Myeloma Matters by Andy McKechnie

MyelomaMatters

• Newsround Pesticides and MGUS

• Special feature The Price of Life Exclusive Interviews

• Medical Matters Autologous stem cell transplants

• Living with myeloma Sexuality, Intimacy and Communication Volume 8 Issue 5

www.myeloma.org.uk

LETTERS

Editor’s letter Dear Readers Welcome to this issue of Myeloma Matters. We're pleased to include a Special Feature on The Price of Life documentary that aired on BBC 2 in June. Following the documentary Myeloma UK received a lot of feedback and it was clear that the film generated a lot of debate. For this reason we decided to follow-up on the most hotly-debated issues by interviewing a panel of four specialists, three of whom participated in the documentary. We are grateful to Dr Hall and Dr Lasebai from Royal Bournemouth Hospital for their co-authored article about autologous stem cell transplants and to Alasdair Mackay, a patient from Edinburgh, for sharing his experience of receiving a second autologous transplant with the help of a new drug called plerixafor. I hope you also enjoy the enclosed National Myeloma Week 2009 supplement which reports the success of the week – both in terms of raising funds and awareness and the successful launch of our GP Pledge campaign. The efforts of everyone across the country helped to make this year's week the success it was. Thanks to all who got involved. If at any time you have any questions, comments, or would like more information on our current work and future plans, please get in touch. In the meantime, I hope you enjoy this issue and thank you for your continued support. With best wishes

Jude Watson Editor

CONTENTS

Contents 3

Newsround

Myelomascope

Special Feature

Ask the nurse

Medical matters

Living with myeloma

AL amyloidosis

Patient experience

Fundraising in action

Myeloma UK news

Letters I tuned into 'The Price of Life' documentary in June and was left feeling very angry. It was made clear by one NHS Executive that the money used to buy Revlimid could be used much more wisely to benefit more people – not "just those" with a terminal illness. My husband has just been granted Revlimid. He has worked all his life and never claimed any benefits. The NHS needs a complete shake up. I would like to take this opportunity to thank Myeloma UK for their continued hard work in fighting for the very best for myeloma patients. Anon TM

The magazine is great, but I have to say that I am personally disappointed. I had hoped that Myeloma Matters may have had just a paragraph in each month for those of us diagnosed with MGUS, to help us with worry if nothing else. Is there any chance we could have more information, please? With worrying symptoms myself, it would be helpful if it didn't feel as if I didn't feel as if I'm the only person on the planet dealing with this! Pam Canter Your article in the last issue of Myeloma Matters on allogeneic transplantation was very interesting reading. My doctor has suggested that this may be a possibility for me in the future and reading Kevin Brownless' experience reassured me that, although this is high risk, the chances of a successful outcome would be well worth it. Mrs Martin, Cheshire

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

NEWSROUND

European Symposium on Myeloma: Velcade – 'No Policy without Patients' Caelyx rejected by the SMC TM

The Scottish Medicines Consortium (SMC) has not recommended Velcade in combination with Caelyx (a chemotherapy drug) for relapsing myeloma patients in Scotland. This decision means that patients in Scotland still do not have access to a novel drug when they first relapse. TM

A report has been published recently into the findings of the European Symposium: No Policy without Patients, which was held in the Netherlands on 30 October 2008. The aim of the symposium was to evaluate the role of European myeloma patient organisations. The provision of information was highlighted as one of the most important roles of myeloma patient organisations. Through providing appropriate and accessible information, about both medical and psycho-social issues, patient organisations are able to complement the information that patients receive from healthcare professionals, and to fill any gaps. Myeloma patient organisations have also been highly successful in providing a voice for myeloma patients at a European policy level, through collaboration in umbrella groups such as the European Myeloma Platform (EMP) and Myeloma Euronet.

good example of myeloma patient organisations working with regulatory bodies to improve access to new drugs. The symposium marked the 25th anniversary of the Dutch Multiple Myeloma and Waldenstroms Macroglobulinemia patient organisation, which organised the event together with the EMP. It was followed on the 31 October by a roundtable discussion in which the representatives of patient organisations discussed the conclusions of the symposium and directions for future activity. Key areas identified for future focus included increasing patient recruitment to clinical studies, continuing to engage with regulatory bodies such as the EMEA and tackling inequalities in access to treatment.

A clear message from the symposium was that decisionmakers throughout Europe are increasingly recognising the value of patient organisation involvement The eventual licensing of in policy-making and the role of Thalidomide Pharmion™ by the patient organisations in expanding European Medicines Agency (EMEA) access to new drugs and improving following many years of discussion standards of care for myeloma patients. with patient representatives is a

In the rest of the UK, Velcade is routinely available to myeloma patients at first relapse. In Scotland, however, Velcade is only available at second relapse. Revlimid was also rejected by the SMC in 2008. The SMC is soon to assess a new submission for the use of Velcade monotherapy in myeloma patients, at first relapse. The manufacturer is expected to offer the patient access scheme available in the rest of the UK as part of its submission. Myeloma UK has submitted evidence to the Velcade monotherapy appraisal and the SMC is expected to make its decision later in 2009. “This is disappointing. Unless the SMC approves a novel drug for first relapse soon, we will begin to see a clear survival benefit for myeloma patients elsewhere in the UK” said Eric Low, Chief Executive of Myeloma UK. “The SMC has not come under the same political or public pressure as NICE and this has to change. The SMC appears to be falling behind and has a lot of catching up to do just to keep pace with developments elsewhere in the UK.”

NEWSROUND

Pesticides double the risk of MGUS the people involved in the study was 60 years old. No MGUS cases were observed before 50 years of age; however the prevalence of MGUS in those above 50 years was 6.8%, almost double the normal rate. The researchers also evaluated the potential association between MGUS and 50 specific types of pesticide.

A US agricultural health study has found that exposure to certain pesticides can almost double a person's risk of developing MGUS (monoclonal gammopathy of undetermined significance), a benign condition that can progress to myeloma. The study looked at 678 individuals, who all lived in Iowa or North Carolina and had a licence to apply restricted use pesticides. The average age of

Exposure to Dieldrin (an insecticide), Carbon Tetrachloride/ Carbon Disulfide (a fumigant mixture) and Chlorothalonil (a fungicide) were found to cause the most significant increase in the likelihood of a person developing MGUS. The lead author of the study, Ola Landgren from the National Cancer Institute (NCI) in the US, stated that this study was "the first to show an association between pesticide exposure and an excess prevalence of MGUS".

The study opens up possible avenues for further research and if replicated on a larger basis, researchers may be able to focus on gaining a better understanding of the molecular basis of MGUS and myeloma. Ola Landgren further stated that "ultimately, this will result in the identification of novel targets involved in the progression from MGUS to myeloma and the development of a targeted response".

Government responds to the Health Select Committee report on access to NHS drugs The Government has published its response to the recent Health Select Committee inquiry into 'top-up fees'. The inquiry examined the recent package of reforms introduced by the Government to improve access to some drugs on the NHS. In response to the Government's reforms regarding top-ups (copayments), the Committee had expressed concerns about the difficulty and potential inequity in implementing these reforms. The Committee expressed particular concern about the feasibility of ensuring the 'separateness' of NHS care and privately paid for care. In its response, the Government highlighted that in order to uphold 4

NHS values it was a priority of the Government to ensure that separation was achieved and that, with appropriate safeguards, this would be and effectively. Other concerns raised by the Committee related to the framework developed for NICE to consider patient access schemes, which the Committee saw as creating an unnecessary burden on the NHS. In its response, the Government argued that this had not been the case and that the benefits of the schemes could be seen in the appraisal of drugs such as Revlimid, in which drugs had been approved that might not have otherwise been.

The Committee's final point was that the NHS exceptional funding process should become more standardised and transparent. The Government made the case that, due to the publication of the recent NHS constitution and guidance to PCTs on exceptional funding cases, it expected to see a significant improvement in PCT funding processes, including in transparency and consistency. Myeloma UK is less certain and has produced a report outlining its experience of the exceptional funding system in which it asks the Government to commit to a more meaningful review of the system.

RESEARCH

Myelomascope Perifosine-Velcade combination shows promise in myeloma

Vesselplasty shows promise for vertebral collapse in myeloma

Patients with relapsed / refractory myeloma have responded well to a drug called perifosine (KRX-0401) in combination with Velcade and / or dexamethasone. The combination is being tested in an ongoing Phase I / II study by Keryx Biopharmaceuticals, Inc.

A procedure called vesselplasty is being touted as a new, safe, minimally invasive way to treat vertebral compression fractures like those experienced in myeloma.

Perifosine belongs to a class of oral drugs called alkylphospholipids, which control a protein in the body associated with myeloma cell death, survival, growth and differentiation. Perifosine seems to be particularly effective in patients who are resistant to conventional treatment.

worldwide. We … are encouraged to see perifosine move into this final stage of testing.” Positive data on carfilzomib for myeloma

Carfilzomib is the second in a new class of highly selective drugs that can target and kill myeloma cells with Keryx has presented interim data from minimal effects on other healthy cells. Proteasome inhibitors, the same class its study of 84 myeloma patients, of whom 100% had previously received of drug that Velcade belongs to, block Velcade, 99% had previously received the action of proteins that are responsible for cell regulation and are Revlimid and / or Thalidomide effective in killing myeloma cells. Pharmion™, 98% had previously received dexamethasone and 57% Carfilzomib is being tested in had had a prior stem cell transplant. myeloma by the company Proteolix in numerous clinical studies in the US. Results thus far show that following treatment with perifosine: In one Phase II study of 39 patients • 85% of patients achieved stable who had received prior treatment, disease or better 18% achieved an overall response, • No unexpected side-effects 26% achieved a partial response and were noted 41% maintained stable disease. The • Toxicities were manageable with response to the drug has been well supportive care and / or dose sustained, lasting about eight months reductions, as required in most patients. These positive results have recently led to the approval of a Phase III study Carfilzomib also shows positive results in earlier phase studies in protocol for perifosine involving 400 combination with Revlimid and patients. The study will be led by dexamethasone. Dr Richardson of the Dana-Farber Cancer Institute, Boston. Results of these ongoing studies were recently presented at the 2009 Dr Anderson from the Dana-Farber said, "Perifosine holds great promise Annual Meeting of the American Society of Clinical Oncology (ASCO). for multiple myeloma patients

A small preliminary Spanish study of 29 patients, including three with myeloma, showed vesselplasty has a lower complication risk and is associated with fewer side-effects than balloon kyphoplasty (BKP), an existing treatment used in some myeloma patients. The study found that vesselplasty reduced pain in all patients, improved mobility in 93% and reduced the need for pain control medications in 62%. Importantly, the procedure did not cause any symptomatic complications and reported only a 2.7% rate of cement leakage. With BKP, 5.1% of patients experience complications and 8.6 – 33% report leakage following the procedure. Vesselplasty differs from BKP in that an inflatable vessel, rather than a balloon, is inserted into the collapsed vertebra; this vessel is inflated, filled with cement and left in position – restoring the strength and shape of the vertebrae whilst minimising the risk of leakage. In BKP, a small balloon is inserted into the vertebrae and inflated to create a space. The balloon is then deflated, removed and cement is injected. The results for vesselplasty are preliminary. Further studies are required – in a myeloma specific cohort of patients – to determine the safety and effectiveness of the procedure in myeloma. 5

SPECIAL

FEATURE

The Price of Life: Exclusive Interviews

During 2008 and 2009 Adam Wishart, an award-winning documentary maker, filmed a BBC documentary on Revlimid as it made its way through the National Institute for Health and Clinical Excellence (NICE) appraisal process. The documentary The Price of Life was aired in June this year. The documentary looked at how NICE assesses the value of new drugs and how its decisions impact upon patients, the local NHS funding organisations, and the drug companies behind the new drugs. It particularly captured the impact that myeloma and the NICE appraisal had on patients as it followed three myeloma patients who were anxiously awaiting a positive decision on the drug.

The documentary generated much debate and provoked many opinions and feelings from the myeloma community and beyond. As way of a follow-up, Myeloma UK has invited a panel of four to explore some of the most controversial issues that were raised. The panel are Adam Wishart (The Price of Life documentary maker), Sophia Christie (Chief Executive of Birmingham East and North PCT), Dr Judith Behrens (a Consultant Haematologist) and Eric Low (Myeloma UK Chief Executive). Their pictures and short biographies are featured throughout this five-page special feature.

Adam Wishart is a writer and documentary maker. He writes occasionally for The Times, New Scientist, Guardian, and Independent. His book One in Three interweaves two powerful stories: that of Adam and his father, and of the 200-year search for a cure for cancer. Adam's interest in whether the NHS â&#x20AC;&#x201C; with a finite budget â&#x20AC;&#x201C; can afford to offer patients every drug on the market sparked his interest in the NICE appraisal of Revlimid. As the person who had the vision for the documentary we considered Adam an indispensible member of the panel.

SPECIAL

FEATURE

Q. At one point in the documentary an impression was given that Revlimid is a drug used at the very end-of-life and may even do more harm than good to myeloma patients. Patients and doctors with experience of Revlimid have told us they feel this to be an inaccurate reflection of how the drug is used. How would you respond to this? Adam Wishart: Clearly, Revlimid is a good drug. It does give life extension, though as with all drugs there are side-effects. When making the documentary, it wasn't my intention to imply that Revlimid does more harm than good, and personally I don't think the film gives this impression. However, the NICE appraisal that I followed only considered whether or not the NHS could afford the drug for patients who have had two or more other treatments. Inevitably, that means that in the UK at the present time, it will be used nearer the end-of-life.

Sophia Christie: The documentary was designed to create a debate about the difficult decisions that have to be taken with regards the use of healthcare resources. Revlimid was used as the example to illustrate the debates and dilemmas faced. Revlimid is a drug used to treat myeloma and is one of a class of cancer drugs for rarer conditions, many of which are used at the end-of-life to extend life. In many cases this end-of-life period is unpredictable and can mean that some people being prescribed a particular drug may live for far longer and therefore would not see themselves as receiving end of life or palliative care treatment. The reality is that many of the rarer cancer drugs are used solely for the purpose of extending life during the end-of-life phase of care and have been identified on that basis in the Richards Review, which set out a different approach for the commissioning of drugs for patients who were deemed to be in that phase of care. Clearly it is a matter of opinion whether Revlimid is seen as being in this category and individuals who are in receipt of Revlimid may have a very different view.

Judith Behrens: To conclude that Revlimid is only of limited benefit to patients at the very end of their lives is a regrettable misinterpretation of the evidence. The recent large clinical studies showed that patients receiving both Revlimid and dexamethasone lived on average for a very impressive 35 months after relapse. Clinicians who have used Revlimid over the last 2 â&#x20AC;&#x201C; 3 years are in no doubt that these benefits are a reality. We also expect that with longer follow up of the studies the currently understood benefits of Revlimid will prove to be an underestimate. This powerful new drug is easy for patients to take and is very well tolerated, ensuring a good quality of life. Eric Low: On the whole the documentary was excellent and balanced. Unfortunately, certain aspects of it positioned Revlimid as an end-of-life drug and gave the impression that doctors are spending thousands of pounds on cancer patients who are dying. The term end-of-life in the context of how NICE can now appraise dugs for rarer diseases is an unfortunate choice of words and has caused much confusion. To NICE an end-of-life drug is one that offers a substantial survival benefit to patients with a rare and severe disease. Such a drug can be considered under a more flexible NICE process. This is what happened with Revlimid. Unfortunately, this has led some to assume that Revlimid is a 'last ditch' drug for dying patients. For example, in the documentary, the NHS commissioner suggested that Revlimid might do patients more harm than good and that palliative care may be more appropriate. This was not only a worrying misunderstanding of what palliative care is but more importantly of how Revlimid is used to treat myeloma, myeloma as a disease and what NICE means by an end-of-life drug.

Sophia Christie is the Chief Executive of Birmingham East and North Primary Care Trust. We asked Sophia to join the interview panel following her direct involvement in The Price of Life documentary. In her role as a local health commissioner, Sophia was asked to comment on the impact of NICE approving Revlimid for use on the NHS on her PCT. Following her through the streets of Birmingham, the documentary heard Sophia's views on the difficulties of managing different health needs in her local area and why she felt disappointed with NICE's decision to approve Revlimid.

SPECIAL

FEATURE

Q. The documentary has sparked a debate about 'health trade-offs'. The film showed a local funding dilemma in which a choice had to be made either to tackle infant mortality rates and heart disease or to fund cancer drugs. In your view are these trade-offs necessary and desirable? AW: These trade-offs are inevitable. Wouldn't it be lovely to live in a world where there was an infinite amount of money that we could spend on health resources? But that is not the case. Even if we were to spend large amounts of our national wealth on healthcare, then the cost of health would rise and there would be side-effects in other parts of the economy.

the NHS pays only the keenest possible price for the drugs.

So these trade-offs exist, and will continue to exist. Every day politicians and health managers are making these choices. My purpose in making the documentary was really to try and have an open and honest debate about the existence of these trade-offs, and for us as a society to begin to debate about where we think the priorities should be.

The suggestion that it is justifiable to not spend money on Revlimid because the people on whom this money will be spent are old and frail is very disturbing. Not only is it inaccurate because about half of people who develop myeloma are under 65 and still economically active but is distastefully ageist.

SC: In an NHS where resource is not infinite trade-offs are always going to be necessary. Whether trade-offs are desirable or not is another matter. As a Commissioner of Healthcare for a population of 440,000, I would want to commission the best possible care for all residents that we serve and in a world where resources were not constrained then trade-offs wouldn't be required. However, in an environment where resources are limited, the reality is that there will always be trade-offs which means making difficult decisions which creates conflicts between commissioning for individuals and commissioning for populations. The PCT is responsible for making wise investments and therefore will always have to assess the benefits of one intervention against another taking account of the population coverage, the efficacy of the intervention and the costs involved. JB: It is estimated that less than 1% of the total NHS budget of ÂŁ110 billion is spent on cancer drugs. In my view the debate should not be about spending less on cancer drugs to fund other worthy initiatives such as improving infant mortality and male life expectancy but rather about getting better value for money from the remaining 99% and ensuring that

It is too easy to pick off a ring-fenced and highly visible budget such as the drugs budget but much harder to make systems more efficient, and change ways of working so that there is better delivery of evidencebased practice throughout the service.

The implication that elderly people are somehow less deserving of treatment is ethically dubious and a personal value judgment which should be open to challenge and wide debate.

EL: For me this was one of the most disappointing things about the documentary. We heard only one opinion from one individual and in my opinion this bore little reflection to the more balanced and sophisticated opinions of the majority of people involved in this very difficult debate. We all know there are many demands on local NHS resources, especially as PCTs are not given additional funding to provide NICE-approved drugs. However, this talk of necessary 'trade-offs' between infants and the elderly, or between disease prevention and cancer drugs, is unhelpful. The fact that such a trade-off exists speaks volumes about how health policy in the UK is failing and that we make poor use of existing and new health investment. All patients deserve optimal care whatever their age, whatever their diagnosis and wherever they live â&#x20AC;&#x201C; but not at any cost. The price of many new drugs seems unnecessarily expensive. The problem is that we can only say yes or no in the trade-off debate; there is no negotiation. This is nothing short of incredible.

SPECIAL

FEATURE

Q. The NHS cannot negotiate with the pharmaceutical industry on the price of drugs. Do you think being able to negotiate on price would help resolve current NHS funding issues? What else could be done? AW: The drugs budget of the NHS makes up about one tenth of the total NHS budget. Only a fraction of this is spent on patented high-cost drugs. So saving some money in this sector would certainly be no panacea.

as there are countries prepared to pay full prices for drugs the UK's room to negotiate will be constrained. It is pleasing to learn that NICE are currently integrating the new pricing initiatives into their technology appraisal process.

However, every area of the NHS should be subject to rigorous checks to make sure that we are getting value for money. So it is important that the people who buy high-cost drugs and devices for us should be allowed to be in a more robust purchasing position.

The introduction of schemes to drive harder bargains with drug companies will not solve all the NHS's financial woes at one stroke but it would be a significant contribution. The mechanisms to ensure this can be done should be introduced without delay.

SC: It does seem strange that a far wider group is not involved in price negotiation with the pharmaceutical industry. There are advantages and disadvantages to this. In the case of Revlimid it would have been useful because the present costs of Revlimid do seem disproportionate to the costs incurred by the company for research and development.

EL: We cannot deny a commercial company the ability to make a profit. We operate in a sellers' market when it comes to drugs for the NHS. The drug industry appears able to set its prices at the level which it thinks the market can bear, rather than what is a fair price, and large profits are often made.

Perhaps more open debates between the industry and the NHS on the cost of research and agreements on acceptable profit margins may be helpful.

With no one negotiating on price on behalf of the NHS, we cannot actually say that weâ&#x20AC;&#x2122;re doing the best by the tax payer.

JB: It is surely self-evident that the NHS must use its considerable purchasing power to get the best possible prices from the pharmaceutical companies. The introduction during the appraisal process of schemes which reduced the price of Revlimid and Velcade clearly demonstrates that it is possible to negotiate better prices with the companies.

Solutions need to be found to allow the NHS pot of money to stretch further. We need cheaper drugs but the NHS needs to take responsibility by negotiating on price.

There will be limits to how far prices can be driven down because the UK operates in a world market and as long

This, along with better disinvestment in the NHS both within and outside the drugs budget, would help spare some resources. PCTs might then be under less pressure to trade-off reducing infant mortality and paying for myeloma drugs.

Dr Judith Behrens is a Consultant Haematologist and has worked at St Helier Hospital in London since 1981, over 20 years as Head of Department. Judith has a particular interest in myeloma and renal disease, becoming co-chief investigator of the national MERIT clinical study and author of a number of papers in that field. She has been Secretary of the UK Myeloma Forum since 2003 and is a scientific advisor for Myeloma UK. Myeloma UK asked Dr Behrens to be part of our panel because she is an experienced myeloma clinician who is very familiar with the issues and challenges within the NHS. Furthermore, disappointingly, the documentary did not show the views of a doctor working with myeloma patients, a point which we wanted to rectify.

SPECIAL

FEATURE

Q. The cost-effectiveness threshold for rarer and more severe diseases has recently been relaxed, which was part of the reason why Revlimid was eventually approved by NICE. Should rarer and more severe diseases be prioritised in such a way? AW: I believe that the way NICE was established enshrined a level of equity. If a drug cost more than ÂŁ30,000 to extend a life by a year then it was deemed that the NHS could not afford it. This meant that a year of life was valued in the same way for everybody, be they a person in terminal disease or someone with a curable illness. Whilst it may seem reasonable that the last months or years of a person's life are more valuable, I think this contradicts the pre-existing equity. And what it will mean is that high-cost cancer drugs, for example, are privileged above all other services in the NHS, including those services for children. The inevitable result of this will be that drug prices will continue to rise. None of that will be good for the health of our nation. SC: No, the focus on cancer interventions potentially has a particular negative impact in diverting investment away form those interventions which may have greatest impact in tackling health inequalities. Premature mortality is driven by high infant mortality, typically in the most deprived populations, and early deaths typically from cardio-vascular disease again in more deprived populations.

companies it is not entirely without foundation and this should be recognised by society's willingness to pay more. There is a considerable body of evidence showing that most people, imagining they have a disease which they will soon die from, recognise they would fight hard to get treatment which would save them. It follows that society should reflect this in its willingness to pay to achieve this vital goal. Otherwise, it would be accepting that it was fair to allow some people to die early because through no fault of their own they have contracted a rare disease. EL: That NICE should be given some flexibility to make pragmatic decisions in certain settings makes sense, albeit within a sensible framework. The NICE process has for a long time favoured efficiency over severity, rarity, and unmet clinical need. This, until the recent reforms, has been at odds with the evidence from society as a whole which places extra values on these other factors. The introduction of patient access schemes which help reduce the cost of treatment to the NHS is also a reasonable step forward.

Despite the media face of cancer, it is a disease where prevalence increases with age, and thus those who have avoided early death from CVD, typically the wealthier. Mandated expenditure on cancer drugs particularly those defined as palliative may actively increase health inequalities.

However these developments, although welcomed, will not themselves solve the major challenges we are facing in being able to afford more on the NHS. The problem of how we ensure that innovative, effective drugs are developed quickly, appropriately valued and made available to patients in the NHS is a multi-faceted one that needs to be dealt with on a much more comprehensive scale.

JB: Drug companies make the argument that greater financial risks are taken in developing drugs for rare diseases than for more common cancers where financial returns are likely to be greater. Whilst this argument may well be overplayed by drug

The drug industry, the NHS, NICE and its equivalent bodies in the UK, and patient and doctor groups all need to play their part in identifying solutions. Progress is happening but we need to think about the whole picture or we run the risk of making more piecemeal policy.

Eric Low is the Chief Executive of Myeloma UK. Eric featured alongside the three myeloma patients in The Price of Life documentary and played an influential role in ensuring that Revlimid was eventually made available to patients in England and Wales. Eric joins the interview panel to represent the views of Myeloma UK on the key questions arising from the documentary.

Comments? Contact: Sarah Ritchie 0131 557 3332 sarahr@myeloma.org.uk

LIVING

WITH

MYELOMA

Ask the nurse

by Ellen Watters RGN,, Myeloma Information Nurse Specialist, Myeloma UK I'm worried about swine flu. What precautions should I be taking? Due to lowered immunity in the majority of myeloma patients, there is generally a higher risk of contracting infection, colds and seasonal flu. The precautions you need to take to try and avoid contracting swine flu are no different from those that you would employ daily as a myeloma patient to minimise these risks. You can reduce, but not eliminate, the risk of catching swine flu by: • Minimising time spent in busy public areas and public transport • Maintaining good basic hygiene, for example washing hands frequently with soap and warm water • Frequently cleaning hard surfaces, such as door handles, using a normal cleaning product • Drinking lots of water (which you should be doing anyway) • Maintaining a healthy balanced diet If you do develop flu-like symptoms you should phone your GP, or call NHS Direct in England 0845 46 47 or NHS 24 in Scotland 08454 24 24 24. You will be issued with antiviral drugs, which aim to shorten the time you are unwell, reduce the severity of symptoms and reduce the risk of more serious complications. The NHS has issued extensive guidance on Influenza A H1N1 (swine flu), which can be found on the NHS website www.nhs.uk/conditions/pandemicflu. Myeloma UK has an Infosheet available. Please call the Myeloma Infoline on 0800 980 3332 to order a copy.

My mother is due to have a stem cell transplant and has been given an appointment to have her stem cells harvested. Please tell me what this entails. Before having a stem cell transplant, a relatively large number of stem cells need to be produced and subsequently collected and stored. To do this, patients are treated with a stem cell growth factor and chemotherapy to stimulate their stem cells to multiply and move from their bone marrow into the peripheral blood stream in preparation for collection, or 'harvesting'. The growth factor increases the number of stem cells in the bone marrow, causing them to spill over into the blood where they can be collected more easily. Growth factor injections are given in the outpatient clinic or at home either once or twice daily, depending on the dose prescribed. Chemotherapy (usually cyclophosphamide) is often also given as part of the process to help stimulate the growth of stem cells. This has the added benefit of potentially killing any existing myeloma cells. The time it takes to stimulate enough cells to harvest will vary between patients but normally it would take around 5 – 10 days. The stem cells are collected from the blood by a process called apheresis. This involves passing the blood through a machine, which separates and collects the stem cells and returns the remainder of the blood back to the patient. Sometimes enough cells will be collected in just one session. Commonly, two or three apheresis sessions over consecutive days may

be needed to achieve the number of cells required. Once enough stem cells have been collected, they will be frozen and stored. The doctors will normally try and collect enough stem cells for two transplants although this may vary from hospital to hospital.

What causes hypercalcaemia in myeloma and how is it treated? Bone disease is a very common feature of myeloma and can result in the release of calcium from the bones, which in turn can cause high levels of calcium in the blood (hypercalcaemia). Hypercalcaemia can be a common problem especially at diagnosis. Hypercalcaemia is present in the majority of patients at diagnosis and is normally treated with intravenous (IV) bisphoshonates i.e. zoledronic acid or pamidronate. Oral bisphosphonates are not normally given to treat hypercalcaemia at diagnosis. Bisphosphonates are taken up into the bone, where they bind with the calcium and prevent it from entering the blood stream. In rare circumstances, treatment for very high calcium levels may involve a short stay in hospital until the levels are lowered. This is achieved by fluid and bisphosphonate treatment given directly into a vein (intravenous). Symptoms of hypercalcaemia may include tiredness, loss of appetite, nausea, vomiting, constipation, increased thirst, confusion and general weakness. The symptoms caused by hypercalcaemia will improve as the calcium levels return to normal; levels will continue to be regularly monitored. 11

MEDICAL

MATTERS

Autologous stem cell transplantation in myeloma by Dr Muayed Lasebai, Specialist Registrar in Haematology, Dr Rachel L Hall, Consultant Haematologist, Royal Bournemouth Hospital Autologous stem cell transplants have long been considered the gold standard of care for patients under the age of 65 – 70 with myeloma. This procedure involves collection of the patient's own (autologous) peripheral blood or bone marrow stem cells and re-infusion of these stem cells at a later date following high-dose therapy. High-dose therapy (HDT) followed by stem cell transplantation (SCT) has been shown to improve the length of remission in newly diagnosed myeloma patients. This, alongside many other recent improvements in treatments for newly diagnosed and relapsed myeloma including Thalidomide Pharmion™, Velcade and Revlimid, has meant that outcomes for patients with myeloma have improved significantly from diagnosis. What are stem cells and how they are collected and preserved? Stem cells are a population of unspecialised cells that have the capacity to divide and self-renew, and grow into other kinds of cells. They can develop into highly specialised cells such as blood cells. Stem cells normally live in the bone marrow, but can be found in other tissues in small numbers. In order to collect enough stem cells for a transplant, many more cells than would normally be produced need to be collected.

causes the stem cells to multiply and move from the bone marrow into the peripheral blood stream – is carried out. This involves giving a dose of chemotherapy (usually cyclophosphamide), followed by a special type of drug called a growth factor. The combination of growth factor and chemotherapy increases the number of stem cells in the bone marrow, causing them to 'spill over' into the blood, where they can be collected more easily. Here they are collected from the blood using a special cellseparating machine (Figure 1). This machine recognises stem cells and separates them from the other blood cell components (Figure 2). They are collected in a barrel in the bottom of the machine and can then be frozen (cryo-preserved) for use at a later date. This process of stem cell collection is known as 'harvesting'. Why use autologous stem cell transplantation in myeloma? In myeloma, initial chemotherapy (usually tablets including Thalidomide) is used to achieve a good response or a 'plateau' in the activity of the myeloma cells. In younger and / or fitter patients it may be possible to improve the extent of this initial response by giving a big dose of intravenous chemotherapy (melphalan) following the initial tablet treatment. This is known as high-dose therapy (HDT).

To achieve this, a process known as 'stem cell mobilisation' – which The main limitation of HDT is that it 12

Figure 1: Stem cell collection machine This machine recognises stem cells and separates them from the other blood cell components

wipes out the bone marrow which means it can no longer supply the body with sufficient blood cells. This leads to the patient being at risk of infection, bleeding and being dependant on blood transfusions. A SCT uses healthy stem cells, previously collected from the patient, to offer a way round this problem. The re-introduced stem cells travel to the 'empty' bone marrow and re-grow into normal bone marrow and blood cells. This process is called engraftment and effectively ‘rescues’ the patient’s bone marrow. Transplantation therefore provides a means of giving higher doses of chemotherapy without causing permanent damage to blood cell production.

MEDICAL

MATTERS

Advantages of autologous SCT

autologous SCT is not considered a curative treatment and relapse almost always occurs.

For patients who are candidates, HDT followed by SCT normally results in higher response rates and longer remission periods compared to treatment with standard doses of chemotherapy alone. This has been demonstrated in several clinical studies. SCT can also provide a potential improvement in a patient's general quality of life as less residual myeloma can mean fewer future complications, such as myeloma bone disease. The acceptable upper age limit for performing autologous transplantation in myeloma is currently unclear, but several studies have confirmed that autologous SCT after HDT is equally well tolerated in groups of patients above 65 years of age. Certainly, it can be considered in very fit patients up to the age of 70 years. Based on these results, treatment with initial chemotherapy followed by HDT and SCT is the current treatment of choice for many patients with myeloma. Disadvantages of autologous SCT In the initial period following HDT and the infusion of stem cells, patients' blood counts will drop to low levels. This is usually for about 10 days prior to the engraftment of the stem cells. During this period the patient will be at risk of infection, bleeding and marked anaemia and will usually be kept in isolation from other patients. Any complications are successfully treated in most cases with intravenous antibiotics and blood products. Additionally, a growth factor known as GCSF

One transplant or two? 'Tandem' SCT refers to undergoing two consecutive SCT procedures usually within six months of each other. This is not commonly done.

Figure 2: Blood components are separated

(Granulocyte Colony Stimulating Factor) is sometimes used to speed the recovery of the white cell count. Mucositis (chemotherapy-induced inflammation of the lining of the gut) is also a common problem following HDT, resulting in ulceration of the mouth and throat and diarrhoea. Recent improvements in the field of supportive care, including cooling the mouth during chemotherapy (with ice pops!), better pain control and giving nutritional supplements has meant that management of this side-effect has improved significantly. Patients are generally an inpatient for 3 â&#x20AC;&#x201C; 4 weeks following HDT and SCT. After this period it takes approximately 3 â&#x20AC;&#x201C; 6 months for fatigue levels and immunity to improve. During this time patients need to be on various anti-infection medications to protect them against common infections and will be under regular outpatient review by their medical team. Finally, despite the excellent potential response to HDT and SCT, the success of this or any other treatment cannot be guaranteed and not all patients will achieve the desired response. It should also be noted that

Recent data suggests that in a very small subgroup of patients, tandem HDT and SCT may be more effective than a single SCT at achieving a complete remission. However, having tandem procedures can result in many more side-effects and this is why it is not routinely carried out for all patients. Sometimes, a second SCT can be carried out many years after the first, when the myeloma comes back at a later stage. Again, this is not always possible and will depend on individual patient circumstances. Improvements in the transplant field With further insight to cellular biology, newer treatments are being developed which may contribute to better outcomes with SCT. For example, a new product, MozobilTM (plerixafor), has been shown to enable the collection of enough stems cells in patients who with just chemotherapy and growth factors were unable to do so. This could make stem cell transplantation a viable option for more patients in the future.

Patient Experience Read more about Mozobil and SCT from a patientâ&#x20AC;&#x2122;s point of view on page 18..

LIVING

WITH

MYELOMA

Sexuality, Intimacy and Communication by Jennifer Foley, Nursing and Primary Care Programmes, Myeloma UK give your partner and loved ones. All of these factors can also have an impact on your feelings of attractiveness, ability to be aroused and desire to show intimacy towards your partner. Since being diagnosed, you may find different things pleasurable, want more or less from your partner or to communicate in new ways.

Sexuality is about who we are, how we feel about ourselves and how we express our feelings for others. Our sexuality encompasses many aspects of life such as our biological sexual drive, including sexual intercourse, as well as our emotional and physical sexuality such as our bonds with other people and they way in which we express our feelings and emotions. Intimacy â&#x20AC;&#x201C; a feeling of personal closeness to someone â&#x20AC;&#x201C; is about loving and being loved and can be expressed in many different ways, such as sharing in the life of someone important to us. It may or may not include physical affection. No matter our age or how our life changes, intimacy and sexuality are important in defining who we are. It is important to recognise that sexuality and intimacy will mean different things to different people. We cannot compare our needs and desires with others, nor is it useful to consider what's 'normal'. In the 14

same way that our mental and emotional needs change over time, our sexual needs and desires also change based on what is going on in our lives.

Myeloma Myeloma can affect intimacy and sexuality in many ways. This can be due to the myeloma itself, its treatments or coping with any of the other challenges that a diagnosis of myeloma can bring. Physically your body may change, and, emotionally, feelings about yourself and others can be affected. Myeloma can also alter the way you think you look (your self-image), your self-esteem and your role in relationships. For some people, myeloma can cause a loss of independence, fatigue, stress, anxiety, pain and fear. Coping with all of these can consume a significant amount of emotional and physical energy, perhaps leaving you with less to

Your role in your family or at work may also have changed. After diagnosis, people can sometimes feel like they can no longer 'provide' for their loved ones. Both patients and their partners can lose certain feelings of control over their life that they have become accustomed to. It may also be difficult to accept the need to be dependent on others or your compromised ability to make plans. Your 'role' and the control you feel you have over your day-to-day life is tied to the way in which you feel about yourself. Naturally, these factors have an impact on feelings of sexuality and intimacy.

The impact of treatment Myeloma and its treatments can change the dynamics of your close relationships. Your focus might temporarily shift from spending intimate time with your partner or close friends, to the practicalities of receiving treatments, attending appointments, dealing with test results and coping with side-effects. While you are on treatment, it may be that you become uninterested or lack the energy to be sexually intimate with your partner; however, you may still long for and enjoy their emotional and supportive companionship. Some patients are concerned that

LIVING

WITH

MYELOMA

having sex while on treatment could worsen their symptoms or increase their levels of fatigue. On the contrary, a partner's affection, love, caring and acceptance can help to dissolve the feelings of depression, guilt, fear and loss of self-confidence that sometimes accompany cancer treatment. The side-effects of chemotherapy can cause patients to experience changes in their sex drive. Chemotherapy-related erectile dysfunction, sickness, fatigue, depression and tiredness can all hamper your wish to be intimate. Most of these side-effects can be well managed with other treatments and remedies. Importantly, the side-effects of chemotherapy that can affect your sex life are usually temporary and resolve soon after treatment ends. In some men, Revlimid, Velcade and Thalidomide have been also been reported to cause temporary impotence and a decreased libido. These side-effects are also usually transient and resolve themselves when treatment ends.

Self-image and selfconfidence Chemotherapy can also cause changes in your physical appearance such as hair loss and weight changes, which affect the way you feel about how you look and how attractive you feel to your partner. It is common and normal to feel this way, and it is important that you communicate your concerns and apprehension about how you're feeling with your partner. Cancer itself can affect the way you perceive yourself because it is associated with physical changes that can cause some patients to experience weight changes, hair loss and loss of height.

The physical changes you experience can be an especially difficult aspect of myeloma to cope with because your feelings can be reinforced by the reactions of others. Some patients find the impact of myeloma on their self-confidence and body image can be more difficult to deal with than coping with a diagnosis of myeloma or the effects of myeloma treatment. If they are not managed, self-perceived changes in self-image can leave a lasting impact on your desire to be intimate.

Talk things through Patients and their partners can be reluctant to discuss their sexual and intimacy concerns and needs with each other and with their healthcare professional. Sexuality can be a very difficult, emotive topic to breach â&#x20AC;&#x201C; not just for couples affected by myeloma, but for all couples. Our sex lives are private and not often openly discussed with our partner, let alone strangers; however, be

reassured that sexual concerns and questions are common among myeloma patients and their partners. Doctors and nurses are very used to talking to patients about such issues, although they may often not raise the subject themselves. For any number of reasons, including those discussed above and the fact that you are likely to be feeling unusually stressed, anxious and unlike your usual self, you or your partner may be less interested or motivated to be sexually active. Remember, a partner's sexuality may be compromised by myeloma, too. Changes in the relationship dynamics, alongside the emotional and physical stress of coping with myeloma and all it brings, affects not just the patient but their loved ones. Communication is a key to overcoming this barrier. It is important to explain to each other exactly how you feel and why you think you're feeling how you do. 15

LIVING If verbal communication is too difficult, consider writing your partner a letter or an email. This will help you to better understand any changes in each other's mood and behaviour, and also prevent your partner from feeling rejected. If your libido is compromised, remember that intimacy isn't all about intercourse. There are many other ways you and your partner can maintain a level of intimacy, e.g. through making special time for each other or through other displays of affection such as cuddling, holding hands, oral sex or masturbation. Let your partner know – though communication or physical touch – that it is important to you to feel that you can and still want to be intimate with them, but it may be in different ways from before.

Talk to your healthcare professional Talking to your doctor and / or nurse can alleviate the fear that your experience is unusual, that you are no longer 'desirable' or that you may not regain your sex drive. Healthcare professionals understand the effect of myeloma and its treatment on sexuality and intimacy. As sexual concerns are common among patients and their partners, doctors and nurses are familiar with the challenges you face. They are willing and able to help find a solution, offer suggestions and point you in the direction of more support. Everyone's sexuality is unique and myeloma affects each person differently. Equally, because everyone has a different degree of comfort discussing certain topics such as sexuality, doctors or nurses may not bring up the topic of sexuality unless they are asked directly. This does not imply that the topic is of any less importance than others or that they 16

WITH

MYELOMA

“Patients sometimes find it easier to approach nurses rather than doctors with questions about sexuality, and it is important for us to provide an opportunity for them to do this and emphasise that it is a valid topic for discussion. It is important to realise that sexuality is about many aspects of a person's life – and does not just mean a physical relationship, but how someone feels about themself as a man or woman, their body image, their role at home and much more.” Monica Morris, Myeloma Clinical Nurse Specialist uncomfortable discussing it. Simply express to your doctor or nurse that you have concerns about the impact myeloma is having on your personal relationships and he or she will be happy to discuss it further. It is also important speak to your doctor or nurse if you are experiencing any specific side-effects of treatment that are affecting your ability to feel sexual or intimate. By vocalising your concerns, your doctor or nurse is likely to be able to offer you a solution and support that will abate your present feelings or ill side-effects. A few tips • Remember that all physical contact, including holding hands, cuddles or massages improve yours and your partner’s wellbeing, lend feelings of comfort and reassurance, and provide an important way of connecting with loved ones

• Remind yourself that what makes you attractive and desirable to your partner is more than your body • Try being sexual and intimate at the time of day when you feel most rested • Be experimental and creative with ways of making yourself and your partner feel good – shower together, go away for a weekend or wear something new • Ask your partner if they would like to be stimulated, even if it's not what you want yourself • Try to be more physically active. Exercise improves mood and increases energy levels • Find new positions that prevent putting pressure or strain on painful or weak areas • Embarrassment can make us feel awkward and stop us saying what we want to. One way to reduce embarrassment may be to write down your questions in advance and then discuss them with your doctor or nurse • Speak to your partner – help him or her to know how you're feeling and that any changes in your behaviour are unrelated to your love for them

Any questions? For further information, advice and to ask questions, call our Myeloma Infoline. Calls can be anonymous and the Myeloma UK Infoline has a strict confidentiality policy.

Myeloma Infoline

0800 980 3332

askthenurse@myeloma.org.uk

AMYLOIDOSIS

The Serum Free Light Chain Assay By Eve Hallam, Myeloma Information Nurse Specialist, Myeloma UK The Serum Free Light Chain Assay The Serum Free Light Chain Assay (SFLCA or Freelite™ test) is a blood test that measures the levels of free light chains produced by abnormal plasma cells in AL amyloidosis patients, and can be used to diagnose the disease and to determine disease activity and response to treatment. Free light chains are not picked up during routine blood testing; the SFLCA is a more sensitive test that can detect them.

What are light chains? Light chains are part of immunoglobulins (also called antibodies) that are produced by plasma cells in the bone marrow and are a normal part of the body's immune system. There are several different types of immunoglobulin (represented by the letters Ig) with each playing a specialised role in fighting infection. Each immunoglobulin molecule is made up of four components: two 'heavy chains' and two 'light chains'. There are five different types of heavy chain and these are known as G, A, M, D and E. An immunoglobulin molecule will always have two identical heavy chains and can be identified as IgG, IgA, IgM, IgD or IgE.

Light chain –

– Light chain

Heavy chain –

The type of AL amyloidosis you have is denoted by the type of light chain your plasma cells are producing, so you would either have kappa or lambda AL amyloidosis.

About the Serum Free Light Chain Assay – Heavy chain

Immunoglobulin structure

are named depending on their makeup. For example, IgG kappa or IgG lambda and so on.

Free light chains and AL amyloidosis Plasma cells do not produce complete immunoglobulin molecules. Instead they produce the heavy and light chain components separately and then assemble them before secretion into the bloodstream. Plasma cells usually make slightly more light chain components so there are usually some 'left-over' light chains that are secreted in the blood without being bound to a heavy chain. These are known as serum free light chains. Normally, there are only very low levels of free light chains in the blood (serum). However, in AL amyloidosis the abnormal plasma cells make far too many light chains. These light chains also have an abnormal structure which leads to the formation of amyloid in the tissues and organs.

There are two different types of light chain and these are known as kappa (κ) chains and lambda (λ) chains. Each immunoglobulin molecule will have two identical light chains, either kappa or lambda.

Further information

Therefore immunoglobulin molecules

www.myeloma.org.uk / amyloidosis

Myeloma UK has developed a range of information for AL amyloidosis patients. Call the Myeloma UK Infoline 0800 980 3332 for further information. This information is also available at

The measurement of free light chains in the blood is important in both the diagnosis and monitoring of AL amyloidosis. The SFLCA will be used regularly to monitor response to treatment, and to ensure any relapse is detected early. The SFLCA is a sensitive test that is able to detect even small changes in the levels of free light chains. The test helps doctors see how well a new treatment is working at an early stage. This was not possible previously with standard blood testing. The SFLCA involves taking a blood sample, which is tested in a hospital laboratory. A sample of most patients' blood will also be sent to the National Amyloidosis Centre (NAC) every month while on treatment, and every two to three months while off treatment. This is so the NAC can maintain detailed records of their free light chain levels, allowing them to monitor response to treatment and any disease progression over a longer period of time.

Summary The SFLCA is an important advance in the diagnosis and monitoring of AL amyloidosis. Before the invention of this test, the only way to monitor response to treatment was by bone marrow and organ biopsies. The SFLCA is still being investigated and knowledge about the best way to use it continues to grow. 17

PATIENT

EXPERIENCE

Mobilising stem cells for transplant Alasdair Mackay, myeloma patient, Edinburgh remission, which surprisingly was a full two and a half years.

I was diagnosed with myeloma in November 1998, aged 50. This followed months of investigative testing for a variety of possible problems, based on back pain, including lengthy physiotherapy, and consultations with a rheumatologist and an osteopath. Eventually a blood test indicated the possibility of the problem being myeloma, with an instant referral from my GP to Haematology at the Western General in Edinburgh. After the previous months of uncertainty and concern – and feeling awful – the diagnosis was confirmed within a week by a bone marrow test, and chemotherapy treatment began. This culminated in my first, very successful, stem cell transplant in July 1999. Thereafter I had four years of remission, enabling a return to a very active role, working as Managing Director of the property division of a large stock-market listed company. I had a demanding workload involving extensive travel in the UK and Europe, long working hours and decision-making involving large capital sums. In short a very stressful and responsible position. In June 2004, the paraprotein was showing again and I was told that I would need another stem cell transplant. However, during my first transplant they had only just managed to gather enough stem cells for one procedure and I didn't have any in the bank for my second. So another harvest was planned. However, after the first day of harvest, it was clear that I would not

Unfortunately though, after being off work for nine months, it was now necessary to give up my job. This was due to the restricting and challenging effects of vertebral damage, which causes debilitating pain and restricts my ability to walk any distance. Later I briefly tried Thalidomide but it did not suit me as I quickly developed peripheral neuropathy and had to stop.

“…in the style of the film The Italian Job my doctor suddenly said “I’ve got an idea”. This was the opportunity to be the first person in the UK to try a brand new drug called plerixafor…which works by liberating many more stem cells from the bone marrow into the blood stream than previous treatments, from where they can be harvested as usual.” Alasdair Mackay produce enough stem cells for an effective transplant, as the first harvest was tiny, and each day is expected to produce a smaller quantity than the day before. Massive disappointment! I had one high-dose cycle of chemotherapy aimed at giving me a period in

My wife Pam and I have been married very happily for 38 years, and have two sons in their early 30s with whom I have an excellent and close relationship. Although physical activities with them, such as motorsport, are no longer possible due to the damage the myeloma has done to my back, we all spend many happy family days together. The addition to our family of my grandson in January 2008 has contributed to a very contented family life, despite all my myeloma adventures. An additional plus is that Pam decided to retire early from teaching to allow us both to enjoy the wonderful benefits of time together. At the beginning of 2008, and just before the birth of my grandchild, I had begun to show a trace of paraprotein again, and I returned to chemo, with no real prospect of an alternative treatment on the horizon. Revlimid and Velcade were not first choice treatments as they are usually given with steroids, and we had lots of evidence that my body and high-dose steroids do not work well together! Pam recounts an occasion when, on

PATIENT

the way home in the car after a large infusion of steroids to support the chemotherapy, she had to restrain me by my collar from jumping out of the car to "give advice" to another road user! I hope that these drugs may still be a future option. By June 2008, my chemotherapy regime was coming to an end but although my paraprotein was down to one, it seemed we were facing limited treatment options in the future. This had not been part of my plan! At the end of a regular clinic appointment my consultant, in the style of the film The Italian Job suddenly saidâ&#x20AC;Ś "I've got an idea". This was the opportunity to be the first person in the UK to try a brand new drug called plerixafor (Mozobil). He explained it was a drug as yet unlicensed and untried in the UK (it had already been a success in the USA and Australia). It works by liberating many more stem cells from the bone marrow into the blood stream than previous treatments, from where they can be harvested as usual. As a result of my very satisfactory remission period after my first transplant, this was the preferred treatment as it was hoped that the plerixafor could help replicate this success. It was the opportunity I had been waiting for! I was delighted, and very happy to have a go. Within a month it was confirmed that the drug was available for me, and we returned to the growth factor injection process, at which my wife is now adept. No bruises this time! I had to spend a night in hospital to receive the plerixafor at 11.00pm, then, following my growth factor injection at 7.20am, I travelled across the city to the cell separator unit at

EXPERIENCE

the Royal Infirmary, and within 2 hours began the separation process. Timing was crucial in this process, and this generated its own challenges as no protocol for the procedure had yet been written for hospital staff. The location of the hospital bed, and the separator unit in the same hospital would have simplified this process, but busy early morning traffic was a small price to pay for this opportunity. I have suffered from irritable bowel syndrome (IBS) for many years, and the effects of the plerixafor on my system quickly became apparent, as the IBS was acutely triggered. By the end of the second day's harvest we were still short of cells, but I felt too debilitated to continue. Fortunately the drug company agreed to supply a further cycle of plerixafor when I had recovered. The original harvest was frozen, and within a few weeks I was able to repeat the procedure. This time I was able effectively to manage the side-effect with regular doses of loperamide and was delighted to produce enough cells, added to those in "the bank" for my transplant in November 2008. I celebrated my 60th birthday (extremely quietly) on day four of the transplant process â&#x20AC;&#x201C; possibly the most unique 60th celebration I could have planned. Apart from having had two pretty nasty infections since my transplant, both resulting in a spell on heavy antibiotics in hospital, I have been able to have as full a life as is possible with my mobility restrictions, enjoying every minute with my growing grandson, and making the most of my wife's retirement. It is some years since Pam and I have taken a holiday together and we are enjoying planning for this

Plerixafor enabling a second stem cell transplant has made all this possible and I am so very grateful. I have been given another chance at life with the likely possibility of further (new?) treatments in the future. Who could ask for more?

Medical Matters See page 12 for an article about autologous stem cell transplantation by two doctors from the Royal Bournemouth Hospital

Further information

High-Dose Therapy and Stem Cell Transplantation Infoguide Explains high-dose therapy and stem cell transplantation, why they are needed, and the potential advantages and disadvantages of treatments. It also discusses what will happen during the procedure, as well as outlining what to expect during the recovery process

Myeloma Infoline

0800 980 3332

askthenurse@myeloma.org.uk 19

FUNDRAISING IN ACTION Team Myeloma UK raises over £75K at Edinburgh Marathon

A huge thank you to the 141-strong 'Team Myeloma UK' who took part in the 2009 Albert Bartlet Edinburgh Marathon. It was an extremely hot day but every single one of our runners completed either the full marathon or their leg of the Hairy Haggis Team Relay. Our fastest marathon runner completed the run in just 2 hours 40 mins. With funds still coming in, it is expected that Team Myeloma UK will have raised over £75,000 for Myeloma UK. Visit the fundraising channel of Myeloma TV where a film charting the success of the day will soon be available, and to view motivational videos from running experts www.myelomatv.org.uk. If you would still like to take part in a marathon, or active event this year, we still have a few places available in the following: • Berlin Marathon – Sunday 20 September 2009 • BUPA Great South Run – Sunday 25 October 2009 • The Bank of America Chicago Marathon – Sunday 11 October 2009 – only 1 place left! • The Rat Race, London – Saturday 26 and Sunday 27 September 2009 A physical and mental adventure team challenge where participants get to hike, bike, abseil, climb and kayak More information is available from Lorna on 0131 557 3332 or lorna@myeloma.org.uk .

Birthday celebrations raise funds for Myeloma UK

Margaret Powell, who was diagnosed with myeloma three and a half years ago, celebrated her 60th birthday by holding a fundraising night for Myeloma UK at the Unity Club in Standish. Amy Sinacola, a Haematology Nurse Specialist from the Manchester Royal Infirmary, attended the night to accept a cheque on behalf of Myeloma UK for £1,200. Margaret would like to thank all of her family, friends, anonymous contributors and local businesses for their donations and raffle prizes. A special thanks to Rita and Alan, who run the Unity Club, for organising the event. Celebration giving is a popular and easy way to support Myeloma UK. If you have an imminent celebration why not ask for donations to Myeloma UK in lieu of presents? To find out more visit www.myeloma.org.uk.

FUNDRAISING IN ACTION Nominating Myeloma UK as 'Charity of the Year'

Raise money for myeloma research in Bristol on 19 September

Each year many businesses select a charity to be their official 'Charity of the Year' with all planned company fundraising events going to support the one cause. Several companies have selected Myeloma UK as their chosen charity over the years, including the Stockton and Newcastle offices of Faithful+Gould. One of their staff members had a relative with myeloma and, wanting to put something back by raising awareness and funds, nominated Myeloma UK. Over the past year the company held a range of fundraising events including bike rides, runs, a raffle, a bake day and dress down day. One employee even raised £150 making bacon sandwiches and selling them to staff. A total of £1,803 was raised and Myeloma UK extends a huge thank you to everyone from Faithful+Gould who took part. If you work for a business please consider nominating Myeloma UK. Get in touch on 0131 557 3332 and we can give you some information on guidance on how to make a strong case for support.

As part of our efforts to raise money for research we are holding a Retail Therapy Walk in Bristol. On Saturday 19 September 2009 over 200 people will be sponsored from family, friends and colleagues to complete a six-mile (or two-mile option) sponsored walk through the heart of Bristol's shopping district.

What happens on the day? • Walkers assemble in Castle Park at 11.30am for a 12 noon start • After signing in you will receive a goody bag containing discount vouchers, special offers, product samples, snacks, water and a brochure containing a route map and quiz • Follow the route, taking as much time as you want for browsing, buying or coffee stops along the way • At the end return to the Park, weighed down with shopping bags, to receive your certificate and gifts How do I take part? • To take part you must register for the walk. You can do this online at www.myeloma.org.uk/rtw or request a hard copy registration form from us on 0131 557 3332 • Registration costs: £15 per adult (over 16) / £10 per child (under 16) • All ages welcome For more information contact the fundraising team on 0131 557 3332 or sara@myeloma.org.uk www.myeloma.org.uk/rtw

MYELOMA

NEWS

My working day Jennifer Foley, Nursing and Primary Care Programmes

New myeloma Infosheets now available

Everyday, I write (what feels like) hundreds of emails to staff, nurses, doctors, patients, pharmaceutical reps or other professionals about any one of 1001 topics. When I read, when I write and when I stare out the window (which I gratefully sit next to), I think. I think about ways to keep my programmes innovative, how to translate clinical data for patients, about whether it's What do I do all day? I read; I write; I grammatically correct to use a think; I discuss. All about myeloma. comma, colon, or semi-colon. I also think about other things including When I'm developing our healthcare how long I have to wait to get out professional e-bulletins, I trawl in the sun (or rain) and back on through recently published scientific my bike. journals, reading up on news-worthy When you work in a high-paced topics to highlight. If I'm writing an environment like Myeloma UK, there article for the Living With Myeloma section of Myeloma Matters, I read are a lot of ideas brewing around articles on the internet, bringing my every corner. When these things – and other issues like the best way knowledge of important topics upforward for our GP awareness to-date. When new guidelines are published, I read between the lines campaign, or how to help myeloma to determine the impact on nurses, nurses secure funding for their posts – present themselves, discussion is doctors and patients. When I'm required. When I need help, I turn to reviewing our internal educational my Service Team colleagues who materials for nurses or patients, are experts on everything from I read slowly and carefully, dotting cancer policy to microbiology and i's and crossing t's. patient information and support Fuelled with the knowledge I need, I needs. When we bounce ideas off occasionally write Infosheets on each other, brainstorm around a myeloma, its treatment and care table, and discuss at our desks, our or ways to manage side-effects. great aspirations move closer to Sometimes I write articles for nurses reality – together, we make it happen. that will feature in healthcare Today I read, wrote, thought about professional magazines. Other times, I help write recommendations and discussed a number of things for nurses on the way that myeloma related to myeloma and the nurses and doctors who treat and care for should be managed or how it can be better diagnosed by GPs. Most myeloma patients. Tomorrow, I'll read over what I wrote today and think days our website needs updating again about what was discussed. so I edit text to keep our online Then I'll send a hundred emails. information in step with the pace jennifer@myeloma.org.uk of change in myeloma.

Myeloma UK has produced two new Myeloma Infosheets on Prescription Charges and Copayments (top-ups). The cost of prescriptions and the situations under which prescriptions are free differ across the UK. The Prescription Charges Infosheet gives a country-bycountry guide to what the situation is surrounding prescriptions across the UK. The Copayments Infosheet provides information about the copayment rules and what they mean practically for patients who may be considering copaying. Both Infosheets are available to download at www.myeloma.org.uk or you can order printed copies by calling the Myeloma Infoline 0800 980 3332.

Myeloma Infoline

0800 980 3332

askthenurse@myeloma.org.uk

FORTHCOMING

Patient and Family Myeloma Infodays

EVENTS

Join a sponsored walk with a difference –

Retail Therapy Walk for Research

Meet others with myeloma, share experiences, learn from experts • Sheffield

Saturday 5 September

• London

Saturday 17 October

• Bristol

Saturday 7 November

• Newcastle

Saturday 14 November

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

Bristol Saturday 19 September For details contact Sara 0131 557 3332 sara@myeloma.org.uk www.myeloma.org.uk/rtw

Rat Race Urban Adventure

Join Team Myeloma UK to take part in this unique team event. London 26 / 27 September

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

Myeloma Matters editorial and production team Medical Editor: Dr Gordon Cook Director, Blood and Marrow Transplantation Programme St Jamesâ&#x20AC;&#x2122;s University Hospital, Leeds Editor: Jude Watson Editorial support: Sara Morgan Design: Linda Scott-McFarlane Myeloma UK 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, Prof Gareth Morgan, Jeff Solomon 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 â&#x20AC;&#x201C; 28 June