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MyelomaMatters

• Newsround Green tea update

• Special feature Findings from fatigue survey

• Medical Matters The spine: a core issue

• Living with myeloma Diet and myeloma Volume 8 Issue 3

www.myeloma.org.uk


LETTERS

Editor’s letter Dear Readers Welcome to the latest issue of Myeloma Matters which I hope you will find informative. In this issue, Myeloma Nurse Specialist Linda Little provides an overview of the treatment and management of myeloma bone disease of the spine, and an article by our in-house nutrition expert Jennifer Foley provides an update on the current advice regarding diet and myeloma. We are grateful to Malcolm Cole, a patient from Oxfordshire, for sharing his experience of myeloma and his new found role 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 experience of fatigue, which remains one of the least understood and poorly treated aspects of myeloma. As we gear up for National Myeloma Week 2009, we ask for your support. The focus of this year's week is to raise awareness of myeloma within the GP population so that fewer patients experience a delay in diagnosis and to raise funds to support our myeloma research programme. Please get in touch for a pack which gives information about how to get involved. In the meantime, I hope you enjoy this issue and thank you for your continued support. If you have any feedback or suggestions for Myeloma Matters, I'd love to hear them. With best wishes

Jude Watson Editor

/

CONTENTS

Contents 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

Letters I just wanted to send my personal thanks and also that of my local support group for the work that your organisation has carried out on patient's behalf in reversing NICE's original decision 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 and were faced with an uncertain future. Following on from your advocacy with Velcade, we have much to be thankful for with such an active charity looking after our interests. Keep up the good work and once again, many thanks. Malcolm Bidwell, Patient, Colchester Myeloma Support Group 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've been wary of doing any physical activity in case I did more harm than good or fractured a bone. However, since reading this article I'm going to discuss it with my consultant at my next appointment and hopefully I'll be back on my bike in time for Spring! Patient, Torquay Thank you for reminding me of the dates of National Myeloma Week 21 – 28 June. I received the postcard insert in the last issue. I haven't decided how I'm going to get involved yet – but I'll be roping in all my family and friends to help raise much needed money and awareness. Mrs Black, Patient, London

Send us your feedback Send your letters to: Jude Watson, Myeloma UK, Broughton House, 31 Dunedin Street, Edinburgh EH7 4JG  jude@myeloma.org.uk

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NEWSROUND

Scotland Against Cancer Conference 2009 The 7th Scotland Against Cancer Conference, supported by the Cross Party Group on Cancer of the Scottish Parliament, was held in Glasgow on Friday 20 March. This annual conference provides an important opportunity for both politicians and stakeholders in the field of cancer to discuss the direction of cancer services and policy in Scotland. The focus this year was the publication of the Scottish NHS Cancer Plan, which sets out national plans for development and addressing challenges.

Keynote speakers at this year's conference included Nicola Sturgeon MSP, Cabinet Secretary for Health and Well-being and Prof John Frank, Director of Scottish Collaboration for Public Health Research and Policy. The audience was given the opportunity to address the panel in a Q&A session and also to participate in one of eight discussion groups. Topics included 'appraising treatments', 'diagnosing cancer earlier' and 'reducing cancer inequalities'. A full report from the conference will be available soon at: www.cancerresearchuk.org

Nicola Sturgeon MSP

Green tea may 'cancel out' effectiveness of Velcade

Revlimid receives

According to a study undertaken at the University of Southern California, some components of green tea may counteract the anti-cancer effects of Velcade (bortezomib). This was discovered when the study team evaluated whether the combination of green tea and Velcade would improve the effectiveness of Velcade in myeloma patients.

A final positive recommendation for Revlimid (lenalidomide) was published this week by the National Institute for Health and Clinical Excellence (NICE). The recommendation officially endorses the use of Revlimid in England and Wales for myeloma patients who have received two or more prior therapies.

TM

Green tea has been shown to have anti-cancer properties that have been found to be effective against lung, breast and prostate cancer. An anti-oxidant compound found in green tea extract called EGCG polyphenol binds to a common protein in cancers and stops it working. This causes the death of cancer cells. As Velcade works in a similar way, researchers predicted that giving green tea extract to myeloma patients alongside Velcade would

enhance the anti-myeloma effect of Velcade. This would provide a double 'blow' to the myeloma cells. However, the findings from the study showed that the opposite was true. The EGCG compound appeared to inhibit the action of Velcade by blocking the main function of the drug. The two effectively cancelled one another out in the cell. This 'cancelling out' effect was found only in concentrations of EGCG that would be found in concentrated green tea supplements, i.e. two-three capsules of green tea extract. Dr Schöenthal, senior study author stated that: “the current evidence is sufficient enough to strongly urge patients who are taking Velcade to abstain from using green tea products, in particular…highly concentrated green tea products. It is important to note that other myeloma treatments do not react with green tea in this way.”

final ‘yes’ from NICE TM

Final guidance will be distributed to the NHS within six weeks and by August 2009 Primary Care Trusts will be required by law to make funding for Revlimid available. However, Myeloma UK fully expects most Primary Care Trusts to have already made arrangements so that they can implement the positive decision immediately. Please contact Sarah on 0131 557 3332 if you experience any difficulties in obtaining Revlimid, or any treatment, on the NHS.

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NEWSROUND

New measures announced to increase patient access to drugs guidance, usually carried out through Primary Care Trust (PCTs). A handbook for the NHS has been published, detailing good practice on how decisions on new drugs should be made by PCTs when there is no NICE guidance.

Four measures designed to speed up patient access to new drugs have been announced by the National Institute for Health and Clinical Excellence (NICE) and Health Minister Lord Darzi. These announcements form part of the recent NHS Next Stage Review in which Lord Darzi stated his commitment to speed up the NICE process and improve local decisionmaking on access to new drugs not yet approved by NICE.

Lord Darzi

The first three measures announced relate to proposed changes to NICE appraisals. A consultation document has been issued to key stakeholders on proposals that will enable NICE to appraise a drug more quickly and allow the faster referral of drugs. The proposals for consultation also allow for an increased level of investment in 'horizon-scanning' to ensure that

new drugs are identified early on for appraisal. The creation of a new appraisal committee within NICE has been proposed to help ensure that NICE has the capacity to implement these changes fully. The fourth measure addresses the policy of 'exceptional funding' which is the process of local NHS decisionmaking in the absence of NICE

Lord Darzi has stated that these changes “will help provide faster and fairer access to new drugs.� The consultation on the proposed changes to NICE will run for three months whereas the handbook has been issued to PCTs with immediate effect. Myeloma UK will be responding to the consultation on the changes to the NICE appraisal system. We will also use our experience of the current PCT decision-making process to determine the value of the new PCT handbook.

Myeloma UK praised in Parliament A House of Commons Early Day Motion (EDM), tabled by Dr Ian Gibson MP on 9 February, has recognised the efforts of Myeloma UK in influencing recent reforms to NICE, which allow it more flexibility in the appraisal of drugs for rarer diseases and cancers such as myeloma. These reforms, together with a pricing scheme Myeloma UK helped to bring about, made it possible for NICE to overturn the initial negative decision on Revlimid. The EDM 'warmly welcomes the positive outcomes for patients' arising from the recent reforms to the NICE appraisal process.

Dr Ian Gibson MP

4

It congratulates the patient groups

that championed these reforms and who were involved in the preliminary recommendation to make Revlimid available for use in the NHS to treat myeloma, particularly Myeloma UK and the Rarer Cancers Forum. The EDM also congratulates NICE for introducing additional considerations for the appraisal of life-extending drugs and Celgene for negotiating this new price sharing scheme. In total there were 39 MP signatures supporting this motion in parliament. Myeloma UK thanks Members of Parliament both for this recognition and also for the support they have given to the myeloma community throughout the Revlimid appraisal.


SPECIAL

FEATURE

Myeloma UK survey highlights fatigue a major problem Unlike tiredness, fatigue is often not relieved by rest or sleep. Patients state they feel 'weary in spite of sleeping well at night'. It can be difficult to define the exact cause of fatigue and in reality there can be many underlying sources. Fatigue can be due to myeloma and its complications; it can be a side-effect of myeloma treatments; and it can be attributable to the emotional impact of living with myeloma.

Fatigue is one of the most common symptoms of myeloma and one of the most common side-effects of treatment. Despite this fatigue remains one of the least understood and poorly treated aspects of myeloma. To help improve our understanding of fatigue Myeloma UK carried out a survey in over 100 myeloma patients. In comparison to other symptoms of myeloma and side-effects of its treatment, patients surveyed ranked fatigue as the most challenging to live with. In total, 88% of respondents found that fatigue made their lives more 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'.

Results snap shot

Patients with fatigue reported that it impacted on their ability to exercise and do day-to-day activities such as cleaning, socialising and attending hospital appointments. 83% of respondents had experienced fatigue and 70% stated that it impacted on the quality of their personal and family life.

• 83% of respondents had experienced fatigue

Although it can be debilitating, the majority of respondents did not report symptoms of fatigue as they considered feeling tired and washed out as something not important enough to bother their doctor or nurse with.

• Only 28% of respondents had asked a healthcare professional (HCP) for advice on ways to cope with fatigue

Around half of all respondents stated they wanted to receive more information on fatigue and yet only a small proportion of respondents had sought advice from their healthcare professional on ways to cope with fatigue. Fatigue can be described as 'extreme tiredness or loss of energy'.

• Fatigue ranked as the most challenging symptom of myeloma to live with • 88% of respondents said that fatigue made their life more difficult

40% of respondents to the survey had been told at some point that fatigue was something they had to 'put up with'. However, a common cause of fatigue is anaemia, a treatable complication of myeloma. Fatigue can also be managed through general lifestyle changes, including to exercise and diet habits, and may also improve once treatment is finished.

Take home message Our survey highlighted that fatigue may be the symptom that has most impact on patients but its assessment and management remain limited. Healthcare professionals may perceive fatigue differently to patients, and may underestimate its impact on a patient's quality of life.

• 40% of respondents had been told that fatigue was just something that they had to put up with

The results also demonstrate the need for better reporting of fatigue by patients to their healthcare professionals who may be able to help them overcome fatigue through various approaches. Myeloma UK has information on ways to modify lifestyle to help patients' self-manage fatigue.

• 33% of patients wanted an explanation of what fatigue is and why they get it

If you have any questions about the survey or about fatigue call the Myeloma Infoline on 0800 980 3332.

• 50% of patients wanted to receive more information on fatigue from their HCP

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RESEARCH

Myelomascope The Multiple Myeloma Research Consortium launch US study of Zolinza in combination with Velcade for myeloma patients The Multiple Myeloma Research Consortium (MMRC), in partnership with the pharmaceutical company Merck & Co, has begun a study in the US of Zolinza™ (vorinostat) taken in combination with Velcade for patients with relapsed or refractory myeloma. The study is now open for patient enrolment at over 60 centres in the USA. Zolinza belongs to a class of drugs called oral 'histone deacetylase (HDAC) inhibitors', which affect DNA gene expression. It is anticipated that patients who have previously not responded well to Velcade will benefit from a Velcade – Zolinza combination due to a synergistic effect between the two drugs. The study is open to patients who have not had success with previous treatment with Velcade, either alone or in combination with other antimyeloma drugs. The study will measure numerous things, including how long patients' myeloma remains stable while taking the combination of drugs, and any side-effects experienced.

Expected long-term statistics are optimistic for myeloma Recent advances in novel drug treatments and supportive care have led to significant improvements in the survival and quality of life of myeloma patients. In light of this, and with the aid of novel statistical assessment methodology, researchers have

6

This micro-environment contains many living cells that are responsible for 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 that contribute to the growth and survival of myeloma cells. The bone marrow micro-environment also acts to protect myeloma cells from the action of some drugs used to destroy myeloma cells.

projected new estimates of the impact they expect that advances in the treatment and care of myeloma patients will have in the near future. The results were published in the US journal Haematologica in an article by Hermann Brenner called, 'Expected long-term survival of patients with multiple myeloma in 2006-2010'. Encouragingly, the findings show that patients, particularly those under 45, who are diagnosed during this period can expect to live significantly longer than was previously suggested.

Valproic acid interferes with myeloma cell growth and survival A drug called valproic acid widely used as an anti-epileptic drug has recently been shown to have potential as an anti-myeloma drug as it is targeted to act within the bone marrow. Bone is primarily made up of a matrix known as the 'bone marrow micro-environment'.

Valproic acid belongs to a group of drugs known as HDAC inhibitors that interfere with the genetic expression of certain cells. Recent studies have confirmed that valproic acid induces myeloma cell death in the bone marrow microenvironment and suppresses the myeloma-induced overproduction of bone-destructing cells. Valproic acid has also been shown to work well in synergy with other myeloma drugs, including thalidomide, melphalan and dexamethasone. The results are encouraging and warrant further research to determine how valproic acid can be used alongside current treatments for myeloma.

Any questions?  Myeloma Infoline

0800 980 3332  askthenurse@myeloma.org.uk

www.myeloma.org.uk


RESEARCH

Highlights from the XII International Myeloma Workshop Over 1,200 myeloma specialists and scientific researchers from more than 50 countries gathered in Washington DC from 26 February – 1 March for the XII International Myeloma Workshop (IMW). This global conference, devoted entirely to myeloma, is held every two years for experts in the field of myeloma to present the latest research findings and exchange knowledge and ideas. The programme consisted of more than 80 oral presentations, and many more abstracts were presented as posters. Outside the official programme, several additional formal and informal meetings took place as those present discussed challenges and opportunities in the field of myeloma. Eric Low, Chief Executive of Myeloma UK, attended and met doctors individually and in groups to discuss the current challenges and opportunities, share information and collaborate on future myeloma projects. 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 patients into clinical studies. Clinical studies help researchers answer important question about the best way to treat and manage patients.

The most useful studies are those that follow up patients over a long period and have large numbers of patients from many countries

Myeloma genetics International research is ongoing and expanding to investigate the genetic make-up of patients with myeloma. The research will lead to a better understanding of the myeloma pathway in different patients, and will ultimately help doctors to tailor treatment to specific subgroups and individual patients to maximise response and minimise side-effects. Some of this work is being led by Prof Gareth Morgan who is based at the Institute for Cancer Research in London. 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 IMW demonstrated the impressive strides that are being taken in this cuttingedge area of myeloma research.

Clinical studies The need for more 'co-operative group' Phase III clinical studies was discussed. Co-operative group clinical studies are those that are run throughout many countries under the lead of national governments, usually supported by pharmaceutical industry funding. This type of study tends to address questions that require long-term follow-up, such as: • What is the best treatment to have prior to high-dose therapy and 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.

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MEDICAL

MATTERS

The spine: a core issue by Linda Little, Haemato-Oncology Coordinator Nurse Specialist Parkside Oncology Clinic Myeloma bone disease is the most common and often most debilitating feature of myeloma.

absolute priority in order to reduce both long-term problems and impaired quality of life.

Bone pain is therefore a very common symptom. Between 70 – 80% of patients have evidence of myeloma bone disease at the time of diagnosis and most patients will experience bone disease at some point.

Management Myeloma bone disease in the spine is managed in two ways:

Myeloma bone disease is due to myeloma cells in the bone marrow interacting with the surrounding bone causing the bone to be broken down faster than it can be repaired.

1. Treatment of the local problem within the spine e.g. vertebral collapse Normal spine showing three vertebrae, separated by vertebral discs. This spine is aligned correctly.

This usually requires a combination of interventions, which may include:

The extent of myeloma bone disease varies considerably in individual patients. It most often occurs in the middle or lower spine, the hips and the rib cage.

• Radiotherapy • Surgery • Vertebroplasty or balloon kyphoplasty

The spine can be involved in at least two distinct ways: 1. Vertebral collapse due to deposits of myeloma cells or bone loss 2. Solitary plasmacytoma of bone – a build-up of myeloma cells in or around the bones of the spine

Presentation Depending on the extent of spinal involvement, patients can experience height loss and varying degrees of immobility and neurological (nerve) problems. Vertebral collapse can lead to spinal deformity, sometimes resulting in very debilitating fractures of the sternum. Occasionally spinal cord compression occurs, which can cause numbness, tingling and altered sensation in the lower limbs. This can progress to paralysis and therefore is treated as a medical emergency. 8

2. Treatment of the underlying myeloma, which in turn prevents further myeloma bone disease occurring

• Chemotherapy • Supportive treatments The central vertebra has a compression fracture, causing misalignment of the spine. This will cause severe back pain.

Investigations X-rays will demonstrate bone lesions, bone loss and fractures. Magnetic resonance imaging (MRI) is highly accurate in diagnosing and assessing the size of any plasmacytoma or area of bone damage, and in showing any spinal cord compression. CT and PET-CT scans can also be useful diagnostic tools prior to any planned radiotherapy and CT-guided interventions. In all instances of myeloma bone disease in the spine speed of diagnosis and treatments is an

• Pain control

Radiotherapy Radiotherapy is the use of high-energy radiation (usually X-rays) to kill cancer cells while doing as little harm to the healthy cells as possible. It works by targeting rapidly dividing cancer cells and damaging them so they cannot survive or grow. Radiotherapy is very useful in treating myeloma in the spine where the myeloma is causing pain or pressure on the spinal cord. It can also be used to treat a plasmacytoma. Radiotherapy may be used alone or in conjunction with surgery. Radiotherapy treatment has to be carefully planned and requires specialist staff and equipment.


MEDICAL

This means it is sometimes necessary to travel to another hospital for treatment. Treatment is given using a large machine positioned exactly over the area of the body to be treated. Receiving radiotherapy is very similar to having an X-ray. The radiation beam is invisible, and the machine may move and make a noise. Radiotherapy treatment itself is painless and lasts only for a few seconds or minutes. Side-effects of radiotherapy vary from person-to-person, but are almost always temporary and disappear soon after treatment is finished. Side-effects may include tiredness and fatigue, nausea and sensitivity of the skin at the treatment site (described as being similar to sunburn). Radiotherapy usually offers immediate pain relief but continues to work for up to six weeks following treatment; so the full benefits, including pain relief, may not be felt immediately.

Surgery Surgery may be required to remove a plasmacytoma or to stabilise the spine and reduce pressure on the spinal cord. Intensive physiotherapy may be used after surgery to enable patients to regain mobility. Vertebroplasty or balloon kyphoplasty Vertebroplasty and balloon kyphoplasty are two similar types of procedure used to help relieve pain caused by collapsed vertebrae. Vertebroplasty involves injecting orthopaedic cement into the collapsed vertebrae to stabilise and strengthen it. This can relieve pain and help prevent further collapse. Balloon kyphoplasty is a similar procedure that involves inserting a

MATTERS

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.

balloon into the collapsed vertebra and inflating it to restore its shape, stability and strength. In some cases, it is also able to restore some of the height loss that was caused when the vetebra collapsed. Both of these procedures take place in either the radiology department or spinal surgery theatres at the hospital, and are carried out by an interventional radiologist or an orthopaedic surgeon. The procedures are usually performed under local anaesthetic or light sedation, although general anaesthetic may be used. The procedures last about an hour for each vertebra treated (more than one can be done at a time), and may be done as a day case or with just one overnight stay in hospital. Vertebroplasty and balloon kyphoplasty are not usually used interchangeable; one or other will be used based on the location or nature of the collapsed vertebra

Further information Bone Disease and Bisphosphonates Myeloma Infoguide Series

Myeloma Nov 06 Infoline 0800 980 3332

Bone Disease and Bisphosphonates Infoguide To order your free copy call Myeloma UK.

 Myeloma Infoline

0800 980 3332

 askthenurse@myeloma.org.uk 9


MEDICAL in the spine. Both vertebroplasty and balloon kyphoplasty may bring immediate and long-term symptom relief.

Chemotherapy and steroids Myeloma bone disease in the spine can also be reduced by treating the underlying myeloma, for example by chemotherapy.

MATTERS

and prednisolone may be used in combination with chemotherapy both to treat the underlying myeloma and also to reduce inflammation and pain.

Supportive treatment The management of myeloma bone disease has been revolutionised in recent years by a group of drugs called bisphosphonates. These are Chemotherapy works by targeting drugs that can help protect bones rapidly dividing cancer cells and from the damaging action of myeloma preventing them from being able cells and have several benefits in to multiply and grow. Unfortunately, treating myeloma bone disease in the chemotherapy may also affect healthy spine including: fast-dividing cells such as those in the bone marrow, hair follicles and • Preventing or slowing down further the lining of the mouth and gut, damage to the vertebra causing side-effects. • Reducing bone pain Side-effects of chemotherapy include • Reducing the need for radiotherapy nausea and vomiting, sore mouth, tiredness and fatigue, hair loss and • Reducing the likelihood of further increased risk of infection. vertebral collapse Patients may feel cumulatively more • Improving the chances of healing tired during treatment, but this usually and recovery of strength of bone gradually resolves once treatment is completed. The bisphosphonate may be given as a daily tablet at home or a monthly Steroids such as dexamethasone intravenous infusion in the outpatient department. Further information

As with any medication, all painkillers can have side-effects. These can include constipation, nausea, loss of appetite and drowsiness. These side-effects can usually be managed effectively. In the case of painkillers that are known to cause constipation, it is important to start drugs to prevent constipation early, (i.e. laxatives) as constipation is much easier to prevent than to treat.

Conclusion The appropriate assessment and management of myeloma bone disease in the spine is extremely important, particularly in newly diagnosed patients. This involves two treatment approaches: managing the local problem within the spine and treating the underlying myeloma. The aim of treatment is to maintain spinal function and mobility, and to provide effective symptom and pain relief, while treating the myeloma and helping to optimise the long-term quality of life for patients.

Further information

Side-effects of bisphosphonates are generally mild and include fever and flu-like symptoms, generalised bone aches and pains, nausea and impaired kidney function.

Pain control

Chemotherapy and Myeloma Infoguide To order your free copy call Myeloma UK.

 Myeloma Infoline

0800 980 3332

 askthenurse@myeloma.org.uk 10

Myeloma bone disease in the spine may cause bone pain due to the thinning and weakening of the vertebra and due to vertebral collapse. All of the treatment approaches 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 different drugs work best for different people so it is important that an individual approach is used.

Pain Infosheet To order your free copy call Myeloma UK.

 Myeloma Infoline

0800 980 3332

 askthenurse@myeloma.org.uk


LIVING

WITH

MYELOMA

Diet and myeloma by Jennifer Foley, Nursing and Primary Care Programmes, Myeloma UK Anti-cancer foods Certain vegetables, fruit, whole grains and legumes are thought to have anticancer activity because they are especially rich in vitamins, minerals, fibre and other detoxifying and antioxidant agents that may help to suppress cancer growth and improve the body's ability to remove harmful substances. These are often referred to as superfoods and include the following:

Patients also often question whether or not a poor diet or nutrition might have caused or triggered their myeloma. The best evidence to date is unable to draw links between a The queries are generally about which person's nutritional choices and their type of food is best to eat or avoid, or likelihood of getting myeloma. if there are any specific or wonder diets that patients should try. A healthy diet should include: In all but a very few cases there is no • Lots of vegetables and fruit specific diet that is recommended for myeloma patients. Those who eat a • Wholemeal and wholegrain healthy, balanced diet can benefit in breads, rice, cereal and many ways. pasta Questions and concerns about diet and nutrition are very common on the Myeloma Infoline from patients, their families and carers.

Eating a healthy diet will help to: • Maximise the body's healing ability and keep energy levels high • Best prepare the body for treatment as well as improve tolerance and response to treatment • Manage the side-effects of treatment • Improve quality of life (a person's comfort, enjoyment and ability to pursue daily activities)

• Fibre-rich foods, including beans, legumes and nuts • Dairy foods, such as yogurt, cheese and milk • Fish, particularly cold water fatty fish like salmon, trout, mackerel, sardines and tuna • Fat, of which olive oil, flax (rapeseed), fish and nuts are the best sources • Moderate amounts of lean meat and poultry

• 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, blueberries and 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 you need to know The vast majority of myeloma patients are immuno-compromised because of the nature of the cancer. This means they are less able to fight infection. As food contains bacteria and fungi, patients must always be cautious about food purchases, preparation, cooking and storage to avoid picking up an infection. Extra vigilance may be even more important during and after receiving certain treatments. For example, for a few weeks after chemotherapy, patients are at greater risk of infection.

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LIVING

WITH

MYELOMA

Normally, bacteria and fungi naturally found in food are removed by cooking. However, after chemotherapy, myeloma patients may be "neutropenic" (i.e. have a low level of neutrophils, a group of the body's white blood cells that defend against food poisoning and infection). Additionally, the gut lining, which normally acts as a barrier to prevent bacteria from entering the bloodstream, can be damaged during treatment making it easier for bacteria to enter the system. Some general suggestions for choosing and preparing foods are set 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

When storing foods at home • Keep your fridge temperature between 0 – 5 C o

• Keep your freezer below 18 C. Check that food is solid when you remove it for defrosting o

• Store cooked foods at the top of the fridge • Defrost meats and fish at the bottom of the fridge in a covered container • Always refrigerate eggs • Never re-freeze thawed foods

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When eating out • Go to reputable places that prepare fresh foods. Ensure food is piping hot and cooked all the way through • Avoid take-aways • Avoid salad bars, market stalls and other exposed foods

When choosing foods to eat, AVOID 'high-risk' foods, such as: Raw, unpeeled fruit or vegetables, including salads. Instead eat well-cooked or peeled fruit and vegetables Raw, dried fruit in foods like muesli, Bombay mix and confectionery Deli-counter olives, hummus and meats. Only buy sealed, pre-packaged or individual portions Soft and blue cheese, such as brie, goat's cheese and cream cheese Raw or undercooked eggs, including mayonnaise and meringue. Eat hard-boiled eggs and use shop-bought mayonnaise "Live" yogurts, containing probiotics. Opt for pasteurised plain and fruit yogurts Unpasteurised dairy products, such as local milk or parmesan. Choose pasteurised milk and cheese Raw or undercooked meat, poultry and fish, including shell fish, pate, sushi and smoked salmon and mackerel Bottled spring, mineral or carbonated water. Instead, boil and sterilise water or drink freshly run tap water

When preparing food and cooking • Wash your hands with soap and warm water • Use kitchen roll, rather than tea towels • Cover cuts and scrapes with waterproof plasters • Keep pets out of the kitchen while cooking • Wash fruit and vegetables before eating • Disinfect work surfaces regularly • Change or wash your chopping board when switching between raw and cooked foods • Cook all foods until piping hot • Cook meat until the juices run clear • Avoid microwaves. Use a preheated oven to ensure appropriate cooking temperature

Some common diet issues and tips Some common eating issues that myeloma patients face are listed below, together with suggestions for coping with and managing these problems. Loss of appetite This is one of the most common side-effects of myeloma and its treatment that patients experience. Emotions also play a big part in appetite – it is important to speak with your family, carer or nurse to help lessen your emotional concerns.


LIVING

Suggestions: • 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

WITH

MYELOMA

Changed sense of taste or smell Myeloma and its treatment, iespecially chemotherapy and radiotherapy, can affect taste buds, therefore altering how food tastes in the mouth. Foods can also seem to take on a slightly metallic or bitter taste, in particular meat and other high-protein foods. Many patients find this problem resolves when they finish treatment. As each person's sense of smell and taste may be changed differently, there are no hard and fast rules. Suggestions: Choose and prepare foods that look good 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 their flavour

spicy or have a strong smell. It may help to eat a small snack before you get hungry, because feelings of hunger can increase your feeling of nausea. Also try eating your food cold or at room temperature rather than hot. You might want to avoid your favourite foods when feeling especially nauseous as it may lead to a permanent dislike for these foods.

Suggestions: • Toast, crackers and pretzels • Yogurt • Oatmeal, rice pudding, cream of wheat • Boiled / mashed potatoes, noodles • Baked chicken, without skin

Add pinches of dry herbs, including basil, rosemary and oregano

• Canned peaches, pears, carrots or other soft bland fruit and cooked vegetables

Add flavour to cooked vegetables by mixing in strips of bacon, ham or cooked onion

• Clear liquids, including chicken broth

Add soup stock or cubes to your cooking water for rice and couscous Minimise pungent cooking smells by keeping the kitchen fan on, covering foods while cooking and opening the window, when the weather is agreeable

Nausea Feeling nauseous can keep you from eating and getting enough nutrients and energy. There are drugs called anti-emetics that help control this side-effect of myeloma and its treatment – ask your doctor about them. In the meantime, eat foods that are easy on your stomach while you are feeling nauseous. Try to avoid fatty, greasy or fried foods as well as foods that are very sweet,

• Carbonated drinks like ginger ale • Ice chips

In summary It is important to eat well so you have energy to manage your disease and its treatment; this will help you to get as much enjoyment as you can out of your day-to-day life. Ask your nurse and doctor about dietary advice and tips that they might have.

Any questions?  Myeloma Infoline

0800 980 3332

 askthenurse@myeloma.org.uk

www.myeloma.org.uk 13


LIVING

WITH

MYELOMA

Ask the nurse by Ellen Watters RGN,, Myeloma Information Nurse Specialist, Myeloma UK Q. I will have to attend hospital twice a week for my Velcade treatment. Is there any way I can get help with travel costs? You may be entitled to help with travel costs to and from hospital for National Health Service treatment. The Hospital Travel Costs Scheme (HTCS) is for patients who do not have a medical need for ambulance transport but who cannot afford the cost of travel to and from hospital. Your entitlement to help is based on your circumstances such as your level of income and your savings. You may be entitled to HTCS if you receive, for example, Income Support or income-based Jobseeker's Allowance. Some people receiving tax credits may also be entitled to help. To find out if you are entitled to help with travel costs, you will need to fill out a HC1 'Claim for help with health costs' form which you can get from your local office of the Department of Work and Pensions or your local job centre. You have to fill in the form giving various details of your circumstances. If your application is successful, you will receive either certificate HC2 or HC3: • Certificate HC2 means that you will not need to pay the following health costs: NHS dental charges; eye tests, glasses and contact lenses; travel to hospital for NHS treatment; wigs and fabric supports • Certificate HC3 provides partial help with some of these health costs Certificates are usually valid for six months. If your circumstances 14

remain unchanged after six months then, if necessary, you can make a new claim before the current certificate expires. To get your travel costs refunded you should keep your receipts or travel tickets and your hospital's reception desk will have the necessary forms to claim back expenses. You can get further information from the benefit enquiry line on 0800 882 200.

Q. What is the difference between myeloma and solitary plasmacytoma of bone? In myeloma, myeloma cells are spread throughout the bone marrow in different bones. If you have a solitary plasmacytoma of bone (SPB), myeloma cells are localised to one area of bone and there is no evidence of myeloma elsewhere. SPB is normally treated successfully with radiotherapy and, rarely, surgical removal. Recurrence can occur, as can progression to myeloma. For these reasons, SPB patients will be monitored regularly. Like myeloma, SPBs produce an abnormal protein called paraprotein. This paraprotein can be measured in a blood test, and the level of this protein can be used to check on the success of treatment and to screen for any recurrence. It is also possible that an SPB can occur when a patient already has myeloma. This is relatively uncommon and would normally be treated as above. Patients with myeloma may also develop an extramedullary plasmacytoma (EMP) (i.e. a build-up of myeloma cells outside the bone) usually in areas of soft tissue such as the tonsils or at

the back of the nose. An EMP is normally treated in the same way as a SPB.

Q. Please tell me more about the use of radiotherapy in myeloma. Historically, radiotherapy had a bigger role in the treatment of myeloma than it does today. These days it is restricted to the relatively rapid treatment of 'hot spots' of bone pain, either as an initial treatment or as and when required throughout all stages of myeloma. It can also be especially useful to treat areas of the body where a build-up of plasma cells has occurred within or on bone. These build-ups are commonly referred to as a solitary plasmacytoma of bone and can be found, for example, in or around the spine. Radiotherapy can cause local redness of the skin and sometimes soreness in the area that has been treated. Tiredness is common after radiotherapy and can continue for some weeks after treatment has finished. If radiotherapy is given to the abdomen and lower back, diarrhoea, nausea and vomiting can occur. These side-effects are almost always transient, preventable or treatable. A new use of radiotherapy is being pioneered as a way to deliver much higher doses of radiation than usual, directly to the myeloma cells in the bone marrow before patients undergo a stem cell transplant. It is hypothesised that this may potentially delay onset of relapse after a stem cell transplant.


POLICY

AND

POLITICS

How will the new rules for 'topping-up' work in practice? by Sarah Ritchie, Policy and Advocacy, Myeloma UK drugs that may cause some particular problems for top-ups.

In Myeloma Matters (Vol. 8 Issue 1), we reported on the UK Government announcement in November 2008 that the NHS in England was to lift its ban on 'top-up' treatments with immediate effect. Since then the Scottish Government has made a similar announcement, and guidance has been produced by both governments to tell us how the new rules should operate. For the very first time the rules clarify that patients are allowed to pay privately – either from their own pockets or from a private healthcare package – for a drug not available on the NHS, without losing their right to the other elements of their NHS care. The rules allow patients to top-up, but on the condition that the NHS and private elements of the patient's care are clearly separated in the way that they are delivered and managed. The rules contain a number of guiding principles about how top-ups should be managed within the NHS. The following points summarise the main principles set out in both the English and Scottish rules:

The drug that a patient needs to obtain privately might be given alongside other drugs that are normally available free on the NHS. As a result, Myeloma UK has heard from patients who are finding that it is not always clear what it is they need to pay for privately and how this changes the way their treatment and care is managed. • It is important that the NHS should not be seen to be profiting unreasonably from patients in these circumstances Although the rules go some way to explaining the overarching principles for allowing top-ups, Myeloma UK considers there is not enough detail to help patients and the NHS to understand how topping-up should work in practice.

• Private and NHS care should be kept as separate as possible and be carried out at a different time and place

A good example of the remaining ambiguity is the reported unease that, in order for clinicians to fulfil the requirement in the guidance to 'exhaust all NHS funding routes' before suggesting a patient considers paying privately for treatment, the existing Primary Care Trust exceptional case system will be overwhelmed with applications that might not otherwise have been made. The risk is that this will slow up an already sluggish system which may not be fit for purpose.

• Clinicians should exhaust all reasonable avenues for securing NHS funding before suggesting that a patient's only option is to pay for treatment privately

Further, the separation of the private from the NHS element of treatment may not always be straightforward. Treatment for myeloma often consists of a combination of different

• Where a patient opts to pay for private care, their entitlement to NHS services remains and may not be withdrawn

The management of side-effects may also become confusing when one drug of a combination therapy has been paid for privately. These are just a few of many ambiguities and concerns around top-ups. Myeloma UK has asked both the UK and Scottish Governments to make the rules clearer so that patients and all those involved in a top-up arrangement know exactly where they stand. This is important so that patients, should they choose to pay, have timely access to treatment and understand any changes topping-up may make to how their myeloma is normally managed. Myeloma UK wants to hear from myeloma patients who are considering topping-up or have already experienced it.

If you would like to discuss your experience with us, or have any questions contact: Sarah Ritchie  0131 557 3332  sarahr@myeloma.org.uk

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PATIENT

EXPERIENCE

Hanging on for the cure Malcolm Cole, myeloma patient, Oxfordshire after we have gone, they have to continue alone! Every time we visit a hospital, it is a nightmare for them!

It was 1992 and I was given the results of my annual company medical. “You are in fine form and excellent general health. However, there is something odd with one of the blood tests. I suggest you get it checked out by your doctor.” I left, knowing I had always had excellent health, and expecting it to remain so. Back at work the next day, I promptly forgot about the oddity in my blood. A year later, the annual medical report was more explicit. You must give this report to your doctor. This time I followed instructions and more tests were done. A couple of weeks later the phone call came. “Would I come and see the consultant? Oh, and bring your wife.” When you first hear the words ‘multiple myeloma’ they are meaningless, but the words, “You have maybe 18 months to live” really puts life in perspective. On the way home, we stopped off at the sweetshop and scoffed enough chocolates to feed a large family for a month. It was not long before the aches and pains started, the bowels started playing up and clearly, we thought the end was coming. Surprisingly, the monthly visits showed no progression, but the pains continued. In retrospect all the discomfort was a side-effect of knowing the worst, i.e. stress. It took many years to accept this, but now I carry within me a stress bottle. I have no problems until it overflows. Then I relax my muscles, think of the sun and the sea, and allow the stress in the bottle to drain away. 16

My case followed the norm. There was chemotherapy and then a transplant. The transplant gave me time, so I looked for a project, a reason to live. Our daughter was an architect and had a dream about building an earth-sheltered eco house. So we sold our London home, pooled our resources, and found a site. My wife and I babysat, while our daughter designed the house.

Malcolm Cole and his wife Janet The years went by, 1994, 1995, 1996. “This injection is to help protect your bones.” I did not know it at the time, but those monthly injections were the best medicine I had. My bones are stronger than ever. The roller coaster started for me and my wife in 1998 as the figures began to change and the myeloma was now active. Yes, your partner is affected too. In some ways it is worse for them. Time and time again there is the hospital appointment, or a visit from an ambulance. Sometimes it's pneumonia – other times a more innocuous bug, all of which need treatment with antibiotics. Our partners have real stress but can do little about it, for it is generated by us. Moreover, they also know that

My job was to decorate the house while living in it, and keep fit with the gardening. I had had some chemotherapy in 2003, but the myeloma was back at the end of 2004. They gave me thalidomide. I continued painting, on pin cushion feet. The doctors thought it was trapped nerves, in both feet! Now we know it as peripheral neuropathy. In February 2005, the calf of my left leg went solid one night. I was told to report to the hospital the next day. I did not get home for a week, as they fought to clear the blood clot that had caused the leg problem and had now moved into the lung. I was on Warfarin for six months, until the doctors finally agreed the clot was caused by thalidomide. Now, when on treatment, I take an aspirin a day to prevent blood clots. My myeloma returned in June 2005, so I had a second transplant. Some people have friends and family visiting them every day in the isolation wards. I laid down my own


PATIENT

house rules – an exercise bike in the room and absolutely no visitors. I was out in 13 days, one more day than it took the first time around. The house was reasonably complete, which was just as well as the myeloma was back within the year. There were no existing treatments left, but Velcade had arrived, at least for the majority of the world. I fought the Primary Care Trust for three months, even trying to contact lawyers. A starting bill of £1000 convinced me that I could not beat the NHS or the government. A few days later, the consultant asked me to attend the Royal Marsden Hospital to check my suitability for a manufacturer's clinical study of three cycles of Velcade. The study, which ended in March 2007, was a success in so far as it rid me of 95% of the bad cells. Of course, Velcade was never going to be my saviour, and by August the readings were climbing. This time the Royal Marsden doctors initiated an attack by putting me on a manufacturer's Phase 1 trial of Revlimid plus cyclophosphamide and dexamethasone. If I could complete nine cycles then I would be entitled to free Revlimid for any subsequent treatment. There was a proviso. I had to start each cycle within four weeks of finishing the previous cycle. Regrettably, my marrow has taken a battering over the last 15 years, and it took a lot of time rebuilding my platelets after each cycle. By the fourth cycle, my myeloma had vanished from the microscope, and

EXPERIENCE

“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 I was in complete remission. Unfortunately, my luck ran out, and I collapsed one morning with an epileptic fit. I lost the Revlimid, but it had done its job, so I was happy. Soon after the start of the Revlimid trial, my local doctors suggested I become a patient representative. This was fabulous, for it showed they had faith that I would be around for a while. I represent myeloma patients throughout the Thames Valley Cancer Network, which stretches from Swindon and Milton Keynes, through Oxford and down to Reading. I have some work to do in these committees. I want doctors to always have access to new drugs for appropriate patients, with results fully recorded. The doctors get experience, the drugs are better understood, and NICE have the facts before they make a decision on drugs becoming routinely available.

It may help avoid the debacle that NICE had before finally approving Velcade. I no longer believe that having a project helps the body to beat myeloma, but it encourages a positive frame of mind, and makes it easier to keep fit. This in turn makes it easier to cope with all the side-effects. I have been extremely fortunate to be free of pain throughout my myeloma, and I can understand that those with continuous pain feel little inclination to enter clinical studies, with all the additional stresses involved. However, I was surprised to hear how hard it is for the doctors to find any patients willing to join clinical studies. Being at the leading edge of treatment is keeping me alive and well. My last treatment was a resounding success for me, although not for everyone. It is very important that doctors identify why these new treatments work for some but not others. There must be an answer. When it is found, patients will no longer run the gauntlet of several failed treatments, with all the side-effects they entail. Think of how much money that will save the NHS! So why are doctors left to scrounge equipment and resources as they attempt to solve this problem? My wife and I want to take this opportunity to say a sincere thank you to the staff at the Hammersmith Hospital, the John Radcliffe Hospital in Oxford and the Royal Marsden Hospital in Sutton. 17


AL

AMYLOIDOSIS

New services from Myeloma UK for AL amyloidosis By Eve Hallam, Myeloma Information Nurse Specialist, Myeloma UK AL amyloidosis and myeloma are both diseases of the plasma cells within the bone marrow and are similar in many ways. About 10 – 15% of patients who have been diagnosed with myeloma have co-existing AL amyloidosis, or will go on to develop it. As a disease related to myeloma, Myeloma UK is committed to providing information and support to people affected by AL amyloidosis. In the course of 2009, Myeloma UK will launch a range of services specific to the disease. Currently Myeloma UK is...

Increasing the range of its printed AL amyloidosis information This includes: • A new information pack for newly diagnosed patients • Two updated Essential Guides, AL amyloidosis – Your Essential Guide, and Living with AL amyloidosis • New Infoguides on the current treatment options for AL amyloidosis • A new range of Infosheets All of the publications are specifically written for AL amyloidosis patients, their family members and friends.

Helping to set up AL amyloidosis specific support groups in the UK. Anyone interested in starting up a support group for AL amyloidosis patients, their families and carers can contact the Infoline on 0800 980 3332.

18

Funding a study into the use of chemotherapy in AL amyloidosis. This study, being undertaken by researchers at the National Expanding the amount of dedicated Amyloidosis Centre in London, aims AL amyloidosis content in Myeloma to develop a network of healthcare Matters. professionals to promote excellence in the treatment and research of Establishing an annual Patient AL amyloidosis. The study includes and Family AL amyloidosis Infoday the funding of an Amyloidosis held in London. This year the AL amyloidosis Infoday will be held on Research Nurse Specialist for at least Friday 29 May. See below for details. two years. See page 22 for details.

Myeloma UK can provide help getting started and raising awareness of the group.

Adding a new section to the Myeloma UK website dedicated to AL amyloidosis information, including a subject-specific discussion forum.

Stepping up the campaign for fair and equal access to treatment and care for all myeloma and AL amyloidosis patients.


FUNDRAISING IN ACTION Firefighters shave 'for Pete's sake'

29 firefighters in Grimsby have shaved their heads to raise funds and awareness of myeloma for their colleague, Pete Oxley. Pete was diagnosed with myeloma in June 2008 and has recently undergone a stem cell transplant at Castle Hill Hospital, Hull. As well as shaving their heads, as a mark of support for Pete's chemotherapy-induced hair loss, some of the firefighters will run the Great North Run later on in the year and two of them, Steve Critten and Andy Dixon, ran the Lincolnshire 10K run on 29 March dressed in full uniform, including breathing apparatus. Steve said: "We are doing the

Great North Run in September but thought that if we could find something 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 firefighters have brought in an impressive £7,366. Talking about his colleague's efforts, Pete said, "I am over the moon with what the lads are doing, and it is such a worthwhile cause." Thank you from Myeloma UK to everyone involved in fundraising on Pete’s behalf.

Auctioned cow boosts coffee morning takings At the end of last year, Carole Johnston and her mother Phyllis Steel organised a coffee and Christmas shopping morning at Thirsk Auction Mart raising over £3,500 for Myeloma UK.

As Phyllis explained, "I couldn't believe it. I've no idea who it was, but would like to thank him very much. It was so generous and a complete surprise."Phyllis and Carole's continued support is much appreciated.

A heifer cow, donated by a local farmer to raise funds for the event, Congratulations and thank you was auctioned the previous day from everyone at Myeloma UK for boosting the amount raised by £680. raising such an impressive sum.

Dan Biggane's 'Music4Myeloma' update

A few issues ago (Vol 7, Iss 6), we reported that Myeloma UK fundraiser Dan Biggane was holding a series of musical events around the South West to raise money for Myeloma UK in memory of his mother, Shirley Lea. Since then Dan has held 16 concerts all over the region, covering every conceivable musical genre and has now smashed the £10,000 mark in his fundraising efforts. From Jazz at St James' Wine Vaults in Bath to Summer Soul at the Merlin Theatre and a Punk Party at the Cheese and Grain pub in Frome, he has pulled out all the stops to raise as much money as possible for Myeloma UK. Dan raised the money mostly through ticket sales but also through generous donations from Purr Promotions, the Bayman Charitable Trust and the Operation and Kilmerdon's Reel People Film Society. Speaking about his achievements, Dan said: "It has been a very humbling process and I'm grateful to everyone who has helped to arrange a show, performed or attended – all this wouldn't have been achieved if it wasn't for you." Thanks to Dan for his incredible efforts.

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FUNDRAISING IN ACTION Myeloma UK teams up with the Gilded Balloon to present myeloma comedy events Myeloma UK has teamed up with entertainment agency the Gilded Balloon to stage our ‘Stand up for myeloma’ comedy events to raise money and awareness. When Myeloma UK started working on their ideas for the events last year they had a meeting with Artistic Director, Karen Koren, from the Gilded Balloon to put forward their plans. On the strength of the pitch, the Gilded Balloon agreed to partner with Myeloma UK and produce the events and source comedians for the nights free of charge. Speaking about their involvement, Karen said, "We were impressed with the dedication and enthusiasm

of the team at Myeloma UK, and, with it being a locally-based charity, we wanted to do what we could to support them. We hope the events will help to raise the profile of this little known cancer." Myeloma UK Chief Executive, Eric Low, said, "The Gilded Balloon has received such high acclaim within entertainment and comedy circles in the UK and we feel very privileged to partner with them. Their involvement will ensure our comedy nights will be a resounding success."

Myeloma UK patron, Maureen Lipman, also expressed her delight about the partnership: "Myeloma is a difficult and challenging cancer and unfortunately there is not much time for laughter amongst all the worry and stress of a diagnosis – as I found when my husband Jack was going through it. The 'Stand up for myeloma' events will provide light relief and a bit of laughter, which are so important. I hope that patients, family members, and all their friends come along to support one of the events during the year."

See page 23 for details and venues

Join Team Myeloma UK on 31 May for the 2009 Albert Bartlett Edinburgh Marathon nutritional expert Jen Foley runs through what to eat to get runners into the best possible shape ahead of the run. Watch both of these videos on Myeloma TV at www.myelomatv.org.uk.

Myeloma UK is proud to be an official charity of the 2009 Albert Bartlett Edinburgh Marathon for the second year running. If you are not up to running it yourself, why not persuade 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 runners taking part, all wearing our bright orange running vests, which will be impossible to miss. We will have a number of cheering stations through the course including a special dedicated Myeloma UK mile, between the 14 – 15 mile mark, which will be lined with Myeloma UK supporters cheering our runners on.

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All Myeloma UK runners will have access to a wealth of pre-race information and support to help with their training plans. It will include a video of Mel Edwards, former Scottish international marathon and cross country runner, providing tips for both relay and full marathon runners. In addition, Myeloma UK in-house

We have set our fundraising target for the Edinburgh Marathon at an ambitious £75,000. Reaching a target of this size will allow Myeloma UK to fund up to two research grants in 2009. If you, or anyone you know is interested in running for Myeloma UK, please contact: Lorna Cunningham  0131 557 3332  lorna@myeloma.org.uk


MYELOMA

UK

NEWS

My working day Eve Hallam, Myeloma Information Nurse Specialist, Myeloma UK In the Infoline office, the phone is king. When it rings, it takes precedence over everything else. My colleague Ellen, also a Myeloma Information Nurse Specialist, takes calls in the morning, and I take over in the afternoon. However, we back each other up throughout the day taking calls on the second line. Sometimes the phone just doesn't stop ringing! A recent Monday was a good example of this. The phone doesn't stop. Across the country the Myeloma UK annual mailing is landing on the doorsteps of our service users and supporters. This is going to be a busy day. On the Infoline we take lots of orders for our patient information, sign up new subscribers to Myeloma Matters, and talk to patients and family members about a variety of topics ranging from symptoms and side-effects to where to get the best travel insurance. Although most of the calls to the Infoline are about myeloma, an

increasing number are about AL amyloidosis. This is my special area of interest, and today I talked with a patient about going to the National Amyloidosis Centre (NAC) in London for tests, what that might involve, and the practicalities of getting there. Later, I call one of the Research Nurses at the NAC for an update on the AL amyloidosis study that Myeloma UK is funding. While we're fielding calls a number of emails arrive in our askthenurse@myeloma.org.uk address mailbox. There are questions on peripheral neuropathy, complications of myeloma, how to get a second opinion, and how to find out about local Myeloma Support Groups. Ellen and I split the emails and begin drafting replies. Later in the afternoon I take a long call from a patient who has a multitude of questions. We don't have a time limit on calls so I'm able to give the caller as long as she needs. Towards the end of the call I outline the points we have talked

about and give her a few practical ideas for going forward. This is a part of the job I find most rewarding – being able to give as much time to patients and family members as they need, something that is not always possible on the ward or in the clinic. Between calls I work on copy for Myeloma Matters (this article in fact!), finish drafting some of the new AL amyloidosis patient information, and work on updating the Revlimid Infoguide with the new draft NICE guidance in mind. At the end of the day I turn the answering machine on, ready to do it all again tomorrow.

Myeloma Infoline 0800 980 3332

Take part in National Myeloma Week 21 – 28 June

Get involved... To order your National Myeloma Week pack:  0131 557 3332  nmw@myeloma.org.uk www.myeloma.org.uk/nmw09

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MYELOMA

UK

NEWS

Myeloma UK awards two research grants 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.

Title of research study: Information and self management of oral chemotherapy for myeloma Study lead: Dr Anne Arber, University of Surrey Grant award: £30,000 Start date: April 2009 Duration of grant: 18 months Background to this research Oral treatment is often now prescribed as initial therapy for patients with newly diagnosed myeloma. This has resulted in an increasing number of patients managing their own treatment regimens at home. However, oral treatment approaches have implications for both patients and the healthcare professional in charge of their care.

Research overview The aim of this 18 month study is to understand how healthcare professionals, in particular clinical nurse specialists (CNSs), communicate and deliver information to myeloma patients undergoing their first course of oral chemotherapy, and to explore how confident patients feel in self-managing oral chemotherapy at home.

Patients need to understand how to comply with their treatment regime and when to report problems and complications such as side-effects.

Data will be collected from patients through a survey that will ascertain their knowledge and confidence in the selfmanagement of oral chemotherapy. Data will also be collected through interviews with healthcare professionals and through observations of information-giving sessions with patients. The study will also have a focus on family members and

Information provision to patients is central to effective self-management of oral treatment in myeloma. How this information is provided – and in what form – by the healthcare professional is the focus of this study.

carers who may be responsible for coordinating a patient's treatment regime. The value of this research The study will provide valuable information about how CNSs and other healthcare professionals communicate and provide information to patients, and provide feedback on the tools they use to do this. Results from this research will also highlight any problematic areas related to patient understanding and safe self-management of chemotherapy, and will produce evidence to inform the development of good practice guidelines for information-giving practices.

Title of research study: A study of AL amyloidosis chemotherapy using intensive shared-care monitoring Study lead: Dr Ashutosh Wechalekar, National Amyloidosis Centre Grant award: £70,000 Start date: May 2009 Duration of grant: 2 years Background to this research AL amyloidosis is a rare and serious plasma cell disease, closely related to myeloma. All available treatments are based on those used in myeloma but side-effects and complications are much more common and severe in AL amyloidosis.

responses, tolerability and side-effects to all types of chemotherapy treatment being given to AL amyloidosis patients who have been assessed at the National Amyloidosis Centre (NAC). The study will also assess patients' quality of life before, during and after chemotherapy.

This research study will for the first time closely monitor patients' chemotherapy treatment and collect extensive data over a three year period on responses and side-effects in a broad AL amyloidosis patient population.

The information will be acquired by a specialist nurse at the NAC, substantially through the use of questionnaires and through frequent telephone discussion with doctors and patients at treating hospitals around the country. This information will be fed back to the doctors at these hospitals around the UK essentially creating a new national amyloidosis network. Myeloma UK has agreed to fund the first two years of this study.

Research overview Hoping to recruit over 500 patients over three years, this will be the largest ever study of its kind in AL amyloidosis. This study aims to intensively monitor

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The value of this research Through the development of a new and novel model for monitoring treatment responses in AL amyloidosis, the top line value of this research is the potential for improvement to patient care. By establishing a national amyloidosis network, healthcare professionals will benefit from shared information about the best way to treat patients with this serious disease and patients across the UK should benefit from more informed treatment decisions. The results from the study will help to inform changes to current clinical practice and complements the ongoing efforts of Myeloma UK to improve the standards of treatment and care for patients with AL amyloidosis.


FORTHCOMING

Rat Race Urban Adventure

EVENTS

Patient and Family Myeloma Infodays

Join Team Myeloma UK to take part in this unique team event.

Meet others with myeloma, share experiences, learn from experts

• Edinburgh 18 / 19 July • London 26 / 27 September

• Belfast • Liverpool • Sheffield

To register your place contact Lorna  0131 557 3332  lorna@myeloma.org.uk

Stand up for myeloma charity comedy nights

Saturday 16 May Saturday 20 June Saturday 5 September

To register your place contact Kirsty  0131 557 3332  kirsty@myeloma.org.uk or register online www.myeloma.org.uk

Join a sponsored walk with a difference –

Retail Therapy Walk for Research

• Manchester Comedy Store Sunday 24 May

• Edinburgh The Jam House Sunday 21 June

• London Comedy Store Monday 5 October Tickets £15  0131 557 3332 buy online www.myeloma.org.uk/comedy

• London • Bristol

Sunday 10 May Saturday 19 September

For details contact Sara  0131 557 3332  sara@myeloma.org.uk www.myeloma.org.uk/rtw

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Myeloma Matters editorial and production team Medical Editor: Dr Gordon Cook Director, Blood and Marrow Transplantation Programme St James’s University Hospital, Leeds Editor: Jude Watson Editorial support: Sara Morgan Design: Linda Scott-McFarlane Myeloma UK President: Prof Gareth Morgan Chairman: Judy Dewinter Chief Executive: Eric Low Patron: Maureen Lipman CBE Board 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 Matters is not intended to take the place of medical care or the advice of a doctor. Your doctor should always be consulted regarding diagnosis and treatment. No part of this newsletter may be reproduced in any way without prior permission from Myeloma UK Myeloma UK Broughton House, 31 Dunedin Street, Edinburgh EH7 4JG Tel: 0131 557 3332 Fax: 0131 557 9785 Email: myelomauk@myeloma.org.uk Myeloma Infoline: 0800 980 3332 www.myeloma.org.uk Charity No. SC 026116 National Myeloma Week 21 – 28 June

Myeloma Matters volume 8 issue 3  

Myeloma UK