In this issue. Greg s myeloma perspective one year on. The Leukaemia Foundation of Queensland Support Services Division presents Myeloma News

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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 Greg s myeloma perspective one year on Since finding out he had myeloma one year ago, Greg Barbe of Wellington Point has learned a lot of lessons, and one is to listen to your body. The 57-year-old surveyor was fit and healthy when he got the shocking diagnosis, but looking back he said the unusual tiredness he felt for many months was a sign that he ignored and blamed on previous health issues. I have always been fit and I do a lot of walking in my job, but for quite a while I had been noticing that I just didn t have the energy that I once had. My wife, Roberta, noticed it too, but I just kept making excuses for it, Greg said. In August last year Greg was getting out of his truck after work and twisted his ankle. It became so painful that he was convinced it was broken. The x-rays didn t show a break, so my GP sent me for a blood test and I was told I had myeloma. I had no idea what myeloma even was, Greg said. The diagnosis also came as a huge shock for Greg s wife Roberta and his adult son and daughter. Scott Martin from the Leukaemia Foundation came and spoke to my family about myeloma and really offered great support. Patients and their families really need to know that the Leukaemia Foundation is there to help out in all sorts of practical ways, Greg said. By the time Greg was diagnosed his myeloma was advanced and his doctor said that if it had been left undiagnosed for any longer, he may have died. When I was diagnosed my level of disease was 76% which is really bad. My specialist told me that my treatment would aim to reduce that level to under 10%, he said. For the next five months I was in and out of hospital having regular chemotherapy. The treatment was pretty tough but my level went down to eight percent. At that point Greg s stem cells were harvested, however he had two transplants which were both unsuccessful. The chemotherapy I had for the transplants was really gruelling and I had some of the normal side effects like mouth ulcers and diarrhoea, Greg said. It was a really difficult process which takes a massive toll on your body, but I must say that I had a great medical team and, in particular, I can t speak highly enough about the fantastic Greg Barbe continued on page 2 In this issue Page 3 Building projects Page 4-5 What s new in myeloma Page 6-7 Taking medicines overseas Page 8 Support seminar dates 1

2 From the editor Questions build knowledge continued from page 1 nurses that cared for me at the Mater Hospital. After his experience, Greg said that he would really encourage people to try and do some exercise while they are in hospital and after. The physiotherapists give you exercises to do, but you feel tired and sick so it is easy to not do them. But when I got home, my muscles had wasted to the point that I couldn t walk down stairs. I have also really noticed that my back and shoulders aren t nearly as strong as they used to be, he said. I think it really helps with your recovery to do some form of exercise like walking or riding an exercise bike, even when you don t really feel like it. Greg was put on Thalidomide but the side effects were very unpleasant, so his doctor suggested Interferon, which he injects himself three times a week and which has been highly successful. Greg said his myeloma level is now down to 6%. Welcome to the second edition of Myeloma News for Since the last edition, the Leukaemia Foundation of Queensland held National Myeloma Awareness Day. The Foundation would like to thank Dr Laurence Catley and Dr Washington Sanchez who spoke to the Myeloma Support Group in Brisbane, and Dr Ian Irving who spoke in Townsville. The meetings were well attended in Queensland and also included the launch of the Australian Myeloma Impact Survey. This national survey, which was conducted by the Leukaemia Foundation, was designed to help us better understand the physical, emotional and social experiences of myeloma patients. Just a reminder that the Foundatio has a number of DVDs available for patients to borrow. Understanding Myeloma: a guide for patients and their families is an hour long DVD divided into various chapters which are designed to answer some of the most commonly asked questions. The DVD is presented by haematologist, Dr Hang Quach from Monash Medical Centre. Dr Quach talks about myeloma, its causes, treatments and supportive care. This DVD also includes the personal experiences of two people living with myeloma and includes tips which have helped them along their journey. We are six months on from the natural disasters which occurred in Queensland, and the Foundation hopes that everybody who may have been affected by these events is well on their way to recovery. We understand that some people are still struggling with housing and feelings of isolation, and we would like to continue to offer our support to you. Please don t hesitate to contact one of our Support Services Coordinators for any assistance on Take care, Scott Martin Support Services Coordinator Leukaemia Foundation of Queensland You soon learn that everyone is different and reacts differently to certain treatments and drugs, as well as experiencing different side effects, he said. Fatigue has been a major side effect for Greg, although he has been able to return to work three days per week. My employer, Energex, has been very understanding and flexible about my return to work. I now do light field duties and office work, and if I am not well enough to come in one day, I can just come in the next, Greg said. I make sure I rest when I need to. I m pretty good at nanna naps. Going back to work has helped give my life a sense of normality, so for me it was the right thing to do. But I would say that if you don t feel physically able to, then don t. Greg said that throughout the process, he was happy to listen to his doctors and nurses and follow their advice, however he also said it was important to ask lots of questions. My wife and I always asked a lot of questions about my treatment. I would suggest that you have someone with you when you are speaking with your medical team a family member or a friend someone who knows you well, he said. Greg said that the support of his family and friends throughout his illness has been wonderful and he and Roberta were hoping to travel to Canada and Scotland next year. I just hope that some patients who have just been diagnosed might read my story and see that there is hope and that treatments are improving every day, and that in time you can have a normal life again, Greg said. 2

3 Funds needed for building projects The Leukaemia Foundation of Queensland is currently working hard to urgently raise $1.5 million to expand its vital accommodation services in Brisbane and Townsville for the five Queenlanders diagnosed every day with blood cancers. According to Leukaemia Foundation of Queensland president, Beverley Mirolo, the Leukaemia Foundation has welcomed State Government support through Queensland Health to add eight units to Queensland Freemasons Village in Townsville, and relocate and build a bigger ESA Village in Brisbane. However, even with that support we need to raise our own funds to fitout and furnish both villages to meet the specific needs of patients as well as provide them and their families a place they can call home while they go through the incredibly difficult journey of blood cancer treatment, Mrs Mirolo said. ESA Village, Brisbane The Leukaemia Foundation s ESA Village, currently at South Brisbane, is being relocated to the new Boggo Road Urban Village just a few kilometres away at Dutton Park. Establishment of a new ESA Village is necessary because the State Government s development plans for the new Queensland Children s Hospital at South Brisbane require the land now occupied by the village in Raymond Terrace. The new village is expected to include up to 30 accommodation units compared with the current 21 units at South Brisbane. This will help alleviate some of the high demand for accommodation that currently requires the Foundation to house some patients and their families in private motels when ESA Village is at capacity. 4,000 nights of accommodation had to be bought by the Foundation at private Townsville motels to meet demand. The high demand for patient accommodation in Townsville has prompted the Foundation to embark on a $3 million project to add an extra eight units (two three-bedroom units and six two-bedroom units) to the Queensland Freemasons Village. It is hoped the expansion project in Townsville will be completed by January These new building projects are vital to the Foundation s future because they will help alleviate the heavy demand on our existing accommodation facilities. In 2010/2011 the Foundation provided more than 41,000 nights of free accommodation to patients and their families needing to live in Brisbane or Townsville during treatment. But almost 15,000 of those nights of accommodation were provided in private motels because our villages were at capacity. Naming rights for a range of facilities in both the Townsville and Brisbane village projects are available. If you would like to donate to the Foundation s building appeal please contact Ron Bolton-Wood, Manager of Patient Accommodation, on or by rboltonwood@leukaemia.org.au. A time frame for developing the new ESA Village is being discussed with the government, and a completion target of March 2012 is being considered. However, the existing ESA Village will continue to operate until such time as the new village at Boggo Road is completed, ensuring there will be no disruption to patients and families. Freemasons Village, Townsville In 2010/2011 the Foundation provided more than 6,000 nights of accommodation at its 10-unit Queensland Freemasons Village. But, an additional

4 More than 20 myeloma patients along with their families and carers gathered at ESA Village for the National Myeloma Day education seminar on 18 May. National Myeloma Day, held for the first time last year, aims to: promote myeloma awareness among the general public bring people affected by myeloma together to provide support and to celebrate the access to novel treatments for myeloma in Australia recognise current and future research into myeloma. The group was addressed by Associate Professor Laurence Catley and Dr Washington Sanchez from the Mater Medical Research Institute about the latest developments in myeloma treatment and research. Dr Washington Sanchez, Associate Professor Laurence Cately and support services coordinator, Scott Martin. For those who were unable to attend, the following are summaries of the information presented by Dr Catley and Dr Sanchez. What s new in multiple myeloma by Associate Professor Laurence Catley The management of multiple myeloma has improved significantly in recent years. The novel therapies, consisting of immunomodulatory drugs thalidomide and lenalidomide (Revlimid), and the proteasome inhibitor bortezomib (Velcade) are now part of routine care. Death rates among myeloma patients are declining, almost certainly as a result of significant improvements in treatment options. The use of stem cell transplants in the 1980s and 1990s, thalidomide in the early 2000s, and subsequently Revlimid and Velcade, likely account for the declining death rate in younger patients since For patients 65 years and older, death rates began to decline after 2002, with the increasing use of novel therapies in older patients. Treating younger, newly diagnosed patients High-dose myeloablative chemotherapy with autologous stem cell transplantation remains the standard of care for patients deemed fit for the procedure. Generally this includes all patients under age 65, and some older patients. In addition, novel therapies are being used earlier in the disease and the options are therefore increasing. Trials are being designed to determine what is the best initial therapy prior to stem cell transplant as well as what is the best treatment management after transplant. Although Velcade and Revlimid are not currently subsidised for initial therapy in Australia, clinical trials overseas have shown a combination of Velcade, dexamethasone, plus one or two other therapies is likely to achieve the highest response rate. There is also increasing support for the use of a combination of Revlimid, Velcade and dexamethasone as initial therapy. Trials in the United States and Europe are underway to determine the optimal timing of stem cell transplants, as well as the number of transplants necessary in the current era of novel therapies. In addition, detailed analyses are being conducted to determine which patients respond best to the treatment regimens in the trials. Treating older, newly diagnosed patients Patients over the age of 65 years are generally ineligible for a stem cell transplant because of increased toxicity and less benefit in terms of survival, although for fitter patients this may still be an option. For patients who will not undergo transplantation, there is a broad range of other potential treatment options being investigated. For example, melphalan and prednisone may be used in combination with one or more novel agents; cyclophosphamide and dexamethasone in combination with one or more novel agents; or Revlimid plus dexamethasone possibly with the addition of Velcade. Patients at higher risk of early relapse may particularly benefit from earlier treatment with a combination therapy that includes Velcade. Recent trials have shown that the weekly administration of subcutaneous instead of intravenous Velcade may show good efficacy while also reducing the risk of peripheral neuropathy (pain and tingling in the extremities), which is a common side effect when Velcade is infused or given more frequently. Consolidation and maintenance Even patients who achieve a complete response after initial therapy can have a small amount of residual myeloma cells. Therefore, continuing treatment (consolidation and maintenance) is being investigated with the aim of eliminating all remaining myeloma cells to improve survival with minimal toxicity. The data are in conclusive as to what consolidation regimen is optimal. However, there are good data supporting Velcade, thalidomide, plus dexamethasone. For maintenance therapy (continuing low-intensity therapy), several ongoing studies are showing that Revlimid maintenance has a significant benefit. Longer initial therapy may potentially result in more resistant myeloma later, as well as toxicity during the treatment. Longer therapy also incurs higher costs to the patient and health care system. Therefore, it is important to continue evaluating these options in carefully controlled clinical trials. 4 continued next page

5 Bone disease Bone disease is a common complication associated with multiple myeloma. Myeloma cells disrupt the normal cycle of bone formation and destruction, resulting in weakened bones that easily break. Intravenous bisphosphonates have long been the standard of care to reduce pain and fractures in patients with myeloma. Bisphosphonates inhibit the cells that destroy bone. One new approach is denosumab, a monoclonal antibody that also acts to inhibit the cells that destroy bone. There has also been success treating myeloma bone disease with daily subcutaneous injections of parathyroid hormone. The novel agents also appear to reduce the number of cells that break down bone. In addition, Velcade appears to increase the number of cells that rebuild bone, resulting in new bone formation. Newer investigational therapies for patients Advances are being made in new treatments under development for myeloma. Next generation proteasome inhibitors and immunomodulatory drugs, Carfilzomib and Pomalidomide respectively, may be sufficiently active against myeloma that they may be used on their own (in combination with dexamethasone) or together with one of the novel agents and dexamethasone. One trial is evaluating Carfilzomib combined with Revlimid and dexamethasone (CRd) in both transplant-eligible and ineligible newly diagnosed myeloma patients. The CRd regimen is being used both as initial (induction) therapy as well as consolidation and maintenance therapy. The response rates observed with this new combination therapy are very promising; 97% of patients achieved at least a partial response, and 60% of patients achieved either a near complete response or better. The sideeffect profile of the CRd regimen appears favourable, with only 11% experiencing peripheral neuropathy, and no cases of severe peripheral neuropathy. Other proteasome inhibitors are in earlier clinical development, such as CEP-18770, NPI-0052, and P5091. Others have shown promise in the laboratory and may soon start clinical trial testing. Pomalidomide is an orally available relative of both Revlimid and thalidomide, and has been used in relapsed/refractory myeloma patients who have had many different previous therapies. Even in patients that have received six or more different previous therapies, more than 25% of the patients taking pomalidomide have achieved at least a partial response. Histone Deacetylase (HDAC) is an important molecule in many cell functions, and HDAC inhibitors offer a potential new treatment for myeloma. Two drugs in this class Panobinostat and Zolinza (Vorinostat) are the most advanced in clinical trials. After initially showing only limited efficacy as stand-alone treatments for myeloma, Panobinostat and Zolinza are now typically being tested in combination with other myeloma treatments. The initial focus has been on testing these drugs in combination with Velcade, partly because of pre-clinical experimental evidence. The results, mainly from trials in relapsed/refractory myeloma patients, have been promising in terms of efficacy. Finally, another promising new class of drugs is the monoclonal antibodies. Antibodies are normally produced by the immune system to identify and destroy foreign objects like bacteria, viruses, and cancer cells. Monoclonal antibodies typically have the greatest effect when combined with another myeloma drug, such as Revlimid or Velcade. Two monoclonal antibodies that are in late-stage development are Elotuzumab and Siltuximab. Elotuzumab has shown good efficacy in early trials when combined with Velcade in relapsed/refractory myeloma patients, but even better efficacy when combined with Revlimid and dexamethasone. A phase-three trial testing Elotuzumab combined with Revlimid and dexamethasone in newly diagnosed patients is therefore planned. Siltuximab also showed activity when combined with Velcade in early clinical trials, and one phase-three trial of the drug in combination with Velcade and dexamethasone in relapsed/ refractory patients is already ongoing. Another phase-three trial combining the drug with Velcade, melphalan, and prednisone in newly diagnosed patients is planned. Conclusion The outcome for patients with multiple myeloma has improved significantly in recent years due to the introduction of effective new treatments into routine clinical practice. Other new treatments continue to progress in development, and in combination with the current options can be expected further improve the survival and quality of life of patients with multiple myeloma. Research highlights Dr Washington Sanchez s presentation on National Myeloma Day centred on the research highlights from the 13th International Myeloma Workshop held in Paris in May. While the workshop had a strong clinical emphasis, several of the research projects presented there focused on potential new therapies against multiple myeloma. Dr Sanchez summarised these emerging therapies in his presentation. They included a second generation version of the proteasome inhibitor class of drugs (ie: Velcade), several antibodies that target and induce cell death in multiple myeloma and a myelomadendritic cell fusion vaccine that improves antimyeloma immune responses. In addition to this, the workshop showcased the research of other drugs that target myeloma such as intracellular scaffolding, drugs that are specifically activated within the low-oxygen environment of myeloma cells and also intracellular communication leading to myeloma cell growth and survival. Finally, Dr Sanchez presented data from his research project within the Multiple Myeloma Biology and Therapeutics Group at the Mater Medical Research Institute in Brisbane. His research is evaluating a metabolic-targeting strategy to combat multiple myeloma using compounds designed to inhibit cancerrelated metabolism. 5

6 Travelling with myeloma Taking medicines overseas For myeloma patients planning to travel, it is important to be aware of the restrictions on taking or sending Pharmaceutical Benefits Scheme (PBS) medicines overseas. The Australian Government subsidises around 2,500 prescription medicines under the PBS. Exporting PBSsubsidised medicines to people outside Australia leads to a significant financial loss to both the Australian Government and the community. It is also dangerous for people to take prescription medicine that has not been prescribed for them. The most common illegal export of medicines happens by mail or when people take them in their luggage. People caught illegally exporting medicines face a maximum of two years in prison or a $5,000 fine. Therefore it is important to read the following information, to ensure you meet all the legal requirements. It is illegal to take or send PBS subsidised medicines out of Australia unless it is for your own personal use or someone travelling with you, such as a child. The quantity of PBS medicines that you can take is restricted. Before travelling you should contact the embassy of the country you are visiting to ensure the medicine is legal there. You should also carry a letter from your doctor detailing what the medicine is, how much you will be taking and stating that the medicine is for your personal use. You should leave the medicine in its original packaging so that customs can see who dispensed it, for whom it was dispensed and the cost. Customs can detain any medicine it suspects is being illegally exported. Medicines that have not been subsidised by the PBS can be taken or sent overseas. However, you should still contact the embassy of the country you are travelling to to ensure the medicine is legal there. You should also carry a letter from your pharmacist stating the medicine has not been subsidised. Some overseas countries will require a letter from your doctor for any prescription medicine. You should leave the medicine in its original packaging, so Customs can see who dispensed it, for whom it was dispensed and the cost. Medicare Australia has a 24/7 information line to answer all your queries. They advise getting your information from them earlier rather than later, as a phone call from the airport can be too late. Phone the Travelling with PBS Medicines enquiry line on Also see Travelling with a pre-existing medical condition If you have a pre-existing medical condition (known as an EMC within the travel insurance community) such as lymphoma, what are your options when travelling? Your first consideration is your destination, then the level of medical support that can be provided in relation to your condition. Travelling in the United States for a couple of weeks may sound great, but this is a very expensive destination when it comes to even the most basic medical care. If you can t prove you have insurance or enough funds in your bank account to cover a required procedure, you may be turned down and directed to another hospital, which is not ideal when you are in need of immediate care. From a medical viewpoint, there are two ways to choose your destination. Ask yourself if the country you are planning to visit has a level of health care that is appropriate for your condition, and what costs are involved if you travel to a country that isn t covered by your travel insurer. When travelling with an EMC, countries including South America, North America, Canada and Africa are considered high-risk areas in terms of appropriate care. Most travellers are unaware that in the following countries New Zealand, United Kingdom, Republic of Ireland, Sweden, The Netherlands, Finland, Italy, Belgium, Malta, Norway Australian residents are entitled to assistance with the cost of medical treatment under the Reciprocal Health Care Agreement (excluding elective or cosmetic surgery). These countries each provide care in different ways, so it is best to review the relevant services when you are planning your travel and definitely before you continued next page 6

7 It pays to plan ahead from previous page commit to buying airline tickets and accommodation or embark on your travel. This means you have a fallback plan if travel insurance is turned down due to your EMC. To gain access to care, you need your passport and a current Australian Medicare card. For more information visit (Use the search facility by entering Reciprocal Health Care.) For destinations not covered by the agreement, look into the state of medical care in each country because under the terms of your travel insurance, you may have to personally cover the cost of any treatment you require. For example, Japan doesn t come under the Reciprocal Health Care Agreement but is very medically advanced, so you need to look at the cost of care to ensure you can afford it, if required. Communication is another consideration. Is not having an English-speaking doctor/surgeon cause for concern and would this worry you or your travel partner, should the worst happen? If the answer is no, go ahead, but if you have reservations, consider another destination. Your chosen travel insurance provider will always ask you to submit a pre-existing medical assessment. Based on that assessment, they will either turn you down or accept coverage and require an additional premium payment. The premium is often based on the number of days away, but can vary between travel insurers. If you are denied travel insurance, you have to ask yourself if you really want to travel. While travelling is a marvellous experience, you do need to know all the facts first, so you are fully informed when making decisions. For more information and guidance, contact Leisa Burdette, Travel Managers Australia on or leisab@travelmanagers.com.au. LFQ CEO Peter Johnstone with Julia Wilkins and LFQ president Beverley Mirolo OAM. Julia Wilkins Research Grant Leukaemia Foundation Quest winner, Julia Wilkins, will continue to have a research project named in her honour for another 12 months which aims to better understand myeloma. In July, Julia received the Foundation s President Award as the highest fundraiser for the 2010/2011 Quest, raising more than $25,000. This is the second year that Julia has won this award, and she has chosen to continue to have her name linked with this important research. As a myeloma survivor, Julia chose a project being undertaken by the Mater Medical Research Institute which aims to use the body s immune system to target myeloma. Project chief investigator, Dr Slavica Vuckovic, said the Julia Wilkins Research Grant would help the institute s myeloma research team continue its work developing a new model to better understand the disease. Light the Night The Leukaemia Foundation s Light the Night walk will be held in 12 locations around Queensland this year, giving participants an opportunity to support those who have been affected by leukaemias, lymphomas, myeloma and related blood disorders. Light the Night will be held on Wednesday, 5 October at its newest location, Hervey Bay along with the 11 previous locations, Brisbane, Bundaberg, Caboolture, Cairns, Gold Coast, Mackay, Port Douglas, Rockhampton, Sunshine Coast, Toowoomba and Townsville. The event cultimates in a leisurely walk with participants holding coloured lanterns white for patients and survivors, blue for supporters and gold for those remembering a loved one lost. To register for the event, please visit or phone

8 Seminar schedule The following educational seminars will be held at ESA Village, South Brisbane (unless indicated otherwise). For more information or to make a booking phone Autologous stem cell transplants in the treatment of myeloma Guest speaker: Date: Time: Diana Moore (Advanced Practice Nurse) Tuesday, 13 September 11am for 11.30am start Making my life better with exercise: What is realistic? Guest speaker: Date: Time: Karen Anderson Tuesday, 8 November 11am for 11.30am start Queensland Support Services team Director of Support Services Barbara Hartigan Support Services Coordinators Sheila Deuchars Scott Martin Maryanne Skarparis Nicole Douglas Kate Arkadieff Michele Leis (Townsville) Grief Support Services Coordinator Shirley Cunningham Support Services Administration Officer Marian Marshall General support events Carers group A four-week course on Thursday mornings at 10am: Course 3 18 August, 25 August, 1 September, 8 September Course 4 3 November, 10 November, 17 November, 24 November Subjects covered: Week 1 - The role of the carer Week 2 - Emotional rollercoaster ride Week 3 - Carer burnout Week 4 - Strategies for coping Taking Control by Arthur Alexander Saturday, 12 November at 9.30am Look good, feel better Wednesdays: 7 September, 2 November at 10am Nuts and Bolts All about bone marrow transplants, presented by Dr James Morton Thursday, 11 August at 2pm Grief support brunches Saturdays: 17 September, 3 December at 10am For help call Brisbane: or Townsville: or visit 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 blood cancers. 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 at 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

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