mac

ist c

an h

elp

you

by c

heck

ing

for d

rug

side

e"ec

ts a

nd

inte

ract

ions

. The

re m

ay b

e ot

her v

ersio

ns

of d

rugs

you

can

tak

e th

at d

o no

t ca

use

the

sam

e sid

e e"

ects

, or o

ther

sch

edul

es

you

can

follo

w fo

r you

r dru

g re

gim

ens.

Dru

gs f

or t

he f

ollo

win

g co

nditi

ons

that

ar

e co

mm

on a

mon

g m

yelo

ma

patie

nts

may

all

caus

e fa

tigue

:

� H

igh

bloo

d pr

essu

re m

edic

atio

ns m

ay

slow

dow

n th

e pu

mpi

ng a

ctio

n of

the

he

art

as w

ell

as d

epre

ss t

he c

entr

al

nerv

ous s

yste

m.

� St

atin

s us

ed t

o tr

eat

high

cho

lest

erol

st

op th

e pr

oduc

tion

of m

uscl

e gr

owth

, an

d so

me

rese

arch

ers

thin

k th

at t

hey

also

int

erfe

re w

ith t

he p

rodu

ctio

n of

en

ergy

at t

he c

ellu

lar l

evel

.�

Prot

on p

ump

inhi

bito

rs u

sed

to t

reat

ga

stro

esop

hage

al re

#ux

dise

ase

(GER

D)

and

rela

ted

diso

rder

s fre

quen

tly l

ead

to l

ow l

evel

s of

mag

nesiu

m i

n th

e bl

ood,

whi

ch c

an c

ause

loss

of a

ppet

ite,

fatig

ue, a

nd w

eakn

ess.

� Tr

anqu

ilize

rs

(ben

zodi

azep

ines

) ar

e us

ed t

o tr

eat

a va

riety

of

anxi

ety

dis-

orde

rs,

agita

tion

and

mus

cle

spas

ms,

neur

opat

hic

pain

, an

d se

izur

es.

They

ca

n ca

use

seda

tion

and

fatig

ue b

y su

p-pr

essin

g ac

tivity

in p

arts

of t

he c

entr

al

nerv

ous s

yste

m.

� A

ntid

epre

ssan

ts

are

used

no

t on

ly

to t

reat

dep

ress

ion,

but

are

also

pre

-sc

ribed

for

neu

ropa

thic

pai

n, a

nxie

ty

diso

rder

s, ob

sess

ive

com

pulsi

ve

dis-

orde

r, an

d so

me

horm

one-

rela

ted

dis-

orde

rs.

Rese

arch

ers

belie

ve t

hat

they

ca

use

fatig

ue t

hrou

gh t

heir

e"ec

t on

ho

rmon

es a

nd o

n ne

urot

rans

mitt

ers

in

the

brai

n. T

hey

can

also

low

er le

vels

of

pota

ssiu

m, c

ausin

g m

uscl

e w

eakn

ess.

� A

ntib

iotic

s ca

n a"

ect

som

e pe

ople

w

ith fe

elin

gs o

f tire

dnes

s an

d ex

trem

e fa

tigue

, alth

ough

res

earc

hers

hav

e no

t di

scov

ered

why

. Cer

tain

ly t

he c

hang

es

in b

owel

hab

its a

nd fo

od a

nd n

utrie

nt

abso

rptio

n th

at c

an o

ccur

with

ant

ibio

t-ic

s ca

n ca

use

fatig

ue a

nd l

istle

ssne

ss.

The

pack

age

inse

rts o

f man

y an

tibio

tics

(e.g

., Ba

ctrim

DS®

, Ke#

ex®,

Zith

rom

ax®)

lis

t fa

tigue

or

som

nole

nce

(sle

epin

ess)

as

a p

oten

tial s

ide

e"ec

t.�

Diu

retic

s, pr

escr

ibed

to

cont

rol

high

bl

ood

pres

sure

, gla

ucom

a, e

dem

a (#

uid

rete

ntio

n th

at

caus

es

swel

ling)

, an

d ot

her c

ondi

tions

, can

inte

rfer

e w

ith th

e ba

lanc

e of

el

ectr

olyt

es

(pot

assiu

m,

sodi

um, c

hlor

ide,

cal

cium

, mag

nesiu

m)

in t

he b

ody.

In a

dditi

on t

o m

any

othe

r se

rious

pr

oble

ms,

elec

trol

yte

imba

l-an

ces

can

caus

e ex

trem

e fa

tigue

, mus

-cl

e w

eakn

ess,

and

pain

in jo

ints

, bon

es,

and

mus

cles

.�

Slee

p ai

ds

inte

ract

w

ith

the

sam

e ne

urot

rans

mitt

ers

in t

he b

rain

as

tran

-qu

ilize

rs,

and

can

also

cau

se f

atig

ue.

Patie

nts

!ght

ing

the

inso

mni

a ca

used

by

dex

amet

haso

ne m

ay a

dd t

o th

eir

post

-dex

fatig

ue b

y us

ing

cert

ain

sleep

-in

g m

edic

atio

ns.

� A

nti-e

met

ics,

pres

crib

ed to

cont

rol n

au-

sea

and

vom

iting

, can

also

caus

e fa

tigue

an

d as

then

ia t

hrou

gh t

heir

e"ec

ts o

n ne

urot

rans

mitt

ers.

� A

ntih

ista

min

es

such

as

Be

nadr

yl®

(dip

henh

ydra

min

e) a

re u

sed

to in

hibi

t al

lerg

ic r

espo

nse

and

are

frequ

ently

gi

ven

to p

reve

nt d

rug

reac

tions

. The

y ar

e al

so g

iven

to

peop

le t

o he

lp t

hem

sle

ep, a

nd t

hus

can

add

to t

he g

ener

al

feel

ing

of li

stle

ssne

ss a

nd fa

tigue

.

Anx

iety

and

dep

ress

ion

Anxi

ety,

st

ress

, an

d de

pres

sion

fre-

quen

tly

acco

mpa

ny

a ca

ncer

di

agno

-sis

. It

is al

mos

t ab

norm

al N

OT

to f

eel

anxi

ous

and

depr

esse

d w

hen

face

d w

ith a

life

-thr

eate

ning

illn

ess.

Patie

nts

are

anxi

ous

and

depr

esse

d ab

out

hav-

ing

canc

er

and

the

unkn

own

cour

se

ahea

d, a

bout

the

!na

ncia

l im

pact

, an

d ab

out

mee

ting

expe

ctat

ions

at

w

ork

and

in t

he fa

mily

. Str

ess,

depr

essio

n, a

nd

fatig

ue g

o ha

nd in

han

d. In

som

nia

ofte

n ac

com

pani

es t

hese

fee

lings

, agg

rava

ting

the

cycl

e of

dep

ress

ion,

sle

eple

ssne

ss,

and

fatig

ue.

It’s o

ften

di$

cult

to k

now

whe

ther

dep

res-

sion

caus

es f

atig

ue o

r vi

ce v

ersa

, but

it’s

impo

rtan

t to

try

to

dete

rmin

e if

depr

es-

sion

is th

e pr

imar

y pr

oble

m.

It is

mos

t he

lpfu

l to

talk

to y

our d

octo

r abo

ut y

our

feel

ings

, an

d to

see

k a

supp

ort

syst

em

to h

elp

you

man

age

your

men

tal h

ealth

. Fo

r so

me

patie

nts,

the

need

for

goo

d em

otio

nal s

uppo

rt c

an b

e m

et w

ithin

the

com

mun

ity o

f fa

mily

and

frie

nds;

oth-

ers

!nd

med

itatio

n an

d re

laxa

tion

tech

-ni

ques

hel

pful

; oth

ers

seek

mem

bers

hip

in a

sup

port

gro

up w

ith fe

llow

mye

lom

a pa

tient

s; m

any

seek

pr

ofes

siona

l he

lp

from

a p

sych

olog

ist o

r psy

chia

trist

. The

re

is no

stig

ma

atta

ched

to

seek

ing

help

at

this

time

in y

our l

ife, o

r to

taki

ng a

med

i-ca

tion

for

depr

essio

n or

anx

iety

tha

t w

ill

help

you

feel

and

func

tion

bett

er.

Poor

nut

riti

onFa

tigue

can

be

the

resu

lt of

not

eat

ing

enou

gh o

r no

t ge

ttin

g en

ough

cal

orie

s, vi

tam

ins,

and

min

eral

s fro

m w

hat y

ou a

re

eatin

g. T

here

are

man

y re

ason

s m

yelo

ma

patie

nts a

nd c

ance

r pat

ient

s in

gene

ral d

o no

t rec

eive

eno

ugh

nutr

ition

. Eve

n w

hen

patie

nts

eat

the

sam

e am

ount

the

y di

d

1312

mye

lom

a.or

g81

8-48

7-74

55 w

orldw

ide

• 8

00-4

52-C

URE

(287

3) to

ll-fre

e in U

S & Ca

nada

befo

re d

iagn

osis,

the

y m

ay l

ose

wei

ght

beca

use

the

body

may

not

be

able

to

abso

rb a

nd u

se a

ll av

aila

ble

nutr

ient

s. Ad

ditio

nally

, a g

row

ing

tum

or, a

n in

fec-

tion,

a fe

ver,

and

shor

tnes

s of

bre

ath

can

all

caus

e an

inc

reas

e in

the

am

ount

of

ener

gy th

e bo

dy n

eeds

eac

h da

y. P

atie

nts

are

ofte

n de

alin

g w

ith t

reat

men

ts t

hat

caus

e na

usea

, di

arrh

ea,

cons

tipat

ion,

or

anor

exia

(ap

petit

e lo

ss),

and

with

em

o-tio

nal s

tres

s tha

t dam

pens

app

etite

.

Mai

ntai

ning

go

od

nutr

ition

is

vita

l to

!g

htin

g fa

tigue

. You

nee

d 15

cal

orie

s fo

r ev

ery

poun

d of

you

r w

eigh

t ea

ch d

ay t

o ke

ep y

our

wei

ght

stab

le. I

f you

hav

e lo

st

wei

ght,

you

need

an

extr

a 50

0 ca

lorie

s ea

ch d

ay. If

you

are

unde

rgoi

ng tr

eatm

ent,

it’s i

mpo

rtan

t to

eat p

rote

in, b

ecau

se p

ro-

tein

rep

airs

and

reb

uild

s da

mag

ed c

ells.

Th

e be

st s

ourc

es o

f pro

tein

are

from

the

da

iry a

nd m

eat

grou

ps. (

If yo

u ar

e no

t a

com

mitt

ed v

egan

or

vege

taria

n pr

ior

to

diag

nosis

, it’s

not

the

bes

t tim

e to

ado

pt

thos

e di

ets

whe

n yo

u’re

bei

ng tr

eate

d fo

r ca

ncer

.) Th

e N

CI p

ublic

atio

n Ea

ting

Hint

s, av

aila

ble

on t

he c

ance

r.gov

web

site,

is

free

and

can

help

you

add

ress

you

r spe

cial

di

etar

y ne

eds d

urin

g tr

eatm

ent.

Deh

ydra

tion

can

also

dra

in y

our

ener

gy.

Mak

e su

re t

hat

you

are

drin

king

eno

ugh

liqui

ds

to

rest

ore

wha

t m

ay

be

lost

w

ith v

omiti

ng o

r di

arrh

ea.

All

mye

lom

a pa

tient

s, bu

t esp

ecia

lly th

ose

with

kid

ney

dysf

unct

ion,

mus

t drin

k pl

enty

of w

ater

to

"ush

out

the

kidn

eys

and

redu

ce th

e sid

e e#

ects

of m

edic

atio

ns.

Redu

ced

acti

vity

Cont

rary

to

wid

ely

held

opi

nion

, res

ting

and

napp

ing

is no

t th

e be

st r

emed

y fo

r CR

F. In

activ

ity d

eepe

ns f

atig

ue.

Expe

rts

now

rec

omm

end

frequ

ent

light

exe

rcise

to re

duce

str

ess,

build

and

mai

ntai

n bo

ne

and

mus

cle,

im

prov

e en

dura

nce,

an

d re

duce

fat

igue

. Wal

king

just

a s

hort

dis-

tanc

e an

d tr

ying

to g

o a

little

fart

her e

ach

day

can

help

you

gai

n st

reng

th. I

f bo

ne

pain

mak

es it

di$

cult

to w

alk

or d

o ot

her

exer

cise

, sw

imm

ing

or tr

eadi

ng w

ater

can

be

a n

on-s

tres

sful

and

ver

y e#

ectiv

e su

b-st

itute

. The

res

istan

ce o

f the

wat

er h

elps

to

bui

ld m

uscl

e st

reng

th.

Som

etim

es si

mpl

y for

cing

your

self

to ke

ep

up w

ith yo

ur n

orm

al sc

hedu

le an

d no

t giv

e in

to fa

tigue

– u

sing

“min

d ov

er m

atte

r” –

can

get

you

thro

ugh

a ba

d da

y. A

t ot

her

times

, do

ing

som

ethi

ng y

ou e

njoy

can

di

stra

ct a

nd r

esto

re y

ou, a

nd h

elp

over

-co

me

fatig

ue.

To c

onse

rve

ener

gy,

try

alte

rnat

ing

sede

ntar

y an

d m

ore

phys

ical

ly

dem

andi

ng a

ctiv

ities

, and

sche

dule

act

ivi-

ties

at y

our t

imes

of p

eak

ener

gy. D

iscus

s al

l ex

erci

se p

lans

with

the

doc

tor

trea

t-in

g yo

ur m

yelo

ma

and

get

clea

ranc

e fo

r an

ythi

ng y

ou p

lan

to d

o. E

xerc

ise s

houl

d be

ta

ilore

d to

yo

ur

bone

he

alth

an

d ov

eral

l !tn

ess.

Goi

ng fo

rwar

dG

ood

com

mun

icat

ion

with

you

r he

alth

-ca

re te

am is

ess

entia

l. If

any

chan

ges h

ave

occu

rred

tha

t yo

u th

ink

coul

d be

add

ing

to y

our

fatig

ue, d

o no

t he

sitat

e to

brin

g th

em to

the

atte

ntio

n of

you

r nur

ses

and

doct

ors.

Som

e fa

ctor

s th

at m

ay n

ot b

e ob

viou

s co

uld

be m

akin

g yo

ur f

atig

ue

wor

se,

and

man

y ar

e tr

eata

ble.

Yo

ur

heal

thca

re t

eam

can

wor

k w

ith y

ou a

nd

your

care

give

r(s) t

o de

velo

p a

plan

for y

ou.

Dep

endi

ng o

n th

eir !

ndin

gs, t

hey

may

do

the

follo

win

g:

� A

djus

t you

r med

icat

ions

� C

hang

e or

mod

ify y

our d

ieta

ry in

take

� Im

prov

e yo

ur "

uid

and

elec

trol

yte

inta

ke�

Trea

t the

und

erly

ing

caus

e(s)

as i

s ap

prop

riate

� Pr

escr

ibe

drug

s tha

t can

hel

p yo

u be

m

ore

wak

eful

dur

ing

the

day

� C

reat

e st

rate

gies

for c

opin

g w

ith a

nd

man

agin

g yo

ur fa

tigue

� Su

gges

t a c

linic

al tr

ial,

if ap

prop

riate

, fo

r tre

atin

g fa

tigue

Alon

g w

ith tr

ansf

usio

ns, m

edic

atio

ns,

and

dose

and

sche

dule

adj

ustm

ents

that

th

e do

ctor

can

hel

p w

ith, t

here

are

also

a

num

ber o

f oth

er th

ings

you

can

do

to m

anag

e an

d co

pe w

ith y

our f

atig

ue,

incl

udin

g th

e fo

llow

ing:

� Ex

erci

se (w

alki

ng, s

wim

min

g, g

entle

yo

ga)

� D

evel

opin

g co

ping

stra

tegi

es (d

oing

th

ings

you

enj

oy, s

eein

g pe

ople

you

en

joy)

� M

odi!

catio

n of

act

iviti

es (r

e-es

tabl

ish-

men

t of p

riorit

ies,

use

of la

bor-s

avin

g de

vice

s, ge

ttin

g a

good

nig

ht’s

sleep

)�

Coun

selin

g

Invo

lve

your

fam

ily a

nd c

areg

iver

s. Th

ey

can

be g

reat

supp

ort.

Do

not b

e as

ham

ed

or a

fraid

to

talk

abo

ut y

our

fatig

ue a

nd

the

impa

ct it

has

on

your

life

. Goo

d co

m-

mun

icat

ion

with

you

r he

alth

care

tea

m is

es

sent

ial w

hile

you

are

a m

yelo

ma

patie

nt.

Bein

g a g

ood

patie

nt m

eans

repo

rtin

g sid

e e#

ects

pro

mpt

ly a

nd c

lear

ly, n

ot k

eepi

ng

silen

t so

as n

ot to

“bot

her”

the

doct

or. Y

our

doct

or c

anno

t ens

ure

e#ec

tive

trea

tmen

t w

ith g

ood

qual

ity o

f life

unl

ess

you

play

an

act

ive

role

in y

our o

wn

care

.

The

IMF

Info

Line

is

here

to

help

fac

ili-

tate

th

e be

st

poss

ible

di

alog

ue

with

yo

ur h

ealth

care

tea

m,

and

to h

elp

you

in a

ny w

ay w

e ca

n. P

leas

e ca

ll us

at

800-

452-

CURE

(287

3) o

r 818

-487

-745

5, o

r w

rite

to In

foLi

ne@

mye

lom

a.or

g.

Term

s and

de!

niti

ons

Anem

ia: A

dec

reas

e in

hem

oglo

bin

cont

aine

d in

red

bloo

d ce

lls, w

hich

car

ry o

xyge

n to

the

body

’s tis

sues

and

org

ans.

Anem

ia is

usu

ally

de

!ned

as

hem

oglo

bin

belo

w 1

0 g/

dL, w

ith

over

13–

14 g

/dL

cons

ider

ed n

orm

al, a

nd/o

r a

decr

ease

of %

2 g/

dL fr

om th

e no

rmal

leve

l for

an

indi

vidu

al.

Antib

ody:

A p

rote

in p

rodu

ced

by w

hite

blo

od

cells

cal

led

plas

ma

cells

to

!ght

inf

ectio

n an

d di

seas

e.Bo

ne m

arro

w: T

he s

oft,

spon

gy ti

ssue

in th

e ce

nter

of

bone

s th

at p

rodu

ces

whi

te b

lood

ce

lls, r

ed b

lood

cel

ls, a

nd p

late

lets

. Thi

s is t

he

tissu

e w

ithin

whi

ch a

bnor

mal

pla

sma

cells

bu

ild u

p to

cau

se m

yelo

ma.

Cell:

The

bas

ic u

nit o

f any

livin

g or

gani

sm. M

il-lio

ns o

f mic

rosc

opic

cells

com

prise

eac

h or

gan

and

tissu

e in

the

body

.Cy

toki

nes:

Pro

tein

s se

cret

ed b

y ce

lls w

hich

ca

n st

imul

ate

or i

nhib

it gr

owth

/act

ivity

in

othe

r ce

lls.

Cyto

kine

s ar

e pr

oduc

ed l

ocal

ly

(i.e.

, in

the

bone

mar

row

) and

circ

ulat

e in

the

bloo

dstre

am. T

hey

are

norm

ally

rel

ease

d in

re

spon

se to

infe

ctio

n.El

ectr

olyt

es:

Min

eral

s in

you

r bl

ood

and

othe

r bod

y "u

ids t

hat c

arry

an

elec

tric c

harg

e.

They

a#e

ct th

e am

ount

of w

ater

in y

our b

ody,

the

acid

ity o

f yo

ur b

lood

(pH

), yo

ur m

uscl

e fu

nctio

n, a

nd o

ther

impo

rtan

t pro

cess

es.

Eryt

hrop

oies

is:

The

form

atio

n of

new

red

bl

ood

cells

.Ex

tram

edul

lary

pla

smac

ytom

a:

A tu

mor

m

ade

up o

f m

onoc

lona

l pla

sma

cells

tha

t is

foun

d in

sof

t tiss

ue o

utsid

e of

the

bone

mar

-ro

w a

nd se

para

te fr

om b

one.

Hem

atol

ogic

mal

igna

ncy:

A c

ance

r of

the

bo

ne m

arro

w o

r blo

od ce

lls.

Imm

unog

lobu

lin (

Ig):

A pr

otei

n pr

oduc

ed

by p

lasm

a ce

lls; a

n es

sent

ial p

art o

f the

bod

y’s

1481

8-48

7-74

55 w

orldw

ide

• 8

00-4

52-C

URE

(287

3) to

ll-fre

e in U

S & Ca

nada

imm

une

syst

em.

Imm

unog

lobu

lins

atta

ch

to f

orei

gn s

ubst

ance

s (a

ntig

ens)

and

assis

t in

des

troyi

ng t

hem

. Th

e cl

asse

s of

im

mu-

nogl

obul

ins

are

IgG,

IgA

, IgD

, IgE

, and

IgM

. Th

e no

n-m

edic

al w

ord

for

imm

unog

lobu

lin

is “a

ntib

ody.”

Imm

unom

odul

ator

y dr

ug (I

MiD

®): A

n ag

ent

that

a!

ects

, en

hanc

es,

or

supp

ress

es

the

imm

une

syst

em.

Lytic

(lys

is):

Diss

olut

ion

or d

estr

uctio

n of

cells

or

tiss

ues.

Mon

oclo

nal p

rote

in (M

pro

tein

): An

abn

or-

mal

pr

otei

n pr

oduc

ed

by

mye

lom

a ce

lls

that

acc

umul

ates

in a

nd d

amag

es b

one

and

bone

mar

row

. A h

igh

leve

l of M

pro

tein

indi

-ca

tes

that

mye

lom

a ce

lls a

re p

rese

nt in

larg

e nu

mbe

rs.

Mul

tiple

mye

lom

a: A

can

cer a

risin

g fro

m th

e pl

asm

a ce

lls in

the

bone

mar

row

. The

can

cer-

ous p

lasm

a ce

lls a

re c

alle

d m

yelo

ma

cells

.

Plas

ma

cells

: Spe

cial

whi

te b

lood

cel

ls th

at

prod

uce

antib

odie

s (im

mun

oglo

bulin

s).

Mye

lom

a is

a ca

ncer

of t

he p

lasm

a ce

lls. M

alig

-na

nt p

lasm

a ce

lls a

re c

alle

d m

yelo

ma

cells

. In

mye

lom

a, m

alig

nant

pla

sma

cells

pro

duce

la

rge

amou

nts

of a

bnor

mal

ant

ibod

ies

that

la

ck t

he c

apab

ility

to

"ght

inf

ectio

n. T

hese

ab

norm

al a

ntib

odie

s are

the

mon

oclo

nal p

ro-

tein

, or

M-p

rote

in, t

hat

func

tions

as

a tu

mor

m

arke

r for

mye

lom

a. P

lasm

a cel

ls al

so p

rodu

ce

othe

r che

mic

als

that

can

cau

se o

rgan

and

tis-

sue

dam

age

(i.e.

, ane

mia

, kid

ney

dam

age,

and

ne

rve

dam

age)

.

Plas

mac

ytom

a: S

ee “

Extra

med

ulla

ry p

lasm

a-cy

tom

a” a

nd “

Solit

ary

plas

mac

ytom

a of

the

bo

ne (S

PB)”

Plat

elet

s: O

ne o

f the

thre

e m

ajor

blo

od e

le-

men

ts, o

ther

s be

ing

the

red

bloo

d ce

lls a

nd

whi

te b

lood

cel

ls. P

late

lets

plu

g up

bre

aks

in

the

bloo

d ve

ssel

wal

ls an

d re

leas

e su

bsta

nces

th

at s

timul

ate

bloo

d cl

ot fo

rmat

ion.

Pla

tele

ts

are

the

maj

or d

efen

se a

gain

st b

leed

ing.

Also

ca

lled

thro

mbo

cyte

s.

Prot

easo

me

inhi

bito

r: An

y dr

ug t

hat

inte

r-fe

res

with

the

nor

mal

fun

ctio

n of

the

pro

te-

asom

e, a

n en

zym

e co

mpl

ex r

espo

nsib

le f

or

brea

king

dow

n an

d re

cycl

ing

unw

ante

d pr

o-te

ins i

n bo

th n

orm

al ce

lls a

nd c

ance

r cel

ls.

Prot

eins

: Su

bsta

nces

com

pose

d of

am

ino

acid

s. Pr

otei

ns a

re a

n es

sent

ial p

art

of a

ll liv

-in

g or

gani

sms,

espe

cial

ly a

s st

ruct

ural

com

-po

nent

s of

bod

y tis

sues

(suc

h as

mus

cle,

hai

r, co

llage

n, e

tc.),

and

as e

nzym

es an

d an

tibod

ies.

Red

bloo

d ce

lls (

RBC,

ery

thro

cyte

s):

Cells

in

the

blo

od t

hat

cont

ain

hem

oglo

bin

and

deliv

er o

xyge

n to

and

tak

e ca

rbon

dio

xide

fro

m a

ll pa

rts o

f the

bod

y. Re

d ce

ll pr

oduc

tion

is st

imul

ated

by

a ho

rmon

e (e

ryth

ropo

ietin

) pr

oduc

ed b

y th

e ki

dney

s. M

yelo

ma

patie

nts

with

dam

aged

kid

neys

don

’t pr

oduc

e en

ough

er

ythr

opoi

etin

an

d ca

n be

com

e an

emic

. M

yelo

ma

patie

nts

can

also

be

com

e an

e-m

ic b

ecau

se o

f mye

lom

a ce

lls’ e

!ect

on

the

abili

ty o

f the

bon

e m

arro

w to

mak

e ne

w re

d bl

ood

cells

.

Solit

ary

plas

mac

ytom

a of

bon

e (S

PB):

A di

s-cr

eet,

singl

e m

ass o

f mon

oclo

nal p

lasm

a ce

lls in

a

bone

. The

dia

gnos

is of

SBP

requ

ires a

solit

ary

bone

lesio

n, a

bio

psy o

f whi

ch sh

ows i

n"ltr

atio

n by

pla

sma

cells

; ne

gativ

e im

agin

g re

sults

for

ot

her

bone

lesio

ns; a

bsen

ce o

f clo

nal p

lasm

a ce

lls in

a ra

ndom

sam

ple

of b

one

mar

row

; and

no

evi

denc

e of

ane

mia

, hyp

erca

lcem

ia, o

r ren

al

invo

lvem

ent s

ugge

stin

g sy

stem

ic m

yelo

ma.

Whi

te b

lood

cel

ls (W

BC):

Gene

ral t

erm

for a

va

riety

of c

ells

resp

onsib

le fo

r "gh

ting

inva

d-in

g ge

rms,

infe

ctio

n,

and

alle

rgy-

caus

ing

agen

ts. T

hese

cel

ls be

gin

thei

r de

velo

pmen

t in

the

bone

mar

row

and

then

trav

el to

oth

er

part

s of

the

bod

y. Sp

eci"

c w

hite

blo

od c

ells

incl

ude

neut

roph

ils,

gran

uloc

ytes

, ly

mph

o-cy

tes,

and

mon

ocyt

es.

One

of t

he m

ost d

aunt

ing

aspe

cts o

f bei

ng d

iagn

osed

with

mul

tiple

mye

lom

a (M

M) i

s lea

rnin

g ab

out –

and

und

erst

andi

ng –

an

unfa

mili

ar d

iseas

e th

at is

qui

te

com

plic

ated

. Fro

m d

iagn

osis

to lo

ng-te

rm su

rviv

al, t

he 1

0 St

eps t

o Be

tter

Car

e®

will

gui

de y

ou th

roug

h th

e M

M jo

urne

y:

1.

Kno

w w

hat y

ou’re

dea

ling

with

. Get

the

corr

ect d

iagn

osis

.

2. Te

sts y

ou re

ally

nee

d.

3. In

itial

trea

tmen

t opt

ions

.

4. S

uppo

rtiv

e ca

re a

nd h

ow to

get

it.

5.

Tran

spla

nt: D

o yo

u ne

ed o

ne?

6.

Res

pons

e As

sess

men

t: Is

trea

tmen

t wor

king

?

7. C

onso

lidat

ion

and/

or m

aint

enan

ce.

8.

Kee

ping

Trac

k of

the

Mye

lom

a: M

onito

ring

with

out m

yste

ry.

9.

Rel

apse

: Do

you

need

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As a

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Line

at 8

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10 ST

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CARE

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