MYELOMA. news ADELE S STILL POSITIVE DESPITE A TOUGH 2012 IN THIS ISSUE CARING FOR PEOPLE WITH MYELOMA AND THEIR FAMILIES MAY 2013

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1 MYELOMA news CARING FOR PEOPLE WITH MYELOMA AND THEIR FAMILIES ADELE S STILL POSITIVE DESPITE A TOUGH 2012 Adele Blackhall is still smiling despite everything she s been through since her myeloma diagnosis six years ago. She s been to the brink and back, having survived a stem cell transplant, two life-threatening infections, and for the last 14 months she s had dialysis three times a week. Yet Adele radiates positivity. Being positive does get you through, says Adele, who lives in Sydney with her husband Colin, an ex-merchant seaman. I couldn t have gone through this without Colin he s my rock. After the couple married in 2000 Colin started showing Adele the world. We travelled every year until I got sick, said Adele. He took me to Carnival in Rio de Janeiro, the Mardi Gras in New Orleans, to Vancouver, Niagara Falls, Hong Kong and to Berwick-on-Tweed where his family comes from on the border of Scotland and England. In January 2007, during a walk together while holidaying on the NSW coast, Adele fell. She literally couldn t get up and was taken by ambulance to hospital in Newcastle where she had tests. These showed several fractures in her leg, but nothing else. MAY 2013 After having a bone marrow biopsy back in Sydney, Colin was with Adele when she got the result. After being told she had myeloma Colin s first question was, is it life threatening?. They said it couldn t be cured but could be maintained and got on top of with different options, said Adele. Adele had her transplant at the end of 2007 and was home in time for Christmas. Three months later Colin took her to New York and they had several other trips before Adele got a sudden infection and was rushed to hospital in January She spent three weeks in intensive care with septic shock. Would you believe I got through that Colin was told I wouldn t survive. But all my organs broke down and I lost the use of my kidneys. Since then, Adele has needed dialysis, taking this in her stride. I can handle it, said Adele stoically, but she describes 2012 as the most horrendous year of our lives. She had worked for Myer as a promotions announcer for 25 years and in April that year, having only been back at work for a fortnight, Adele got home one day and screamed with the pain in her shoulder. It was another infection and she spent a further two weeks in intensive care. It took weeks to recover and afterwards I was told if I got one more infection I wouldn t make it. Continued on page 6... IN THIS ISSUE Managing myeloma now and beyond... Pg 2 May 22 is National Myeloma Day... Pg 3 Turning 57 and 63 both big days for Marilyn... Pg 4 Eleven Questions with Dr Craig Underhill... Pg 5 Osteonecrosis of the jaw (ONJ)... Pg 7 Diary Dates... Pg 8 Adele Blackhall at Universal Studios in

2 Just Briefly MANAGING MYELOMA NOW AND BEYOND Susie Novis and Dr Brian Durie, both from the International Myeloma Foundation (IMF) in the US, are keynote speakers at the National Myeloma Day seminars in Sydney (24 May) and Melbourne (25 May). They will explore the National Myeloma Day theme; Managing Myeloma Now and Beyond. At the Melbourne and Sydney events, Ms Novis will discuss the patient and carer perspective. Dr Durie will focus on the latest treatments for myeloma as well as new trial drugs and myeloma therapeutics in What s happening in myeloma, an American and an Australian perspective. In Sydney Dr Durie will present with Professor Douglas Joshua, a haematologist from Royal Prince Alfred Hospital, and in Melbourne with Professor Jeff Szer, a haematologist from Royal Melbourne Hospital. Ms Novis founded the IMF in 1990 along with her late husband, Brian Novis, and Dr Durie, a leading myeloma expert. She was the IMF s first president and still holds this position today. The IMF has membership of more than 230,000 people in 113 countries and has raised $60million to support myeloma programs and research. Susie created the organisation s flagship Patient & Family Seminar program in 1993 which has been held hundreds of times around the world. In 2002, she conceived Bank On A Cure with fellow IMF board member, Rich Saletan. This was the first myeloma-specific DNA data bank and it provides Susie Novis. Dr Brian Durie. myeloma researchers with vital genetic information on how to tailor treatment to avoid drug toxicities, improve outcomes and increase long-term survival, ultimately to find a cure for myeloma. Ms Novis firmly believes in the phrase, knowledge is power, and her primary focus is to ensure patients, physicians and nurses around the world have access to the most current information on the treatment and management of myeloma and access to the most appropriate therapy for them. Dr Durie is the IMF s chairman of the board and director of myeloma research for the Academic Myeloma Consortium. He and Dr Sydney Salmon co-created the Durie/Salmon Staging System that is used worldwide for evaluating patients with myeloma. He has received numerous honours and awards for excellence including the 2006 Robert A. Kyle Lifetime Achievement Award, which honours a physician who most exemplifies singular dedication to and compassion for myeloma patients in the search for the best treatment for myeloma. In 2009 he received the prestigious Waldenström s Award in recognition of his many contributions to the field of multiple myeloma. Dr Durie has written more than 400 research papers, 16 book chapters and five books, and is an international patent holder for scintillation autoradiography. To attend these National Myeloma Day seminars, contact Meagan Rourke in Sydney on or sydneynmd@leukaemia.org.au, or Stephen Higgs in Melbourne on or melbournenmd@leukaemia.org.au. OSTEONECROSIS OF THE JAW: A NEW TREATMENT? By Dr Ie-Wen Sim Endocrinologist (pictured), NorthWest Academic Centre, University of Melbourne Osteonecrosis of the jaw (ONJ) is a rare but potentially debilitating condition that involves exposed jaw bone that fails to heal spontaneously. ONJ is mainly associated with the use of intravenous bisphosphonates, zoledronic acid (Zometa ) and pamidronate (Aredia ), and subcutaneous denosumab (Prolia ) to treat myeloma. These drugs contribute to the development of ONJ as they inhibit bone resorption, formation and repair. Other predisposing factors for ONJ include tooth removal, poor oral and gum health, and tobacco use. This severe condition can persist for many years, reducing quality of life in patients due to pain, eating discomfort, poor nutrition and decreased life satisfaction. Constant pain and numbness, fractures and chronic infection also are associated with ONJ. Few effective treatment options are available to manage ONJ and despite standard care, including surgery, antibiotics and mouthwashes, it can persist in up to 40% of patients. Dr Ie-Wen Sim investigating teriparatide as a treatment for ONJ. The significant impact of ONJ on myeloma patients and the lack of effective therapeutic options highlights the need to gain a better understanding of this condition, whilst identifying effective treatment options. Continued on page Leukaemia Foundation Myeloma News - May 2013

3 Living Well NATIONAL MYELOMA DAY LEUKAEMIA FOUNDATION Myeloma aware Wednesday 22 May is National Myeloma Day and this special day promises to be even larger than last year. This year there are two international speakers, Susie Novis and Dr Brian Durie, from the International Myeloma Foundation in the US, who are both dedicated to supporting the myeloma community through advocacy and research (see story on page 2). National Myeloma Day has three objectives: to promote myeloma awareness among the general public; to bring together people who are affected by myeloma, to provide support; and to focus on the latest developments in myeloma research and treatment. National Myeloma Day events Managing Myeloma Now and Beyond is the theme for this year s National Myeloma Day events. They will provide specific education and support to empower the myeloma community with National myeloma coordinator, Kaye Hose, cake cutting with the Melbourne myeloma support group at NMD knowledge and enable individuals to connect, in metropolitan and regional centres. The theme focuses on the latest developments in treatment and research for myeloma. There has been a huge expansion in therapies used for myeloma, compared to over the last 10 years ago, and people with myeloma are now surviving longer. Topics that will be explored include managing myeloma, exploring different treatment options, and new research. More than 20 National Myeloma Day events will be held around Australia including three seminars (in Melbourne, Sydney and Adelaide) organised co-jointly with the Myeloma Foundation of Australia. Look into what is happening in your region on National Myeloma Day by calling the Foundation or visiting Consider getting involved on the day: 1. Promote community myeloma awareness by buying a Myeloma Aware badge. You can recognise National Myeloma Day with our special new look 2013 commemorative badges. They cost just $5, can be worn by people with myeloma, as well as their family and friends, and are available from the Leukaemia Foundation office in your state. Badge sale proceeds will support our research program and the free services provided for people with myeloma. 2. Support others with myeloma by attending a National Myeloma Day event during May. A range of activities has been planned, which are listed on page 8 of this newsletter. If you are not able to attend in person, consider registering for the myeloma telephone forum on 22 May. 3. To increase awareness of myeloma tell one or more people about this rare cancer this May, and together we ll continue the March Against Myeloma. This poster will be used to promote a National Myeloma Day event near you If you d like to join this Leukaemia Foundation initiative by promoting and recognising National Myeloma Day, by hosting your own event, speaking at a Foundation event, or if you have an idea of your own, please contact Kaye Hose: myeloma@leukaemia.org.au. For details of National Myeloma Day events across Australia, see page 8. 3

4 My Journey Turning 57 AND 63 BOTH BIG DAYS FOR MARILYN On her 63rd birthday (23 September 2011) Marilyn Hare found out she was in remission*. I thought yay happy birthday to me, but I didn t believe it initially as I d been told there was no cure for myeloma. Now, more than 18 months later, Marilyn is still in remission. It s quite unbelievable. When I got very sick I wasn t supposed to survive, said Marilyn, who lives with her long-term partner, Bryan Clyde, in Wodonga. She was diagnosed in January 2004 but for the previous three months had instinctively felt something was wrong. She put this down to the long hours she worked and to being unfit, overweight and tired from being so busy. In a bid to get fit she started walking with a girlfriend four mornings a week. After three months, I wasn t getting anywhere. I didn t feel any better or lose any weight, said Marilyn. And at night I was waking with pain in my rib cage. It felt like a horse had kicked me. It was bone pain not something I d experienced before, so I found it hard to describe. She saw a locum GP, a chiropractor and had physio, but the pain didn t go away so she went back to her normal GP in December. After some tests she was referred to a specialist for an MRI but couldn t get in until mid- January. The morning after celebrating New Year s Eve at her sister s house, early the next day Marilyn felt like a knife had gone through her lower back. Marilyn Hare and her partner, Bryan Clyde. I crashed to the floor and couldn t move without excruciating pain. I d never had that sort of pain before. Marilyn was taken to hospital by ambulance. An x-ray revealed fractures in her lower vertebrae. She was referred to an oncologist and transferred to another hospital and had a raft of tests. I was told I had multiple myeloma, that it was aggressive and that I was quite sick. The prognosis wasn t good with conventional treatment but I was offered the DTPACE clinical trial (a combination of thalidomide and dexamethasone). I had a lot to read and understand but the medical guidance I received meant I instinctively felt I should accept the trial because what did I have to lose? I was a bit deflated, on drugs for the pain, and had to use a walking frame. When I got home I said to mum, who was living with us and also had a walker, we can have races up and down the passageway. That was funny and I made a pact that I d have a chuckle about something every day, even if it meant watching parliament question time on TV. Marilyn began the trial in February 2004 in preparation for a bone marrow transplant planned for June that year. After two rounds of treatment, I lost my hair but I couldn t have cared less a wig was easier to manage and better than my own hair! Then I collapsed big time, explained Marilyn, who developed severe neutropenic sepsis and was air ambulanced to Melbourne and put in an induced coma in intensive care. My family was told to come down and be prepared to say goodbye, but they didn t tell me, so I fought to survive and won! After three weeks she d recovered sufficiently to be transferred back to the Murray Valley Private Hospital, and by November, Marilyn was back working part-time, in logistics for the pet food company she d been with for 17 years. It was a job she absolutely loved and the company had a great support policy for critically ill employees and families. You feel normal if you live how you used to live, she explained. During the previous eight months the hardest thing for me to deal with was my loss of independence such as not driving. Marilyn was too weak to have a transplant and went onto maintenance treatment, gradually regaining her energy until June 2005 when she collapsed again. I got a cold and kept going and after five days it turned into severe pneumonia overnight. She was ambulanced to Albury Base Hospital and again put into an induced coma because her kidneys were shutting down and her other main organs also were compromised. She had three months off work and it seemed to Marilyn that for every two paces she took forward she slipped back three, so she retired at 57. I typed up my resignation letter on my birthday in 2005 and it was the best decision I ve made to keep my health under control. I actually had to take the work commitment out of my life. I said to Bryan whatever time I have left is for you and family, the kids and grandkids. That s where my energies will go. I want to be remembered as the granny who baked cup cakes and handed out the odd chocolate frog, not the photo hanging on the wall. Marilyn started having monthly Intragam infusions to boost her immune system and in 2006 stopped taking the bone strengthening medication she d been on for two years as it was compromising her kidney function. I picked up slowly after that and had three years of sheer bliss when I was almost normal. Continued on page Leukaemia Foundation Myeloma News - May 2013

5 Research Matters Eleven Questions By Dr Craig Underhill (pictured) Clinical director, Border Medical Oncology Research Unit Murray Valley Private Hospital, Wodonga, Victoria 1. How are new treatments developed and tested? Clinical trials test new and better ways of improving health in people. New treatment development begins in the laboratory with a scientific discovery, which then leads to pre-clinical research in the laboratory, and then clinical trials prior to gaining approval for use by authorities (e.g., Therapeutic Goods Administration). 2. What are clinical studies and why are they important? Clinical trials provide essential information about the effects of different treatments. Trials discover if new treatments are more effective or have fewer side- effects. A new treatment can only become standard treatment if it is proven to be safe and effective in a clinical trial. The results of clinical trials today will improve treatment for people who develop cancer in the future. As well, participants in trials may get new treatments or drugs that would not be available outside the trial. Some clinical trials do not involve new treatments. These trials may be looking at better ways of screening for cancer, prevention of cancer, compassionate use or expanded access or improving the quality of life for people with cancer. 3. How are clinical trials carried out? Clinical trials are conducted once approved by authorities and the safety and efficacy of the treatment has been proven in non-clinical research. People are then recruited to participate in the clinical trial by investigators (oncologist/ haematologist), treatments administered, and data collected. Once this data has been collected, it is analysed by the trial sponsor and a final study report of these findings is released. 4. What are the different phases and types of clinical studies? Phase 1 trials are the first clinical studies that involve people. They are conducted after the treatment has been tested for safety in the laboratory. Phase 2 trials continue to monitor the safety of the treatment and test how well it seems to work in more people usually 100 to 300 people who have the same kind of cancer and they are all given the same treatment. Phase 3 trials compare the new treatment with the current standard. The aim of Phase 3 trials is to confirm a treatment s effectiveness, monitor side-effects and collect more information, to allow it to be used safely. Phase 4 trials are post-marketing studies that serve only to collect further information about the treatment s risks, benefits and use. Trials can be divided into two types observational and interventional. Observational trials observe the subjects and measure the outcomes. Interventional trials give the subjects a particular treatment or other intervention and usually compare these with subjects who receive no treatment or standard treatment, and then measure how subjects health changes. 5. How is a clinical study set up? A clinical trial protocol is developed to confirm the design, and provide a plan for investigators to adhere to for harmonisation across many different sites (i.e., hospitals, clinics) where the trial is being conducted. This protocol also serves as a guide to assure the safety and health of subjects. Once the protocol has been developed, sites are invited to participate and then are selected based on their knowledge, skills and experience in clinical trials. These sites then obtain approval from authorities, such as ethics committees, to conduct the trial at their site. Once approval has been granted, the site can only then begin recruiting participants to the trial. 6. What questions should I ask about being in a clinical trial? What are the risks, benefits and side-effects of participating? What tests are involved? What treatment would I have if I don t participate in the trial? There are many questions that can be asked and it is important to have the time to have your concerns addressed before taking part in the clinical trial. It is always the subject s choice to participate or not in a clinical trial and the subject can withdraw at any time. 7. What happens next? If you decide to participate in the clinical trial, you will be asked to sign an informed consent form. Then the clinical trial team can begin screening/to determine if you are eligible to be treated on the trial. 8. What is informed consent? To be enrolled in a clinical trial informed consent is required. Before agreeing to participate in a clinical trial you should be given a full explanation of the treatment proposed for you in the trial. This should enable you to decide whether you wish to participate in the trial. If you choose to participate, you will be asked to sign an informed consent form before entering the trial. A copy of this form will be given to you for your records. This is a standard part of every clinical trial. 9. What happens to the data and results from a study? All the data from the trial is collected and analysed by the sponsor (i.e., pharmaceutical company or trial group that is conducting the trial). This data is confidential and is not released to the public until it is published in clinical journals. As a trial participant, you can request a copy of the final results of the trial be made available to you. 10. What myeloma treatments are currently in clinical trials? Numerous trials are being conducting in the indication of myeloma. This type of cancer has had a rapid growth of research and development of treatments recently. 11. How do I find out about myeloma clinical trials? It is important for patients to ask their treating doctor if there are any trials that they could participate in. There is also a website that contains a register of all trials being conducted worldwide: Do you have myeloma? Or perhaps you care for someone who does. If you have a suggestion for Eleven Questions, please us: myeloma@leukaemia.org.au

6 My Journey ADELE S STILL POSITIVE DESPITE A TOUGH 2012 Continued from page 1... A support services coordinator from the Leukaemia Foundation came and visited me when I was in hospital. They re extremely helpful and have organised transport for me every week to have blood tests, go to the doctor and to hospital for dialysis. I haven t got enough words they re just wonderful. And Colin picks me up. He s a postman. He gets up at 4am to go to work, gets home mid-afternoon, does dinner, shops, cleans up and then picks me up three times a week. He s unbelievable. When Adele was interviewed for this story, she was still recovering after a fall four months earlier. She was using a walker, having regular physio, and doing exercises at home to gain strength. And still Adele is grateful. You ve only got one chance in life and I ve never said why me because I know lots of people are worse. You ve got to hope and even though doctors have said it s not likely I ll get off dialysis, they d also said I wasn t likely to live and told me at the time I was a medical miracle. I appreciate being given a second and third chance to live and I get excited by the little things a flower, the water, a child. Years ago, when I was in the theatre someone gave me a book You Can Heal Your Life by Louise Hay. I m not religious but I believe in the positive effect of affirmations, said Adele, who has a collection of affirmations, which she says to herself every morning and evening, something she has done for the last 10 years. Family is very important to me. I m lucky both my daughters and my five grandchildren live here, as well as my sister who is my best friend, so I don t have to travel to see them. I relapsed in January That s what happens with myeloma, it comes back, so even though disappointed, I wasn t surprised. Marilyn began the Rev-lite clinical trial, which she is still on, now on the lowest dose. I am closely monitored, have blood tests every month and keep a daily diary. Everything from a headache to a hiccup is recorded. Every day after breakfast Marilyn reviews the previous day observing how she felt and what she d done such as: lazy day, didn t do a thing, feel great. It takes 30 minutes in my day on average and I can spare that. I load the information from my pocket diary into a spreadsheet on a computer. Hopefully the information I m gathering will help someone else and I consider myself lucky to have had help and assistance from so many people to get me this far it s a huge team effort. Colin and Adele Blackhall in Sydney last November. One of her favourites is: diagnosis is not to be feared it s to be shared with a loved one, as it s life s rope for support, healing and hope and another is what the mind can perceive and believe, the mind can achieve. Adele has her mind firmly set on getting back her mobility and strength so she can do the things she adores to travel, to swim and to stay up later at night again. We re looking at a cruise that has a dialysis unit on board. Adele has had different treatments including thalidomide since her transplant but has been treatment-free for six months and her blood levels are steady. I m totally blessed in everything that touches me. I have a positive attitude, my husband is my total soul mate, and my circle of loyal friends, the hospital staff and the Leukaemia Foundation all are amazing. Turning 57 AND 63 BOTH BIG DAYS FOR MARILYN Continued from page 4... The aim of the game is to keep me alive long enough to move on to the next trial if I need it and qualify for it. I think clinical trials are very necessary. To me medical research is horribly underfunded, doesn t have a high enough profile, and could get further and faster without all the red tape. And if it all goes pear shaped, then I gave it my best shot. I have come back from two black holes, in 2004 and 2005, and have clocked up nine years. I put it down to the trials, massive support from a great oncology team, GP, research staff guidance, caring nurses and extended family. And sometimes, it s just sitting down and having a cup of tea with the myeloma support group every few weeks to swap stories and gain insight from guest speakers. I would like to be around a bit longer, so when Bryan retires we can enjoy a few more short holidays. Unfortunately I don t share his passion for fly-fishing but happily eat the trout he catches. * No sign of paraprotein in monthly blood tests for three consecutive months, confirmed by bone marrow biopsy. 6 Leukaemia Foundation Myeloma News - May 2013

7 Living Well OSTEONECROSIS OF THE JAW (ONJ) Osteonecrosis of the jaw (ONJ) is a rare condition that involves the loss or breakdown of a small segment of the jaw bone. It can be a serious condition that can cause pain that is difficult to treat. ONJ appears related to long-term treatment with drugs called bisphosphonates (particularly intravenous type) used to treat bone disease in myeloma and other cancers. The incidence of ONJ in myeloma ranges from 1-15%. About bisphosphonates Bisphosphonates are used to strengthen and protect the bones. Bone damage is a common complication of myeloma. Studies show regular treatment with bisphosphonates halves the risk of spontaneous fractures in patients with myeloma, substantially improving quality of life and reducing the incidence of pain. The Medical Research Council Myeloma IX Study found an overall survival benefit associated with bisphosphonates. Bisphosphonates currently prescribed in Australia are: Zoledronic acid (Zometa ) into the vein as a drip Pamidronate (Aredia ) into the vein as a drip Sodium clodronate (Bonefos ) tablets taken orally daily. When deciding the type and duration of bisphosphonate treatment for a patient, a doctor considers: The amount of myeloma bone disease. How active the myeloma is. Calcium levels in the blood. For high levels, IV bisphosphonates are preferred. Previous bisphosphonate treatment. Complications such as kidney function impairment. Personal preference. About us The Leukaemia Foundation is the only national not- for- profit organisation dedicated to the care and cure of patients and families living with leukaemia, lymphoma, myeloma and related blood disorders. We invest millions of dollars in researchers to develop better treatments and cures and provide free services to support patients and their families. We receive no ongoing government funding. We rely on the generosity of the community and corporate sector to further our Vision to Cure and Mission to Care. We can help you Our range of free services supports thousands of Australians, from diagnosis, through treatment and beyond. To learn more, please call to speak with one of our Support Services team. You can help us There are many ways that you can help us to improve the quality of life for people with blood cancer. From making a donation, to signing up for an event; from volunteering, or joining us as a corporate sponsor - please call or go to to learn more. The connection between bisphosphonates and ONJ How ONJ is linked to long-term use of some bisphosphonates is not fully understood. Bisphosphonates work by binding to calcium and reducing the activity of the cells that cause bone breakdown in myeloma (osteoclasts). ONJ may occur because bisphosphonates disrupt normal bone remodeling, affecting the healing process after trauma or an every day injury to mouth tissue. Bones in the jaw are prone to osteonecrosis. Bone in the mouth is covered by only a small layer of tissue so it can be more easily exposed, particularly at the site of invasive dental procedures. This is why people with poor dental health are at greater risk of ONJ. ONJ risk factors People with myeloma who receive regular, monthly IV bisphosphonates are at risk of ONJ. This risk is closely related with: Tooth extraction while undergoing bisphosphonate treatment (the most commonly reported incident prior to diagnosis with ONJ). Long time use of bisphosphonates (more than 12 months). Age (the elderly are more affected). Poor dental health history. Smoking. Diabetes. Poor fitting oral appliances. ONJ symptoms Symptoms and signs of ONJ include: Pain and swelling in the mouth. Non-healing of a tooth socket after a tooth is removed. Loosening of teeth. An area of exposed bone in the mouth. Poor healing or gum infection. Numbness or the feeling of heaviness in the jaw. Discharge or pus. FACT SHEET If these or any other dental symptoms Osteonecrosis of the jaw (ONJ) are experienced, it is important to tell your doctor and dentist immediately. You may be referred to an oral surgeon with experience in osteonecrosis. Osteonecrosis of the jaw (ONJ) is a rare condition, the cause of which is not entirely known. It involves the loss or breakdown of a small segment of the jaw bone. It can be a serious condition and may cause difficult to treat pain. It appears to be related to long-term treatment with drugs used to treat bone disease in myeloma and other cancers, which are known as bisphosphonates, particularly in the intravenous (IV) type. It is not yet known how often ONJ occurs in myeloma, but from available reports, the incidence in patients on intravenous (IV) bisphosphonates can range between 1-15%. In Australia, the incidence is probably less than that. About bisphosphonates Bisphosphonates are drugs used to strengthen and protect the bones, and are used in various conditions including myeloma. Bone damage is a common complication of myeloma. Studies have shown that regular treatment with bisphosphonates approximately halves the risk of spontaneous fractures in patients with myeloma, substantially improving quality of life and reducing the incidence of pain. A study from the Medical Research Council MRC Myeloma IX Study also found there was an overall survival benefit associated with bisphosphonates. Bisphosphonates currently prescribed in Australia for myeloma are: Zoledronic acid (Zometa ) - into the vein (IV) as a drip Pamidronate (Aredia ) - into the vein (IV) as a drip Sodium clodronate (Bonefos ) - by mouth as tablets (orally) every day Your treating doctor will consider the below clinical information when deciding upon the type and duration of bisphosphonate treatment: The amount of myeloma bone disease How active your myeloma is The level of calcium in your blood. If there are high levels of calcium then IV bisphosphonates are usually preferred Previous bisphosphonate treatment that you have had Other complications you may have such as kidney function impairment Personal preference For more information, freecall info@leukaemia.org.au or visit Leukaemia Lymphoma Myeloma Related Blood Disorders Treatment and management of ONJ X-rays or other radiology are used to diagnose ONJ. Treatments for ONJ include antibiotics, pain relief medication and oral rinses. Minor dental work may be necessary to remove injured tissue and reduce sharp edges of the bone. Surgery is usually avoided and regular check-ups are recommended. People with myeloma who are on bisphosphonate therapy and develop ONJ will be assessed by their doctor who will decide whether bisphosphonate treatment needs to be stopped and for how long. The type and frequency of bisphosphonate therapy also may be changed. Prevention of ONJ To prevent or reduce the risk of ONJ: Have a routine dental examination and x-ray and any necessary invasive dental work before starting bisphosphonate therapy. While on bisphosphonates, maintain good mouth hygiene and have regular dental check-ups. Avoid invasive dental procedures (tooth extraction or surgery) while on bisphosphonates, if possible. Otherwise, have this work done in collaboration with an experienced oral and maxillofacial surgeon. It is recommended that bisphosphonate treatment be stopped before dental treatment and re-started following healing. Other routine dental procedures (i.e., cleaning, scaling, fillings) usually are okay. This article has been adapted from the fact sheet on ONJ produced by the Leukaemia Foundation (pictured), which can be downloaded from

8 Education & Support diary dates NEW SOUTH WALES & ACT 1 May 2pm-4pm National Myeloma Day seminar, Update on Myeloma, Tamworth 4 May 10am-12noon Myeloma an overview of disease and treatment, Dr Hanlon Sia (haematologist); Scans and imaging what are they and why do we need them? Dr John Mulholland (radiologist); Tweed Heads. 20 May 10am-12noon National Myeloma Day seminar, Update on Myeloma, Port Macquarie 22 May TBA Albury National Myeloma Day Seminar 22 May 3pm-5pm Managing Myeloma Now & Beyond, Mayfield 24 May 9:30am-3pm National Myeloma Day Seminar, Sydney 25 May 10am-2pm National Myeloma Day seminar, Canberra. Guest speakers: Dr Dylan Hyam (Maxillofacial surgeon) and Dr James D Rozario (Haematologist). 28 May 10am-12noon National Myeloma Day seminar, Coffs Harbour TASMANIA 22 May 12noon-1.30pm National Myeloma Day Seminar, Launceston 28 May 10.30am-12noon National Myeloma Day Myeloma Forum, Devonport 18 Jun 10.30am-12noon National Myeloma Day Myeloma Forum, Burnie VICTORIA 8 May 10am-12noon National Myeloma Day Education Session, Strathdale 25 May 10am-2pm National Myeloma Day Seminar, Melbourne 27 May 10am 12noon National Myeloma Day Morning Tea, Traralgon Queensland 22 May 11am-2pm National Myeloma Day Seminar, Brisbane northern territory 4 May 8.30am-1pm Patient Education Day (also 5 May 9am-1pm) June TBA National Myeloma Day event WESTERN AUSTRALIA 21 May 11am-2pm National Myeloma Day Seminar, North Perth 29 Jun 10am-3pm Patient Conference, Where Hope Shines 22 Jun TBA Patient Conference SOUTH AUSTRALIA 16 May 9.30am-2pm National Myeloma Day Seminar, Adelaide 22 Jun TBA Patient Education Day, 'The Emergence of Personalised Medication', Adelaide TELEPHONE FORUMS Myeloma Phone Forum Transplant Phone Forum Facilitator: Kaye Hose Ph: Facilitator: Simone Waterman Ph: May; 6 Jun;4 Jul; 1 Aug; 5 Sep;3 Oct; 7 Nov; 5 Dec 12 Jun; 14 Aug; 9 Oct; 11 Dec Please visit or call for a full list of our upcoming education and support programs. OSTEONECROSIS OF THE JAW: A NEW TREATMENT? Continued from page 2... One potential treatment is teriparatide or genetically engineered parathyroid hormone, which is approved for use in Australia to treat osteoporosis. Parathyroid hormone (PTH) is secreted by the chief cells of the parathyroid glands. PTH acts to increase the concentration of calcium (Ca2+) in the blood. Unlike bisphosphonates and denosumab, which impair bone formation, teriparatide increases bone formation. This stimulation of bone formation may allow increased bony healing and repair in situations such as ONJ. This theoretical benefit of teriparatide is supported by recently published case reports of ONJ healing after treatment with teriparatide. I am on a research team with expertise in endocrinology, haematology, special needs dentistry and nuclear medicine that has an interest in ONJ. Based on the understood biological action of Diagram showing the molecular structure of teriparatide. teriparatide and case reports, we have designed a clinical trial to investigate the effectiveness of teriparatide as a treatment for ONJ. We also will use novel radiological modalities including cone beam CT and fluoride-pet scans to further understand the development of ONJ and monitor the treatment response to teriparatide therapy. We are currently recruiting patients with ONJ for our research and look forward to reporting our preliminary research results on teriparatide as a potential treatment, and to expanding the current literature on ONJ. For information on the clinical trial, contact Dr Ie-Wen Sim on or BRONJ@outlook.com. Dr Ie-Wen Sim is a PhD scholarship recipient from the National Health & Medical Research Council. OUR VISION TO CURE AND MISSION TO CARE for you The Leukaemia Foundation is the peak body for blood cancer in Australia, To find out more about how we can help you: funding research and providing free services to support people with Freecall leukaemia, lymphoma, myeloma and related blood disorders. info@leukaemia.org.au Our free services include emotional support, accommodation, transportation and practical assistance. We also fund research into Mail: GPO Box 9954 in your capital city cures and better treatments. Website: We receive no ongoing government funding and rely on the continuous support of individuals and corporate partners to provide our services and to fund our National Research Program. 8 Leukaemia Foundation Myeloma News - May 2013 Disclaimer: No person should rely on the contents of this publication without first obtaining advice from their treating specialist.