bone health in focus multiple myeloma

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


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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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6

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.


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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.


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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


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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.


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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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bone health in focus multiple myeloma

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