The pain became so unbearable that Barry had an MRI which revealed cancerous tumours along his spine, which were diagnosed as myeloma.

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1 The Leukaemia Foundation of Queensland Support Services Division presents Myeloma News Caring for patients and their families living with MYELoma Issue In this issue... Getting the most out of your doctors page 3 Living life with Myeloma As a fit 50 years old, Myeloma was the last thing Barry Kent suspected when he was diagnosed in early In fact he had no idea what it actually was. For several months before his diagnosis, Barry from Oakey, had been experiencing severe back pain which he put down to prolapsed discs, a condition that had been operated on nearly 10 years earlier. Living with Velcade pages 4-5 Leukaemia Foundation Villages page 6 Light the Night page 7 The pain became so unbearable that Barry had an MRI which revealed cancerous tumours along his spine, which were diagnosed as myeloma. The hardest thing for me was telling my grown up son and daughter that I had cancer. They came straight to the hospital to be with me, Barry said. Barry was admitted to the Mater Hospital in Brisbane to begin chemotherapy, which unfortunately was held up due breaking both of his shoulders in the shower as a result of the weakened state of his bones. I had both my shoulders operated on, ending up with eight pins in my right and seven pins in my left. The surgeon told me my bones were like butter as a result of the myeloma, Barry said. Following the surgery, Barry had five round of radiation, and chemotherapy was started despite his arms still being in slings. My shoulders were still very painful, but Dr Morton was keen to begin chemo as quickly as possible because my condition was very serious, Barry said. From March to December 2007 was like a roller coaster ride of chemotherapy, stem cell harvesting, blood transfusions, platelet transfusions, constipation, diarrhoea, vomiting, headaches, blood tests, bone marrow biopsies and stem cell transfusions. My weight dropped from 74kg down to 59kg. Barry Kent When Barry came home, he was able to continue his treatment at St Andrews Hospital in Toowoomba which was initially every day including tests, blood and platelet transfusions, Intragram and Zometa. Treatment then was scheduled for every second day and I was starting to eat and generally feel better. However I still had a long way to go. Eventually treatment became weekly and I started to exercise again, doing short walks. Barry started back to work a few mornings each week, and became full-time by June In August 2009 he competed in the Bridge to Brisbane fun run, running 10 km in around 60 minutes. Barry now visits the hospital every month for tests, Intragram and Zometa drips. My counts vary monthly, but Dr Morton assures me he has some tricks in his bag for me. I currently suffer extreme pain in my hands and feet from peripheral neuropathy. At work I have to wear firm gloves and socks which help ease the pain. Barry said his advice to other patients would be to try and stay strong and keep a very positive attitude. Being diagnosed with myeloma has made me realise how fragile life can be. I have 1 continued on page 2

2 From the editor Hello and welcome to my last newsletter for Wow what a year! Where has time gone? I can remember when I first started at the Leukaemia Foundation in I left nursing at the top my game. By that I mean I had reached a level where I was leading a ward of nurses and delivering high quality care and knowledge to my families who were undergoing treatment for various conditions. Starting at the Foundation, I thought I knew everything there was to know about caring for families. Well, I was so very very wrong. I knew only about 10% of a typical journey that a typical family would go through as a result of their diagnosis. However, there was one major problem. There is no typical family and there is no typical journey. I was to discover that every body s journey is so unique and complex, that my experience and knowledge needed to grow quickly and deeply. My new role involved spending time with families on a day to day basis; from diagnosis to death; dealing with relationship issues between husband and wife; parents and children; children and children; and everyone else in-between. At times, I felt I was sinking deeper and deeper into a hole. I felt I had no answers or nothing to offer. However, as the years passed, I continued to meet and work with truly amazing and inspiring people. I began to learn more and more about the journey, and more and more about people and about myself. This was the real journey. As my time with the Foundation comes to an end at this level, I would like to share the one thing that really stood out and touched me the most. Day after day, week after week, year after year, people around me constantly kept showing up. They show up for appointments, they show up to hospital, they show up to work, they show up at home, they show up for their relationships, and they show up for each other and themselves.they all kept showing up in the face of true adversity and pain. What I discovered was the real and authentic face of the human spirit. The Laws of Attraction have a law called the Law of Persistence. I would like to rename it as the Law of Showing Up. I now believe if you choose to show up in those times of hardship, pain, suffering, grief and fear, that you will eventually get the outcomes you deserve and desire, and you will discover just how magnificent you really are, and just how truly powerful and resourceful you can be. It has been my greatest pleasure, and an amazing journey to share with so many people, so in short I want to wish you all a very happy Christmas and a magical New Year. THANK YOU, FAREWELL and JUST KEEP SHOWING UP. Dean King Support Services Coordinator Leukaemia Foundation of Queensland Introducing new support services coordinator Scott Martin Hi everyone. I recently joined the Leukaemia Foundation as a support services coordinator, based at ESA Village in South Brisbane. In my role with the Leukaemia Foundation, I will be coordinating the Myeloma News newsletter and directing the multiple myeloma support groups. I have nursed in a number of hospitals in Brisbane including haematology units for approximately thirteen years, and twelve months in the intensive care unit at the Prince Charles Hospital. I began my haematology nursing at The Mater Public Hospital and then moved to The Wesley Hospital where I have been a clinical nurse in ward 4W since My professional interests include educating patients and their families about treatments and their side effects and how best to manage them. I enjoy gardening, sport and of course, coffee!! I have been married to my wife, Janelle for eleven years and together we have three beautiful children, Cale (6), Eva (4) and Lilah (2). I look forward to getting to know many of you in the near future. 2

3 Making the most of your doctors appointments At the Leukaemia Foundation we are often approached by patients, families and their carers seeking information about their disease. Most of these questions need to be answered by a medical specialist aware of their unique situation and therefore we would recommend for you to write down your questions and present them to your treating consultant at your medical appointment. People often comment that their specialists are pressured for time but by writing down your questions you can ensure that your needs are met. Some questions we think are valuable to ask include: What kind of myeloma is it? What stage is it at? In your opinion what is my prognosis? What are my treatment options? Which would you recommend for me? Are there any clinical trials that you would suggest for me? If so, will this mean being treated at another hospital? Is the treatment aimed at curing the disease or relieving symptoms? How does the treatment work? How will the treatment be given? When will the treatment be given and how often? Will the treatment have to be given in hospital, or can it be done on an outpatient basis? How can I prepare myself for treatment? Is there anything that I should or should not do during treatment? What does watch and wait mean? How often will I need check ups? What should I be looking for between check ups? How do we know if the treatment is working? What side effects might there be? Are there things I can do to avoid these side effects, or at least to minimise them? Can I drive? Can I carry on working? Can I continue with my education? Can I drink alcohol? Do I take my prescribed medication whilst on treatment? Can I continue to take other medicines (complementary, herbal, vitamins etc)? Should I get the flu injection? If I have any questions who should I call and when? Can a family member call you in confidence, with my consent? Will the treatment affect my fertility? If I wish to start a family how long will I need to wait following treatment? Can I have sex? Are there any foods I should or should not eat while on treatment? When will you know how well the treatment has worked? How often will you see me after treatment has finished? What complementary therapies can I have? Is there a support network? Is there any financial help available for people in my situation? Where can I go for more information? The Leukaemia Foundation s website org.au has links to other relevant sites as well as downloadable information about blood cancers and their impact on your life. 3

4 Government makes Velcade available to more patients Increased government funding for Velcade, a drug which helps prevent growth of cells involved in myeloma, has been welcomed by a leading medical expert at a major scientific meeting in Adelaide. Professor Miles Prince, Chair of the Myeloma Foundation s Scientific Advisory Group, said the government s decision to fund Velcade (bortezomib) for more patients with multiple myeloma would bolster the fight against this deadly cancer. Velcade will be subsidised on the Pharmaceutical Benefits Scheme from 1 November for multiple myeloma patients whose condition has progressed despite initial treatment. Until now patients have had to wait until they relapsed at least twice before gaining access to this therapy on the PBS, said Professor Prince. Patient groups also welcomed the news, with Dr Anna Williamson, general manager of research, advocacy and patient care at the Leukaemia Foundation saying, Myeloma is a very debilitating blood cancer with significant impact on quality of life. It s great news that there is another option available for people who have failed front-line therapies. The medication uses a unique mechanism to interfere with the ability of the cancer cells to function and spread. Unfortunately, there is no cure for multiple myeloma, but new medications like Velcade offer fresh hope for clinicians to manage the disease and help patients to live longer, with a better quality of life, said Professor Prince. The Government should be congratulated for providing earlier access to this therapy. While many patients receiving the therapy may not experience some of the side-effects associated with older chemotherapy drugs (such as hair loss), some patients may experience diarrhoea, nausea, fatigue or tingling or discomfort in the hands or feet. The side effects of Velcade are usually reversible. For more information about Velcade please refer to the Velcade Consumer Medicine Information: Current research and trends in myeloma The following is a summary of a talk given by Dr Kirk Morris at the Leukaemia Foundation s myeloma support seminar held at ESA Village, South Brisbane, on 5 May We are currently within an era of excitement and significant advancement regarding the diagnosis, prognostication, and especially therapy of multiple myeloma. The therapeutic revolution which has occurred with myeloma began with the recognition of high dose therapy with autologous stem cell transplant as the standard of care in patients in whom the treatment can be feasibly applied (dependent on age and existence of other medical conditions such as heart and kidney problems). Over the past 10 years there have been further significant advances with the introduction of novel agents such as thalidomide, bortezomib, and lenalidomide, which act in a more selective and directed manor compared to traditional chemotherapy. As is usual with new drug development when a well defined up-front therapy already exists (ie auto- transplant), their utility has been proven for patients with relapsed / refractory disease, however there is increasing research activity to support their use earlier within the treatment schedule. We still have much information to acquire, such as the appropriate sequence and combination of these newer agents, and their roles both with autologous stem cell transplantation and in those for whom such high dose 4therapy is deemed inappropriate. Because they work by different mechanisms to standard chemotherapy agents, somewhat different and potentially significant toxicities can occur, which again requires ongoing research to determine the most appropriate ways of avoiding and managing such toxicities. The old dogma that has previously led us to inform our patients that their median survival from diagnosis of myeloma is only 3 years is certainly being questioned. There does however remain a proportion of patients who appear to have particularly aggressive myeloma where survival remains very short despite the development of new therapies. There is active research which is aimed at defining specific factors (most notably as cytogenetic characteristics) that may identify patients who will have very poor prognosis myeloma, and then further research to identify ways that treatment can be specifically tailored to different risk groups. Although the currently available novel agents have markedly improved outcomes, research into new therapies has not stopped. New therapies continue to be developed including next generation thalidomide derivatives and proteasome inhibitors, monoclonal antibodies, histone deacetylase inhibitors, immunotherapy, and more. We as clinicians and you as patients can look forward to an ongoing era of advancement in the management of myeloma. Dr Kirk Morris Haematologist, Royal Brisbane Hospital

5 Explaining MGUS What is MGUS? MGUS is a term which refers to Monoclonal Gammopathy of Unknown Significance. This condition is characterised by the production of an abnormal protein by the plasma cell. The plasma cells are cells in the bone marrow that produce antibodies to fight infection. The abnormal protein produced by the plasma cell is called either a M protein or paraprotein. This abnormal protein is found in the blood and is monoclonal. Monoclonal means that it is being produced by one cell and they are all identical copies of each other. MGUS can be referred to as a benign condition as it does not represent cancer. There is, however, a small risk that MGUS can develop into Multiple Myeloma or a related blood disorder. The average risk of progression to active Myeloma is about 1% per year. Most people who develop problems do so about 10 years after their initial diagnosis. Lifelong monitoring to detect any increase in the paraprotein level and development of symptoms is required. Incidence MGUS mainly effects the elderly population. The risk of MGUS increases as you get older. About three percent of people age 50 and older and five percent of people aged 70 and older have M protein in their blood. The highest incidence is among adults aged 85 and older (2008 Mayo Foundation for Medical Education and Research). Causes The cause of MGUS is unknown. Symptoms There are rarely any symptoms associated with MGUS. Diagnosis The condition is usually detected from a person having a blood test as part of a routine check up. The diagnosis is then confirmed by having a particular blood test called a serum electropheresis test which identifies the abnormal antibody. Clinical features Less than 10% plasma cells in the bone marrow Low level of protein - less than 30g/l No bone damage Normal calcium levels No anaemia Very little or no protein in the urine Normal kidney function Treatment and monitoring Treatment for MGUS is not usually required. Monitoring is recommended. Monitoring of MGUS includes regular clinical assessment and follow up measurement of serum protein. It is recommended the serum protein be checked after three months and then again at six months to establish a firm diagnosis of MGUS. If the paraprotein has remained stable it then may be checked annually. Next five years exciting for advancing myeloma treatment There are 40 drugs in development that are targeting myeloma according to Kenneth C Anderson, MD, from the Harvard Medical School in Boston. Chairing a symposium held during ASH 2008 in San Francisco last December, Dr Anderson said 2008 had been an exciting year. In 2008 there were five new FDA approvals and three new drugs in Phase III clinical trials that are expected to be available in the next few years. In the introduction to the symposium, Debating the Key Clinical Questions for the Management of Patients with Multiple Myeloma, he said overall survival had significantly increased. Now we have novel therapies that allow a complete response, Professor Anderson said. The last five years have been fantastic, but the next five years will be even better. According to the symposium abstract, the general consensus is that a patient with myeloma has the best chance for an optimal outcome if they participate in a clinical trial. Enrolment in a clinical trial is an option at every stage of the disease, not just after all other options have been exhausted. Many Phase III trials investigate first-line treatments. The success to date with newer agents has stimulated efforts to expand the classes of agents used in the treatment of myeloma, as improved therapies are urgently needed. New treatments under investigation include second-generation proteasome inhibitors; inhibitors of heat shock protein 90, histone deacetylase, and mtor; and agents that target the tumour microenvironment. 5

6 Leukaemia Foundation Villages so much more than just shelter When the Leukaemia Foundation was first established in 1975, it was not long before the urgent need for patient accommodation became evident. Patients and their families were sent to Brisbane for medical treatment, but often had to book into a motel. The financial burden was crippling and the experience was lonely and isolating. Over thirty years later the Foundation proudly boasts four world-class accommodation centres in Brisbane in Townsville which are staffed by trained and caring support services personnel. The villages are designed to provide patients with not only accommodation, but a home-away-from-home where patients can be surrounded by others who understand what they are going through and where they can support and care for each other. We receive a lot of fantastic feedback from patients and families who have stayed at the Foundation s accommodation centres. We d like to share one example with you When I was diagnosed with Multiple Myeloma at the end of 2008, I had to leave my home town of Crows Nest to spend time in Brisbane having treatment. In June 2009 my wife and I needed to come to Brisbane for an 18 week stay. We contacted the Leukaemia Foundation for help and we were kindly offered a unit at Clem Jones Sunland Leukaemia Foundation Village. Because we arrived on a public holiday, we were told to contact a lady in one of the units who would help settle us in. She was out when we arrived so Lorraine in unit nine introduced herself and showed us around the complex. Within an hour we were having a cuppa and chat in her unit. We settled into our lovely unit which in no time became very much our home-away-from-home. A family, Danny, Maria and their two daughters, moved into the unit next door and a week later Paul and Debra moved into a unit further over. As we were all being treated by Dr James Morton, we got to know each other quite well and became good friends. We would swap yarns about our different experiences and generally give each other support. The atmosphere at the accommodation centre was very friendly with everybody being very sociable and supportive. This close bond we shared was reflected in the many social times we spent together celebrating birthdays and other occasions with drinks, cakes and nibbles around the lovely BBQ area or games room. When my treatment was finished we swapped phone numbers and addresses. On the afternoon we lift we had drinks and nibble in the BBQ area and then we ended up at Paul and Deb s for dinner. We would particularly like to thank the wonderful village staff (Jacki, Dean and Natalie) for their friendliness and helpfulness. I d also like to mention the volunteer bus drivers who donate their time to take patients to and from hospital. They also became our friends. We were so grateful to the Foundation for their wonderful help and for providing us with more than just a roof over our heads, but a place where we found support and care and made lifelong friends Norman Wingett 6

7 Light the Night an overwhelming success Crowds turned out in force in seven locations around Queensland on October 8 to support the Leukaemia Foundation s Light the Night events for a special evening of celebration, remembrance and hope for the leukaemia cause. Due to the overwhelming success of Light the Night in Brisbane and Cairns last year, the event was expanding this year to include Gold Coast, Sunshine Coast, Bundaberg, Mackay, Townsville and Toowoomba. This event provided an opportunity for those touched by leukaemias, lymphomas, myeloma or related blood disorders to gather and reflect on the impact these blood cancers and related disorders have on individuals and families across the community. The CEO of the Leukaemia Foundation of Queensland, Peter Johnstone, said he was overwhelmed at the level of support shown in Queensland, with an estimated 2000 people attending the two events. This strong turnout demonstrates that Queenslanders have well and truly embraced our Light the Night concept for the second year, an inspiring event which focused on raising awareness rather than funds, Mr Johnstone said. Mr Johnstone said the highlight of the evening for many participants was seeing the mass of balloons create a sea of lights during the various walks. Gold balloons were carried to remember those lost to these diseases and related blood disorders, white balloons were carried to celebrate survivorship, and blue balloons were carried to give hope and support for the future. My heartfelt thanks goes out to all Queenslanders who participated in this night of reflection, inspiration and hope, Mr Johnstone said. How has the Foundation helped patients and families in 2008/09? Mission to Care: The following figures highlight the extensive support the Leukaemia Foundation of Queensland has provided patients, their carers and families during the 2008/2009 financial year. 39,355 nights of accommodation were provided free of charge to 626 patients and their families. This free accommodation was provided throughout the Leukaemia Foundation s four accommodation facilities located in Brisbane and Townsville. Due to the overwhelming demand for accommodation in Brisbane and Townsville approximately one third of the total number of free nights accommodation was provided in motels. Patients and their families stay at the Leukaemia Foundation s accommodation facilities for an average of 3-4 months, with some patients staying up to two years. The Leukaemia Foundation of Queensland provided more than $224,500 in financial assistance to patients and families across Queensland. In the last financial year the Leukaemia Foundation had more than 48,932 referrals, contacts and requests for assistance. These requests for assistance and contacts include: telephone calls, home visits, accommodation, education seminars, private and financial consultations and transport assistance. The Leukaemia Foundation of Queensland has eight patient support vehicles which are available for patients to be transported to and from treatment facilities and social activities. These eight vehicles assisted 3649 patients (this figure includes multiple trips for some patients) with transport covering a total of 149,826 kilometres over the past 12 months. This is a 25% increase in trips and a 54% in kilometers travelled. Vision to Cure: In the 2008/2009 financial year the Leukaemia Foundation of Queensland invested close to $1 million into leukaemia and blood cancer research. The Foundation supports both laboratory and clinical based research in its endeavor to improve current treatments and find cures for all patients. 7

8 Would you like to talk to others with Myeloma? Join the Leukaemia Foundation s Telephone Discussion Forums! Each month, we held a Telephone Discussion Forum to connect people with myeloma, wherever they live across Australia. It can be hard for people who are not living with myeloma to understand what it s like. And if you live in a regional area, you might not meet other people with myeloma very often. In the telephone discussion forum you can share your experiences, tips and become part of a support network in the comfort of your own home. Each discussion is facilitated by a trained Leukaemia Foundation health professional. The call is free if you live in the country or the cost of a local call if you live in the city Telephone Discussion Forum dates will be 4 February, 4 March, 1 April, 6 May and 3 June from 1pm-2.30pm (EST). One patient wrote, Thank you for organising the phone forums. It has been so good to talk to other people with myeloma. Living in a rural area it often feels like you are the only person with this disease, in fact, until the telephone forums I had not met one other person with myeloma! To find out more information contact: Kaye Hose National Myeloma Co-ordinator (03) myeloma@leukaemia.org.au Living life with Myeloma cont learned to plough on and keep planning my future. The little things don t matter anymore. Family and friends are so important as they provide the love and support required. Barry says his love of sports has helped with his recovery and in coping with his hospital stays. Recently he has attended rugby league games and rugby union tests, and watched one day cricket, State of Origin, golf and even found time to climb the Sydney Harbour Bridge. I would like to thank the Leukaemia Foundation for providing accommodation for me during my treatment. This allowed me to get out of hospital and still be close by for treatment, as well as have somewhere my family could stay with me. This was such a moral booster. I would also like to thank the wonderful staff and doctors at the Mater Hospital, St Andrews Hospital in Toowoomba, as well as my family, friends and work colleagues for their fantastic support. be brave & shave! March 2010 Register now worldsgreatestshave.com Myeloma seminar dates Speakers and topics TBA 23 February, 20 April, 8 June Leukaemia Foundation of Queensland thanks Janssen - Cilag for providing the refreshments for the myeloma luncheons. Brisbane Support Services Team Barbara Hartigan - Director of Support Services Scott Martin - Support Services Coordinator Sheila Deuchars - Support Services Coordinator Kris Murphy - Support Services Coordinator Maryanne Skarparis - Support Services Coordinator Natalie James - Support Services Coordinator Pat Neely - Amyloidosis Services Coordinator Jenny Gallagher-Grant - Grief Support Services Coordinator Shirley Cunningham - Grief Support Services Coordinator Marian Marshall - Support Services Administration Officer For help call Brisbane: or Townsville: Our Vision to Cure and Mission to Care. The Leukaemia Foundation of Queensland is a not for profit organisation focused on the care and support of patients and their families living with leukaemias, lymphomas, myeloma and related blood disorders. The Foundation does this by providing emotional support, accommodation, transportation and practical assistance for patients and their families. The Leukaemia Foundation also funds research into cures and better treatments for leukaemias, lymphomas, myeloma and related blood disorders. The Leukaemia Foundation receives no direct ongoing government funding, and relies on the continuous support of individuals and corporate partners to expand its services. GPO Box 9954 Brisbane QLD 4001 ph: Leukaemia 8 Foundation of Queensland To find out more about the work of the Leukaemia Foundation of Queensland and how you can help, phone or visit the Foundation s website: Disclaimer: No person should rely on the contents of this publication without first obtaining advice from their treating specialist. If you do not wish to receive future editions of this publication please contact the Leukaemia Foundation Support Services Division on