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YOUR PATIENT DIARY
Your patient diary
Contact details
Appointments
Blood test results
Treatment record
Complementary therapies record
Symptomsandsideeffectsrecord
Key myeloma terms
Questions and notes
Myeloma UK and other useful organisations
Contents
1Infoline 0800 980 3332
2 myeloma.org.uk
Your patient diary
Adiagnosisofmyelomaaffectseveryonedifferently.Tobeginwith,mostpeoplehavenotheardofmyelomabeforereceivingtheirdiagnosis.Thiscanmakeanalreadydifficultsituationallthemoreconfusing and scary.Beingdiagnosedwithcancercanbeahugeshock,evenifyourdoctorshavepreparedyouforthepossibility.Patientsandtheirfamiliescanfeeloverwhelmed,numbandcanalsoexperienceagreatdealoffear,angerandfrustration.Forotherpatients,itcomesasareliefthattheyfinallyhaveananswertowhytheyhavefeltsopoorly for so long. All these feelings are common and areanaturalpartofcomingtotermswithadiagnosis.
Often,keepingadiarycanhelptoclarifyyourthoughtsandfeelingsandcanprovidearecordofyourtestresults and treatment.
Thisdiaryhasbeendesignedtodojustthat;togiveyouaplacetowritedownyourthoughts,howyouarefeelingandanyquestionsyoumayhave.Itwillhelpyoustay informed and keep track of important information related to your myeloma and its treatment.
It may also help you and your doctor and nurse communicatemoreeasilyaboutyourmyeloma,yourtreatment and any questions or concerns that you may have.
Keepyourdiaryhandyandrecordquestionsandnewinformationassoonasyoucan.Remembertotakeitwithyoueverytimeyouvisityourdoctor,nurseorotherhealthcare professional.
Your patient diary
Howtousethisdiary
Some sections are designed for you to fill in; others should be filled in by your doctor or nurse.
Ifyouhaveanyquestionsorconcernsaboutthedetailsyourdoctorornursefillsin,askthemtoexplain,orwritedownyourquestionsinthe‘Questionsandnotes’sectionto ask at your next appointment.
Bereassuredthatitiscommontohaveconcernsandquestions. Doctors and nurses are used to talking to patientsaboutmanymyeloma-relatedissues.
5Infoline 0800 980 3332
Your patient diary
6 myeloma.org.uk
Contact details
Use this section to keep a record of your details,youremergencycontactandyourhealthcareteam’sdetails.Youmaywanttoaskyourdoctorand/ornursetofillinyourhealthcareteam’sdetails.It’sparticularlyimportanttomakesureyouhavearecordofwhotocontactforout-of-hoursadvice.
Contact details
My details
Address
Who to contact in an emergency
Name
Telephone (Home)
Telephone (Work)
Mobile
Email address
NHSnumber(ifknown)
Preferred language
Name
Relationship to patient
Telephone (Home)
Telephone (Work)
Mobile
9Infoline 0800 980 3332
Contact details
My healthcare team’s contact details
GP
Name
Location
Telephone
Consultant haematologist
Name
Location
Telephone
Nurse specialist/key worker
Name
Location
Telephone
Social worker
Name
Location
Telephone
Occupational therapist
Name
Location
Telephone
10 myeloma.org.uk
Contact details
In case you need advice out-of-hoursYourconsultantornurseshouldprovideyouwiththecontactdetailsoftheout-of-hoursdoctoroncallatyourhospital.
Telephone
Contact name
Call NHS 111 by dialling 111 (England,ScotlandandNorthernIreland)
Call NHS Direct Wales on 0845 4647
Physiotherapist
Name
Location
Telephone
Dietitian
Name
Location
Telephone
Others involved in your care
Occupation
Name
Location
Telephone
11Infoline 0800 980 3332
Contact details
Date of birth
Previousmedicalhistory(e.g.diabetes,asthma)
Regular medication(s)
Allergies
My medical history
My myeloma diagnosis
Date of myeloma diagnosis
Name of consultant who made the diagnosis
Hospital
Stage of myeloma
Myeloma type (tick)
Don’tknow
SmoulderingLight chainMGUS
Non-secretoryIgMIgE
IgAIgDIgG
12 myeloma.org.uk
Contact details
My local Myeloma Support Group details
Location
Name
Venue
Leader name
Telephone
Email address
Myeloma Support Groups welcome patients, their families, friends and carers in an informal setting to provide information and support.
Theygivethoseaffectedbymyelomatheopportunitytodiscuss,learnandsharewithothersinasimilarsituationandfromthesame area.
Ask Myeloma UK for more information about Support Groups in your area.
VisittheMyelomaUKwebsiteat: myeloma.org.uk/supportgroups
CalltheMyelomaInfoline: 0800 980 3332
13Infoline 0800 980 3332
Contact details
Contact Myeloma UK
Myeloma Infoline 0800 980 3332
Ask the Nurse [email protected]
Website myeloma.org.uk
Getintouchforfreeinformation,emotionalsupportandpracticaladvice.We’reheretoansweryourquestionsandconcerns.
Any other contactsNotethedetailsofanyothercontactsinthespacebelow.
14 myeloma.org.uk
Contact details
Appointments
Appointments
Use this section to keep a record of your upcoming appointments.
Who it’s with
Date Time
Location
Reason for appointment (e.g. follow-up, X-ray, blood test, etc.)
Who it’s with
Date Time
Location
Reason for appointment (e.g. follow-up, X-ray, blood test, etc.)
Who it’s with
Date Time
Location
Reason for appointment (e.g. follow-up, X-ray, blood test, etc.)
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Appointments
Date Time
Who it’s with
Location
Reason for appointment (e.g. follow-up, X-ray, blood test, etc.)
Who it’s with
Date Time
Location
Reason for appointment (e.g. follow-up, X-ray, blood test, etc.)
Who it’s with
Date Time
Location
Reason for appointment (e.g. follow-up, X-ray, blood test, etc.)
18 myeloma.org.uk
Appointments
Who it’s with
Date Time
Location
Reason for appointment (e.g. follow-up, X-ray, blood test, etc.)
Who it’s with
Date Time
Location
Reason for appointment (e.g. follow-up, X-ray, blood test, etc.)
Who it’s with
Date Time
Location
Reason for appointment (e.g. follow-up, X-ray, blood test, etc.)
19Infoline 0800 980 3332
Appointments
Date Time
Who it’s with
Location
Reason for appointment (e.g. follow-up, X-ray, blood test, etc.)
Who it’s with
Date Time
Location
Reason for appointment (e.g. follow-up, X-ray, blood test, etc.)
Who it’s with
Date Time
Location
Reason for appointment (e.g. follow-up, X-ray, blood test, etc.)
20 myeloma.org.uk
Appointments
Who it’s with
Date Time
Location
Reason for appointment (e.g. follow-up, X-ray, blood test, etc.)
Who it’s with
Date Time
Location
Reason for appointment (e.g. follow-up, X-ray, blood test, etc.)
Who it’s with
Date Time
Location
Reason for appointment (e.g. follow-up, X-ray, blood test, etc.)
21Infoline 0800 980 3332
Appointments
Date Time
Who it’s with
Location
Reason for appointment (e.g. follow-up, X-ray, blood test, etc.)
Who it’s with
Date Time
Location
Reason for appointment (e.g. follow-up, X-ray, blood test, etc.)
Who it’s with
Date Time
Location
Reason for appointment (e.g. follow-up, X-ray, blood test, etc.)
22 myeloma.org.uk
Appointments
Who it’s with
Date Time
Location
Reason for appointment (e.g. follow-up, X-ray, blood test, etc.)
Who it’s with
Date Time
Location
Reason for appointment (e.g. follow-up, X-ray, blood test, etc.)
Who it’s with
Date Time
Location
Reason for appointment (e.g. follow-up, X-ray, blood test, etc.)
23Infoline 0800 980 3332
Appointments
Date Time
Who it’s with
Location
Reason for appointment (e.g. follow-up, X-ray, blood test, etc.)
Who it’s with
Date Time
Location
Reason for appointment (e.g. follow-up, X-ray, blood test, etc.)
Who it’s with
Date Time
Location
Reason for appointment (e.g. follow-up, X-ray, blood test, etc.)
24 myeloma.org.uk
Appointments
Blood test results
Regularlymonitoringyourbloodisoneofthemanywaysusedtohelpprovideapicture of your myeloma so that you and your doctor and nurse can determine the besttreatmentoptionsforyou.Usethissectiontorecordtheresultsfromyourbloodtests.Youmayfindithelpfultoaskyourdoctorornursetofillinthissection.
Ifyouhaveanyquestionsorconcernsaboutthedetailstheyfillin,askyourdoctorornursetoexplain,orwritedownyourquestionsinthe‘Questionsandnotes’section of this diary to ask at your next appointment.
Blood test results
You will have regular blood tests to monitor your myeloma and to check the levels of red blood cells, white blood cells and platelets in your blood.
Bloodtestsareusedtomonitorthelevelsofparaprotein(alsoknownasmyelomaorM-protein)inyourblood.Thisprovidesanindicationofhowactiveyourmyelomaisandhowyouarerespondingtotreatment.Theycanalsobeusedtodeterminethetypeofparaproteinproduced–bothheavychaintype(i.e.IgG,IgA,IgD,IgEorIgM)andlightchaintype(kappa(κ)orlambda(λ)–andthelevelsoffreelightchains.
Anotherproteinthatismeasuredisalbumin,whichisanormalproteinproducebytheliverandisoftenreducedinmyeloma.
Yourredbloodcell,whitebloodcellandplateletlevels(knownasafullbloodcount)willalsobemeasured.Thisisnecessarybecausemyelomaitselfandsomeofthesideeffectsoftreatmentcancauseseveralcomplications,includinganaemia(lowredbloodcells),increasedriskofinfection(lowwhitebloodcells)andunexplainedbruisingandbleeding(lowplatelets),whichneedtobemonitoredregularlybyyourdoctor.Afullbloodcountwillmeasurethehaemoglobinlevels(akeycomponentofredbloodcells),thenumberofwhitebloodcells,includingaspecifictypecalledneutrophils,andthenumberofplateletsinyourblood.
Bloodtestsarealsousedtomeasurethelevelsofcertainchemicalsandmineralsintheblood.Forexample,ureaandcreatininelevelscanbeusedtoassessyourkidneyfunction,andcalciumlevelcanbeusedtomonitormyelomabonedisease.
Thenormalrangeforthesemeasurementscanbefoundinthefollowingreferencetable.Theexactrangecanvaryslightlybetweenlaboratoriessothenumbersinthistableare for guidance only.
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Blood test results
Blood test
Measurem
entN
ormal range
Notes
Proteins
Paraprotein(g/L)
0Abnorm
alproteinproducedbym
yelomacells
Kappa(κ)lightchain(m
g/L)3
.3–1
9.4
Partofanim
munoglobulin
(antibody). Oftenraised,w
ithanabnorm
alratioinmyelom
a
Lambda(λ)lightchain(m
g/L)5
.71
–26
.3
Kappa(κ)/Lam
bda(λ)ratio0
.26
–1.6
5
Album
in(g/L)3
5–5
0Proteinnorm
allyfoundinblood. Oftenlow
eredinmyelom
a
Full blood
count
Haem
oglobin(Hb)(m
en)(g/dL)1
3.5
–18
.0Alow
haemoglobin(H
b)causes anaem
ia and fatigueHaem
oglobin(Hb)(w
omen)(g/dL)
11
.5–1
6.5
Whitebloodcells(W
BC)(x10
9/L)4
.0–1
1.0
Alow
whitebloodcellcount
increases your risk of infection
Platelets (P
l) (x109/L)
15
0–4
40
Alow
plateletcountincreasesyourriskofbruisingandbleeding
AbsoluteN
eutrophilCount(A
NC)(x10
9/L)2
.0–7
.5Alow
countmakesyouless
abletofightinfection
Biochem
icals
Urea(m
mol/L)
2.5
–6.7
Measure of kidney function
Creatinine (µ/L)
70
–15
0
Calcium
(mmol/L)
2.1
–2.6
5Raisedbym
yelomabonedisease
Reference table: normal blood m
easurements
28 myeloma.org.uk
Blood test results
Dat
e
Oth
er
(i.e.
cal
cium
, al
bum
in)
Kid
ney
func
tion
Par
apro
tein
leve
l
Ligh
t ch
ains
Full
bloo
d co
unt
Ure
a:
Cre
atin
ine:
λ:
Rat
io:
κ: Pl:
AN
C:
WB
C:
Hb:
Ure
a:
Cre
atin
ine:
λ:
Rat
io:
κ: Pl:
AN
C:
WB
C:
Hb:
Ure
a:
Cre
atin
ine:
λ:
Rat
io:
κ: Pl:
AN
C:
WB
C:
Hb:
Ure
a:
Cre
atin
ine:
λ:
Rat
io:
κ: Pl:
AN
C:
WB
C:
Hb:
29Infoline 0800 980 3332
Blood test results
Date
Other
(i.e. calcium,
albumin)
Kidney function
Paraprotein level
Light chains
Full blood count
Urea:
Creatinine:
λ:
Ratio:
κ:Pl:
AN
C:
WB
C:
Hb:
Urea:
Creatinine:
λ:
Ratio:
κ:Pl:
AN
C:
WB
C:
Hb:
Urea:
Creatinine:
λ:
Ratio:
κ:Pl:
AN
C:
WB
C:
Hb:
Urea:
Creatinine:
λ:
Ratio:
κ:Pl:
AN
C:
WB
C:
Hb:
30 myeloma.org.uk
Blood test results
Dat
e
Oth
er
(i.e.
cal
cium
, al
bum
in)
Kid
ney
func
tion
Par
apro
tein
leve
l
Ligh
t ch
ains
Full
bloo
d co
unt
Ure
a:
Cre
atin
ine:
λ:
Rat
io:
κ: Pl:
AN
C:
WB
C:
Hb:
Ure
a:
Cre
atin
ine:
λ:
Rat
io:
κ: Pl:
AN
C:
WB
C:
Hb:
Ure
a:
Cre
atin
ine:
λ:
Rat
io:
κ: Pl:
AN
C:
WB
C:
Hb:
Ure
a:
Cre
atin
ine:
λ:
Rat
io:
κ: Pl:
AN
C:
WB
C:
Hb:
31Infoline 0800 980 3332
Blood test results
Date
Other
(i.e. calcium,
albumin)
Kidney function
Paraprotein level
Light chains
Full blood count
Urea:
Creatinine:
λ:
Ratio:
κ:Pl:
AN
C:
WB
C:
Hb:
Urea:
Creatinine:
λ:
Ratio:
κ:Pl:
AN
C:
WB
C:
Hb:
Urea:
Creatinine:
λ:
Ratio:
κ:Pl:
AN
C:
WB
C:
Hb:
Urea:
Creatinine:
λ:
Ratio:
κ:Pl:
AN
C:
WB
C:
Hb:
32 myeloma.org.uk
Blood test results
Dat
e
Oth
er
(i.e.
cal
cium
, al
bum
in)
Kid
ney
func
tion
Par
apro
tein
leve
l
Ligh
t ch
ains
Full
bloo
d co
unt
Ure
a:
Cre
atin
ine:
λ:
Rat
io:
κ: Pl:
AN
C:
WB
C:
Hb:
Ure
a:
Cre
atin
ine:
λ:
Rat
io:
κ: Pl:
AN
C:
WB
C:
Hb:
Ure
a:
Cre
atin
ine:
λ:
Rat
io:
κ: Pl:
AN
C:
WB
C:
Hb:
Ure
a:
Cre
atin
ine:
λ:
Rat
io:
κ: Pl:
AN
C:
WB
C:
Hb:
33Infoline 0800 980 3332
Blood test results
Date
Other
(i.e. calcium,
albumin)
Kidney function
Paraprotein level
Light chains
Full blood count
Urea:
Creatinine:
λ:
Ratio:
κ:Pl:
AN
C:
WB
C:
Hb:
Urea:
Creatinine:
λ:
Ratio:
κ:Pl:
AN
C:
WB
C:
Hb:
Urea:
Creatinine:
λ:
Ratio:
κ:Pl:
AN
C:
WB
C:
Hb:
Urea:
Creatinine:
λ:
Ratio:
κ:Pl:
AN
C:
WB
C:
Hb:
34 myeloma.org.uk
Blood test results
Dat
e
Oth
er
(i.e.
cal
cium
, al
bum
in)
Kid
ney
func
tion
Par
apro
tein
leve
l
Ligh
t ch
ains
Full
bloo
d co
unt
Ure
a:
Cre
atin
ine:
λ:
Rat
io:
κ: Pl:
AN
C:
WB
C:
Hb:
Ure
a:
Cre
atin
ine:
λ:
Rat
io:
κ: Pl:
AN
C:
WB
C:
Hb:
Ure
a:
Cre
atin
ine:
λ:
Rat
io:
κ: Pl:
AN
C:
WB
C:
Hb:
Ure
a:
Cre
atin
ine:
λ:
Rat
io:
κ: Pl:
AN
C:
WB
C:
Hb:
35Infoline 0800 980 3332
Blood test results
Date
Other
(i.e. calcium,
albumin)
Kidney function
Paraprotein level
Light chains
Full blood count
Urea:
Creatinine:
λ:
Ratio:
κ:Pl:
AN
C:
WB
C:
Hb:
Urea:
Creatinine:
λ:
Ratio:
κ:Pl:
AN
C:
WB
C:
Hb:
Urea:
Creatinine:
λ:
Ratio:
κ:Pl:
AN
C:
WB
C:
Hb:
Urea:
Creatinine:
λ:
Ratio:
κ:Pl:
AN
C:
WB
C:
Hb:
36 myeloma.org.uk
Blood test results
Treatment record
Treatmentformyelomaisoftenwithacombinationofdrugsgiveninasetpatternoveranumberofweeks (knownasacycle).Youmayreceiveyourtreatmentathome,asanoutpatientorasaninpatientinhospital.Youwillbeinstructedhowandwhentotakeyourtreatmentsbyyour doctor or nurse.
Askyourdoctorornursetofillinthefollowingrecordwithyourtreatmenttohelpyoumakesureyouaretakingyourtreatmentasadvised.
Ifyouhaveanyquestionsorconcernsaboutanyoftheinformationcompletedbyyourdoctorornurse,askthemtoexplainitorwritedownanyquestionsyouhaveinthe‘Questionsandnotes’sectionofthisdiarytoaskat your next appointment.
Treatment record
Myeloma UK provides free publications on a wide range of symptoms and side effects of myeloma and its treatment.
Downloadororderthemfromourwebsite: myeloma.org.uk/publications
OrderthemviatheMyelomaInfoline: 0800 980 3332
39Infoline 0800 980 3332
Treatment record
Date treatment prescribed
Treatment name
DoseWhere I have it(e.g. at home, in hospital)
When I have it (days of the week/month, time of day)
How I have it (e.g. with food, on empty stomach)
Treatment end date
Date treatment prescribed
Treatment name
DoseWhere I have it(e.g. at home, in hospital)
When I have it (days of the week/month, time of day)
How I have it (e.g. with food, on empty stomach)
Treatment end date
Date treatment prescribed
Treatment name
DoseWhere I have it(e.g. at home, in hospital)
When I have it (days of the week/month, time of day)
How I have it (e.g. with food, on empty stomach)
Treatment end date
40 myeloma.org.uk
Treatment record
Date treatment prescribed
Treatment name
DoseWhere I have it(e.g. at home, in hospital)
When I have it (days of the week/month, time of day)
How I have it (e.g. with food, on empty stomach)
Treatment end date
Date treatment prescribed
Treatment name
DoseWhere I have it(e.g. at home, in hospital)
When I have it (days of the week/month, time of day)
How I have it (e.g. with food, on empty stomach)
Treatment end date
Date treatment prescribed
Treatment name
DoseWhere I have it(e.g. at home, in hospital)
When I have it (days of the week/month, time of day)
How I have it (e.g. with food, on empty stomach)
Treatment end date
41Infoline 0800 980 3332
Treatment record
Date treatment prescribed
Treatment name
DoseWhere I have it(e.g. at home, in hospital)
When I have it (days of the week/month, time of day)
How I have it (e.g. with food, on empty stomach)
Treatment end date
Date treatment prescribed
Treatment name
DoseWhere I have it(e.g. at home, in hospital)
When I have it (days of the week/month, time of day)
How I have it (e.g. with food, on empty stomach)
Treatment end date
Date treatment prescribed
Treatment name
DoseWhere I have it(e.g. at home, in hospital)
When I have it (days of the week/month, time of day)
How I have it (e.g. with food, on empty stomach)
Treatment end date
42 myeloma.org.uk
Treatment record
Date treatment prescribed
Treatment name
DoseWhere I have it(e.g. at home, in hospital)
When I have it (days of the week/month, time of day)
How I have it (e.g. with food, on empty stomach)
Treatment end date
Date treatment prescribed
Treatment name
DoseWhere I have it(e.g. at home, in hospital)
When I have it (days of the week/month, time of day)
How I have it (e.g. with food, on empty stomach)
Treatment end date
Date treatment prescribed
Treatment name
DoseWhere I have it(e.g. at home, in hospital)
When I have it (days of the week/month, time of day)
How I have it (e.g. with food, on empty stomach)
Treatment end date
43Infoline 0800 980 3332
Treatment record
Date treatment prescribed
Treatment name
DoseWhere I have it(e.g. at home, in hospital)
When I have it (days of the week/month, time of day)
How I have it (e.g. with food, on empty stomach)
Treatment end date
Date treatment prescribed
Treatment name
DoseWhere I have it(e.g. at home, in hospital)
When I have it (days of the week/month, time of day)
How I have it (e.g. with food, on empty stomach)
Treatment end date
Date treatment prescribed
Treatment name
DoseWhere I have it(e.g. at home, in hospital)
When I have it (days of the week/month, time of day)
How I have it (e.g. with food, on empty stomach)
Treatment end date
44 myeloma.org.uk
Treatment record
Date treatment prescribed
Treatment name
DoseWhere I have it(e.g. at home, in hospital)
When I have it (days of the week/month, time of day)
How I have it (e.g. with food, on empty stomach)
Treatment end date
Date treatment prescribed
Treatment name
DoseWhere I have it(e.g. at home, in hospital)
When I have it (days of the week/month, time of day)
How I have it (e.g. with food, on empty stomach)
Treatment end date
Date treatment prescribed
Treatment name
DoseWhere I have it(e.g. at home, in hospital)
When I have it (days of the week/month, time of day)
How I have it (e.g. with food, on empty stomach)
Treatment end date
Complementary therapies record
Complementary therapies are therapies usedalongsideyourconventionalmyeloma treatment. They do not treat yourmyeloma,butaimtohelpyour overallwellbeing.They take a holistic approach and there are many differenttypesofcomplementarytherapybasedonmanydifferentpractices.Themostwell-knownandcommonlyusedincludearomatherapy,acupuncture,homeopathy,massage,reflexology,relaxation,visualisationandyoga.
Complementarytherapiesmayhelptorelievesideeffectsandsymptomssuchaspainandfatigue,helpyoucopewiththestressesofeverydaylife,andgiveyouagreatersenseofcontrolovertheimpactcancerishavingonyourlife.
Speaktoyourdoctorornursewhomaybeabletoreferyou for free complementary therapies or recommend qualifiedtherapists.
Complementary therapies record
You should speak to your doctor before starting any complementary therapy and always ensure you go to a qualified therapist, who has experience of treating cancer patients and belongs to a professional body or organisation.
Usethefollowingpagestokeeparecordofyourcomplementarytherapies,supplementsandnon-prescribedtreatments,afterdiscussingthemwithyourdoctor.
47Infoline 0800 980 3332
Complementary therapies record
Notes
Therapy/ supplement
Date Time
Notes
Therapy/ supplement
Date Time
Notes
Therapy/ supplement
Date Time
Notes
Therapy/ supplement
Date Time
48 myeloma.org.uk
Complementary therapies record
Notes
Therapy/ supplement
Date Time
Notes
Therapy/ supplement
Date Time
Notes
Therapy/ supplement
Date Time
Notes
Therapy/ supplement
Date Time
49Infoline 0800 980 3332
Complementary therapies record
Notes
Therapy/ supplement
Date Time
Notes
Therapy/ supplement
Date Time
Notes
Therapy/ supplement
Date Time
Notes
Therapy/ supplement
Date Time
50 myeloma.org.uk
Complementary therapies record
Symptoms andsideeffects record
Youmayhavearangeofcomplicationscausedbythemyelomaitselforsideeffectsoftreatment.Itcanbeverydifficulttodeterminewhicharecausedbyyourmyelomaandwhicharecausedbyyourtreatmentbecausethereisoftenoverlapbetweenthetwo.Keeparecordandalwaysreportanysymptomsandsideeffectstoyourdoctorornurseassoonaspossible.Theywillassesshowyouarefeelingandmakeanynecessaryadjustmentstoyourtreatmenttoreducethesideeffects.Ifyourtreatmentdoseisreduceditdoesnotnecessarilymeanyourtreatmentwillbelesseffective.
Remembertorecordyoursymptomsandsideeffectsassoonaspossible.Thiswillhelpyoutorecordthemaccuratelyandwillmakediscussionswithyourdoctorand nurse easier.
Symptoms and sideeffectsrecord
The following sections provide space for you to record how you feel. They cover the most common symptoms and side effects, as well as giving space to record anything else affecting you:
Fatigue an extreme tiredness or lack of energy
Pain e.g.inyourback,hips,ribsorshoulders
Peripheral neuropathy numbness,tingling,increasedsensitivity and pain in your hands and feet
Gastrointestinal disturbances constipation,diarrhoea,nauseaandvomiting
Any other symptoms or side effects e.g.dizziness,confusion,headaches,changes tourine(colour,quantity),infections,moods and emotions
Whenthinkingaboutandrecordinghowyou’refeeling,youmayfindithelpfultoconsiderthequestionsontheMy-POStool,anexampleofwhichcanbefoundonthefollowingpages.Thistoolwasdevelopedspecificallyformyeloma patients to help assess their quality of life and highlightanysymptomsandsideeffects,aswellaswiderconcerns,totheirhealthcareteam.Itcanhelpyouthinkabouthowmyelomaisaffectingyouandmakeiteasiertocommunicate this to your doctor or nurse.
Youcandownloadandprintcopiesofthetoolfromwww.pos-pal.org(youwillneedtoregisterbutit’sfree).Youmayfinditahelpfultofillinacopybeforeeachappointmentandgooveritwithyourdoctorornurse.
53Infoline 0800 980 3332
Symptoms and side effects record
MyPOS Patient Version 4
Name:.........................................................................................................................................................
Date (dd/mm/yyyy): ________ / _________ / _____________________
Please answer the following questions by ticking the box that is most true for you. It is important to answer all of the
questions if possible. Your answers will be used to help improve your care and the care of others.
Thank you.
Q1. What are your main problems or concerns at the moment?
1.
2.
3.
Q2. Below is a list of symptoms, which you may or may not have experienced. For each symptom please tick one box that best describes how it has affected you over the past week.
No, not at all
Slightly Moderately Severely Overwhelmingly
Pain 0 1 2 3 4
Shortness of breath 0 1 2 3 4
Weakness or lack of energy 0 1 2 3 4
Nausea (feeling like you are going to be sick) 0 1 2 3 4
Vomiting (being sick) 0 1 2 3 4
Poor appetite 0 1 2 3 4
Constipation 0 1 2 3 4
Sore or dry mouth 0 1 2 3 4
Drowsiness 0 1 2 3 4
Poor mobility 0 1 2 3 4
Diarrhoea 0 1 2 3 4
Tingling in the hands and / or feet 0 1 2 3 4
Difficulty remembering things 0 1 2 3 4
Please list any other symptoms not mentioned above, and tick one box to show how they have affected you over the past week.
1. 0 1 2 3 4
2. 0 1 2 3 4
3. 0 1 2 3 4
54 myeloma.org.uk
Symptoms and side effects record
MyPOS Patient Version 4
No, not at all Occasionally Sometimes Most of the
time Yes, always
Q3. Over the past week, have you been feeling anxious or worried about your illness or treatment?
0 1 2 3 4
Q4. Over the past week, have any of your family or friends been anxious or worried about you?
0 1 2 3 4
Q5. Over the past week, have you been feeling depressed? 0 1 2 3 4
Yes, always Most of the
time Sometimes Occasionally No, not at all
Q6. Over the past week, have you felt at peace?
0 1 2 3 4
Yes, as
much as I wanted
Most of the time
Sometimes Occasionally No, not at all
Q7.
Over the past week, have you been able to share how you are feeling with your family or friends?
0 1 2 3 4
Enough information
Information received
Information received
Very little information
No information received
the right
amount for me but hard to understand
but would like more
and would like more
and would like information
Q8. Over the past week, have you had as much information as you wanted?
0 1 2 3 4
No problems/ Problems addressed
Problems being
addressed
Problems partly
addressed
Most problems
not addressed
Problems not addressed at
all
Q9.
Over the past week, have any practical matters resulting from your illness been addressed? (such as financial or personal)
0 1 2 3 4
Please turn to the next page.
55Infoline 0800 980 3332
Symptoms and side effects record
MyPOS Patient Version 4
Yes, as much as I wanted
Most of the time
Sometimes Occasionally No, not at all
Q10. Over the past week, have you been able to carry out your usual activities without help from others?
0 1 2 3 4
Q11. Over the past week, have you been able to pursue your hobbies and leisure activities?
0 1 2 3 4
Q12. Over the past week, have you been able to spend quality time with family and friends?
0 1 2 3 4
We would like you to answer this question whether or not you are sexually active
Or if you would prefer not to answer then please tick here:
No, not at all Occasionally Sometimes Most of the
time Yes, always
Q13. Over the past week, have you been worrying about your sex life? 0 1 2 3 4
No, not at all Occasionally Sometimes Most of the time
Yes, always
Q14. Over the past week, have you been worrying about infections? 0 1 2 3 4
Q15. Over the past week, have you been worrying about your physical appearance? 0 1 2 3 4
Q16. Over the past week, have you been worrying about your financial situation? 0 1 2 3 4
Q17. Over the past week, have you been worrying that your illness will get worse? 0 1 2 3 4
Yes, always Most of the
time Sometimes Occasionally No, not at all
Q18. Over the past week, have you felt able to cope with your illness and treatment?
0 1 2 3 4
Q19. Are you able to contact your doctors or nurses for advice if needed? 0 1 2 3 4
Q20. Do your doctors and nurses show a good standard of knowledge and skill when treating you?
0 1 2 3 4
Q21. Do your doctors and nurses show care and respect when treating you? 0 1 2 3 4
Enough
information Information
received Information
received Very little
information No information
received
the right
amount for me
but hard to understand
but would like more
and would like more
and would like information
Q22. Do you have enough information about what might happen to you in the future?
0 1 2 3 4
On my own With help
from a friend or relative With help
from a staff member
Q19) How did you complete this questionnaire? 0 1 2
Thank you for your time If you are worried about any of the issues raised on this questionnaire then please speak to your doctor or nurse.
56 myeloma.org.uk
Symptoms and side effects record
If you experience any of the symptoms listed on this page, you must seek urgent medical attention by calling 999. For non-urgent medical attention please contact your doctor or nurse as soon as possible or refer to page 11 for out-of-hours contact details.
Call 999 immediatelyifyouhaveanyofthefollowing:
Symptoms of spinal cord compression, which can cause permanent nerve damage:
● Tingling,lossofsensationorshootingpaininyour arms or legs
● Limbweakness ● Difficultycontrollingyourbladderorbowel ● Spinalpainthatisaggravatedbygoingtothetoilet,coughing or sneezing
Symptoms of a blood clot or deep vein thrombosis: ● Pain,tendernessorswellinginoneofyourcalveswhichmay also feel hot to the touch
● Redskin,e.g.onthebackofyourcalf ● Chest pain ● Suddenshortnessofbreath
Myeloma UK provides free publications on a wide range of symptoms and side effects of myeloma and its treatment.
Downloadororderthemfromourwebsite: myeloma.org.uk/publications
OrderthemviatheMyelomaInfoline: 0800 980 3332
57Infoline 0800 980 3332
Symptoms and side effects record
58 myeloma.org.uk
FatigueSymptoms and side effects record
Fatigue
Fatigue is a feeling of extreme tiredness, lethargy or exhaustion, experienced all or most of the time. Fatigue is different from the everyday tiredness that comes with the demands of daily life.
Itisanoverwhelmingexhaustionthatisnotrelievedbysleeporrestandcanaffectyouphysically,psychologicallyandemotionally.
Fatiguecanbeacomplicationofthemyelomaitselforitcanbeasideeffectoftreatment.Fatigueisverycommonandaffectsover70%ofmyelomapatientsatsomepoint.Livingwithfatiguecanbeextremelychallengingasitcanaffectallareasofyourlife.
Accurately recording your fatigue can help you communicate howyouarefeelingtoyourdoctorornurse.Itcanalsohelptoshowyouwhetheryourfatigueisimprovingovertime.Recordyourfatigueanditseffectsinthefollowingtablesusingthescale,where:
0 Not at all
1 Alittlebit
2 Somewhat
3 Quiteabit
4 Very much
MyelomaUKprovidesfreeinformationaboutfatigue. Youcandownloaditat myeloma.org.uk/publications
Note for doctor or nurse: Forafullassessmentoffatigue,completetheFACT-Fassessmentwithyourpatientatregularintervals
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
61Infoline 0800 980 3332
FatigueSymptoms and side effects record
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
62 myeloma.org.uk
FatigueSymptoms and side effects record
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
63Infoline 0800 980 3332
FatigueSymptoms and side effects record
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
64 myeloma.org.uk
FatigueSymptoms and side effects record
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
65Infoline 0800 980 3332
FatigueSymptoms and side effects record
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
66 myeloma.org.uk
FatigueSymptoms and side effects record
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
67Infoline 0800 980 3332
FatigueSymptoms and side effects record
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
68 myeloma.org.uk
FatigueSymptoms and side effects record
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
69Infoline 0800 980 3332
FatigueSymptoms and side effects record
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
Feel fatigued 0 1 2 3 4
Too tired to eat 0 1 2 3 4
Feel weak 0 1 2 3 4
Need to sleep during day
0 1 2 3 4
Need help doing my usual activities
0 1 2 3 4
Frustrated by being too tired to do the things I want to do
0 1 2 3 4
Date Time
70 myeloma.org.uk
FatigueSymptoms and side effects record
SymptomsPainSymptoms and side effects record
Pain
Accurately recording your pain is a key part of effective pain management.
Recordyourpainregularlyinthefollowingtablesusingthescalewhere:
Ifpainisacommonsideeffectforyouorisnotmanagedwell,youmightwanttoconsiderrecordingyourpainscoreimmediatelybefore,and30minutesafter,takingyourpaintreatment,usingthescaleasaguideonhowtorate your pain.
Usethisrecordofyourpainwhenyouseeyourdoctortoshowwhetheryourpainkillersareeffectivelycontrollingyourpain or not.
MyelomaUKprovidesfreeinformationaboutpain. Youcandownloaditat myeloma.org.uk/publications
Note for doctor or nurse: Forafullassessmentofpain,completetheBriefPainInventory(ShortForm)withyourpatientatregularintervals
0 No pain
10 Worstpain,asbadas you can imagine
01
23
45
67
89
10
01
23
45
67
89
10
01
23
45
67
89
10
01
23
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10
01
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10
01
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10
01
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10
01
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10
01
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01
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01
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67
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10
Des
crip
tion
(loca
tion,
sta
bbin
g, a
chin
g, e
tc.)
Pai
n ra
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Dat
eTi
me
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PainSymptoms and side effects record
01
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67
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10
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Description (location, stabbing, aching, etc.)
Pain rating
Date
Time
74 myeloma.org.uk
PainSymptoms and side effects record
01
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01
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01
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10
Des
crip
tion
(loca
tion,
sta
bbin
g, a
chin
g, e
tc.)
Pai
n ra
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eTi
me
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PainSymptoms and side effects record
01
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01
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Description (location, stabbing, aching, etc.)
Pain rating
Date
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76 myeloma.org.uk
PainSymptoms and side effects record
01
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Des
crip
tion
(loca
tion,
sta
bbin
g, a
chin
g, e
tc.)
Pai
n ra
ting
Dat
eTi
me
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01
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67
89
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10
Description (location, stabbing, aching, etc.)
Pain rating
Date
Time
78 myeloma.org.uk
PainSymptoms and side effects record
01
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Des
crip
tion
(loca
tion,
sta
bbin
g, a
chin
g, e
tc.)
Pai
n ra
ting
Dat
eTi
me
79Infoline 0800 980 3332
PainSymptoms and side effects record
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Description (location, stabbing, aching, etc.)
Pain rating
Date
Time
80 myeloma.org.uk
PainSymptoms and side effects record
SymptomsPeripheral neuropathySymptomsandsideeffectsrecord
Note for doctor or nurse: Forafullassessmentofperipheralneuropathy,completeaneurotoxicityassessmentwithyourpatientatregularintervals.Recommendedassessmenttoolsinclude:NationalCancerInstitute (NCI) common Toxicity Criteria (CTC) Sensory Guide orFACT/GOG-Ntx
MyelomaUKprovidesfreeinformationaboutperipheral neuropathy.Downloaditat myeloma.org.uk/publications
Sometreatmentscancauseperipheralneuropathy,ascanthemyelomaitself.Thenervesmostcommonlyaffectedarethoseofthehands,lowerlegsandfeet.
Thisdamagecauses: ● Pins and needles ● Tinglingornumbness ● Alteredfeeling,painand/orsensitivity
Peripheralneuropathycangetprogressivelyworse,soitisveryimportant to report any of these symptoms to your doctor.
Peripheral neuropathy
Peripheral neuropathy is the term used to describe damage to the nerves that make up the peripheral nervous system (nerves outside of the brain and spinal cord).
Recordyourperipheralneuropathyinthefollowingtablesusingthescale0–3,where:
1 MildDoes not interfere withyourabilityto do your daily activities
2 ModerateMakesitdifficultdoing daily activities,suchas:
● Preparing meals ● Shopping for
groceries ● Handling money
3 SevereMakesitdifficultto,orpreventsyoufrombeingableto:
● Takeashowerorbath
● Get dressed and undressed
● Take treatments ● Eat
0 None
83Infoline 0800 980 3332
Peripheral neuropathySymptomsandsideeffectsrecord
Severity R
atingO
ther notes (e.g. difficulty holding a spoon, diffi
culty fastening shirt buttons, feeling off
balance, becoming m
ore painful than before)
10
23
Date
Time
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23
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Time
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Time
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84 myeloma.org.uk
Peripheral neuropathySymptoms and side effects record
Seve
rity
Rat
ing
Oth
er n
otes
(e.g
. diffi
culty
hol
ding
a s
poon
, diffi
culty
fast
enin
g sh
irt b
utto
ns, f
eelin
g off
bal
ance
, bec
omin
g m
ore
pain
ful t
han
befo
re)
10
23
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e
Tim
e
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e
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e
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e
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e
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85Infoline 0800 980 3332
Peripheral neuropathySymptoms and side effects record
Severity R
atingO
ther notes (e.g. difficulty holding a spoon, diffi
culty fastening shirt buttons, feeling off
balance, becoming m
ore painful than before)
10
23
Date
Time
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23
Date
Time
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23
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Time
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Time
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86 myeloma.org.uk
Peripheral neuropathySymptoms and side effects record
Seve
rity
Rat
ing
Oth
er n
otes
(e.g
. diffi
culty
hol
ding
a s
poon
, diffi
culty
fast
enin
g sh
irt b
utto
ns, f
eelin
g off
bal
ance
, bec
omin
g m
ore
pain
ful t
han
befo
re)
10
23
Dat
e
Tim
e
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23
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e
Tim
e
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e
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e
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e
87Infoline 0800 980 3332
Peripheral neuropathySymptoms and side effects record
Severity R
atingO
ther notes (e.g. difficulty holding a spoon, diffi
culty fastening shirt buttons, feeling off
balance, becoming m
ore painful than before)
10
23
Date
Time
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23
Date
Time
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Time
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Time
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88 myeloma.org.uk
Peripheral neuropathySymptoms and side effects record
Seve
rity
Rat
ing
Oth
er n
otes
(e.g
. diffi
culty
hol
ding
a s
poon
, diffi
culty
fast
enin
g sh
irt b
utto
ns, f
eelin
g off
bal
ance
, bec
omin
g m
ore
pain
ful t
han
befo
re)
10
23
Dat
e
Tim
e
10
23
Dat
e
Tim
e
10
23
Dat
e
Tim
e
10
23
Dat
e
Tim
e
10
23
Dat
e
Tim
e
89Infoline 0800 980 3332
Peripheral neuropathySymptoms and side effects record
Severity R
atingO
ther notes (e.g. difficulty holding a spoon, diffi
culty fastening shirt buttons, feeling off
balance, becoming m
ore painful than before)
10
23
Date
Time
10
23
Date
Time
10
23
Date
Time
10
23
Date
Time
10
23
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90 myeloma.org.uk
Peripheral neuropathySymptoms and side effects record
SymptomsGastrointestinal disturbancesSymptomsandsideeffectsrecord
YoucandownloadacopyoftheGastrointestinal disturbances Infosheet from Myeloma UK at myeloma.org.uk/publications or call the Myeloma Infoline on 0800 980 3332 for more information or if you haveanyquestionsaboutgastrointestinalsymptomsandsideeffects.
Gastrointestinaldisturbances
Constipation, diarrhoea, nausea and vomiting are all common side effects of myeloma treatment, and can have a significant impact on quality of life
Recording these symptoms can help you explain to your doctorhowtheyareaffectingyourqualityoflife.Anaccuraterecordcanalsobeusefulwhentryingtodeterminethecauseof these symptoms.
Ifyoufeelconstipated,havediarrhoeaornauseaand/orarevomiting,refertothescalesonthepageoppositeandthenmakeanoteofitinthetables.
1Happens occasionally,sometimes use stoolsofteners,laxativesoralterdiet
2Regularly using laxativesorenemas. Interferes withyourdailyactivitieslikepreparingmeals,going shopping and social occasions
3Notabletopassany stool or gas. Interfereswithyourabilitytotakecareofyourself:youmaybelessabletoshower,eatandgetdressed
0None
Constipation
1More than four bowelmovementsper day
24–6bowelmovements per day
37ormorebowelmovementsperday,lossofbowelcontrol. Interferes withyourabilityto take care of yourself:youmaybelessabletoshower,eat and get dressed
0None
Diarrhoea
1Lossofappetite,buteatinghabitsunchanged
2Eatingless,buthaven’tlostmuchweight
3Unabletoeatordrink,losingweight
0None
Nausea
11–2 times a day
23–5 times in 24 hours
36 or more times in 24 hours
0None
Vomiting
93Infoline 0800 980 3332
Gastrointestinaldisturbances
Date
Constipation
Diarrhoea
Nausea
Vom
itingTim
e
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94 myeloma.org.uk
Gastrointestinal disturbancesSymptoms and side effects record
Dat
eC
onst
ipat
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rrho
eaN
ause
aV
omiti
ngTi
me
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95Infoline 0800 980 3332
Gastrointestinal disturbancesSymptoms and side effects record
Date
Constipation
Diarrhoea
Nausea
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itingTim
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96 myeloma.org.uk
Gastrointestinal disturbancesSymptoms and side effects record
Dat
eC
onst
ipat
ion
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ause
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omiti
ngTi
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97Infoline 0800 980 3332
Gastrointestinal disturbancesSymptoms and side effects record
Date
Constipation
Diarrhoea
Nausea
Vom
itingTim
e
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23
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98 myeloma.org.uk
Gastrointestinal disturbancesSymptoms and side effects record
Dat
eC
onst
ipat
ion
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rrho
eaN
ause
aV
omiti
ngTi
me
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99Infoline 0800 980 3332
Gastrointestinal disturbancesSymptoms and side effects record
Date
Constipation
Diarrhoea
Nausea
Vom
itingTim
e
01
23
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100 myeloma.org.uk
Gastrointestinal disturbancesSymptoms and side effects record
SymptomsOther symptoms andsideeffectsSymptoms and side effects record
Othersymptomsandsideeffects
Use the following tables to record any other symptoms and side effects that are affecting you. This may include dizziness, confusion, headaches, insomnia, changes to urine (colour, quantity), infections, and mood swings.
Foreachsymptomorsideeffectmakeanoteof:
● Howitfeels–e.g.tightnessinchest,lostbalance ● Howlongitlasts–e.g.threedays,twominutes ● Whetheranythinghelpstoeaseit–e.g.sittingdown, eating,freshair
● Whateffectithasonyourday–e.g.afraidtowalkalone,havetorestintheafternoon
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
103Infoline 0800 980 3332
Other symptoms and side effectsSymptoms and side effects record
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
104 myeloma.org.uk
Other symptoms and side effectsSymptoms and side effects record
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
105Infoline 0800 980 3332
Other symptoms and side effectsSymptoms and side effects record
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
106 myeloma.org.uk
Other symptoms and side effectsSymptoms and side effects record
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
107Infoline 0800 980 3332
Other symptoms and side effectsSymptoms and side effects record
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
108 myeloma.org.uk
Other symptoms and side effectsSymptoms and side effects record
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
109Infoline 0800 980 3332
Other symptoms and side effectsSymptoms and side effects record
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
Date Time Symptom/side effect
How it feels
How long it lasts
What eases it
Impact on your day
110 myeloma.org.uk
Other symptoms and side effectsSymptoms and side effects record
Key myeloma terms
Key myeloma terms
Therecanbealotofnewterminologytobecomefamiliarwithwhendiagnosedwithmyeloma.Itcanfeeloverwhelmingbeingconfrontedwithmedicaljargonsothissectioncontainsdefinitionsforsomekeymyelomatermsthatyoumayfindhelpful.Ifthereareanyothertermsyou’reunsureof,askyourdoctorornursetomakeanoteoftheirdefinitionin this section.
Allogeneic stem cell transplant:Aprocedureinwhichstemcellsfromacompatibledonor(usuallyasibling)aregiventothepatientfollowinghigh-dosechemotherapy.
Anaemia: Aconditioninwhichtheamountofhaemoglobininthebloodorthenumberofredbloodcellsisbelowthenormallevels,causingshortnessofbreath,weaknessandtiredness.
Antibodies (immunoglobulins): Proteins found in the bloodproducedbycellsoftheimmunesystem,calledplasmacells.Theirfunctionistobindtosubstancesinthebodythatarerecognisedasforeignorfaulty(knownasantigens),enablingothercellsoftheimmunesystemtodestroyandremovethem.
Autologous stem cell transplant: Aprocedureinwhichapatient’sownstemcellsarecollected,storedandthengivenbackfollowinghigh-dosechemotherapy.
Bence Jones proteins: Freelightchainsthathavebeenfilteredfromthebloodbythekidneysandarefoundintheurine. The presence of any Bence Jones protein in urine is abnormal.
Bisphosphonate:Atypeofdrugthatslowsdownorpreventsbonedamage.
Blood count:Thenumberofredbloodcells,whitebloodcellsandplateletsinasampleofblood.
Bone marrow aspiration:Aproceduretoremoveasampleoffluidandcellsfromthebonemarrowforexamination and testing.
Bone marrow biopsy/trephine:Aproceduretoremoveasmallsampleofbonemarrowtissueforexaminationundera microscope.
113Infoline 0800 980 3332
Key myeloma terms
Bone marrow: Thesoft,spongytissueinthecentreofbonesthatproducesbloodcells.
Bortezomib (Velcade®): Atypeofproteasomeinhibitordrugwhichisgiveneitherasanintravenousinfusionorsubcutaneousinjection.
Chemotherapy: A type of drug intended to kill cancer cells.Chemotherapydrugscanbeinjectedintoavein(intravenousorIV)orswallowedastablets(orally).
Clinical trial:Aresearchstudyofneworexistingtreatmentthatinvolvespatients.Trialsmaybedesignedtofindbetterwaystoprevent,detect,diagnose,ortreataconditionortoanswerspecificscientificquestions.
Complementary therapy: A therapy used alongside conventionaltreatmente.g.reflexology,acupunctureorreiki.
Cyclophosphamide: Atypeofchemotherapydrugwhichisgivenorallyorasanintravenousinfusion.
Dexamethasone: Atypeofsteroidwhichisgivenorallyorasanintravenousinfusion.
Dialysis: Aprocedurewhichremoveswasteproductsfromtheblood,performedwhenapatient’skidneyshavestoppedworking.
Fatigue: Afeelingofbeingexceptionallytired,lethargicorexhausted all or most of the time. It does not result from activityorexertionandisnotrelievedbyrestorsleep.
Free light chain: Amoleculewhichnormallymakesup partofanantibody.Called“free”lightchainwhenitis not attached to the rest of the molecules that make up theantibody.
Hypercalcaemia: Ahigherthannormallevelofcalciumintheblood,whichmaycauselossofappetite,nausea,thirst,fatigue,muscleweakness,restlessnessandconfusion.
114 myeloma.org.uk
Key myeloma terms
Immunomodulatory drug: A type of drug that acts on the body’simmunesystem.
Intravenous infusion:Aslow“drip”ofdrugsorfluidsintoaveinoverasetperiodoftime.
Lenalidomide (Revlimid®): A type of immunomodulatory drugwhichisgivenorally.
Lytic lesions: Damagetothebonecausedbymyeloma.TheylooklikeholesintheboneonanX-ray.
Monoclonal Gammopathy of Undetermined Significance (MGUS): Anon-cancerousconditioninwhichlowlevelsofparaproteinarepresentintheblood.Patientsdonothavesymptomsbuthaveanincreasedriskofdevelopingmyeloma.
Neutrophil:Atypeofwhitebloodcellimportantfor fightinginfection.
Orally: By mouth.
Osteonecrosis of the jaw (ONJ): Aconditioninwhichthebonesofthejawbecomedamaged.Itisararesideeffectofsometypesofbisphosphonatetreatment.
Palliative care: A type of care or treatment that concentratesonpreventingandrelievingsymptomsandimprovingqualityoflife.
Paraprotein: Anabnormalantibody(immunoglobulin)produced in myeloma. Measurements of paraprotein in the bloodcanbeusedtodiagnoseandmonitorthedisease.AlsoknownasMprotein.
Peripheral neuropathy:Damagetothenervesthatmakeuptheperipheralnervoussystemcausingpain,tingling and altered sensation.
115Infoline 0800 980 3332
Key myeloma terms
Plasma cells:Atypeofwhitebloodcellthatproduceantibodies(immunoglobulins)tofightinfection.
Plasmacytoma: Alocalisedbuild-upofmyelomacellsfoundeitherinsidethebone(intramedullaryplasmacytoma),oroutsidethebone(extramedullaryplasmacytoma).
Platelets:Atypeofbloodcellwhichisinvolvedinbloodclotting.
Quality of life: Atermthatreferstoaperson’slevelofcomfort,enjoyment,andabilitytopursuedailyactivities.Itisameasureofanoverallsenseofwellbeing.
Radiotherapy: TreatmentwithX-rays,gammarays,orelectrons to damage or kill malignant cells.
Red blood cells: Atypeofbloodcellwhichtransportsoxygenaroundthebody.
Smouldering myeloma: Thetermusedtodescribeanearlystageofmyelomainwhichthereisparaproteininthebloodbutnosymptomsandnodamagetoorgans.Smoulderingmyeloma patients do not require treatment.
Stem cell: Atypeofcellfromwhichavarietyofcellsdevelop.Haematopoieticstemcellsgiverisetoredbloodcells,whitebloodcellsandplatelets.Theyareharvestedand collected for stem cell transplantation.
Subcutaneous: Under the skin.
Thalidomide:Atypeofimmunomodulatorydrugwhichisgivenorally.
White blood cells: Atypeofbloodcellinvolvedinthebody’simmunesystem,whichhelptofightinfectionanddisease.
116 myeloma.org.uk
Key myeloma terms
Questions and notes
Afterreceivingyourmyelomadiagnosis,youwillundoubtedlyhavemanyquestionsaboutmyelomaanditscomplications,treatmentandhowyourdiagnosis is going to impact on your life. Afterandinbetweenyourappointmentsnewquestionsmight come to mind. Use this section to make a note of anyquestionsyouhaveforyourhealthcareteamandanyotherpointstoremember.
Some common questions are listed in this section thatmaypromptfurtherquestionsofyourown.
You can also contact the Myeloma Infoline on 0800 980 3332 to speak to one of our InformationSpecialistsaboutanyquestions youmayhaveaboutyourmyeloma.
Questions and notes
Common questionsAfter diagnosis
● WhattestswillIneedtohaveandwhen? ● HowlongwillIhavetowaitforresults andhowwillIbegiventhem?
● Aremybonesaffected? ● Aremykidneysaffected? ● WhoshouldIcontactwhenIhavequestions? ● DoyouhaveanyinformationIcantakehome? ● Whathelpandsupportisavailableoutsideofthehospital? ● WhatcanbedoneforthesymptomsIhavenow?
Tests and treatment ● ShouldIavoidalcohol,certainfoods,oractivitieslike drivingwhileontreatment?
● WillIhavetopayformyprescriptions? ● WherecanIgetaprescriptionexemptionform? ● WillIneedtohavetestsandtreatment?Ifso,when? ● Whataremytreatmentchoices? ● WhatwouldhappenifIdon’thavetreatment? ● Howisthetreatmentgiven,howlongwillittake? ● Whatarethesideeffectsofthetreatment? ● Isthetreatmentpartofaclinicaltrial? ● Cantreatmentaffectmyfertility? ● CanIcarryonwithwork/normalactivities(walking,lifting,socialising,havingsex)whilstIamreceivingtreatment?
● WillIneedtochangemydiet? ● Canyougivemeinformationaboutthetreatment? ● ShouldsomeonecomewithmewhenIgetthetreatment, orthetestresults?
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Questions and notes
After treatment ● HowsoonwillIbeabletogobacktoworkorgoonaholiday?
● HowoftenshouldIhaveacheckuporbloodtest? ● WillIreceiveanyothertreatmentssuchasbisphosphonatesandmaintenancetreatments?
● CanIexercise? ● CanIeatnormally? ● HowwillIknowifthemyelomahascomeback?
Practical and financial support ● WherecanIfindinformationaboutfinance/insurance, socialservices,occupationaltherapy,counselling,etc?
● CanIusecomplementarytherapies? ● HowdoIorganisetransporttothehospital?
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Questions and notes
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Questions and notes
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Questions and notes
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Myeloma UK and other useful organisations
MyelomaUKexiststosupporteveryoneaffectedbymyeloma.Wehaveavarietyofdifferentsupportandinformationservicestohelpyoulivewell.Getincontacttofindouthowwecansupportyou.
Theremayalsobesupportservicesavailableinyourlocalarea.Askyourdoctorornursefordetailsoflocalservices.
Myeloma UK and other useful organisations
Myeloma UK and other useful organisations
We’re here for everything a diagnosis of myeloma brings
Call our Myeloma Infoline on 0800 980 3332 for practicaladvice,emotionalsupportandalisteningear.
Getanswerstoyourquestionsbyemailing [email protected]
Learnaboutmyelomafromexpertsandmeetotherpatients at our Patient and Family Myeloma Infodays.
Orderordownloadour information publications,whichcoverallaspectsofmyeloma–call0800 980 3332 or visitmyeloma.org.uk
Join your nearest Myeloma Support Group to meet up and talk to other people face to face.
Visit myeloma.org.uk,aone-stop-shopforinformationonmyeloma;fromnewsonthelatestresearchanddrugdiscoverytoarticlesonsupport,treatmentandcare.
Watch Myeloma TV,videosaboutmyelomapresentedbyexperts,patientsandfamilymembers.
Use the Discussion Forum for the opportunity to share experiencesandadviceaboutlivingwithmyeloma.
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Myeloma UK and other useful organisations
Useful organisations
Carers UK www.carersuk.org 0808 808 7777Providesadvice,informationandsupportforcarers.
Citizens Advice www.citizensadvice.org.uk England: 03444 111 444Wales: 03444 77 20 20Scotland: 0808 800 9060Northern Ireland: call your local BureauOffersadviceaboutdebtandconsumerissues,benefits, housing,legalmattersandemployment.
Macmillan Cancer Support www.macmillan.org.uk 0808 808 0000Providespractical,medicalandfinancialinformationandsupport to all cancer patients and their carers.
Maggie’s www.maggiescentres.org 0300 123 1801Providesfreepractical,emotionalandsocialsupport topeoplewithcancerandtheirfamilyandfriends.
Mind www.mind.org.uk 0300 123 3393Providesadviceandsupporttoempoweranyoneexperiencingmentalhealthproblems.
NHS 111 Service www.nhs.uk/111 111Call111whenyouneedmedicaladvicefastbutit’snota999emergency.NHS111isavailable24hoursaday,365daysayear.
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Myeloma UK 22LogieMill,BeaverbankBusinessPark, EdinburghEH74HG
0131 557 3332
[email protected]:SC026116
Publishedby: MyelomaUKPublicationdate: July2010Lastupdated: March2019Reviewdate: March2022
We’rehereforeverything adiagnosisofmyelomabringsGet in touch to find out more about how we can support youCall the Myeloma Infoline on
0800 980 3332Email Ask the Nurse at
myeloma.org.uk
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