My life with myeloma. Ed Jones Patient experience. Myeloma research Taking a drug from the laboratory into early phase clinical trials

Transcription

1 WINTER My life with myeloma Ed Jones Patient experience Myeloma research Taking a drug from the laboratory into early phase clinical trials Medical mattersmyelo Immunotherapy: Focus on adoptive T cell transfer

2 WINTER 2016 Contents 8 Research We interview a Professor at Imperial College London who explains his team s role in taking a new drug, DTP3, from the laboratory into early phase clinical trials in patients. 12 Leading Voices Meindert Boysen, Programme Director at the National Institute for Health and Care Excellence talks about the new Cancer Drugs Fund and whether it will improve access to new treatments. 14 Medical matters 24 Dr Chris Parrish provides an insight into a type of immunotherapy called adoptive T cell transfer which is currently being studied in myeloma. 18 Ask the Nurse Ellen Watters, Myeloma Information Specialist at Myeloma UK answers some frequently asked questions on osteonecrosis of the jaw, shingles and hypercalcaemia. 20 Living well with myeloma This feature looks at how to avoid infection; tips for managing constipation and diarrhoea; and coping with anxiety and depression. Patient experience Ed Jones talks about his diagnosis of myeloma, the treatment he has received and the effect the diagnosis has had on his life. PLUS For feedback, comments and questions about content: Contact Jude Leitch on +44 (0) or jude.leitch@myeloma.org.uk To subscribe: Contact Stephanie Feeney +44 (0) or stephanie.feeney@myeloma.org.uk 2 Myeloma Matters Winter 2016

3 DEAR READER Welcome to the Winter edition of Myeloma Matters. As 2016 draws to a close it seems the right time to briefly reflect on our remarkable achievements over the last 12 months made possible with the help of our many supporters has seen exciting new developments in our innovative research programme, not least our groundbreaking partnership with the Structural Genomics Consortium (SGC) and the imminent opening of a range of innovative studies within our Clinical Trial Network. As ever, a focus on the individual needs of patients is the thread that runs through all of our work. In 2016 we made further investment in our health services research programme that will help inform the way myeloma is treated and managed, and shape how patient care is designed, delivered and funded. Partnership projects with UK, European and global agencies will ensure that a robust understanding of patient value can be placed at the heart of future NHS treatment decisions. Our efforts to continually press for UK-wide NHS approval of Imnovid (pomalidomide) have paid dividends with the recent news that it will now be available at last to myeloma patients in England you can read more about this decision in Newsround. However, gaining access to new treatments is only one part of the picture. Providing optimal health care to patients can only be achieved if patients are supported to make informed decisions and professionals are supported to understand the complex needs of myeloma patients. This year we continued to develop award-winning patient information resources, online and in print. We also engaged with over 500 doctors and nurses through our Myeloma Academy and related learning events across the country to drive improvements that will make a daily difference to patients and their families. All of this is only possible as a result of the generous support of our many donors and partners. Best wishes to you all for the festive season. ERIC LOW Chief Executive Follow me on OUR EFFORTS TO CONTINUALLY PRESS FOR UK-WIDE NHS APPROVAL OF IMNOVID HAVE PAID DIVIDENDS WITH THE RECENT NEWS THAT IT WILL NOW BE AVAILABLE AT LAST TO MYELOMA PATIENTS IN ENGLAND. Winter 2016 Myeloma Matters 3

4 NEWS ROUND Understanding what patients want from treatment Myeloma UK is continuing to invest in the hugely important area of understanding what patients want from treatment as part of our wider health services research programme. 475 patients completed our recent survey about what factors are most important to them when choosing between treatment options; for example, the length of remission or fewer side-effects. Dr Jayne Galinsky, Health Services Researcher at Myeloma UK says, Research suggests that healthcare professionals are often unware of the preferences of individual myeloma patients about their treatment. Studies have also shown that, in some cases, healthcare professionals have considerably underestimated important issues such as pain or quality of life. This survey was developed in collaboration with the research group Community and Patient Preference Research (CaPPRe). Myeloma UK is currently analysing the results and will seek to publish the findings within the next few months. The findings are of critical importance as they can be used to inform the design of new drugs that better align with what patients want. A month of mixed NICE decisions for myeloma patients November saw three decisions affecting myeloma patients from the National Institute for Health and Care Excellence (NICE). First up, the good news: Imnovid (pomalidomide) in combination with dexamethasone, has been approved for immediate use on the NHS in England. The drug, which was turned down by NICE in 2015 and had been removed from the Cancer Drugs Fund (CDF), was approved for patients whose myeloma has come back after three prior treatments, including Velcade (bortezomib) and Revlimid (lenalidomide). Eric Low, Chief Executive at Myeloma UK said, This is brilliant news for patients in England. Imnovid is an effective treatment and fills a major gap in the treatment pathway. We are really pleased that effective collaboration between Celgene, Myeloma UK and NICE, has resulted in approval of this treatment. Imnovid is already available for relapsed myeloma patients in Scotland and Wales. In Northern Ireland, NICE guidance is usually reviewed for application in the local area within three months of publication. Unfortunately, though, in November NICE also provided negative guidance on two other myeloma drugs, Kyprolis (carfilzomib) and Revlimid (lenalidomide). These decisions affect England and Wales. The decision on Revlimid relates to the treatment of patients at first relapse, and is the third time NICE has said no to using the drug in this setting. The guidance relates specifically to patients who are not eligible for high-dose therapy and stem cell transplantation and who received Velcade (bortezomib) as their first treatment and therefore cannot have it again at first relapse. Myeloma UK Policy and Public Affairs Manager, Kate Morgan said, We are very disappointed by these decisions. On Kyprolis, we are cautiously optimistic that the company and the committee will find the common ground needed to ensure that it is approved on the NHS. We are extremely frustrated that NICE have issued yet another draft negative decision on Revlimid. We urge Celgene and NICE to continue to work towards a solution. 4 Myeloma Matters Winter 2016

5 NEWSROUND Spotlight on campaign off to a strong start A series of campaigns to highlight the services of Myeloma UK has gotten off to a great start with a campaign to shine the spotlight on the Myeloma Infoline during the month of October. During the campaign the Myeloma Infoline received the highest number of calls on record, taking a total of 344 calls during October a 20% increase on the previous month. The Myeloma Infoline is an accredited freephone confidential helpline answered by specialist staff and is there for anyone who needs information, emotional support, practical advice or a listening ear. Steve Goddard is one of thousands of myeloma patients who have used the service, I d definitely recommend it to anyone who s affected by myeloma. Sometimes I think I ve taken everything in that my doctor and nurse have told me, but later realise there are things I feel I need to know more about. This is when calling the Myeloma Infoline helps as I know I can ask questions, even if they might feel a bit daft. Myeloma Information Specialist Ellen Watters says, I m delighted that our efforts to raise awareness of the service have been so successful. We need to build on this success though as we know The Myeloma Infoline team there are many people out there who might not know about the service. The Spotlight on campaign series continues, highlighting other Myeloma UK services such as our wide range of printed information and our Patient and Family Myeloma Infodays. Contact the Myeloma Infoline on or from Ireland or askthenurse@ myeloma.org.uk Patient access to new drugs should be speeded up, finds influential Review The Accelerated Access Review (AAR), a review carried out by an independent team of experts on behalf of the UK Government, has published their final report looking at how drug licensing and approval processes could be improved to speed up patient access to the most promising new drugs by up to four years. The review team say the drug licensing and approval system can be made to work better through: Improved horizon-scanning (i.e. being more aware of new drugs in the pipeline) in the NHS to allow better prioritisation and preparation Fast-track processes for the most promising new drugs Involving patients and carers in all stages of the system Streamlining national approval processes for bringing new drugs into the NHS The report recommends that changes should be overseen by a group of high-level stakeholders known as the Accelerated Access Partnership. Myeloma UK Chief Executive, Eric Low, was part of the Expert Advisory Group for the AAR and played a key role in helping to generate the report and its recommendations, as well as championing the review among the public and other stakeholders. Eric said, Myeloma UK has been a long-time champion of collaborations that speed up access to the most promising new treatments. We eagerly anticipate the establishment of the Accelerated Access Partnership which we would expect to have the expertise, drive and leadership required to support and champion innovations that transform treatment and care for patients. Winter 2016 Myeloma Matters 5

6 MYELOMA SCOPE MYELOMA RESEARCH NEWS FROM AROUND THE WORLD 6 Myeloma Matters Winter 2016

7 MYELOMASCOPE New review supports use of massage to manage cancerrelated pain A new review into the effects of massage on pain associated with cancer has shown it to be effective for reducing both the intensity and severity of pain. Until now there has been no rigorous review of the available research and evidence for its value in cancer patients. The study concludes that patients should consider massage as part of a wider symptom management programme to help control any cancer-related pain. Due to the bone complications in myeloma it is important to explain what myeloma is to the therapist and only have gentle massages. Researchers improve understanding of how myeloma takes over the bone marrow Stem cells in the bone marrow are often altered in myeloma favouring the growth of the malignant cells, but the processes to date have been poorly understood. Researchers have identified what they believe to be the mechanisms used by myeloma cells to take over in the bone marrow. The researchers found that myeloma cells can profoundly affect adjacent stem cells in the bone marrow, enhancing the expression of particular proteins that make the bone marrow environment more favourable to their growth. The team hope this will reveal new treatment targets to be explored. New mouse model for understanding myeloma Researchers have developed a mouse model that allows us to better understand the mechanisms that lead to the onset and progression of myeloma. Several models of myeloma have been developed, but so far none that perfectly mimic the stepwise progression and complex cellular mechanisms characteristic of the disease. To overcome the obstacles, the researchers genetically modified mice to carry the human versions of six genes that participate in the development and growth of myeloma cells, which better reflects how myeloma develops. Now that we have a proper model of the disease, we ll be able to more effectively study myeloma as well as potential treatments... this will take us to the next level on the long and challenging road to a cure stated the research lead. Darzalex data continues to go from strength to strength Results from a large clinical trial supporting the use of Darzalex (daratumumab) for relapsed and/or refractory myeloma patients have recently been published in the New England Journal of Medicine. Addition of Darzalex to Revlimid (lenalidomide) and dexamethasone was shown to significantly improve response rates compared to Revlimid and dexamethasone. The effect of Darzalex was consistent regardless of whether patients had previously been treated with Revlimid or were refractory to proteasome inhibitors (such as Velcade) or their most recent treatment. Darzalex is currently licensed as a monotherapy (used on its own). An application was recently submitted to the European Medicines Agency to expand its use so that it can be used in combination, based partly on data from this trial; a decision is expected before the end of the year. Statins linked to improved survival in myeloma The use of statins is associated with a decreased risk of death in myeloma patients, according to a study published in the Journal of Clinical Oncology. Researchers evaluated the association between statin use and mortality in a large cohort of US veterans with myeloma. They analysed data from 4,957 myeloma patients diagnosed between 1999 and 2013 who were included in the Veterans Administration Central Cancer Registry. Of those, 2,294 received statins, defined as having a statin prescription within 3 months (before or after) the time of their myeloma diagnosis. Statin use was associated with a 21% decrease in all causes of death, as well as a 24% decrease in myeloma-related death. Across all analyses, the correlation remained significant. Statin use was also associated with a 31% reduction in the risk of developing a skeletalrelated event (complications associated with myeloma bone disease). The findings support a role for statin use among myeloma patients, but further studies are needed to confirm these results. Keep up-to-date on myeloma news by visiting or sign up to our monthly e-newsletter at Winter 2016 Myeloma Matters 7

8 FROM BENCH TO BEDSIDE: TAKING A DRUG FROM THE LAB INTO EARLY PHASE CLINICAL TRIALS An interview with Prof Guido Franzoso, Head of the Centre for Cell Signalling and Inflammation at Imperial College London. A clinical trial of a novel drug called DTP3 has recently opened up at various hospitals in London for myeloma patients. DTP3 was invented at Imperial College London and was researched for many years in the laboratory before it became possible to trial the drug in patients. In this article Prof Guido Franzoso explains his team s role in taking DTP3 from the laboratory into early phase clinical trials in patients. QYour team invented DTP3 what has this process involved? AComing up with DTP3 is the culmination of over 20 years of research by me and my team. It has taken this long to work out the abnormal molecular pathways in myeloma cells and to understand how best to disrupt the most important ones with our drug, DTP3. Designing DTP3 meant that chemists, biologists and pharmacologists worked together with a great deal of trial and error along the way. Above all, it required determination to never give up, despite all the difficulties and disappointments inherent in trying to tackle an enemy as challenging as myeloma. QWhat makes DTP3 different? How does it compare with current available treatments? AMost cancer cells are driven by overly active survival signals which means that these cells survive longer than normal cells and so can carry on multiplying. The challenge for new cancer drugs is to hit the cancer signalling mechanisms whilst leaving the normal ones well alone, thus avoiding serious side-effects. DTP3 is able to uniquely block a molecule that keeps myeloma cells alive but doesn t affect normal cells. Myeloma drugs are generally unable to achieve this degree of selectivity and no one before has been able hit the same critical mechanism that DTP3 hits. This means that DTP3 could be more efficient than other drugs and at the same time have fewer side-effects. QHow does what your team is doing in the field of drug development differ from what pharmaceutical companies do? A There are probably more things in common between us and large pharmaceutical companies than are different, as the process of developing a new drug is strictly regulated by governmental and other legislative requirements. Crucially, however, our approach differs in one respect. We are developing DTP3 with a tightly integrated team including the scientists who invented the drug in the first place and expert myeloma clinicians supervising the clinical trials. This gives us a much greater ongoing insight into how DTP3 is acting in patients than would be the case with a drug developed by a large pharmaceutical company. This has allowed us to progress more rapidly to early clinical trials. QDTP3 is now being tested in myeloma patients can you explain a bit more about what the trial is trying to find out? A DTP3 is currently being tested in a small, early phase 8 Myeloma Matters Winter 2016

9 clinical trial of relapsed patients who have received at least two prior courses of treatment. This is an early stage trial, so the most important objective is to make sure that DTP3 is safe to use in patients. The trial is also designed to look at how well the drug works in patients and to determine the best dose level for future trials. We will also collect information to better understand the way the drug is working against myeloma cells and get some early signs of how well it might work in patients. To fully evaluate the effectiveness of DTP3 we will need to perform further clinical trials involving larger numbers of patients in the future. Q How is DTP3 being given to patients within the trial? A At the moment DTP3 is being evaluated as a single drug given as a short (one hour) infusion three times a week. Further trials will look at whether it can be given less frequently. Once we have a clear idea of how well DTP3 works as a single drug, we can decide whether the clinical activity could benefit from being boosted by the addition of other myeloma drugs. The particular way that DTP3 acts against myeloma cells suggests that it could be usefully combined with other drugs to produce even better results whilst avoiding too many side-effects, which is often one of the limitations of using a number of drugs at the same time. QWhat s the success rate for drugs to be proved successful in the laboratory to also be effective in patients? AIn the past, the majority of new myeloma drugs which showed potential in the laboratory did not go on to show the same promise in patients, with only about 10% surviving beyond early phase clinical trials. However, more recently, advances in our understanding of myeloma are allowing us to design drugs with a higher probability of working in patients. So far the results of laboratory testing with DTP3 has shown outstanding efficacy and tolerability and we are optimistic that it has a better chance of proving to be a useful drug in patients. Of course we cannot put an actual figure on how likely this is but we would not be expending the considerable amount of time and money required to support a clinical trial with DTP3 unless we believed there was a very good chance of providing a meaningful benefit to patients. QWhat happens if the early phase clinical trial shows DTP3 is a safe treatment for myeloma? AAs DTP3 arose from the work of me and my team at Imperial, the College is ideally placed to support its early phase development. However, due to the exceptional promise of the drug, a separate commercial biotechnology company has already been established to conduct the future clinical development of DTP3. MYELOMA RESEARCH Future trials will inevitably be larger, more complex and more expensive, thus demanding the commercial resources of a dedicated company. We are therefore very pleased that there is a structure already in place to ensure the seamless transition of DTP3 to larger scale clinical trials, thus removing any potential delays to the progression of this drug through the development process. QCan DTP3 be accessed outside of clinical trials? ADuring the clinical development of DTP3 it will not be available outside of clinical trials, although the number and size of studies may increase markedly over the next few years. The current DTP3 trial is being run at five hospitals in London but will expand next year to further sites in other parts of the UK. QIs your team working on other drugs for myeloma? AAt the moment, our resources are devoted to progressing DTP3 into the clinic, gaining a better understanding of the drug s activity when used to treat patients and scientifically supporting the myeloma clinicians who are caring for the patients receiving DTP3 as part of the current trial. However, should DTP3 turn out to be as useful in myeloma as we are hoping it will, then the temptation to try to come up with another novel myeloma drug will be very hard to resist! If you are interested in participating in the trial you should speak to your doctor in the first instance. If you would like more information about the trial, please contact Vic Sudds, Clinical Project Manager at Imperial College or v.sudds@imperial.ac.uk Winter 2016 Myeloma Matters 9

10 LEADING VOICES Leading Voices features short interviews with key opinion leaders from government, industry, the NHS and the myeloma community. Leading Voices features short interviews with key opinion leaders from government, industry, the NHS and the myeloma community. Meindert Boysen is Programme Director of Technology Appraisals at the National Institute for Health and Care Excellence (NICE). Meindert leads the team of 70 people who support the NICE appraisal committees which consider whether to recommend drugs for routine use on the NHS in England. We ask him about the impact of the new Cancer Drugs Fund, which has recently been taken on by NICE (see box) and whether it will improve access to new treatments, and about the ongoing debate about NICE reform. QThe Cancer Drugs Fund (CDF) was first launched in 2011 and operated by NHS England. What was your view of it at the time? AMy view was that, in principle, it was not a bad idea; as a bridge to a more durable solution. Indeed, it has provided access to treatment for 95,000 patients. However, it was a missed opportunity not to develop a system that would work for the longer-term; for example, one that collects further data on patients experience on the treatments that are funded, which allows a proper assessment to be made about the value of that treatment. QWhat are the key components of the new CDF? AThe new CDF recognises that the drug licensing bodies (such as the European Medicines Agency) are increasingly approving new drugs at an earlier stage and with less clinical data. NICE has decided that, as long as the right conditions are in place, we should follow suit, being more flexible and aiming to approve innovative treatments earlier. The new CDF is a kind of social contract that all parties are signing up to: the drug company by engaging earlier in commercial discussions; NICE engaging in data collection and approving drugs where there is still uncertainty; and patients allowing their data to be collected and used. Such collaboration will make earlier access to treatments possible. QWill the new CDF meet expectations about improving access to new treatments? The new CDF allows for A another option, apart from just yes and no, which allows NICE to take a bit more risk, and support access where otherwise it would not have. Furthermore, NHS England has committed to fund the treatment as soon as it receives its licence if NICE has issued a positive recommendation; many months earlier than it currently does. QWhat will collecting real world data involve? AThis will have to depend on individual circumstances, although it will be important not just to collect data from patients on the drug but, where possible, also from people not on the drug and from patients after they have had the drug. If they relapse what 10 Myeloma Matters Winter 2016

11 LEADING VOICES other treatments do they have? How long are they treated for? There is also still much to do in getting better data on quality of life so we have an aspiration to do more on that. We are working hard with colleagues in NHS England and Public Health England to allow cancer registries to collect the data that will be useful for further NICE review. Cancer registries capture complete summaries of patient history, diagnosis and treatment. Myeloma UK, along with other patient organisations, will have a chance to comment on the data collection arrangements for individual drugs under the CDF. To what extent is NICE Q a negotiator with drug companies? A I would describe us more as honest brokers ; we re here to make sure that parties gather round the table, look each other in the eye and seek the flexibilities that are available in the system to come up with sensible solutions. We don t see ourselves as part of a negotiation ; it s about making it happen, challenging parties on how far they are willing to go to find solutions. There has been comment Q from some pharma sources that NICE needs to be reformed what is your view on that? AIt is not just about NICE, it is about the system. What does the Government want to achieve? What can the NHS afford? What are the priorities for investment across the health service? Reform of NICE alone won t deliver system change. Q What do you see as the future for cooperation between NICE and patient organisations such as Myeloma UK? A For Myeloma UK to have moved to participating in and commissioning research and seeking scientific advice from NICE around some of the difficult technical debates is absolutely commendable. It is great that a patient organisation has made that move. It s so useful for us to be able to speak to a patient organisation in those terms. The way Myeloma UK has interpreted its role is absolutely one that I support. At A Glance: The evolution of the Cancer Drugs Fund Set up in 2011, the Cancer Drugs Fund (CDF) was put in place to improve access to drugs in England which had not yet been approved by NICE. The CDF was designed to be a stop-gap measure and was not a sustainable solution to delivering access to new cancer drugs so, in July 2016, a new CDF was incorporated into the NICE appraisal system. New drugs which appear promising but are missing some evidence to prove that they are clinically and cost-effective can be given conditional approval by NICE and made available to patients through the new CDF. This is on the condition that more information is collected about the benefit of the drug in a real world clinical setting to submit as additional evidence to NICE. The new CDF will fund conditionally approved drugs for a maximum of two years, at the end of which time they will be further assessed by NICE. From the start Myeloma UK did not believe that the CDF would deliver what was needed; a long-term, sustainable system for delivering better access to the best new treatments. We need a drug appraisal system that will ensure money is spent wisely on the treatments that will deliver the most benefit for patients. The work of NICE is essential to this and we therefore welcome the fact that the new CDF will form part of the NICE appraisals process. However, the new CDF will continue to have its limitations and there may be relatively few new drugs where the margin of uncertainty about clinical and cost-effectiveness can be resolved under the new processes. The quality of decisionmaking by NICE can only ever be as good as the quality of the data available. Focusing purely on the drug appraisal process is therefore never going to deliver the step change we need in improving access. We need to look at the whole system. We will continue to work with NICE, drug companies, government and, most importantly, with patients and their families, to ensure that the needs of patients are foremost in the effort to make the best new myeloma treatments available on the NHS. Eric Low Chief Executive, Myeloma UK Winter 2016 Myeloma Matters 11

12 HARNESSING THE POWER OF THE IMMUNE SYSTEM: FOCUS ON ADOPTIVE T CELL TRANSFER BY DR CHRIS PARRISH Consultant Haematologist, St James s Institute of Oncology, Leeds 12 Myeloma Matters Winter 2016

13 MEDICAL MATTERS In this article Dr Chris Parrish provides an insight into a type of immunotherapy (treatment which helps the immune system to recognise and kill cancer cells) called adoptive T cell transfer which is currently being studied in myeloma. The immune system It is widely known that our immune systems protect us against microbes such as bacteria and viruses; human beings simply cannot survive without a way of defending themselves against the relentless barrage of infections which we all encounter every hour of every day. However, as our understanding of the immune system has grown it has become clear that it has a surprising trick up its sleeve and can do something perhaps even more impressive: it can fight cancer. The immune system is ingenious, incredibly sophisticated and even for researchers specialising in this area, staggeringly complex. It comprises a vast number of different cells, molecules and structures, each of which plays a particular role in the coordinated immune response. Neutrophils, for example the cells doctors often talk about during chemotherapy treatment are able to recognise, engulf, digest and destroy invading bacteria. Natural killer cells can kill microbes by puncturing them with molecule-sized weaponry. Complement proteins and antibodies work as marker molecules that paint red flags on germs to draw the attention of other immune system cells. B cells are cellular factories that pump out huge quantities of protective antibodies to neutralise microbes and their toxins. Like the players in an orchestra these individual components act not in isolation but as an intricately interconnected network. In reality there is a far, far longer list of players, and actually many of them may have roles in battling not only infection but also cancer. However, for the purposes of this article, we will focus on the T cell. THE PROSPECT OF OFF-THE-SHELF CAR-T CELLS FOR MYELOMA SEEMS LIKELY WITHIN THE NEXT FEW YEARS. What is a T cell? The T cell is one element of a highly specialised part of the immune system known as adaptive immunity, which has the ability to learn and remember its enemy. Although our bodies contain innumerable T cells, each one is unique and during its development has learned to recognise and attack a very specific target or antigen, and nothing else. The antigen might, for example, be a particular part of the chickenpox virus, or one of the proteins of hepatitis B. T cells are able to focus on a single target in this way by using a specialised protein called a T cell receptor, which is subtly different on each T cell and only ever recognises one antigen. When T cells encounter their target (i.e. their T cell receptor binds to its antigen), they begin to attack it and recruit other immune cells to help them. At the same time they also give rise to memory T cells which live on in the body after an infection has been cleared and act as sentinels, constantly watching for the reappearance of their target. If the same infection should ever be encountered again these memory T cells rapidly activate and produce a faster and more powerful attack against it this is how we become immune to infections we ve had before. What does this have to do with myeloma? As hinted at the beginning of this article, although our understanding of T cells function has focused on their ability to recognise and attack infection, there is now increasing evidence that the laser-precise attack of the T cell can also be turned on cancer cells. For example, T cells have been found in the bone marrow of individuals with early stages of myeloma and it has been shown that these T cells can attack the myeloma cells. We also know that when donor (allogeneic) stem cell transplants are used in the treatment of myeloma, much of their effectiveness comes from the fact that T cells from the donor can attack the myeloma. The allure of harnessing memory T cells that can attack myeloma is significant, as such cells could produce a long-lasting immune effect. The challenge is that myeloma cells have a number of ways to hide from and subvert the immune system, meaning that a patient s own T cells are not able to control the disease. A huge amount of research has therefore gone into finding ways of boosting the effect of T cells within myeloma patients. Adoptive T cell transfer is one such approach currently being explored in myeloma. Winter 2016 Myeloma Matters 13

14 What is adoptive T cell transfer? In adoptive T cell transfer, T cells are collected from a patient s blood and treated to boost their ability to attack myeloma cells; these boosted T cells are then given back to the patient (See Figure 1). A number of different ways of doing this are being investigated. For example, one approach is to collect a sample of bone marrow from a myeloma patient; from this mix of cells the T cells that are already battling the myeloma within the patient s body can be separated out and then grown in the laboratory to produce large numbers of anti-myeloma T cells. This army of expanded cells can then be re-infused back into the patient to attack their myeloma. This strategy has been shown to be safe, and has had some successes, but it has drawbacks - in particular it relies on being able to find enough competent T cells in a patient s bone marrow that can attack the myeloma, which can be difficult because of myeloma s ability to escape from or sabotage naturally occurring T cells. A new technology known as chimeric antigen receptor (CAR) T cells is a huge leap forward and seems likely to completely change the landscape of adoptive T cell transfer. Using this technology it is possible to collect T cells from cancer patients and genetically modify them in the laboratory so that they carry an artificially manufactured T cell receptor. The artificial T cell receptor is designed and chosen so that it is able to specifically target proteins carried only by the cancer cells. Large numbers of these cells can then be infused back into the patient. When the artificial T cell receptor recognises its target on the cancer cells, the CAR-T cells are activated 1. T cells are removed from patient 2. genetic modification of T cells DNA modified gene T cell Figure 1. Mechanism of action of adoptive T cell transfer and attack the cells. CAR-T cells have already shown impressive results in other blood cancers, such as acute lymphoblastic leukaemia, and early results from treatment of myeloma patients are extremely exciting. Will adoptive T cell transfer soon be available? What are the limitations? Whilst the recent advances in adoptive T cell therapies have been massive, in truth work remains to be done before such treatments can be widely available. For example, further work is still in progress to help identify what the best targets are on the myeloma cell to target with the artificial T cell receptor this may be different for each individual patient or even at different time points during their treatment. In addition, the need to harvest, modify and grow T cells from each patient individually means the process is currently very time-consuming, expensive and requires highly specialised resources and skills. It also needs to be proven that these cells are safe, as they may live on in the body for a long time. Nonetheless, work to address 4. T cells target and kill myeloma cells 3. patient receives modified T cells these and other limitations in a range of different ways is well underway and the prospect of off-the-shelf CAR-T cells for myeloma seems likely within the next few years. Looking to the future Adoptive T cell transfer treatments have progressed enormously over the last decade and even with the current limitations and concerns offer the real prospect of a new highly effective myeloma treatment in the coming years. It is important to remember though that as our understanding of the role of the immune system in cancer is evolving, research also continues apace to harness not just T cells, but other aspects of the immune system to fight myeloma check point inhibitors, antibody therapies, anti-cancer vaccines, cytokine treatments and oncolytic viruses to name but a few. Adoptive T cell transfer therefore takes its place in a wide range of new immunotherapy treatments, which are set to broaden the arsenal of treatments for myeloma over the coming years. To find out more, order your copy of our Immunotherapy in myeloma Infosheet today 14 Myeloma Matters Winter 2016

15 MYELOMA SPECIAL RESEARCH FEATURE Perspectives from a newly qualified doctor In the Spring 2015 edition of Myeloma Matters, we interviewed Michael Shipton, a medical student with a special interest in myeloma. We now catch up with him as a newly qualified doctor who has just returned from a medical placement in Australia. As a newly qualified doctor, how prepared do you feel to treat patients? I really enjoyed medical school, but learning from textbooks can only take you so far in terms of diagnosing and treating patients. In the year since I qualified, I have gained so much experience in dealing both with acutely unwell patients and those with long-term conditions, and have gained a great deal of confidence compared to when I first started working. I hope that this will continue as I progress through my Foundation Year 2 and into Core Medical Training. What do you think of the progress in myeloma treatment since we last spoke to you? I think it s a really exciting time. An array of new treatments for myeloma have been proving themselves in clinical trials in the last year, such as newer types of immunomodulatory drugs and proteasome inhibitors, and also the monoclonal antibody drug Darzalex (daratumumab). Darzalex has demonstrated the most impressive results in clinical trials so far and I hope that it is only a matter of time before patients in the UK can benefit from this new drug that has such great potential. You re just back from a placement in Australia - how did its healthcare system compare to the NHS? The Australian healthcare system is similar to ours, but with a few key differences. It has a much larger private sector, with doctors dealing with both public and private patients in the same hospital. In addition, different health services operate in the same state, resulting in differences in treatment and cost depending on which hospital you attend. Two of the best things about the NHS are that it is free and each patient receives the same care no matter which hospital they attend; for these reasons, I feel that the NHS is the better healthcare system. Has the work you carried out in Australia influenced you? I personally gained a better understanding of how to conduct a clinical research project. In Australia, I looked at an old chemotherapy combination called DCEP with or without the addition of thalidomide to see whether there was any benefit prior to high-dose therapy and stem cell transplantation in myeloma patients. The results were respectable but better response rates are seen with the more commonly used combinations such as CTD, which we use here in the UK. I will carry my experience gained in Australia forward by undertaking similar projects here in the UK. What are your career plans following the research project you undertook in Australia? Both the clinical placement and research project have confirmed my desire to undertake a career in haematology, with a strong focus on research. Besides my interest in the speciality itself, I like that haematologists develop a close relationship with their patients, particularly those with cancers such as myeloma, which require some inpatient treatment and regular follow-up. We thank Michael for his thoughts and wish him well in his continuing career in haematology. Winter 2016 Myeloma Matters 15

16 A LIFE IN LIMBO: A MYELOMA UK STUDY ON THE EXPERIENCES OF MYELOMA CARERS IN THE UK BY DR JAYNE GALINSKY Health Services Researcher, Myeloma UK Patients often talk on the Myeloma Infoline or at Infodays about how they wouldn t manage dealing with all that myeloma throws at them without the practical and emotional support of those close to them. These individuals, or carers, who provide informal care and support to patients, play hugely important roles in improving the quality of life of their relatives and friends with myeloma. We know that myeloma can considerably affect their lives too. Myeloma UK recently conducted a piece of research to find out more about the experiences of the workforce of myeloma carers across the UK. A bit more about why Myeloma UK carried out this research Myeloma UK commissioned Picker to conduct this research to help deepen our understanding of the important role that carers play in supporting myeloma patients, and to point us towards new ways of providing support and information to carers. We also wanted to respond to the gap in the academic literature around the role of carers in myeloma. Research has examined this in other cancers, but little is known about the emotional and practical experiences of carers of myeloma patients. 374 family members and friends took part in our Who cares? survey which asked questions about what kind of support they provided and what aspects of the caring role were most difficult. Twenty participants were also interviewed to further deepen our understanding of some of the issues raised by the survey findings. What were our key findings? Emotional and psychological issues 98% of carers said that providing emotional support was the most common aspect of their caring role. Our findings show that looking after a relative or friend with myeloma involves the carer taking on a variety of roles. Although the physical aspects of caring were important, providing emotional support for example talking and listening to the patient through periods of anxiety was the most common aspect of the caring experience. I find the psychological support more difficult than the physical side, because when somebody gets down in the dumps, it s just a horrible time. The thoughts that go through their head and the things that they say are awful. 94% said the emotional impact of caring for someone with myeloma was having the biggest effect on their lives. The uncertainty that myeloma brings contributed a big part of the emotional impact on carers. In interviews, carers reported that it was difficult to adjust to being so uncertain about the future and living day to day. They said that they sometimes felt upset or angry that life would not be as they planned. Some described a sense of anger and frustration at having to give up certain hopes and plans for the future. Others described a sadness caused by observing what their relative or friend has lost as a result of having myeloma. I feel angry that I m not going to get the future I wanted, but the hardest thing to feel is how my life at the moment is in limbo. 16 Myeloma Matters Winter 2016

17 MEDICAL RESEARCH MATTERS 89% of carers also felt like they always had to be positive. Carers also said they felt that they always needed to be positive around the patient. Some said that striving to do this had a considerable strain on them. I think because when I m with Dad you just have to put on this persona that, oh it s fine, everything s OK, but when I m away from him that s when the worry sinks in. The perspective and attitude towards it that I have in front of him and away from him are two totally different things. Financial worries 50% of carers who were in work said that they had been unable to work or had to retire early to care for the patient. For many carers, the actual or potential loss of income was the main source of financial worry raised in our research. Many of the younger carers who took part in our survey said they had been unable to work or had to retire early due to their caring role. For some, this had a double impact if the patient was also no longer in work. Some interviewees explained that a loss of work or income had a knock-on effect on other areas of their lives, increasing the likelihood of social isolation or experiencing stress and anxiety. He worries about the money, we both worry about the money, and you can t go sick, because you'd be on half pay The financial pressure is massive. We cannot pay the mortgage if he s on half pay. 94% of carers had not received a carer s assessment. By law, all carers are entitled to a carer s assessment. The assessment is an opportunity to discuss with the local authority what support or services could make caring easier, for example financial assistance or more practical support. Although most of the carers who took part in our survey were impressed with the medical care and attention their family member or friend received, many indicated that they would have liked more support to deal with the practical and financial implications of caring. Information and support for carers 58% of carers often felt like they had nobody to talk to. Our findings suggest that those who provide support and care for myeloma patients are not currently receiving, or do not have access to the support that they need for themselves, with only 6% of participants who attended medical appointments with their relative or friend being asked how they were by healthcare professionals. Sometimes it s like you re invisible. Of course it s all about the patient, but at the same time to have a little bit of support would be nice. 42% of carers were not given enough information about how myeloma may affect them. Over two-fifths of carers in our survey were not given enough information about myeloma and how it might affect them when the patient was diagnosed. Carers talked about feeling unprepared for what would be involved in supporting someone with myeloma and in some cases wanting more information about myeloma than the patient themselves. I need information to be able to process how to pitch things to the children, to family and to myself. At the end of the day I need to manage expectations across everyone. It can be very difficult to do that when the information you re getting yourself is limited. 73% of carers mentioned Myeloma UK as a source of helpful information, including the Myeloma UK website, Infodays and Myeloma Infoline. Conclusions Our research showed that carers of myeloma patients take on considerable caring roles, and for many this involves significant changes and challenges. The findings have helped Myeloma UK better understand the issues we, among others, need to tackle. Among several new projects in progress, Myeloma UK launched an Infopack for carers of myeloma patients in November. This pack was directly informed by our research. We are confident that this research and our new Infopack will be of particular interest to carers, both those who participated in the research and others who may recognise their own experience within aspects of the findings. We hope it will show carers that they are not alone and encourage them to seek information and support from Myeloma UK and others. Myeloma UK extends its gratitude to everyone who contributed to this research. We will continue to develop, improve and extend the reach of our own services for carers. To order a full copy of the Life in Limbo report and your copy of our new Infopack for carers, call the Myeloma Infoline on Winter 2016 Myeloma Matters 17

18 ASK THE NURSE Ellen Watters RGN Myeloma Information Specialist, Myeloma UK Myeloma UK receives many questions from patients and family members about myeloma and its treatment and care. These come from many places, including the Myeloma Infoline, at Infodays, the online Discussion Forum and Support Groups. In each edition of Myeloma Matters Ellen answers a selection of the most frequently asked questions. 18 Myeloma Matters Winter 2016

19 ASK THE NURSE What is osteonecrosis of the jaw? Osteonecrosis of the jaw (ONJ) is a rare condition in which the bones of the jaw become damaged leading to exposed bone in the mouth. Symptoms may include pain, loosening of teeth, a heavy or numb feeling in the jaw, swelling of the gums, non-healing following a tooth extraction and sometimes a discharge of pus. The causes of ONJ aren t entirely clear, however the risk of ONJ appears to be related to long-term treatment with certain types of bisphosphonates which are used to strengthen and protect the bones in myeloma. There are known risk factors for ONJ, which include: Type of bisphosphonate ONJ is more likely to occur with the use of intravenous (IV) bisphosphonates (zoledronic acid and pamidronate) Duration of treatment ONJ appears to be much more likely to occur in patients who have been on bisphosphonate treatment for over 3 years than in those who have had treatment for less than a year. Some haematologists will stop treatment with IV bisphosphonates after two years if a patient s myeloma is stable and will restart at relapse Dental treatment most ONJ cases arise after invasive dental treatment such as tooth extraction, but not routine dental work such as fillings or root canal treatment ONJ is also more common in older people, those with a history of gum disease, mouth infections and in those who wear dentures Prevention is the best approach to the management of ONJ. As a precaution, patients receiving IV bisphosphonates should have regular dental check-ups and be vigilant about their dental hygiene. Treatment for patients who develop ONJ will include antibiotics to clear up any infection and pain-killers to ease any pain. What is shingles and can patients be vaccinated against it? Shingles is a reactivation of the chickenpox virus. When people get chickenpox, the virus remains in the body. It can be reactivated later and cause shingles if someone s immune system is lowered. Myeloma patients who have had chickenpox previously may be more susceptible to shingles due to their weakened immune system. The blisters of shingles contain live virus. You can t get shingles from someone with shingles or chickenpox. However, you can get chickenpox from someone with shingles, if you haven t had chickenpox before. If a person who has never had chickenpox makes direct contact with an open blister or something with the fluid on it, they can contract the virus and develop chickenpox. The shingles vaccine (brand name Zostavax ) is a live vaccine which means it contains a weakened form of the chickenpox virus. Myeloma patients generally have weakened immune systems and may not be able to mount a sufficient immune response to the very small amounts of live but weakened virus contained within the vaccine - this puts them at risk of developing the actual infection. Therefore, it is recommended that myeloma patients do not have the shingles vaccine, or indeed any live vaccine. What is hypercalcaemia? Hypercalcaemia is a complication of myeloma bone disease which causes there to be a higher than normal level of calcium in the blood. Myeloma bone disease occurs when the myeloma cells in the bone marrow affect the surrounding bone, causing the bone to be broken down faster than it can be repaired. Bone is high in calcium and as it is broken down, calcium is released into the blood. Once the body s ability to maintain normal levels is overwhelmed, calcium levels in the blood remain high, resulting in hypercalcaemia. Hypercalcaemia can cause a variety of symptoms including: loss of appetite, nausea, vomiting, constipation, increased thirst, confusion, general weakness and tiredness. Up to 90% of patients will have some bone disease during the course of their myeloma. However, not all patients with myeloma bone disease will become hypercalcaemic - it is more commonly an issue when the myeloma is particularly active i.e. at diagnosis or at relapse. Hypercalcaemia is much less common once treatment has started or the myeloma is under control. Calcium levels are regularly monitored alongside patients other blood tests. Treatment for hypercalcaemia is aimed at reducing the calcium levels and managing any symptoms caused. Bisphosphonates such as zoledronic acid are used in the treatment of hypercalcaemia. In preventing and slowing the breakdown of bone, bisphosphonates stabilise calcium levels, which both prevents and corrects hypercalcaemia. If you have a question, contact our Myeloma Infoline on or from Ireland Winter 2016 Myeloma Matters 19

20 LIVING WELL WITH MYELOMA BY SELENA HALLAHAN Patient Information Officer, Myeloma UK This feature looks at how to avoid infection; tips for managing bowel problems; and coping with anxiety and depression. 20 Myeloma Matters Winter 2016

21 LIVING WELL WITH MYELOMA HOW TO AVOID INFECTION Infection is one of the most common complications of myeloma - patients are up to ten times more likely to get an infection than the general population. However, taking some simple preventative measures can reduce this risk. What is an infection? An infection is when a foreign organism, such as a bacteria or virus (commonly called a germ ), gets into the body and begins to multiply, causing illness. Usually, the immune system (the body s defence system) will kill the germ before it causes illness, but sometimes the germ can survive long enough to cause infection and illness. Infection is more common in myeloma patients because myeloma and its treatment can reduce the immune system s ability to fight infection. How does infection spread? Many germs are airborne and can be spread by coughs and sneezes. Germs can also enter the body through skin-to-skin contact, particularly where there is broken skin, or through consuming contaminated food or drink. What are the signs and symptoms of infection? Common symptoms of an infection include fever (temperature above 38 C), chills and sweating, coughing and sneezing, pain when passing urine, diarrhoea, nausea/vomiting and redness, swelling or pain in any area. Some infections need to be treated immediately with antibiotics. It is therefore important to be aware of the signs and symptoms of infection and to immediately report any symptoms to a doctor or nurse even if this is outside of their usual office hours. How can patients reduce the risk of infection? Reducing the risk of germs entering the body reduces the risk of infection and getting ill. Patients can take some simple steps to slow or stop the spread of germs: Wash hands regularly, especially before eating. This is the most important factor when it comes to avoiding infection Practice good food hygiene eat only fruit/vegetables that have been washed or peeled, and use separate chopping boards for meat and vegetables Avoid raw or undercooked eggs or meat and unpasteurised food (e.g. some soft cheeses) Keep skin well moisturised to reduce skin cracks and wounds Disinfect cuts and wounds and keep them covered Practice good mouth hygiene, using antimicrobial mouthwash if necessary Don t share personal items such as towels, toothbrushes, razors or handkerchiefs Avoid crowds or anyone with obvious signs of infection (e.g. coughing and sneezing) and ask those with a cold or flu to stay away until they are back in full health Get vaccinated and ask close family and friends to get vaccinated also. It is recommended that myeloma patients have the flu vaccine each year and a pneumococcal vaccination every five years Summary Myeloma patients are at greater risk of infection than the general population but can reduce the risk by taking some simple practical steps such as washing their hands regularly and being vaccinated against seasonal flu. Being vigilant for the signs and symptoms of infection and reporting any immediately to a doctor or nurse is very important. For more information about vaccinations and myeloma, see the Vaccines and myeloma Infosheet from Myeloma UK. Winter 2016 Myeloma Matters 21

22 LIVING WELL WITH MYELOMA TIPS FOR MANAGING BOWEL PROBLEMS Though not often talked about, constipation and diarrhoea are very common in myeloma and can greatly impact on the quality of life of patients. In this article, we identify some simple ways to prevent and self-manage constipation and diarrhoea, should they occur. Constipation Constipation is usually diagnosed when the bowels are moving less than three times a week. When constipated, bowel movements may be dry, hard and painful. In addition to being a side-effect of certain myeloma treatments, constipation can be caused by poor diet, dehydration or a lack of exercise. Emotional troubles, for example anxiety, depression or stress, can also cause constipation. Here are some steps that patients can take to prevent or self-manage constipation: Eat more food high in fibre, for example fruit, vegetables, branbased cereals and wholegrain breads Eat fewer refined foods, such as microwave meals, white bread and sugary treats Eat small meals frequently throughout the day Explore natural remedies such as fibre supplements, linseed oil and magnesium tablets, which can successfully ease constipation. Patients should always speak to their doctor before trying any natural remedies as they may interfere with other treatment Take regular gentle exercise, which can keep the muscles around the stomach and intestine functioning properly If required, patients can also be prescribed laxatives such as Senna or Fybogel to treat their constipation. Diarrhoea Diarrhoea is the passing of loose or watery stools more than three times a day. Like constipation, diarrhoea can also be brought on by stress and anxiety and is also unfortunately a common side-effect of many myeloma treatments. Certain bacterial and viral infections can also cause diarrhoea. It is important for patients to tell their doctor or nurse if they suspect their diarrhoea is caused by an infection, for example if they have been around someone with a stomach bug. This is so that treatment, if necessary, can be started promptly. Here are some steps patients can take to manage diarrhoea: Drink plenty of water to keep hydrated. Diluted juice drinks and herbal teas are also fine, but avoid alcohol and coffee Eat salty foods (e.g. broths, pretzels) and foods high in potassium (e.g. bananas, sweet potatoes) to replace lost salt and potassium Eat small light meals (white fish, chicken, well-cooked eggs etc.) slowly and frequently throughout the day Avoid very spicy or fatty foods Drink 30 minutes after eating, rather than with food Rest for 30 minutes after eating to slow down the digestive system Diarrhoea can occur on its own or can be a result of constipation if the bowel is blocked with hard stools. Therefore, patients may be prescribed laxatives as well as anti-diarrhoeal tablets (e.g. Imodium, Loperamide). Patients need to be honest with their doctor or nurse about the impact that constipation or diarrhoea is having on their life and report it as early as possible they are there to help. Summary Bowel problems are common in myeloma. They can be a difficult or embarrassing topic for patients to talk about, but remember that doctors and nurses are used to discussing this type of thing and that they are here to help. Patients can help manage their bowel problems, particularly by paying close attention to what they eat and drink. For more information, see the Diarrhoea and Constipation Infosheets from Myeloma UK. 22 Myeloma Matters Winter 2016

23 LIVING WELL WITH MYELOMA COPING WITH ANXIETY AND DEPRESSION A survey carried out by Myeloma UK in 2013 found that 34% of patients have experienced depression and 54% have experienced anxiety. Also, as shown on p16-17, our recent research has highlighted the significant emotional and psychological effect on those undertaking a caring and supporting role for patients. What are anxiety and depression? Anxiety is a feeling of unease, such as worry or fear, which can be mild or severe. Some people find it hard to control anxious feelings and these can often affect their daily lives. Depression is an ongoing feeling of hopelessness or despair which can cause a loss of interest in most activities, including those you previously enjoyed. Difficulty sleeping, trembling and tearfulness are also symptoms of depression. The unpredictability of myeloma, treatment side-effects and even just the feeling that life has become an endless doctor s appointment can sometimes trigger anxiety and depression in both patients and their carers. Emotional well-being is as important as physical health. The following tips can help both patients and carers to take charge of their emotions: Speak out It is important to be frank about how you are feeling. Your doctor can refer you to a counsellor or psychologist, and you may find it useful to attend a support group with other myeloma patients and their carers who understand what you are going through. You can also talk to one of our Myeloma Information Specialists by calling the Myeloma Infoline on or from Ireland. Don t be afraid to talk to someone this can be a counsellor rather than a friend or family member, sometimes it s easier to talk to someone outside of your immediate family and friends. Inform yourself Sometimes, anxiety or depression can be due to feelings of helplessness. Myeloma is a complex cancer to understand - learning more about it and the different treatment options available may make you feel more in control. It is important to use reputable sources of information. Myeloma UK provides a range of information covering all aspects of myeloma. For a full publication list visit www. myeloma.org.uk/publications Be proactive and try to get as much information about myeloma and your treatment as possible. I was told early on by my doctor that I needed to take control as much as possible. Work out Even gentle exercise such as gardening or a short walk around the block releases endorphins that may ease feelings of depression or anxiety. Exercise as often as you can. I try and do a bit every day, it makes me feel and sleep better. Distract yourself Taking up new hobbies or rediscovering old ones can be a huge help in regaining self-worth and purpose. It can also help to have something enjoyable to look forward to, whether it is taking a trip somewhere new or simply having tea and cake with an old friend. Rediscover old passions I often play my records very loudly which makes me very happy! Summary Many myeloma patients and their carers experience depression and anxiety. It is important to keep in touch with how you are feeling and to take action if you find are feeling down more often than not. The quotes in this article are from The small things make all the difference order your copy today from Myeloma UK. Winter 2016 Myeloma Matters 23

24 PATIENT EXPERIENCE MY LIFE WITH MYELOMA NAME: Ed Jones LIVES: Prestwich, Manchester AGE: 69 I m Ed Jones and I live in Prestwich Manchester. I ve been married to my wife Joanna for 25 years and we have two beautiful children. I enjoy my football, more watching than playing these days and I have an interest in aircraft, particularly the Vickers Viscount and I carry out research for the global website The Vickers Viscount Network. Back in November 2006 whilst working as an IT consultant, I began losing my voice whilst presenting an IT training course. I put it down to the many years of training courses I had run, where I had spent 8 to 10 hours talking every day. My GP gave me antibiotics and said, If it doesn t go in a week come back. Suffice to say my voice did not come back and my GP referred me to the North Manchester General Hospital (NMGH) for a scan. The results showed that I had a plasmacytoma on my larynx. The consultant explained that it could be the early stages of myeloma although no further tests were done at this stage. After a few cycles of cyclophosphamide, thalidomide and dexamethasone (CTD), along with further drugs to combat side-effects of the treatment, the plasmacytoma was considered small enough to begin radiotherapy. When I attended the Christie Hospital (Manchester) for my first radiotherapy appointment, I was sent to the mould room where a mould of my face and neck was taken to make a mask for the radiotherapy. This involves a warm rubber mould being placed on your head and face with a triangular shaped opening to aid breathing. Nurses use their hands to mould the mask to every crevice in your face. To allow radiographers to precisely line up the lasers used in radiotherapy, they tattoo the mask with the target areas. The rubber mask is fitted with a series of studs around the perimeter and in order to keep your head fixed still during the process you are literally fastened to the table. I found this very restrictive as you are asked not to breathe or swallow until the radiotherapy is completed. After each treatment I found that I couldn t speak, in fact I was told by the consultant that there was a chance of loss of voice. Thankfully I found that I could control the movement of my larynx in such a way that I could at least make a noise after 10 minutes. I had 20 sessions of radiotherapy - Monday to Friday for four weeks and it was the toughest treatment I have endured in all my 10 years since diagnosis. The side-effects from the radiotherapy on the soft tissue of your mouth and throat causes pain whenever you swallow. After treatment was completed, the plasmacytoma had reduced to the extent that I had my voice back and I returned to work. I was initially relieved that the treatment had worked; however, as all cancer patients know, there is always a thought in the back of your mind that it may return or progress into something worse. Psychologically it never goes away. In medical terms, there followed around 12 months of fairly trouble free life until in Dec 2007 when I began to limp significantly. I returned to the NMGH to have a full body scan and on Christmas Eve morning I received the dreaded phone call to say I had myeloma. The scan had shown a large plasmacytoma in my right femur which was eroding the bone to the extent that it was no longer self-supporting. I spent most of Christmas Eve at the hospital discussing the news and coming to terms with what I had been told. Finally around 3pm we left the hospital and I suddenly remembered that we had a Christmas Day meal to organise for 16 family members the following day. There then followed a mad dash to the supermarket to find what fresh vegetables we could. Thankfully the meal was a great success. 24 Myeloma Matters Winter 2016

25 PATIENT EXPERIENCE Winter 2016 Myeloma Matters 25

26 PATIENT EXPERIENCE Over the next few days the family came to terms with the devastating news that I had myeloma and although there were a few tears, we got through it. My wife and I decided to tell the children that I was ill but to withhold the full extent of what was happening - that would come later. Treatment for the myeloma could not begin until the operation had been done, so in the January I attended surgery at the NMGH to get a metal support attached to the bone from my hip to my knee. Once again, I had to undergo another 20 sessions of radiotherapy over four weeks. The treatment itself does not take a great deal of time however I do live quite a few miles from the hospital and travel and waiting times takes its toll. I had to write off most of the day Monday to Friday for the duration of treatment. During the next few months further plasmacytomas were found in my chest area and after two more sessions of radiotherapy the decision was taken to go for high-dose therapy and a stem cell transplantation (HDT-SCT). This involved harvesting stem cells from my blood and placing them in deep freeze for use later. I began injecting drugs known as granulocyte-colony stimulating factor into my abdomen in order to promote the growth of stem cells and subsequently visited the Christie for the stem cell harvest procedure. The process took most of the day and was successful in that it resulted in enough stem cells for two transplants. I went into the Christie in the April for the HDT-SCT. The first port of call was a series of tests on my heart and lungs to ensure I was strong enough to undergo the treatment. The first thing they take into account for this type of treatment is your age. If you are over 65 there is a chance that you could be refused, thankfully I did not come into that category at the time. After the treatment, I was in isolation for 23 days in total and found the side-effects particularly demanding. Initially you are given high-dose chemotherapy where you are on a drip for 23 hours, this is followed by the introduction of your stem cells which is always a worrying time. After some 4 or 5 days the side-effects of the chemotherapy begin to take over. All I can say is that you lose an awful amount of body fluids very quickly. I left the Christie after just over three weeks which resulted with me being in remission. In 2013, nearly four years after the HDT-SCT, the plasmacytomas had returned and whilst on a family holiday to Spain I suffered broken bones in both my arms. I had further surgery to strengthen them with metal rods (no wonder my favourite music is heavy metal ) and then I had a second HDT-SCT. Once again my heart and lungs were tested to ensure that I was fit for the HDT-SCT. The consultant decided that my stored stem cells would be used so there was no harvesting procedure to go through. My time in hospital was shorter this time at 16 days, and I knew what to expect. However, it didn t make it any easier. Everything seemed to come at the same time - initially I had a reaction to the introduction of the stem cells. Thankfully this was only due to the preservative in the stored cells but following that were 10 days of side-effects from the high-dose chemotherapy. It s a fantastic way to lose weight, although I would not recommend it to anyone! I weighed 84 kilos on admission and came out weighing 69 kilos. Thankfully I have been in remission for the past three years, with my paraprotein levels nil or low. Since being diagnosed with myeloma I have had bone pain and severe tiredness, I have also had side-effects from various treatments including peripheral neuropathy caused by Velcade and thalidomide. I found the Velcade a particular problem and only managed to get through 4 cycles of the proposed 6 due to side-effects. I currently find it increasingly difficult to walk more than 50 yards and feel that although I was always opposed to using a wheelchair I will have to reconsider. Along with the physical demands of myeloma, like many cancers, you have to deal with the psychological effects too and that s where you appreciate all the support around you. Over the last 10 years I have been supported by a caring wife and two wonderful children. One of my passions is to support others affected by myeloma through meetings and support forums. I find that not only the physical sides of the disease are a problem for patients, but also the psychological side is very important, and getting that right aids recovery. I am a long-term member of the local Myeloma Support Group in West Pennine, and produce a newsletter for them every six weeks. We hold regular meetings at Bury Town Hall where we provide support and friendship to myeloma patients and their carers. Another way I support others is to help adults with learning difficulties through a scheme called Shared Lives. This involves a fostering programme where they are placed in homes 24/7 in order that they eventually learn to achieve a level of caring for themselves so they can move to controlled or independent living. Through the Macmillan forum for blood cancer I also respond to patients through the website, helping to alleviate some of the concerns they have about certain treatments and I attend Infodays and workshops run by Myeloma UK. 26 Myeloma Matters Winter 2016

27 Maisie s legacy ASK FUNDRAISING THE NURSE Maisie Stamper is one of the unsung heroes of Myeloma UK. She had no contact with Myeloma UK during her lifetime yet when Maisie passed away, aged 89, she left an incredible legacy of hope for myeloma patients by donating to Myeloma UK in her Will. Her friend Linda who has myeloma asked us to share Maisie s story. Linda met Maisie on her first day at work in 1964 when Linda was just 17 years old. Maisie was 20 years her senior but they hit it off immediately. Maisie didn t have children of her own and when her husband died 30 years ago, Linda looked out for her and became like a surrogate daughter. Maisie made her Will around the time her husband died, and asked Linda to be her executor. Linda didn t think much about it, My daughter was just 18 months old at the time and now she s 31 so it was a long time ago. Maisie was very healthy, I thought she d live to see 100. In 2012, Linda was diagnosed with myeloma and although she told Maisie that she had bone marrow cancer she never let on how ill she was because she didn t want to worry her friend, who by then was becoming quite frail. Linda was amazed when Maisie told her one day that she wanted to include Myeloma UK in her Will. I knew she wanted to support charities, but I felt so moved that she wanted to donate specifically to myeloma research - I want them to find a cure for you - was what she told me. Since Maisie passed away in January, Linda has started treatment with Revlimid and is responding well. She is grateful for every donation that has funded research into the treatments available today, and hopes that patients will be able to look forward to even better treatments in future. I want to thank Maisie so much for what she has done for me and the thousands of other myeloma patients who are relying on further research into myeloma to find a cure. I don t think there s anything more profound you could do for someone you care about, than to leave a legacy that will help them once you re gone. Your legacy Leaving a gift to a charity in your Will is a really special way to support the causes that matter to you. Last year 28 people left Myeloma UK a gift in their will totalling an incredible 626,770 to support research into better treatments for myeloma and taking us one step closer to a cure. We are deeply grateful to each and every person who supports the work of Myeloma UK by leaving a gift in their Will. If you are considering making a charitable donation in your Will please get in touch. Contact Claire Durham, Individual and Planned Giving Manager on or claire.durham@myeloma.org.uk Winter 2016 Myeloma Matters 27