myeloma matters volume 8 issue 3
DESCRIPTION
Myeloma UKTRANSCRIPT
Volume 8 Issue 3 www.myeloma.org.uk
MyelomaMatters
• NewsroundGreen tea update
• Special featureFindings from fatigue survey
• Medical MattersThe spine: a core issue
• Living with myelomaDiet and myeloma
Dear Readers
Welcome to the latest issue of MyelomaMatters which I hope you will find informative.
In this issue, MyelomaNurse Specialist Linda Little provides anoverview of the treatment and managementof myeloma bone disease of the spine, andan article by our in-house nutrition expertJennifer Foley provides an update on thecurrent advice regarding diet and myeloma.
We are grateful to Malcolm Cole, a patient from Oxfordshire, for sharing hisexperience of myeloma and his new foundrole as an NHS patient representative.
In this issue we also report the findings from a Myeloma UK survey sent to over 100 patients asking about their experienceof fatigue, which remains one of the leastunderstood and poorly treated aspects of myeloma.
As we gear up for National Myeloma Week2009, we ask for your support. The focus of this year's week is to raise awareness ofmyeloma within the GP population so thatfewer patients experience a delay indiagnosis and to raise funds to support ourmyeloma research programme. Please getin touch for a pack which gives informationabout how to get involved.
In the meantime, I hope you enjoy this issueand thank you for your continued support. If you have any feedback or suggestions forMyeloma Matters, I'd love to hear them.
With best wishes
Jude WatsonEditor
2
L E T T E R S / C O N T E N T S
I read with great interest your article on exercise in the last issue of Myeloma Matters. Prior to my myeloma diagnosis, I enjoyed various forms of exercise including cycling but I'vebeen wary of doing any physical activity in case I did more harmthan good or fractured a bone. However, since reading thisarticle I'm going to discuss it with my consultant at my nextappointment and hopefully I'll be back on my bike in time for Spring!
Letters
Editor’s letter
I just wanted to send my personal thanks and also that of mylocal support group for the work that your organisation hascarried out on patient's behalf in reversing NICE's originaldecision on the provision of Revlimid. The arrangement that has been agreed with the various parties is truly remarkable and has provided an enormous lift to people like myself who,after ten years, have recently completed Velcade treatment andwere faced with an uncertain future. Following on from youradvocacy with Velcade, we have much to be thankful for withsuch an active charity looking after our interests. Keep up thegood work and once again, many thanks.
Thank you for reminding me of the dates of National MyelomaWeek 21 – 28 June. I received the postcard insert in the lastissue. I haven't decided how I'm going to get involved yet – butI'll be roping in all my family and friends to help raise muchneeded money and awareness.
Send us your feedbackSend your letters to: Jude Watson, Myeloma UK,
Broughton House, 31 Dunedin Street, Edinburgh EH7 4JG [email protected]
3 – 4 Newsround
5 Special feature
6 Myelomascope
7 Research
8 – 10 The spine: a core issue
11 – 13 Living with myeloma
14 Ask the nurse
15 Policy and politics
16 – 17 Patient experience
18 AL amyloidosis
19 – 20 Fundraising in action
22 – 23 Myeloma UK news
Contents
Malcolm Bidwell, Patient, Colchester Myeloma Support Group
Patient, Torquay
Mrs Black, Patient, London
3
N E W S R O U N D
The 7th Scotland Against CancerConference, supported by theCross Party Group on Cancer ofthe Scottish Parliament, was held inGlasgow on Friday 20 March.
This annual conference provides animportant opportunity for bothpoliticians and stakeholders in thefield of cancer to discuss thedirection of cancer services andpolicy in Scotland. The focus thisyear was the publication of theScottish NHS Cancer Plan, which sets out national plans fordevelopment and addressingchallenges.
Scotland Against Cancer Conference 2009
According to a study undertaken atthe University of Southern California,some components of green teamay counteract the anti-cancereffects of VelcadeTM (bortezomib).This was discovered when thestudy team evaluated whether thecombination of green tea andVelcade would improve theeffectiveness of Velcade inmyeloma patients.
Green tea has been shown to haveanti-cancer properties that havebeen found to be effective againstlung, breast and prostate cancer.
An anti-oxidant compound found in green tea extract called EGCGpolyphenol binds to a commonprotein in cancers and stops itworking. This causes the death of cancer cells.
As Velcade works in a similar way,researchers predicted that givinggreen tea extract to myelomapatients alongside Velcade would
Green tea may 'cancel out' effectiveness of Velcade
enhance the anti-myeloma effect of Velcade. This would provide adouble 'blow' to the myeloma cells.
However, the findings from thestudy showed that the opposite was true. The EGCG compoundappeared to inhibit the action ofVelcade by blocking the mainfunction of the drug. The twoeffectively cancelled one anotherout in the cell. This 'cancelling out'effect was found only inconcentrations of EGCG that wouldbe found in concentrated green teasupplements, i.e. two-threecapsules of green tea extract.
Dr Schöenthal, senior study authorstated that: “the current evidence issufficient enough to strongly urgepatients who are taking Velcade to abstain from using green teaproducts, in particular…highlyconcentrated green tea products.It is important to note that othermyeloma treatments do not reactwith green tea in this way.”
A final positive recommendationfor RevlimidTM (lenalidomide) waspublished this week by theNational Institute for Health andClinical Excellence (NICE). Therecommendation officiallyendorses the use of Revlimid inEngland and Wales for myelomapatients who have received two ormore prior therapies.
Final guidance will be distributedto the NHS within six weeks and by August 2009 Primary CareTrusts will be required by law tomake funding for Revlimidavailable. However, Myeloma UKfully expects most Primary CareTrusts to have already madearrangements so that they canimplement the positive decisionimmediately.
Please contact Sarah on 0131 557 3332 if you experienceany difficulties in obtainingRevlimid, or any treatment, on the NHS.
Revlimid receives
final ‘yes’ from NICE
Keynote speakers at this year'sconference included Nicola SturgeonMSP, Cabinet Secretary for Healthand Well-being and Prof John Frank,Director of Scottish Collaboration forPublic Health Research and Policy.
The audience was given theopportunity to address the panel in aQ&A session and also to participatein one of eight discussion groups.Topics included 'appraisingtreatments', 'diagnosing cancerearlier' and 'reducing cancerinequalities'. A full report from theconference will be available soon at: www.cancerresearchuk.org Nicola Sturgeon MSP
4
N E W S R O U N D
New measures announced to increasepatient access to drugs Four measures designed to speedup patient access to new drugs have been announced by theNational Institute for Health andClinical Excellence (NICE) and Health Minister Lord Darzi. Theseannouncements form part of therecent NHS Next Stage Review in which Lord Darzi stated hiscommitment to speed up the NICEprocess and improve local decision-making on access to new drugs notyet approved by NICE.
The first three measures announcedrelate to proposed changes to NICEappraisals. A consultation documenthas been issued to key stakeholderson proposals that will enable NICE toappraise a drug more quickly andallow the faster referral of drugs. Theproposals for consultation also allowfor an increased level of investmentin 'horizon-scanning' to ensure that
new drugs are identified early on forappraisal. The creation of a newappraisal committee within NICE hasbeen proposed to help ensure thatNICE has the capacity to implementthese changes fully. The fourthmeasure addresses the policy of'exceptional funding' which is theprocess of local NHS decision-making in the absence of NICE
A House of Commons Early DayMotion (EDM), tabled by Dr Ian Gibson MP on 9 February, has recognised the efforts ofMyeloma UK in influencing recentreforms to NICE, which allow it more flexibility in the appraisal ofdrugs for rarer diseases and cancers such as myeloma. Thesereforms, together with a pricingscheme Myeloma UK helped tobring about, made it possible forNICE to overturn the initial negativedecision on Revlimid.
The EDM 'warmly welcomes the positive outcomes for patients'arising from the recent reforms to the NICE appraisal process.
It congratulates the patient groups
Myeloma UK praised in Parliamentthat championed these reforms andwho were involved in the preliminaryrecommendation to make Revlimidavailable for use in the NHS to treatmyeloma, particularly Myeloma UKand the Rarer Cancers Forum.
The EDM also congratulates NICE for introducing additionalconsiderations for the appraisal oflife-extending drugs and Celgene for negotiating this new price sharingscheme. In total there were 39 MP signatures supporting this motion in parliament.
Myeloma UK thanks Members ofParliament both for this recognitionand also for the support they havegiven to the myeloma communitythroughout the Revlimid appraisal.
guidance, usually carried out through Primary Care Trust (PCTs). A handbook for the NHS has beenpublished, detailing good practice onhow decisions on new drugs shouldbe made by PCTs when there is noNICE guidance.
Lord Darzi has stated that thesechanges “will help provide faster and fairer access to new drugs.” The consultation on the proposedchanges to NICE will run for threemonths whereas the handbook has been issued to PCTs withimmediate effect.
Myeloma UK will be responding tothe consultation on the changes tothe NICE appraisal system.
We will also use our experience ofthe current PCT decision-makingprocess to determine the value ofthe new PCT handbook.
Dr Ian Gibson MP
Lord Darzi
5
S P E C I A L F E A T U R E
Myeloma UK survey highlights fatigue a major problem
Fatigue is one of the most commonsymptoms of myeloma and one of the most common side-effects oftreatment. Despite this fatigue remainsone of the least understood andpoorly treated aspects of myeloma.
To help improve our understanding of fatigue Myeloma UK carried out asurvey in over 100 myeloma patients.In comparison to other symptoms ofmyeloma and side-effects of itstreatment, patients surveyed rankedfatigue as the most challenging to live with. In total, 88% of respondentsfound that fatigue made their livesmore difficult. One patient stated that 'the fatigue I feel is like having a harness you put on when you get out of bed in the morning'.
Patients with fatigue reported that itimpacted on their ability to exerciseand do day-to-day activities such as cleaning, socialising and attendinghospital appointments. 83% ofrespondents had experienced fatigueand 70% stated that it impacted onthe quality of their personal and family life.
Although it can be debilitating, themajority of respondents did not report symptoms of fatigue as theyconsidered feeling tired and washedout as something not importantenough to bother their doctor or nurse with.
Around half of all respondents statedthey wanted to receive moreinformation on fatigue and yet only asmall proportion of respondents hadsought advice from their healthcareprofessional on ways to cope withfatigue.
Fatigue can be described as 'extreme tiredness or loss of energy'.
Unlike tiredness, fatigue is often notrelieved by rest or sleep. Patientsstate they feel 'weary in spite ofsleeping well at night'. It can bedifficult to define the exact cause offatigue and in reality there can bemany underlying sources. Fatigue can be due to myeloma and itscomplications; it can be a side-effectof myeloma treatments; and it can be attributable to the emotionalimpact of living with myeloma.
40% of respondents to the surveyhad been told at some point thatfatigue was something they had to'put up with'. However, a commoncause of fatigue is anaemia, atreatable complication of myeloma.Fatigue can also be managed through general lifestyle changes,including to exercise and diet habits, and may also improve oncetreatment is finished.
Take home messageOur survey highlighted that fatiguemay be the symptom that has mostimpact on patients but its assessment and management remainlimited. Healthcare professionals mayperceive fatigue differently to patients,and may underestimate its impact ona patient's quality of life.
The results also demonstrate theneed for better reporting of fatigue by patients to their healthcareprofessionals who may be able tohelp them overcome fatigue throughvarious approaches. Myeloma UKhas information on ways to modifylifestyle to help patients' self-managefatigue.
If you have any questions about the survey or about fatigue call theMyeloma Infoline on 0800 980 3332.
• 83% of respondents had experienced fatigue
• Fatigue ranked as the most challenging symptomof myeloma to live with
• 88% of respondents saidthat fatigue made their lifemore difficult
• Only 28% of respondentshad asked a healthcareprofessional (HCP) foradvice on ways to cope with fatigue
• 50% of patients wanted toreceive more information onfatigue from their HCP
• 40% of respondents hadbeen told that fatigue wasjust something that they had to put up with
• 33% of patients wanted anexplanation of what fatigueis and why they get it
Results snap shot
6
R E S E A R C H
MyelomascopeThe Multiple MyelomaResearch Consortium launchUS study of Zolinza incombination with Velcade for myeloma patientsThe Multiple Myeloma ResearchConsortium (MMRC), in partnershipwith the pharmaceutical companyMerck & Co, has begun a study inthe US of Zolinza™ (vorinostat) takenin combination with Velcade forpatients with relapsed or refractorymyeloma. The study is now open forpatient enrolment at over 60 centresin the USA.
Zolinza belongs to a class of drugscalled oral 'histone deacetylase(HDAC) inhibitors', which affect DNAgene expression. It is anticipatedthat patients who have previously not responded well to Velcade will benefit from a Velcade – Zolinzacombination due to a synergistic effect between the two drugs.
The study is open to patients whohave not had success with previoustreatment with Velcade, either aloneor in combination with other anti-myeloma drugs.
The study will measure numerousthings, including how long patients'myeloma remains stable while takingthe combination of drugs, and anyside-effects experienced.
Expected long-term statisticsare optimistic for myeloma Recent advances in novel drug treatments and supportive care haveled to significant improvements in thesurvival and quality of life of myelomapatients. In light of this, and with theaid of novel statistical assessmentmethodology, researchers have
projected new estimates of the impact they expect that advances inthe treatment and care of myelomapatients will have in the near future.
The results were published in the USjournal Haematologica in an article byHermann Brenner called, 'Expected long-term survival of patients with multiple myeloma in2006-2010'. Encouragingly, thefindings show that patients,particularly those under 45, who arediagnosed during this period canexpect to live significantly longer thanwas previously suggested.
Valproic acid interferes withmyeloma cell growth andsurvivalA drug called valproic acid widelyused as an anti-epileptic drug has recently been shown to havepotential as an anti-myeloma drug as it is targeted to act within the bonemarrow.
Bone is primarily made up of a matrix known as the 'bone marrowmicro-environment'.
This micro-environment containsmany living cells that are responsiblefor the process of bone re-modelling.
There is a very close relationship between myeloma cells and the surrounding cells in the bone marrow micro-environment thatcontribute to the growth and survivalof myeloma cells. The bone marrowmicro-environment also acts to protect myeloma cells from the action of some drugs used todestroy myeloma cells.
Valproic acid belongs to a group of drugs known as HDAC inhibitorsthat interfere with the geneticexpression of certain cells. Recentstudies have confirmed that valproicacid induces myeloma cell death in the bone marrow micro-environment and suppresses themyeloma-induced overproduction of bone-destructing cells.
Valproic acid has also been shown to work well in synergy with other myeloma drugs, includingthalidomide, melphalan and dexamethasone. The results are encouraging and warrant further research to determine how valproicacid can be used alongside currenttreatments for myeloma.
Any questions?
Myeloma Infoline0800 980 3332
www.myeloma.org.uk
7
R E S E A R C H
Highlights from theXII International Myeloma Workshop Over 1,200 myeloma specialists and scientific researchers from more than 50 countries gathered inWashington DC from 26 February – 1 March for the XII InternationalMyeloma Workshop (IMW). Thisglobal conference, devoted entirelyto myeloma, is held every two yearsfor experts in the field of myeloma to present the latest researchfindings and exchange knowledgeand ideas.
The programme consisted of morethan 80 oral presentations, andmany more abstracts werepresented as posters. Outside the official programme, severaladditional formal and informalmeetings took place as thosepresent discussed challenges andopportunities in the field of myeloma.
Eric Low, Chief Executive ofMyeloma UK, attended and metdoctors individually and in groups to discuss the current challengesand opportunities, share informationand collaborate on future myelomaprojects.
The IMW highlighted:• Improvements in the
understanding of myeloma genetics. Understanding the genetics behind myeloma can help in making optimal treatment decisions
• The need to recruit more patientsinto clinical studies. Clinicalstudies help researchers answerimportant question about the best way to treat and manage patients.
The most useful studies are thosethat follow up patients over a longperiod and have large numbers ofpatients from many countries
Myeloma geneticsInternational research is ongoing andexpanding to investigate the geneticmake-up of patients with myeloma.The research will lead to a betterunderstanding of the myelomapathway in different patients, and willultimately help doctors to tailortreatment to specific subgroups andindividual patients to maximiseresponse and minimise side-effects.
Some of this work is being led by Prof Gareth Morgan who is based atthe Institute for Cancer Research inLondon. Prof Morgan's research is funded in part by Myeloma UK and more details of this research are available on our website.
Presentations at the IMWdemonstrated the impressive stridesthat are being taken in this cutting-edge area of myeloma research.
Clinical studies The need for more 'co-operativegroup' Phase III clinical studies wasdiscussed. Co-operative groupclinical studies are those that are run throughout many countriesunder the lead of nationalgovernments, usually supported bypharmaceutical industry funding.This type of study tends to addressquestions that require long-termfollow-up, such as:
• What is the best treatment tohave prior to high-dose therapyand stem cell transplant?
• What is the value of a stem
cell transplant in the age of
novel therapies?
• What is the role of
maintenance therapy?
Past co-operative group studies
have been run in countries
working collaboratively, such as
the UK, France, Spain, Italy and
the Netherlands. With so many
treatment combinations and
possible sequences in which to
use them, it is important for
patients to participate in clinical
studies so that key questions can
be addressed and progress is
continually made in the treatment
and management of myeloma.
New guidelines have also been
developed by a panel of myeloma
experts in an attempt to create a
standard approach to running
clinical studies in myeloma. The
guidelines outline the types of
clinical information to be collected
and how to present the results of
a study. The guidelines emphasise
the need to use standard
definitions of patient populations,
and they should help to ensure
that findings across important
studies can be interpreted
consistently and thus be of the
most benefit to ongoing research.
Overall, the XII IMW provided an
excellent opportunity for doctors
and scientists to update each
other on the latest developments
in myeloma.
8
M E D I C A L M A T T E R S
absolute priority in order to reduceboth long-term problems and impairedquality of life.
ManagementMyeloma bone disease in the spine is managed in two ways:
1. Treatment of the local problem within the spine e.g. vertebralcollapse
2. Treatment of the underlyingmyeloma, which in turn preventsfurther myeloma bone diseaseoccurring
This usually requires a combination ofinterventions, which may include:
• Radiotherapy
• Surgery
• Vertebroplasty or balloonkyphoplasty
• Chemotherapy
• Supportive treatments
• Pain control
RadiotherapyRadiotherapy is the use of high-energyradiation (usually X-rays) to kill cancercells while doing as little harm to thehealthy cells as possible. It works bytargeting rapidly dividing cancer cellsand damaging them so they cannotsurvive or grow.
Radiotherapy is very useful in treatingmyeloma in the spine where themyeloma is causing pain or pressure on the spinal cord. It can also be usedto treat a plasmacytoma.
Radiotherapy may be used alone or inconjunction with surgery.
Radiotherapy treatment has to becarefully planned and requiresspecialist staff and equipment.
The spine: a core issueby Linda Little, Haemato-Oncology Coordinator Nurse Specialist Parkside Oncology Clinic
Myeloma bone disease is the mostcommon and often most debilitatingfeature of myeloma.
Bone pain is therefore a verycommon symptom. Between 70 – 80% of patients have evidenceof myeloma bone disease at the time of diagnosis and most patientswill experience bone disease atsome point.
Myeloma bone disease is due tomyeloma cells in the bone marrowinteracting with the surrounding bonecausing the bone to be broken downfaster than it can be repaired.
The extent of myeloma bone diseasevaries considerably in individualpatients. It most often occurs in themiddle or lower spine, the hips andthe rib cage.
The spine can be involved in at leasttwo distinct ways:
1. Vertebral collapse due to depositsof myeloma cells or bone loss
2. Solitary plasmacytoma of bone – a build-up of myeloma cells in or around the bones of the spine
PresentationDepending on the extent of spinalinvolvement, patients can experienceheight loss and varying degrees ofimmobility and neurological (nerve)problems. Vertebral collapse canlead to spinal deformity, sometimesresulting in very debilitating fracturesof the sternum.
Occasionally spinal cordcompression occurs, which cancause numbness, tingling andaltered sensation in the lower limbs. This can progress to paralysisand therefore is treated as a medical emergency.
InvestigationsX-rays will demonstrate bone lesions,bone loss and fractures. Magneticresonance imaging (MRI) is highlyaccurate in diagnosing andassessing the size of anyplasmacytoma or area of bonedamage, and in showing any spinalcord compression. CT and PET-CTscans can also be useful diagnostictools prior to any plannedradiotherapy and CT-guidedinterventions.
In all instances of myeloma bonedisease in the spine speed ofdiagnosis and treatments is an
Normal spine showing three vertebrae, separated by
vertebral discs. This spine is aligned correctly.
The central vertebra has a compression fracture, causing
misalignment of the spine. This will cause severe back pain.
Balloon kyphoplasty is a
relatively minor surgical
procedure whereby a small
balloon is inserted into the
vertebra to create a space
before cement is injected to
stabilise the fracture.
9
M E D I C A L M A T T E R S
This means it is sometimesnecessary to travel to anotherhospital for treatment. Treatment isgiven using a large machinepositioned exactly over the area ofthe body to be treated. Receivingradiotherapy is very similar to havingan X-ray. The radiation beam isinvisible, and the machine may moveand make a noise. Radiotherapytreatment itself is painless and lastsonly for a few seconds or minutes.
Side-effects of radiotherapy varyfrom person-to-person, but arealmost always temporary anddisappear soon after treatment isfinished. Side-effects may includetiredness and fatigue, nausea andsensitivity of the skin at the treatmentsite (described as being similar to sunburn).
Radiotherapy usually offersimmediate pain relief but continuesto work for up to six weeks followingtreatment; so the full benefits,including pain relief, may not be felt immediately.
SurgerySurgery may be required to removea plasmacytoma or to stabilise thespine and reduce pressure on thespinal cord. Intensive physiotherapymay be used after surgery to enablepatients to regain mobility.
Vertebroplasty or balloonkyphoplastyVertebroplasty and balloonkyphoplasty are two similar types ofprocedure used to help relieve paincaused by collapsed vertebrae.
Vertebroplasty involves injectingorthopaedic cement into thecollapsed vertebrae to stabilise andstrengthen it. This can relieve painand help prevent further collapse.
Balloon kyphoplasty is a similarprocedure that involves inserting a
balloon into the collapsed vertebraand inflating it to restore its shape,stability and strength. In some cases,it is also able to restore some of theheight loss that was caused whenthe vetebra collapsed.
Both of these procedures take placein either the radiology department orspinal surgery theatres at thehospital, and are carried out by aninterventional radiologist or anorthopaedic surgeon. Theprocedures are usually performedunder local anaesthetic or lightsedation, although generalanaesthetic may be used. Theprocedures last about an hour foreach vertebra treated (more than onecan be done at a time), and may bedone as a day case or with just oneovernight stay in hospital.
Vertebroplasty and balloonkyphoplasty are not usually usedinterchangeable; one or other will be used based on the location ornature of the collapsed vertebra
Myeloma Infoline 0800 980 3332
Myeloma Infoguide Series
Nov 06
Bone Disease and Bisphosphonates
Bone Disease andBisphosphonates Infoguide
To order your free copy callMyeloma UK.
Myeloma Infoline0800 980 3332
Further information
10
M E D I C A L M A T T E R S
in the spine. Both vertebroplasty and balloon kyphoplasty may bringimmediate and long-term symptomrelief.
Chemotherapy and steroidsMyeloma bone disease in the spinecan also be reduced by treating theunderlying myeloma, for example by chemotherapy.
Chemotherapy works by targetingrapidly dividing cancer cells andpreventing them from being able to multiply and grow. Unfortunately,chemotherapy may also affect healthyfast-dividing cells such as those in the bone marrow, hair follicles and the lining of the mouth and gut,causing side-effects.
Side-effects of chemotherapy includenausea and vomiting, sore mouth,tiredness and fatigue, hair loss andincreased risk of infection. Patients may feel cumulatively moretired during treatment, but this usuallygradually resolves once treatment is completed.
Steroids such as dexamethasone
and prednisolone may be used incombination with chemotherapy both to treat the underlying myelomaand also to reduce inflammation and pain.
Supportive treatmentThe management of myeloma bonedisease has been revolutionised inrecent years by a group of drugscalled bisphosphonates. These aredrugs that can help protect bonesfrom the damaging action of myelomacells and have several benefits intreating myeloma bone disease in thespine including:
• Preventing or slowing down furtherdamage to the vertebra
• Reducing bone pain
• Reducing the need for radiotherapy
• Reducing the likelihood of furthervertebral collapse
• Improving the chances of healingand recovery of strength of bone
The bisphosphonate may be given asa daily tablet at home or a monthlyintravenous infusion in the outpatientdepartment.
Side-effects of bisphosphonates aregenerally mild and include fever andflu-like symptoms, generalised boneaches and pains, nausea and impairedkidney function.
Pain controlMyeloma bone disease in the spine may cause bone pain due to the thinning and weakening of the vertebra and due to vertebralcollapse. All of the treatmentapproaches outlined above may help reduce or control this pain.
Painkillers or 'analgesics' will also be prescribed to help control pain.Pain is very individual and differentdrugs work best for different people so it is important that an individualapproach is used.
As with any medication, all painkillerscan have side-effects. These caninclude constipation, nausea, loss of appetite and drowsiness. These side-effects can usually be managedeffectively. In the case of painkillersthat are known to causeconstipation, it is important to startdrugs to prevent constipation early,(i.e. laxatives) as constipation ismuch easier to prevent than to treat.
ConclusionThe appropriate assessment and management of myeloma bone disease in the spine isextremely important, particularly in newly diagnosed patients. This involves two treatmentapproaches: managing the localproblem within the spine and treating the underlying myeloma.
The aim of treatment is to maintainspinal function and mobility, and to provide effective symptom andpain relief, while treating themyeloma and helping to optimise thelong-term quality of life for patients.
Chemotherapy andMyeloma Infoguide
To order your free copy call Myeloma UK.
Myeloma Infoline0800 980 3332
Pain Infosheet
Further information
Myeloma Infoline0800 980 3332
To order your free copy call Myeloma UK.
Further information
11
Questions and concerns about dietand nutrition are very common on theMyeloma Infoline from patients, theirfamilies and carers.
The queries are generally about whichtype of food is best to eat or avoid, orif there are any specific or wonderdiets that patients should try.
In all but a very few cases there is nospecific diet that is recommended formyeloma patients. Those who eat ahealthy, balanced diet can benefit inmany ways.
Eating a healthy diet will help to:
• Maximise the body's healing abilityand keep energy levels high
• Best prepare the body fortreatment as well as improvetolerance and response totreatment
• Manage the side-effects oftreatment
• Improve quality of life (a person'scomfort, enjoyment and ability topursue daily activities)
Diet and myelomaL I V I N G W I T H M Y E L O M A
by Jennifer Foley, Nursing and Primary Care Programmes, Myeloma UK
A healthy diet should include: • Lots of vegetables and fruit
• Wholemeal and wholegrainbreads, rice, cereal andpasta
• Fibre-rich foods, includingbeans, legumes and nuts
• Dairy foods, such as yogurt,cheese and milk
• Fish, particularly cold waterfatty fish like salmon, trout,mackerel, sardines and tuna
• Fat, of which olive oil, flax(rapeseed), fish and nuts arethe best sources
• Moderate amounts of leanmeat and poultry
Anti-cancer foodsCertain vegetables, fruit, whole grainsand legumes are thought to have anti-cancer activity because they areespecially rich in vitamins, minerals,fibre and other detoxifying andantioxidant agents that may help tosuppress cancer growth and improvethe body's ability to remove harmfulsubstances.
These are often referred to assuperfoods and include the following:
• Vegetables in the cabbage family:broccoli, brussels sprouts,cabbage, cauliflower, kale, swede and turnips
• Vegetables in the onion family:garlic, onions, leeks and chives
• Berries: blackberries, blueberriesand raspberries
• Whole wheat, corn, oats, rye,brown rice, millet and quinoa
• Beans (pinto, kidney, white, lima, black and red), lentils and split peas
Diet and myeloma – what youneed to knowThe vast majority of myeloma patientsare immuno-compromised because ofthe nature of the cancer. This meansthey are less able to fight infection.
As food contains bacteria and fungi,patients must always be cautiousabout food purchases, preparation,cooking and storage to avoid pickingup an infection. Extra vigilance may be even more important during andafter receiving certain treatments. For example, for a few weeks afterchemotherapy, patients are at greater risk of infection.
Patients also often question whetheror not a poor diet or nutrition mighthave caused or triggered theirmyeloma. The best evidence to dateis unable to draw links between aperson's nutritional choices and theirlikelihood of getting myeloma.
12
L I V I N G W I T H M Y E L O M A
• Wash your hands with soap and warm water
• Use kitchen roll, rather than teatowels
• Cover cuts and scrapes withwaterproof plasters
• Keep pets out of the kitchen whilecooking
• Wash fruit and vegetables beforeeating
• Disinfect work surfaces regularly
• Change or wash your choppingboard when switching between rawand cooked foods
• Cook all foods until piping hot
• Cook meat until the juices run clear
• Avoid microwaves. Use a pre-heated oven to ensure appropriatecooking temperature
Some common diet issues and tips Some common eating issues thatmyeloma patients face are listed below,together with suggestions for copingwith and managing these problems.
Loss of appetiteThis is one of the most common side-effects of myeloma and itstreatment that patients experience.Emotions also play a big part in appetite– it is important to speak with yourfamily, carer or nurse to help lessenyour emotional concerns.
Normally, bacteria and fungi naturallyfound in food are removed bycooking. However, afterchemotherapy, myeloma patients maybe "neutropenic" (i.e. have a low level of neutrophils, a group of thebody's white blood cells that defendagainst food poisoning and infection).
Additionally, the gut lining, whichnormally acts as a barrier to preventbacteria from entering thebloodstream, can be damaged duringtreatment making it easier for bacteriato enter the system.
Some general suggestions forchoosing and preparing foods areset out below:• When shopping avoid buying
from over-filled refrigerators, as the food may not be cold enough
• Avoid raw and cooked meats that are stored with open deli meats. Buy sealed, pre-packaged deli items
• Put chilled and frozen foods in your shopping trolley last. Use a insulated container or bag to transport them from the shop to your home
• Be mindful of the best-before date on packaging. Buy only what you know you can eat well before the date
Raw, unpeeled fruit orvegetables, including salads.Instead eat well-cooked orpeeled fruit and vegetables
Raw, dried fruit in foods likemuesli, Bombay mix andconfectionery
Deli-counter olives, hummus and meats. Only buy sealed,pre-packaged or individualportions
Soft and blue cheese, such asbrie, goat's cheese and creamcheese
Raw or undercooked eggs,including mayonnaise andmeringue. Eat hard-boiled eggsand use shop-boughtmayonnaise
"Live" yogurts, containingprobiotics. Opt for pasteurisedplain and fruit yogurts
Unpasteurised dairy products,such as local milk or parmesan. Choose pasteurised milk andcheese
Raw or undercooked meat,poultry and fish, including shellfish, pate, sushi and smokedsalmon and mackerel
Bottled spring, mineral or carbonated water. Instead, boil and sterilise wateror drink freshly run tap water
When choosing foods to eat, AVOID 'high-risk'foods, such as:
• Keep your fridge temperaturebetween 0 – 5oC
• Keep your freezer below 18oC. Check that food is solidwhen you remove it fordefrosting
• Store cooked foods at the top of the fridge
• Defrost meats and fish at thebottom of the fridge in acovered container
• Always refrigerate eggs
• Never re-freeze thawed foods
• Go to reputable places thatprepare fresh foods. Ensure food is piping hot andcooked all the way through
• Avoid take-aways
• Avoid salad bars, market stallsand other exposed foods
When storing foods at home
When eating out
When preparing food and cooking
13
L I V I N G W I T H M Y E L O M A
In summaryIt is important to eat well so you haveenergy to manage your disease andits treatment; this will help you to getas much enjoyment as you can outof your day-to-day life. Ask yournurse and doctor about dietaryadvice and tips that they might have.
• Try liquid or powdered meal
replacements, such as
"Fortisip", "Ensure", "Build-up"
or "Complan" (Ask your nurse
for more options or call the
Myeloma Infoline for a more
detailed list)
• Eat more frequent, small meals
rather than three large ones
• Have regular snacks of mild
cheese and crackers, muffins,
fruit, pudding, cereal bars or
raisins. Try to take them with
you when you go out
• Stick to liquid-based foods
like soups, juice and chocolate
milk that provide energy and
nutrients
• Try porridge or a cup of warm
milk immediately before bed
time
• Try softer, cool or frozen foods
such as yogurt, ice cream, fruit
smoothies and popsicles
• Take advantage of the times
when you do feel like eating
and have a larger meal. Many
people have a better appetite
in the morning, when they are
rested
• While eating, sip small
amounts of water only. Too
much liquid during meals can
make you feel too full for food
• If your doctor permits, enjoy a
glass of wine or beer before or
during your meal. It can help to
stimulate appetite
• Go out for a light walk.
Exercise also stimulates
appetite
Suggestions: Changed sense of taste or smellMyeloma and its treatment,iespecially chemotherapy andradiotherapy, can affect taste buds,therefore altering how food tastes inthe mouth. Foods can also seem totake on a slightly metallic or bittertaste, in particular meat and otherhigh-protein foods. Many patients find this problem resolves when theyfinish treatment. As each person'ssense of smell and taste may bechanged differently, there are no hardand fast rules.
Suggestions:Choose and prepare foods that lookgood to you
Swap chicken, turkey, eggs or mild,white fish for red meat
Marinate your foods in sweet wine,sauces and dressing to draw out theirflavour
Add pinches of dry herbs, includingbasil, rosemary and oregano
Add flavour to cooked vegetables bymixing in strips of bacon, ham orcooked onion
Add soup stock or cubes to yourcooking water for rice and couscous
Minimise pungent cooking smells by keeping the kitchen fan on,covering foods while cooking andopening the window, when theweather is agreeable
Nausea Feeling nauseous can keep you fromeating and getting enough nutrientsand energy. There are drugs calledanti-emetics that help control this side-effect of myeloma and itstreatment – ask your doctor aboutthem. In the meantime, eat foods thatare easy on your stomach while youare feeling nauseous.
Try to avoid fatty, greasy or fried foodsas well as foods that are very sweet,
• Toast, crackers and pretzels
• Yogurt
• Oatmeal, rice pudding, cream of wheat
• Boiled / mashed potatoes,noodles
• Baked chicken, without skin
• Canned peaches, pears,carrots or other soft bland fruitand cooked vegetables
• Clear liquids, including chickenbroth
• Carbonated drinks like ginger ale
• Ice chips
Suggestions:
spicy or have a strong smell. It mayhelp to eat a small snack before youget hungry, because feelings ofhunger can increase your feeling ofnausea.
Also try eating your food cold or atroom temperature rather than hot. You might want to avoid your favourite foods when feelingespecially nauseous as it may lead toa permanent dislike for these foods.
Any questions?
Myeloma Infoline0800 980 3332
www.myeloma.org.uk
14
L I V I N G W I T H M Y E L O M A
Q. I will have to attend hospitaltwice a week for my Velcadetreatment. Is there any way I can get help with travel costs?
You may be entitled to help withtravel costs to and from hospital forNational Health Service treatment.The Hospital Travel Costs Scheme(HTCS) is for patients who do nothave a medical need for ambulancetransport but who cannot afford thecost of travel to and from hospital.Your entitlement to help is based onyour circumstances such as yourlevel of income and your savings.
You may be entitled to HTCS if you receive, for example, IncomeSupport or income-basedJobseeker's Allowance. Somepeople receiving tax credits may also be entitled to help.
To find out if you are entitled to helpwith travel costs, you will need to fillout a HC1 'Claim for help with healthcosts' form which you can get fromyour local office of the Department of Work and Pensions or your localjob centre.
You have to fill in the form givingvarious details of yourcircumstances. If your application issuccessful, you will receive eithercertificate HC2 or HC3:
• Certificate HC2 means that you will not need to pay the followinghealth costs: NHS dental charges;eye tests, glasses and contactlenses; travel to hospital for NHStreatment; wigs and fabric supports
• Certificate HC3 provides partial help with some of these health costs
Certificates are usually valid for sixmonths. If your circumstances
Ask the nurseremain unchanged after six monthsthen, if necessary, you can make anew claim before the currentcertificate expires. To get your travelcosts refunded you should keep yourreceipts or travel tickets and yourhospital's reception desk will have the necessary forms to claim backexpenses. You can get furtherinformation from the benefit enquiryline on 0800 882 200.
Q. What is the difference between myeloma and solitaryplasmacytoma of bone?
In myeloma, myeloma cells arespread throughout the bone marrowin different bones. If you have asolitary plasmacytoma of bone(SPB), myeloma cells are localised toone area of bone and there is noevidence of myeloma elsewhere.
SPB is normally treated successfullywith radiotherapy and, rarely, surgicalremoval. Recurrence can occur, ascan progression to myeloma. Forthese reasons, SPB patients will bemonitored regularly.
Like myeloma, SPBs produce anabnormal protein called paraprotein.This paraprotein can be measured ina blood test, and the level of thisprotein can be used to check on thesuccess of treatment and to screenfor any recurrence.
It is also possible that an SPB canoccur when a patient already hasmyeloma. This is relativelyuncommon and would normally betreated as above. Patients withmyeloma may also develop anextramedullary plasmacytoma (EMP)(i.e. a build-up of myeloma cellsoutside the bone) usually in areas ofsoft tissue such as the tonsils or at
by Ellen Watters RGN,, Myeloma Information Nurse Specialist, Myeloma UK
the back of the nose. An EMP isnormally treated in the same way asa SPB.
Q. Please tell me more about the use of radiotherapy in myeloma.
Historically, radiotherapy had a biggerrole in the treatment of myeloma thanit does today. These days it isrestricted to the relatively rapidtreatment of 'hot spots' of bone pain,either as an initial treatment or as andwhen required throughout all stagesof myeloma.
It can also be especially useful totreat areas of the body where abuild-up of plasma cells hasoccurred within or on bone. Thesebuild-ups are commonly referred toas a solitary plasmacytoma of boneand can be found, for example, in or around the spine.
Radiotherapy can cause localredness of the skin and sometimessoreness in the area that has beentreated. Tiredness is common afterradiotherapy and can continue forsome weeks after treatment hasfinished.
If radiotherapy is given to theabdomen and lower back, diarrhoea,nausea and vomiting can occur.These side-effects are almost alwaystransient, preventable or treatable.
A new use of radiotherapy is beingpioneered as a way to deliver muchhigher doses of radiation than usual,directly to the myeloma cells in thebone marrow before patientsundergo a stem cell transplant. It ishypothesised that this may potentiallydelay onset of relapse after a stemcell transplant.
15
How will the new rules for'topping-up' work in practice?
P O L I C Y A N D P O L I T I C S
bbyy SSaarraahh RRiittcchhiiee, Policy and Advocacy, Myeloma UK
In Myeloma Matters (Vol. 8 Issue 1), we reported on the UK Governmentannouncement in November 2008that the NHS in England was to lift itsban on 'top-up' treatments withimmediate effect. Since then theScottish Government has made asimilar announcement, and guidancehas been produced by bothgovernments to tell us how the newrules should operate.
For the very first time the rules clarifythat patients are allowed to payprivately – either from their ownpockets or from a private healthcarepackage – for a drug not available onthe NHS, without losing their right tothe other elements of their NHS care.The rules allow patients to top-up,but on the condition that the NHSand private elements of the patient'scare are clearly separated in the waythat they are delivered and managed.
The rules contain a number ofguiding principles about how top-upsshould be managed within the NHS.The following points summarise themain principles set out in both theEnglish and Scottish rules:
• Where a patient opts to pay forprivate care, their entitlement toNHS services remains and maynot be withdrawn
• Private and NHS care should bekept as separate as possible andbe carried out at a different timeand place
• Clinicians should exhaust allreasonable avenues for securingNHS funding before suggestingthat a patient's only option is topay for treatment privately
• It is important that the NHSshould not be seen to beprofiting unreasonably frompatients in these circumstances
Although the rules go some way toexplaining the overarching principlesfor allowing top-ups, Myeloma UKconsiders there is not enough detailto help patients and the NHS tounderstand how topping-up shouldwork in practice.
A good example of the remainingambiguity is the reported uneasethat, in order for clinicians to fulfil therequirement in the guidance to'exhaust all NHS funding routes'before suggesting a patientconsiders paying privately fortreatment, the existing Primary CareTrust exceptional case system willbe overwhelmed with applicationsthat might not otherwise have beenmade. The risk is that this will slowup an already sluggish system whichmay not be fit for purpose.
Further, the separation of the privatefrom the NHS element of treatmentmay not always be straightforward.Treatment for myeloma oftenconsists of a combination of different
drugs that may cause someparticular problems for top-ups.
The drug that a patient needs toobtain privately might be givenalongside other drugs that arenormally available free on the NHS. As a result, Myeloma UK has heardfrom patients who are finding that itis not always clear what it is theyneed to pay for privately and howthis changes the way their treatmentand care is managed.
The management of side-effects may also become confusing whenone drug of a combination therapyhas been paid for privately.
These are just a few of manyambiguities and concerns around top-ups. Myeloma UK has askedboth the UK and ScottishGovernments to make the rulesclearer so that patients and all thoseinvolved in a top-up arrangementknow exactly where they stand.
This is important so that patients,should they choose to pay, havetimely access to treatment andunderstand any changes topping-upmay make to how their myeloma is normally managed.
Myeloma UK wants to hear from myeloma patients who areconsidering topping-up or havealready experienced it.
If you would like to discussyour experience with us, orhave any questions contact: Sarah Ritchie 0131 557 3332 [email protected]
16
P A T I E N T E X P E R I E N C E
It was 1992 and I was given theresults of my annual companymedical. “You are in fine form andexcellent general health. However,there is something odd with one ofthe blood tests. I suggest you get itchecked out by your doctor.” I left,knowing I had always had excellenthealth, and expecting it to remain so.Back at work the next day, I promptlyforgot about the oddity in my blood.
A year later, the annual medical reportwas more explicit. You must give thisreport to your doctor. This time Ifollowed instructions and more testswere done. A couple of weeks laterthe phone call came. “Would I comeand see the consultant? Oh, andbring your wife.”
When you first hear the words‘multiple myeloma’ they aremeaningless, but the words, “Youhave maybe 18 months to live” really puts life in perspective. On the way home, we stopped off at the sweetshop and scoffed enoughchocolates to feed a large family for a month.
It was not long before the aches andpains started, the bowels startedplaying up and clearly, we thought the end was coming. Surprisingly, the monthly visits showed noprogression, but the pains continued.
In retrospect all the discomfort was aside-effect of knowing the worst, i.e. stress. It took many years toaccept this, but now I carry within me a stress bottle. I have noproblems until it overflows. Then Irelax my muscles, think of the sunand the sea, and allow the stress inthe bottle to drain away.
Hanging on for the cure Malcolm Cole, myeloma patient, Oxfordshire
The years went by, 1994, 1995,1996. “This injection is to helpprotect your bones.” I did not know it at the time, but thosemonthly injections were the bestmedicine I had. My bones arestronger than ever.
The roller coaster started for me and my wife in 1998 as the figuresbegan to change and the myelomawas now active. Yes, your partner isaffected too. In some ways it isworse for them.
Time and time again there is thehospital appointment, or a visit froman ambulance. Sometimes it'spneumonia – other times a moreinnocuous bug, all of which needtreatment with antibiotics.
Our partners have real stress but cando little about it, for it is generated byus. Moreover, they also know that
after we have gone, they have tocontinue alone! Every time we visit ahospital, it is a nightmare for them!
My case followed the norm. Therewas chemotherapy and then atransplant. The transplant gave metime, so I looked for a project, areason to live. Our daughter was anarchitect and had a dream aboutbuilding an earth-sheltered ecohouse. So we sold our Londonhome, pooled our resources, and found a site. My wife and I baby-sat, while our daughter designed the house.
My job was to decorate the housewhile living in it, and keep fit with the gardening. I had had somechemotherapy in 2003, but themyeloma was back at the end of2004. They gave me thalidomide. I continued painting, on pin cushionfeet. The doctors thought it wastrapped nerves, in both feet! Now we know it as peripheralneuropathy.
In February 2005, the calf of my leftleg went solid one night. I was told to report to the hospital the next day.I did not get home for a week, asthey fought to clear the blood clotthat had caused the leg problem andhad now moved into the lung. I wason Warfarin for six months, until thedoctors finally agreed the clot wascaused by thalidomide. Now, whenon treatment, I take an aspirin a dayto prevent blood clots.
My myeloma returned in June 2005,so I had a second transplant. Somepeople have friends and familyvisiting them every day in theisolation wards. I laid down my own
Malcolm Cole and his wife Janet
17
P A T I E N T E X P E R I E N C E
house rules – an exercise bike in theroom and absolutely no visitors. I was out in 13 days, one more daythan it took the first time around.
The house was reasonablycomplete, which was just as well asthe myeloma was back within theyear. There were no existingtreatments left, but Velcade hadarrived, at least for the majority of the world. I fought the Primary CareTrust for three months, even trying tocontact lawyers. A starting bill of£1000 convinced me that I could notbeat the NHS or the government. Afew days later, the consultant askedme to attend the Royal MarsdenHospital to check my suitability for amanufacturer's clinical study of threecycles of Velcade.
The study, which ended in March2007, was a success in so far as itrid me of 95% of the bad cells. Ofcourse, Velcade was never going tobe my saviour, and by August thereadings were climbing. This time the Royal Marsden doctors initiatedan attack by putting me on amanufacturer's Phase 1 trial ofRevlimid plus cyclophosphamide and dexamethasone.
If I could complete nine cycles then I would be entitled to free Revlimid forany subsequent treatment. Therewas a proviso. I had to start eachcycle within four weeks of finishingthe previous cycle.
Regrettably, my marrow has taken abattering over the last 15 years, andit took a lot of time rebuilding myplatelets after each cycle. By thefourth cycle, my myeloma hadvanished from the microscope, and
I was in complete remission.Unfortunately, my luck ran out, and Icollapsed one morning with anepileptic fit. I lost the Revlimid, but ithad done its job, so I was happy.
Soon after the start of the Revlimidtrial, my local doctors suggested I become a patient representative.This was fabulous, for it showed theyhad faith that I would be around for a while. I represent myeloma patientsthroughout the Thames Valley CancerNetwork, which stretches fromSwindon and Milton Keynes, throughOxford and down to Reading.
I have some work to do in thesecommittees. I want doctors to alwayshave access to new drugs forappropriate patients, with results fullyrecorded. The doctors getexperience, the drugs are betterunderstood, and NICE have the factsbefore they make a decision ondrugs becoming routinely available.
“I want doctors to
always have access to
new drugs for
appropriate patients…
the doctors get experience,
the drugs are better
understood and NICE have
the facts before they
make a decision on
drugs becoming
routinely available”
Malcolm Cole
It may help avoid the debacle thatNICE had before finally approvingVelcade.
I no longer believe that having aproject helps the body to beatmyeloma, but it encourages apositive frame of mind, and makes it easier to keep fit. This in turnmakes it easier to cope with all theside-effects.
I have been extremely fortunate to befree of pain throughout my myeloma,and I can understand that those withcontinuous pain feel little inclinationto enter clinical studies, with all theadditional stresses involved.
However, I was surprised to hearhow hard it is for the doctors to findany patients willing to join clinicalstudies. Being at the leading edge of treatment is keeping me alive andwell. My last treatment was aresounding success for me, althoughnot for everyone.
It is very important that doctorsidentify why these new treatmentswork for some but not others. There must be an answer. When it is found, patients will no longer run the gauntlet of several failedtreatments, with all the side-effectsthey entail. Think of how muchmoney that will save the NHS!
So why are doctors left to scroungeequipment and resources as theyattempt to solve this problem?
My wife and I want to take thisopportunity to say a sincere thankyou to the staff at the HammersmithHospital, the John Radcliffe Hospitalin Oxford and the Royal MarsdenHospital in Sutton.
18
A L A M Y L O I D O S I S
By Eve Hallam, Myeloma Information Nurse Specialist, Myeloma UK
New services from Myeloma UK for AL amyloidosis AL amyloidosis and myeloma are both diseases of the plasma cellswithin the bone marrow and aresimilar in many ways. About 10 – 15% of patients who have been diagnosed with myeloma haveco-existing AL amyloidosis, or will go on to develop it.
As a disease related to myeloma,Myeloma UK is committed toproviding information and support topeople affected by AL amyloidosis. Inthe course of 2009, Myeloma UK willlaunch a range of services specific tothe disease.
Currently Myeloma UK is...
Increasing the range of its printed AL amyloidosis informationThis includes:
• A new information pack for newlydiagnosed patients
• Two updated Essential Guides, AL amyloidosis – Your EssentialGuide, and Living with ALamyloidosis
• New Infoguides on the current treatment options for AL amyloidosis
• A new range of Infosheets
All of the publications are specificallywritten for AL amyloidosis patients,their family members and friends.
Helping to set up AL amyloidosisspecific support groups in the UK. Anyone interested in starting up a support group for AL amyloidosispatients, their families and carers can contact the Infoline on 0800 9803332.
Myeloma UK can provide help getting started and raising awarenessof the group.
Expanding the amount of dedicatedAL amyloidosis content in MyelomaMatters.
Establishing an annual Patient and Family AL amyloidosis Infodayheld in London. This year the AL amyloidosis Infoday will be held onFriday 29 May. See below for details.
Adding a new section to theMyeloma UK website dedicated to AL amyloidosis information, includinga subject-specific discussion forum.
Funding a study into the use ofchemotherapy in AL amyloidosis. This study, being undertaken byresearchers at the NationalAmyloidosis Centre in London, aims to develop a network of healthcareprofessionals to promote excellence in the treatment and research of AL amyloidosis. The study includes the funding of an AmyloidosisResearch Nurse Specialist for at leasttwo years. See page 22 for details.
Stepping up the campaign for fair and equal access to treatment and care for all myeloma and AL amyloidosis patients.
FUNDRAISING IN ACTION
19
Auctioned cow boosts coffee morning takings
At the end of last year, CaroleJohnston and her mother PhyllisSteel organised a coffee andChristmas shopping morning atThirsk Auction Mart raising over£3,500 for Myeloma UK.
A heifer cow, donated by a localfarmer to raise funds for the event,was auctioned the previous dayboosting the amount raised by £680.
A few issues ago (Vol 7, Iss 6), we reported that Myeloma UKfundraiser Dan Biggane was holdinga series of musical events aroundthe South West to raise money forMyeloma UK in memory of hismother, Shirley Lea.
Since then Dan has held 16concerts all over the region, coveringevery conceivable musical genre and has now smashed the £10,000mark in his fundraising efforts. FromJazz at St James' Wine Vaults inBath to Summer Soul at the MerlinTheatre and a Punk Party at theCheese and Grain pub in Frome, he has pulled out all the stops toraise as much money as possible for Myeloma UK.
Dan raised the money mostlythrough ticket sales but also throughgenerous donations from PurrPromotions, the Bayman CharitableTrust and the Operation andKilmerdon's Reel People FilmSociety.
Speaking about his achievements,Dan said: "It has been a veryhumbling process and I'm grateful to everyone who has helped toarrange a show, performed orattended – all this wouldn't have beenachieved if it wasn't for you."Thanks to Dan for his incredible efforts.
Dan Biggane's
29 firefighters in Grimsby haveshaved their heads to raise fundsand awareness of myeloma for their colleague, Pete Oxley. Petewas diagnosed with myeloma inJune 2008 and has recentlyundergone a stem cell transplant at Castle Hill Hospital, Hull.
As well as shaving their heads, as a mark of support for Pete'schemotherapy-induced hair loss,some of the firefighters will run theGreat North Run later on in the yearand two of them, Steve Critten andAndy Dixon, ran the Lincolnshire10K run on 29 March dressed infull uniform, including breathingapparatus.
Steve said: "We are doing the
Great North Run in September but thought that if we could findsomething nearer to home and a bit shorter we would have a go.
The packs we ran in weighed about 28 pounds, and with the breathing gear included it was pretty tough going.”
So far the efforts of the firefightershave brought in an impressive£7,366. Talking about hiscolleague's efforts, Pete said, "I am over the moon with what the lads are doing, and it is such aworthwhile cause."
Thank you from Myeloma UK toeveryone involved in fundraising on Pete’s behalf.
Firefighters shave 'for Pete's sake'
As Phyllis explained, "I couldn'tbelieve it. I've no idea who it was,but would like to thank him verymuch. It was so generous and acomplete surprise."Phyllis andCarole's continued support ismuch appreciated.
Congratulations and thank youfrom everyone at Myeloma UK forraising such an impressive sum.
'Music4Myeloma' update
20
Myeloma UK has teamed up withentertainment agency the GildedBalloon to stage our ‘Stand up formyeloma’ comedy events to raisemoney and awareness.
When Myeloma UK started workingon their ideas for the events lastyear they had a meeting with Artistic Director, Karen Koren, from the Gilded Balloon to putforward their plans. On the strengthof the pitch, the Gilded Balloonagreed to partner with Myeloma UKand produce the events and source comedians for the nightsfree of charge.
Speaking about their involvement,Karen said, "We were impressedwith the dedication and enthusiasm
Myeloma UK is proud to be anofficial charity of the 2009 AlbertBartlett Edinburgh Marathon for thesecond year running. If you are notup to running it yourself, why notpersuade a family member, friend or colleague to take part in either the full marathon or in a team of four for the Hairy Haggis relay?
We expect to have over 110 runnerstaking part, all wearing our brightorange running vests, which will beimpossible to miss. We will have anumber of cheering stations throughthe course including a specialdedicated Myeloma UK mile,between the 14 – 15 mile mark,which will be lined with Myeloma UKsupporters cheering our runners on.
All Myeloma UK runners will haveaccess to a wealth of pre-raceinformation and support to help withtheir training plans. It will include avideo of Mel Edwards, former Scottishinternational marathon and crosscountry runner, providing tips for both relay and full marathon runners.In addition, Myeloma UK in-house
nutritional expert Jen Foley runsthrough what to eat to get runnersinto the best possible shape aheadof the run. Watch both of thesevideos on Myeloma TV atwww.myelomatv.org.uk.
We have set our fundraising targetfor the Edinburgh Marathon at anambitious £75,000. Reaching a target of this size will allowMyeloma UK to fund up to two research grants in 2009.
Join Team Myeloma UK on 31 May for the 2009 Albert Bartlett Edinburgh Marathon
Myeloma UK teams up with the Gilded Balloonto present myeloma comedy events
of the team at Myeloma UK, and,with it being a locally-based charity,we wanted to do what we could tosupport them. We hope the eventswill help to raise the profile of thislittle known cancer."
Myeloma UK Chief Executive, EricLow, said, "The Gilded Balloon hasreceived such high acclaim withinentertainment and comedy circles inthe UK and we feel very privileged topartner with them. Their involvementwill ensure our comedy nights will bea resounding success."
Myeloma UK patron, MaureenLipman, also expressed her delightabout the partnership: "Myeloma isa difficult and challenging cancerand unfortunately there is not muchtime for laughter amongst all theworry and stress of a diagnosis –as I found when my husband Jackwas going through it. The 'Standup for myeloma' events willprovide light relief and a bit oflaughter, which are so important. I hope that patients, familymembers, and all their friendscome along to support one of the events during the year."
If you, or anyone you know is interested in running forMyeloma UK, please contact: Lorna Cunningham 0131 557 3332 [email protected]
See page 23 for details and venues
FUNDRAISING IN ACTION
21
My working dayIn the Infoline office, the phone isking. When it rings, it takesprecedence over everything else.My colleague Ellen, also a MyelomaInformation Nurse Specialist, takescalls in the morning, and I take overin the afternoon. However, we backeach other up throughout the daytaking calls on the second line.Sometimes the phone just doesn'tstop ringing!
A recent Monday was a goodexample of this. The phone doesn'tstop. Across the country theMyeloma UK annual mailing islanding on the doorsteps of ourservice users and supporters. This is going to be a busy day.
On the Infoline we take lots oforders for our patient information,sign up new subscribers toMyeloma Matters, and talk topatients and family members about a variety of topics rangingfrom symptoms and side-effects to where to get the best travelinsurance.
Although most of the calls to theInfoline are about myeloma, an
Eve Hallam, Myeloma Information Nurse Specialist, Myeloma UK
increasing number are about AL amyloidosis.
This is my special area of interest,and today I talked with a patientabout going to the NationalAmyloidosis Centre (NAC) in Londonfor tests, what that might involve,and the practicalities of getting there.
Later, I call one of the ResearchNurses at the NAC for an update on the AL amyloidosis study thatMyeloma UK is funding. While we'refielding calls a number of emailsarrive in [email protected] mailbox. There arequestions on peripheral neuropathy,complications of myeloma, how toget a second opinion, and how tofind out about local MyelomaSupport Groups. Ellen and I split theemails and begin drafting replies.
Later in the afternoon I take a longcall from a patient who has amultitude of questions. We don'thave a time limit on calls so I'm ableto give the caller as long as sheneeds. Towards the end of the call Ioutline the points we have talked
M Y E L O M A U K N E W S
Get involved... To order your National Myeloma Week pack: 0131 557 3332 [email protected] www.myeloma.org.uk/nmw09
Take part in National Myeloma Week 21 – 28 June
about and give her a few practicalideas for going forward. This is apart of the job I find most rewarding– being able to give as much time topatients and family members asthey need, something that is notalways possible on the ward or inthe clinic.
Between calls I work on copy forMyeloma Matters (this article infact!), finish drafting some of thenew AL amyloidosis patientinformation, and work on updatingthe Revlimid Infoguide with the newdraft NICE guidance in mind.
At the end of the day I turn theanswering machine on, ready to do it all again tomorrow.
Myeloma Infoline 0800 980 3332
22
M Y E L O M A U K N E W S
Myeloma UK awards two research grants
Background to this research Oral treatment is often now prescribedas initial therapy for patients with newlydiagnosed myeloma. This has resultedin an increasing number of patientsmanaging their own treatment regimensat home. However, oral treatmentapproaches have implications for bothpatients and the healthcareprofessional in charge of their care.
Patients need to understand how tocomply with their treatment regime andwhen to report problems andcomplications such as side-effects.
Information provision to patients iscentral to effective self-management oforal treatment in myeloma. How thisinformation is provided – and in whatform – by the healthcare professional isthe focus of this study.
Research overviewThe aim of this 18 month study is tounderstand how healthcareprofessionals, in particular clinical nursespecialists (CNSs), communicate anddeliver information to myeloma patientsundergoing their first course of oralchemotherapy, and to explore howconfident patients feel in self-managingoral chemotherapy at home.
Data will be collected from patientsthrough a survey that will ascertain theirknowledge and confidence in the self-management of oral chemotherapy.Data will also be collected throughinterviews with healthcare professionalsand through observations ofinformation-giving sessions withpatients. The study will also have afocus on family members and
carers who may be responsible forcoordinating a patient's treatmentregime.
The value of this researchThe study will provide valuableinformation about how CNSs and other healthcare professionalscommunicate and provide informationto patients, and provide feedback onthe tools they use to do this.
Results from this research will alsohighlight any problematic areas relatedto patient understanding and safe self-management of chemotherapy,and will produce evidence to inform the development of good practiceguidelines for information-givingpractices.
Title of research study: Information and self management of oral chemotherapy for myelomaStudy lead: Dr Anne Arber, University of SurreyGrant award: £30,000 Start date: April 2009 Duration of grant: 18 months
Myeloma UK has awarded two research grants for projects to be carried out at the University of Surrey and the London-based National Amyloidosis Centre, as part of its commitment to funding research to improve the care, treatment and quality of life of patients living with myeloma and its related disorders.
Background to this researchAL amyloidosis is a rare and seriousplasma cell disease, closely related tomyeloma. All available treatments arebased on those used in myeloma butside-effects and complications aremuch more common and severe in ALamyloidosis.
This research study will for the first timeclosely monitor patients' chemotherapytreatment and collect extensive dataover a three year period on responsesand side-effects in a broad ALamyloidosis patient population.
Research overviewHoping to recruit over 500 patientsover three years, this will be the largestever study of its kind in AL amyloidosis.
This study aims to intensively monitor
responses, tolerability and side-effectsto all types of chemotherapy treatmentbeing given to AL amyloidosis patientswho have been assessed at theNational Amyloidosis Centre (NAC).The study will also assess patients'quality of life before, during and afterchemotherapy.
The information will be acquired by a specialist nurse at the NAC,substantially through the use ofquestionnaires and through frequenttelephone discussion with doctors andpatients at treating hospitals around thecountry. This information will be fedback to the doctors at these hospitalsaround the UK essentially creating anew national amyloidosis network.Myeloma UK has agreed to fund thefirst two years of this study.
The value of this researchThrough the development of a new andnovel model for monitoring treatmentresponses in AL amyloidosis, the topline value of this research is thepotential for improvement to patientcare.
By establishing a national amyloidosisnetwork, healthcare professionals willbenefit from shared information aboutthe best way to treat patients with thisserious disease and patients acrossthe UK should benefit from moreinformed treatment decisions.
The results from the study will help toinform changes to current clinicalpractice and complements the ongoingefforts of Myeloma UK to improve thestandards of treatment and care forpatients with AL amyloidosis.
Title of research study: A study of AL amyloidosis chemotherapy using intensive shared-care monitoringStudy lead: Dr Ashutosh Wechalekar, National Amyloidosis Centre Grant award: £70,000 Start date: May 2009 Duration of grant: 2 years
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Stand up
• ManchesterComedy StoreSunday 24 May
• Edinburgh The Jam HouseSunday 21 June
• London Comedy StoreMonday 5 October
charity comedy nightsfor myeloma
Patient and Family Myeloma Infodays
Meet others with myeloma, share experiences, learn from experts
• Belfast Saturday 16 May• Liverpool Saturday 20 June• Sheffield Saturday 5 September
To register your place contact Kirsty 0131 557 3332 [email protected] register online www.myeloma.org.uk
Rat Race Urban Adventure
To register your place contact Lorna 0131 557 3332 [email protected]
• Edinburgh 18 / 19 July• London 26 / 27 September
• London Sunday 10 May• Bristol Saturday 19 September
Retail Therapy Walk for Research
For details contact Sara 0131 557 3332 [email protected]/rtw
Join Team Myeloma UK to take part in this unique team event.
Join a sponsored walk with a difference –
Tickets £15 0131 557 3332buy online www.myeloma.org.uk/comedy
F O R T H C O M I N G E V E N T S
Myeloma Matters editorial and production team Medical Editor: Dr Gordon Cook Director, Blood and Marrow Transplantation Programme St James’s University Hospital, LeedsEditor: Jude Watson Editorial support: Sara MorganDesign: Linda Scott-McFarlane
Myeloma UKPresident: Prof Gareth Morgan Chairman: Judy Dewinter Chief Executive: Eric Low Patron: Maureen Lipman CBEBoard of Directors: Greg Allon, Dr Gordon Cook, Josie Dobrin, Jackie Green RGN, Peter Hunt, Claude Littner, Andrew McAllister, Dr Atul Mehta
Myeloma Matters is published bi-monthly by Myeloma UK. The information presented in Myeloma Mattersis not intended to take the place of medical care or the advice of a doctor. Your doctor should always beconsulted regarding diagnosis and treatment. No part of this newsletter may be reproduced in any way without prior permission from Myeloma UK
Myeloma UKBroughton House, 31 Dunedin Street, Edinburgh EH7 4JG Tel: 0131 557 3332 Fax: 0131 557 9785Email: [email protected] Myeloma Infoline: 0800 980 3332www.myeloma.org.uk Charity No. SC 026116National Myeloma Week 21 – 28 June