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7/30/2019 Bone Health in Focus Multiple Myeloma
1/24
A RepoRt About
Muip MyoMiMpc o Bo
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the significAnce ofbone heAlth in pAtients
with Multiple MyeloMA
todAys pAtient with cAnceR fAces A dAunting AMount of
infoRMAtion. soRting thRough it All And deciding whAts
iMpoRtAnt cAn be An iMMense chAllenge. foR those with
Multiple MyeloMA, bone healthquickly becoMes thAt Most
iMpoRtAnt issue on theiR AgendA.
this RepoRt AiMs to fill the educAtionAl gAp by
illustRAting the seRious consequences of cAnceR-RelAted
bone diseAses, spuRRing iMpRoved coMMunicAtion between
pAtients with Multiple MyeloMA And theiR heAlthcARe
pRovideRs, And inspiRing Action to iMpRove bone heAlth
in pAtients with MyeloMA.
Bo HH
in fOcus
7/30/2019 Bone Health in Focus Multiple Myeloma
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Ma a ar m a r a
r r r ram. Ar a ar, a
ar raa rm a xr ar, ar, rra,
a . t ma ar r ra r a a xa
a ram, r ma rm r aar rr m ar.br r a, a a r ar m r a
rm ar r r, a a ra
ma r mma a.
Rz mra ar a ar a
r mr a, a mm rm a aa a Am
orm a mllary rg omm o ar . t omm
mm a r arr harr ira a
ommao a ar a ya ao o al
a r -maa r maa ar, a rm
aar a r a a a ar. t r rm
harr ira sr, a - r a
mma, ar rr. fr mr rma a harr
ira sr a m a rr a 16
ror. t ror am o ra aar, mor a, a orag a
r a-ya alog aro ral o o al.
the significAnce of bone heAlth in pAtients
with Multiple MyeloMA
Myloma a ar o lama ll o marro. t malga lama
r mma ama marr.1 i m
mm ma maa u sa2 a ararz a
q orm o r o a or majory o a3.
w a a rma amma r ma ar, m mm
r ma mma a a1 a 51 r
a mll myloma o r o ra or o lo xr
a sRe o yar.4
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keletal-related events (Rs) an r when
bne has been weakened b aner r aner
treatments. Rs nlde:
Fctue
Spn cod copesson
The need fo suge o dton to the bone
frr, m a (80 r) mma r a a
rma mm.3 b a r a mma r a
a, aa a r ra a ar .3
byo a, a myloma alo a a o. bo lo a
a a a a-ra (sRe).3 A m
m mma a a a a a ( ).3
t, a myloma o a ar l o rar orrg r
a r ra jr.3 t aa rar
rra, r a , aa r r a
rm a .3
t harr ira sr a 78 r a mma
r ma xr a a a a rar
(73 r).5 fa a ar mm mm r m mma
(58 r).5 t r a a 85 r a mma
xr m mm, 68 r r a
a omlao a r a major or mora ma o r aly l,
rrg gral moly a ay.5
cARole(melma atent, dagnsed 1987)
The main thing about bone complications, that I tell people, is not to ignore the
pain, because from my own experience in 22 years, Ive learned that if youre
getting bone pain in a specifc area, with multiple myeloma, you need to address
that. You need to have some testing done, or a skeletal survey done, to see i in
act you are having something going on with that bone.
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t r rar ma xa harr ira sr 98 r
maologal oolog o ra a myloma o ra
a a sRe r a, a majr (67 r)
ra a.5
cARole(melma atent, dagnsed 1987)
Well, in the beginning, the pain was excruciating. I will tell you that. And the way
the tumor was wrapped around my spinal cord, they werent even sure if I would
have mobility from the neck down, or paralysis of both arms. After that, they took
the tumor out, and then an orthopedic surgeon took bone out of my hip and rebuilt
the seventh vertebra, I was pretty good or about six years. I was very mobile. Ive
worked through the whole time, and basically that was fne.
n- r ma a r harr ira
rr ra mma ra (iv) a.5 hr, a r
rr aa am aa a 45 r a rma
ra.6 tram r mra a 51 r a mma
ar ra r xr a sRe 21 m.4
hrama, a ra a ra
m am , r ma a aa a. i
ama arar r a mm,
a.3 hyralma a alo xara y a ral alr a rqly
omla or o a.3
i a 2007 y, 3,049 a ar r ala or aolog rar,
a 513 m mma a rar (43
r).7 s a o a may y o ar, aolog rar a
rra r a.7 t aa r mra a a
a a a a a rar.
According to Jan, a myeloma patient, in the two years leading up to my
diagnosis, I broke bones in both legs, which was highly unusual or me. I had never
broken a bone in my lie.
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cuRRent tReAtMents, unMetneeds foR MAnAging the
effects of MyeloMA on bonebisphosphonAtes
t majory o rg o ra o omlao lo r rao
, ma m mr ra rar. Am m ar
ooa, ar a ram or o omlao a
mll myloma.
irao ooa a o o r mll myloma-rla
ma a m a r sRe a r r
a ma.4 i rmm a m
mma a a ar r a a 15 m r r
r .8
FamiliariTy wiT SklTal-rlaT TS iS Oly 42 rT5 amO
aTiTS wiT mlTil mylOma, TO ii raTS OF O
iSaS iS arly 100 rT9
t naoal comr car nor (nccn) gl romm o
rao (iv) ooa or all a myloma o a o a.10
t Amra s ca o (Asco) rmma
:
pa m mma xr r rar
rm a (r a a ar ) r iv
a r r r .
8,11
ba ram m r ar. A
ar, a r r ram
a. tram aa mma m a
a rm .11
ba a a a , ra (a mar
) r a . or a ma a
. t a ma aj a ar
r.8,11,12
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or ja a mm a r
a . br ram, a r a r a
xamao, a ay oo or mo o ol ra. wl rg
a ram, a a a a a a r
, a a rr, a a ar r , m a m,
.8,11
A a r a, a ar mm
ra a rm a. ba ma a r
aar m, a raa ra, a ma, r rr r
rar, r a.11
Ar m a , a ar rmm r
a mr (ar amama), mr (amma)
mma, r mma.11
Ar harr r, ar a maa ra
a mma rr a, mr a a (55
r) o o ry ar a (44 r) or ry a (11 r)
rr ram o ar o lo a rla omlao r a.5
iF ria OT Sik i 2008 iSTa OF 1988, ali a wOlT
a SFFr FrOm S iliTaTi O iSaS. Ow iTS OT
Sal FOr Ol TO xri lO-Trm rmiSSiOS Or 10, 15
yarS.13 iTS ar TO kOw iF wll Fi a r, bT w bli mylOma
iS bOmi a TraTabl, rOi iSaS. w Om a lO way. SSi
OiS, FOr OF T iTraTiOal mylOma FOaTiO, iSSSi
mial rOrSS Si r Sa, ria, aSS away TO
mlTil mylOma.
7/30/2019 Bone Health in Focus Multiple Myeloma
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pAtients with MultipleMyeloMA speAk out About
bone heAlth
he emtinal cnsequences f any cancer diagnsis can be difcult t manage. When
the cancer affects the bne, the emtinal reercussins can increase exnentially.
JAck*
in 1995, Jc, no 60 es od, s dgnosed th edupscto. Snce then, the Sn Jose, fon, ntve hs
epeenced pephe neuopth nd poous bones due to
ggessve tetent potocos.
Jc hd oc oncoogst n Sn Jose s e s n oncoogst
t the meo insttute t the nvest of anss n ltte
roc, hee hs utoogous ste ce tnspnts ee conducted nd hee he fet
cofotbe th the epetse he found thee. afte hs thd ste ce tnspnt
(ogenec), he s put n touch th eo specst t Stnfod nvest,
ho he hs seen fo the st 10 es. a doctos e good; thee potnt
etonshps. and dont foget ho potnt nuses e. The no ou hsto
nd opeton needs. Fo the begnnng, Jc hd nube of bone scns nd
s de e of bone oss nd tetents, nd hes thnfu tht hs scns e
stbe no.
i suppot goup fctto so i hep nse questons nd hep othes (s e s
sef) though the pocess, he ss. Thees s n oppotunt to en hts
ne. The ptent s hs o he on best dvocte. Thees ot of esech to eve,
questons to s, sens to ttend, nd onne souces to ccess.
*tent testons ee coected septe fo the s intectve Suvend e not fted th s intenton.
7/30/2019 Bone Health in Focus Multiple Myeloma
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8
pAulA*
u, 62, esdent of nchbeg, e Jese, s
dgnosed th sot pscto n 1999, ncudng
cto (ce tuo) n he feu ne he hp jont, tuo
n he spne, nd te n thee ne bones , chest nd
nothe octon n he spne. She so hs expeenced bone
btteness nd thnnng th n ccopnng fe
of fctues.
u s teted b eo specst connected to ge sububn edc
cente nd oc oncoogst ho pescbes edctons, ncudng bone tetents.
afte 10 es, doctos e ve ttentve, but ts gettng to the pont hee the
no i n ctve ptent nd s questons s needed. The tet e e the
educted ptent i .
us doctos ntoduced he to bone ssues nd tetents e, nd shes been
scnned nd tested egu. On the othe hnd, she ss, Oncoogsts e so dven
to n the gnst cnce, soetes suppotve ce ssues e ess potnt.
The focus on tetng the cnce nd e ess focused on tetng the sde effects.
ecuse she hs un suppot goup snce 2005 fo the intenton meo
Foundton, u does ot of esech on he on, so i dont oo to doctos
to be the tot souce of nfoton.
*tent testons ee coected septe fo the s intectve Suve
nd e not fted th s intenton.
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pAulA(melma atent, dagnsed 1999)
Theres a difference between male and female patients. Sometimes men have
trouble verbalizing theyre taught to suck it up and not complain about pain but
they might be more inclined to talk more openly with a emale doctor. In any case,
patients with myeloma need to be orthcoming about how theyre eeling, even the
minor problems, i theyre going to get the kind o treatment they need.
Om ry iOl i yOr ar. Sak a Ora aialO wiT yOr Tir alTar Tam, ili rSS.
rOrT ay SymTOmS TO yOr OTOr immiaTly TO T arly
iaOSS a TraTmT. Sk OT aTiT aOay rOS
FOr iFOrmaTiO a SOrT.
Role of effective coMMunicAtion
A a ma , a, ara a m mma a a a ar ra m. nr a a
a a r mma, a a ra am m
a a ram, a ra a .
infoRMAtion is AvAilAble
kolg or. t ally r or a ar. so, a lma
mr aar, a a ma a r ram
y omg a. eormo amo o ormao ar aalal o l a
ra r ago a ram oo.
wl mo a myloma (63 r) ror g a amo
o ormao y r ao o al, am amo (63 r) ror
y ol a l o a lar mor ao o al arlr r ram.5
o a a (49 r) mma r a aa
rma a -ra ma, rma rm r a
(83 r), ir (83 r) a r r (52 r).5
7/30/2019 Bone Health in Focus Multiple Myeloma
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the suppoRt of fAMily And fRiends
A netwoRk of suppoRt
hag or a l o r a lo o alo ry mora. brgg
m a ma am, r xam, r maor alo g a a ral a- omo o a l arlly
o ro, o qo o a, a rmmr al a may org.14
keep RecoRds
t mr a maa mma, a rar a
ra a r r rm r aar
rr, r mra r rm r r ma
aom.14 tag o alo l a r ormao lar
r mor m o ora or o rar. i may ma or ao a-ror r , oor o.14 (May o oay maro
a a rorg o.) pa o ror r a l o
ormao aga or ar amly mmr or r.
Ar a r a rr rma a r a a
ra a a r jra. i a a ra
j am, , ma a , r a
a, a .
speAk up
i a ra a r, a r ar. i
a a r ma r ra r r, a a
r a. pa a a r a am r - mr
m r .14
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RecoMMendAtions foR effective coMMunicAtion
between cliniciAns And pAtients
Mma a ma a. i a a r ra
ly. tror, ommao a a r alar ror ral o ma r rg ram g arr o aroraly.
MAnAging coMMunicAtions
sm ma r ar arra a a m
oolog a raao oolog or ram g. A a rl, a roo
r ram a r ra, a
a a.
prr a ara a r ram a rar
m-ar r a , ra a
r a a ar r a. w a r ar r
am r (r am a) ra, mma ar a r,
r arr rma r a.
M r ra r a m a, r
aa mara a rrr m a a aa r r.
w m a ar ra , ara r r
a a mra ar rr.
vicki(melma atent, dagnsed 2004)
I already subscribe to the Google service, [so] that every time myeloma is mentioned
in the news anywhere, I get a Google news alert then I can look and see whats being
written about it. That kind o thing, that just makes me aware o whats out there, and
then I can make the decision whether to go read it or not.
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teAR-out foR youR neXt visit
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Ask key questions
Here are sme qestns atents mght ask ther dtrs r nrses abt ther
treatment and fllw-:14
whAt ARe My tReAtMent options?
whAt is the RecoMMended tReAtMent?
how often will i Receive tReAtMent?
whAt ARe the possible side effects?
whAt ARe the possible benefits And Risks of
this tReAtMent?
if My doctoR is not AvAilAble, who cAn i Ask?
foR eXAMple, is A nuRse, sociAl woRkeR, oR otheR
speciAlist AvAilAble?
is theRe Any infoRMAtion thAt i cAn ReAd About
this tReAtMent oR pRoceduRe?
is theRe Anything else i should know?
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pAtients need to be theiR own best AdvocAtes
ba rar aa a rma rr, ar a:
sRe m mma ar a r rm a a aa
ma a.
pa olg ao o al o a g a ol , alog mo
a a mr rma. e am a ar a
amo o ormao aalal o m, may ol a a mor ormao
ao o al arlr ar ram ro.
Mr a r a mma a a
r a, a a r a rma, a a
rmm r rma r.
t aa a a a ra a mma a aar a r a a a ar ra a rr
ram, r aa r. t ma
r , mr a ram .5
t r alar ommy m a oora ao o ma ar-rla
a mr a rr r ram m. br
a a a r a r r aar rr a. t
or o ra a lo ol ra o ar roo a
a r a ar . i mam,
a, ya, or gro a or aoa a o a gra al mor o
l alla a a rg a r lal a mooal o mll
myloma-rla o a y rorzg o ao ral o.
T FFTi TraTmT OF ar rqirS a OSirabl FFOrT by
T paTiT a pySiia. FOrmi a STrO parTrSip, wi SOl
alSO il Family, FriS, OOlOy rSS, SOial wOrkrS a
aTiT SOrT rOS, iS OT Oly lFl T rial TO FFTi
iSaS maamT a TraTmT.
7/30/2019 Bone Health in Focus Multiple Myeloma
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wr r r, a a a :
A aar ar a r r a
a ram a a ar r .
cm a ar- ram a. i r r
r , mma ra.
ta m xa ra rma a maa a
a aar rr a r rr a ram .
Ma r ar q a r aar rr.
oa r ra a r r r a ma
rr.
s ma, a a raa r a ma m r
ar ram.
soMe ResouRces cAn be A helpful stARt:
iraa Mma fa (.mma.r)
cuRe (.ra.m)
self-RepoRted pAtient suRvey Methodology
t mll myloma a ry a o ol u sa y
iraoal Myloma foao Mar 31 a Arl 5, 2010. Rol 831 a mll myloma o r rr rom iraoal
Myloma foao mmr l. daa rom mll myloma a ry
a o g. All a ry arag 10 m lg.
self-RepoRted physiciAn suRvey Methodology
All ya r r ol y harr ira frary 19 a
Arl 16, 2010 o al o Amg a arr iraoal Myloma
fa. R 150 ma . A ma
r rr a ma Amra Ma Aa
(AMA) mar a a am ram. A a r ara
10 m . pa aa a rra
a r a a.
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definitions
keletal-related events (Rs) a r ar a ra
(maaz) a a . sRe :
pathlgal fratre: A rar r a a aa ar
a a ra rqr aza. i a a r marm
a a a a.15
nal rd mressn: i maa r ar rra
m, xa rm a mr a r. t a a
r ma a ara, a m.16
urgery t bne: i a o a r o rar or a alray rar, rgry
rrm maa r r rr ma. w
a aa ar, rr a majr ra, a
rr a a a rqr aza.15
Radiation to the bone: Raa rrm ra
maa a aa a. hr, q rma
ama , a raa ra rrm ma ara.17
mldering multile myelma: smolrg mll myloma a lama-ll
rolra orr a aoa a g r o rogro o ymoma
mll myloma or amyloo. progo aor or rogro a oom
o a ar lar.18
periheral neurathy: t rm, rral roay, o amag o r
rra r m a ma a r a
r r rm - m r ar. 19
ostersis: A a r o lo or rogo oy rlg
lor o y a a ra r o rar. t a o lo
o or may yar, o ymom or omor l a rar or.20
plasmatma: A amama arar am r r
ama . w ama ar j a
(a ), a ar amama. w x m ara,
a m mma.1
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RefeRences
1 dr bg. c r a a ram : m mmaar
marr. iraa Mma fa. 2008:1-40.
2 kmar sk, Rajmar sv, dzr A, a. imr ra m mma a
ma ra. blood. 2008;11:2516-2520.
3 M gR. Mma a. ur J Cancer. 1998;34:246-251.
4 br JR, l A, prr l, a.J Clin ncol. 1998;16:593-602.
5 harr ira b ha sr. daa . Am i. J 27, 2010.
6 Mrmr Je, sma k, k Jd. par a u sa
ram ma a. Clin breast Cancer. 2007;7:682-689.
7 saa f, l A, c R, a. pa rar rra r ra
a maa a. Cancer. 2007;110:1860-1867.
8 Zma (zr a) rr rma, nar.
9 cma Re, sa ma maa. Cancer. 1997;80():1588-1594.
10 t nccn ca pra g o. naa cmr car
nr .://..r/ra/a_/a.a. A
A 31, 2010.
1 1 k RA, y gc, smr MR, a. Asco 2007 a ra a
r a m mma.J Clin ncol. 2007;25:2464-2472.
12 Ara (amra m) rr rma, nar.
13 hr A, cr J, sa Jd, a. cm rm m mma
xam a m- ara rm a ra a ra
r. blood. 2009;114:1299-1305.
14 dr ca w ta? car car . ://.arar.r//a_/
_r_a_.. A A 31, 2010.
15 ca l, baa X, c e, a. ima a ma a qa ,
m, a a . Support Care Cancer. 2008;16:879-889.16 dar car trma r mr. naa car i .
://.ar./ar. A A 31, 2010.
17 Jaja nA. Raa r maa. Cancer. 2000;80:1628-1645.
18 k RA, Rm ed, tra tM, a. ca r a r mr
(amma) m mma. ngl J Med. 2007;356:2582-2590.
19 drra ra. Ma c . ://.ma.m/a/
daix/. A smr 16, 2010.
20 or. Amra Aam ora sr .
://r.aa.r/.m?=a00232. A A 31, 2010.
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