Chronic Lymphocytic Leukaemia News w w w.l eu ka e m i a.o rg.a u Caring for people with Chronic Lymphocytic Leukaemia and their families A p r i l 2 011 CARMEL LOVES HER NEW LEASE ON FARM LIFE Carmel Bainbridge made some radical changes to her life after treatment for breast cancer more than 20 years ago. To get closer to the “natural side of things” she moved from living in a Perth beachside suburb, to the outskirts of the city, after finding a beautiful 12-acre property. Her idyllic rural lifestyle on Mimsbrook Farm, was adversely affected at the beginning of 2010 by her diagnosis with chronic lymphocytic leukaemia (CLL). When Carmel first moved to the farm, her intention was to simply enjoy living there. However, discovering the property had rich flood plain soil, and seeking organic food for her own health and wellbeing, she “started reading up” on biodynamic farming. There were already 500 citrus trees on the property and Carmel started growing seasonal vegetables. Her little garden got bigger and bigger and she got full biodynamic certification. Her son, Steve, who lives in Perth, helps her to run the farm and the organic shop they own in the city. Carmel indulged her love of animals and has three cows, a minature pony, a couple of sheep and 120 chickens to keep her company. As well, her beloved kelpie, Skipper, is always by her side and rides with her on the quad bike she bought to help her get around the property. Carmel Bainbridge with her companion, Skipper, on Mimsbrook Farm “They’re purely my pets, but I use the cow manure to fertilise and they all just live their lives in luxury. They’re wonderful for me,” said Carmel, 74, who believes in the importance of “finding something that gives you a lovely feeling in your heart”. “All this has been amazingly healing – I feel great every day.” The house on her property was originally “very ordinary”, so Carmel undertook renovations and extensions and created bed and breakfast accommodation so she could share her “little farm” with guests. Recalling when she’d been diagnosed with CLL, over the previous two years it had taken her a long time to get well after a cold, and she noticed she felt tired and lacked her usual energy. “On the farm, there’s always something to knock yourself with,” said Carmel, and when a wound from a stick wouldn’t heal, she went to the doctor and that’s when CLL showed up in a blood test. She was treated from April to July last year with four doses of chlorambucil. The first dose included prednisolone but this was discontinued because Carmel said the drug “scrambled my brain, making me feel agitated and it was difficult to do the farm’s bookwork”. “When first diagnosed, I didn’t know anything about CLL or what I was in for,” said Carmel. “I looked on the Net and called the Leukaemia Foundation to see if I could get a newsletter. “The lass I spoke to was very helpful. It was heart-warming to talk to someone about my concerns and she told me about an information day. Later I got a call to see if I would go. OFATUMUMAB + FC REGIMEN TRIALLED A small phase II* trial has evaluated the safety of varying doses of ofatumumab when it replaces rituximab in the FCR** regimen for people with previously untreated CLL. This would create a new regimen, called O-FC**. FCR is a common treatment regimen for CLL. The O-FC trial replaced rituximab with ofatumumab, and then compared two different doses of the drug – 500mg and 1000mg. The O-FC regimen was administered in six four-week cycles, and the key result of the randomised trial is the O-FC regimen can be given safely. Ofatumumab is a new human monoclonal antibody (for the CD20 protein – the same protein targeted by rituximab) and has approval by the US Food and Drug Administration for treating CLL that is resistant to both fludarabine and alemtuzumab. The O-FC trial showed ofatumumab was well tolerated, with a similar toxicity to rituximab. It was also shown to cause similar mild to moderate reactions as rituximab, mostly with its initial doses. Rituximab combined with chemotherapy has already improved outcomes for people with lymphoid diseases and researchers have questioned whether O-FC may yield better outcomes than FCR, in a head to head comparison. The results of this study provide useful phase II data that are required before embarking on a larger randomised trial for O-FC. Another combination being considered for a study is bendamustine plus rituximab, to see how it compares with FCR and O-FC. The Leukaemia Foundation’s National Manager, Support Services, Anthony Steele, said it was great to have new treatment options in the pipeline that showed promise for people with CLL. “They give hope to the thousands of Australians living with the disease,” he said. If you are on a clinical trial for your CLL, the Foundation would love to hear about your personal experience. Would you recommend that others take part in a clinical trial? To share your thoughts, contact Anthony Steele: [email protected]. * A phase II trial gathers data on a treatment’s safety. This trial did not compare the effectiveness of ofatumumab compared to rituximab ** FCR: fludarabine and cyclophosphamide combined with rituximab; O-FC: ofatumumab combined with fludarabine and cyclophosphamide CARMEL LOVES HER NEW LEASE ON FARM LIFE “When I said transport was an issue, they had one of their volunteers come and pick me up. I was treated like royalty and I met quite a few nice people and had afternoon tea, and then I was taken home. “I was blown away with this kindness. It was fantastic. I can’t speak more highly of the Leukaemia Foundation. I went through breast cancer without any support and it was very clinical and frightening.” Since finishing her CLL treatment last July, Carmel has been on a cruise to Japan and eastern Asia with her other son, Jeff, and four of her grandchildren. And earlier this year, Carmel took Skipper with her when she spent two weeks in Brisbane staying with Jeff’s family. “I had a beautiful rest and I’ve come back feeling 100%,” said Carmel. Having CLL has made Carmel feel “a bit vulnerable”. “It’s a whole new ball game and it affects how you feel and how you cope. “I’m just getting my head around how this jolly leukaemia is affecting me,” she explained. “I’m having to make some tough decisions and I’m learning to let go and slow down. I don’t have a choice, because physically I can’t do what I was doing. “Steve is having to do much more on the farm and now I am out of the picture in so many ways,” said Carmel, who previously was kept busy ordering seedlings, overseeing and helping with the planting and harvesting, and packing boxes of organic produce for customers at their shop. “I realise I have to be cautious now too, and not put myself in situations where I could have an accident. Any tiny scratch becomes a major issue. “I’m continuing with a healthy lifestyle and good nutrition, eating lots of fresh vegies and salads. “I keep the mindset right and always have some plan for the next day." Carmel with some of her pets who enhance her life PROMISING NEW CLL GENE DISCOVERY In a significant breakthrough for CLL patients, Australian research groups believe they have identified a gene involved in CLL development that could be used one day as a target for future CLL treatments. In collaboration with US and Chinese investigators, the discovery came after nearly a decade of studying biological samples from families with an inherited predisposition to CLL. Recent advances in gene mapping and sequencing technologies enabled the collaborators to look closely for the first time at key regions of DNA previously identified, to find variations that cause CLL. Large-scale analyses were performed on selected DNA samples from 13 families in which two or more members had been affected by CLL. Both affected and unaffected individuals were included in the search for genetic mutations triggering CLL. The Leukaemia Foundation funded part of the project led by haematologist and Senior Lecturer in Medicine at the University of Sydney, Dr Stephen Fuller. Other centres involved in the project were the Howard Florey Institute and the Walter and Eliza Hall Institute of Medical Research, in Melbourne, and the Centre for Cancer Biology, SA Pathology, in Adelaide. “There were obviously limitations as to how far down we could focus when scanning three billion base pairs and over 25,000 genes,” said Dr Fuller. “However, we’re confident we’ve discovered at least one gene which has a role in causing CLL to develop in one of the large families involved in the study,” he said. “It’s a great feeling because this gene looks very promising. However, we’ve got some work to do to confirm our finding and see how common the gene is – whether it’s also a factor in other families. “If it can be more broadly applied to other families, and even in sporadically occurring CLL cases, that would be very exciting because there would be a real possibility of developing new drugs to specifically target the gene.” Dr Fuller estimated it would take at least another 10 years to fully understand the role of the candidate genes discovered in their research, and to identify molecules to target the genes as potential new drug treatments. Dr Stephen Fuller: “This gene looks very promising” He plans to continue with the research until it has a treatment application for patients. “As a haematologist, I see patients with CLL and other types of leukaemias every day, so exciting breakthroughs such as this one give me great hope that my research will make a difference. “I really am indebted to our patients, the Leukaemia Foundation and other funding groups, and everyone who’s helped out on this project over the years. “We’re now in the process of trying to secure longer term funding to continue our research, but it is hard to get because our findings are still at an early stage, and the government funding bodies usually want to see an immediate return for their investment.” The Leukaemia Foundation would like to extend its gratitude to the late Mr James Selim for providing $100,000 to fund a one-year Grant-in-Aid in 2010 for this research project. Families with a history of inherited CLL and/or other blood cancers, that are not already included in the databases of the Australian Familial Haematological Cancer Study, are invited to contact Dr Fuller ([email protected]) or research nurse Kerry Phillips ([email protected]) to register to be involved in CLL research. RITUXIMAB RECOMMENDED FOR PBS LISTING Rituximab has been recommended for listing on the Pharmaceutical Benefits Scheme (PBS) for people with CLL, in combination with fludarabine and cyclophosphabide. The Pharmaceutical Benefits Advisory Committee made this recommendation at its November 2010 meeting. The PBS listing date has yet to be announced. The decision follows Therapeutic Goods Administration approval of rituximab (MabThera®) in January 2010, for treatment of patients with CD20 positive CLL in combination with chemotherapy. This approval is based on compelling results from the pivotal international phase III CLL8 study by the German CLL Study Group and Professor Michael Hallek of the University Hospital Cologne, Germany. The study demonstrated that patients treated with rituximab lived longer without their disease progressing, reducing the number of frequent hospital visits. The study was conducted at 191 study sites across 11 countries and included 817 CLL patients receiving first-line treatment. In the randomised study, patients received either rituximab in combination with chemotherapy (fludarabine and cyclophosphamide) or chemotherapy alone. The results showed patients who received rituximab in combination with chemotherapy (FCR) as first-line treatment lived an average of eight months longer without their cancer progressing than patients who received chemotherapy (FC) alone. “Data from the CLL8 trial suggests that rituximab used in combination with chemotherapy has the potential to become the standard of care for the treatment of CLL,” said Professor Hallek. IMMUNE SYSTEM THERAPIES PROMISING New therapies that stimulate the immune system may be beneficial in treating in treating CLL. The Leukaemia Foundation has funded Associate Professor David Ritchie and Dr Paul Neeson – who co-head the Haematology Immunology Translational Research Laboratory at Melbourne's Peter MacCallum Cancer Centre – to investigate new treatments to activate CLL cells* and the immune system. While it may seem unusual to promote cancerous cell activity, the researchers have compelling preliminary data that immune stimulating substances can modify CLL cells to activate, which then stimulates an anti-cancer immune response. Known as adoptive immunotherapy, in theory it could be possible to use the treatments in combination with chemotherapy to trigger a patient’s immune system to eradicate all CLL cells. Dr Neeson and Associate Professor Ritchie and their research team Associate Professor Ritchie and Dr Neeson are looking at an antibody to activate CLL B-cells in combination with alphagalactosylceraminde and the drug, lenalidomide (or Revlimid®) to stimulate the immune system’s natural killer T-cells. According to Associate Professor Ritchie, while the three reagents are being trialled or used for treating human cancer, they have yet to be applied to CLL. The laboratory is also developing a new ‘humanised’ model of CLL with funding from the Leukaemia Foundation. The pre-clinical model will be used for assessing potential CLL treatments for humans. A breakthrough in itself, creating the model will be critical to their latest research project. Until now, testing new CLL drugs in the laboratory has been limited, according to Dr Neeson. “The pharmaceutical companies have been wary about using some of these therapies to treat CLL in case they over stimulated the CLL B-cells. However, we have good evidence that this won’t happen. Our research indicates they will stimulate the immune system to fight CLL B-cells,” he said. “When new drugs have been tested in clinical trials, the results have often been disappointing, and we believe that this poor result has been due to a lack of good CLL models to test new drugs,” he said. “If our research turns out the way we think it will, it will be a reassuring step for trialling these reagents in humans. No one has taken these steps yet but we felt this was something that needed to be looked into further. “And we’re certainly on the right track, with our collaborators from the Malaghan Institute of Medical Research winning the ‘Best Research Award’ at the 2010 Haematology Society of Australian and New Zealand for their preliminary work in treating CLL cells with alpha-galactosylceraminde,” said Associate Professor Ritchie. Through collaborations with pharmaceutical companies, Associate Professor Ritchie and Dr Neeson have assembled human-approved, clinical-grade reagents to undertake their research into CLL. Theirs is the only Australian laboratory with this unique set of clinically relevant reagents, along with a stored source of CLL samples. If their results prove promising, they will be able to move straight into clinical trials. A new model which simulates the CLL micro-environment in humans will greatly help researchers identify how to target the disease more effectively. “This will ensure better testing of new drugs prior to clinical trials and a higher success rate. We’ve completed the preliminary work and are now moving on to growing patient cells,” said Dr Neeson. Associate Professor Ritchie said the model would help ensure the direct translation of their CLL research into the clinic. “We needed this humanised model to ascertain that the reagents we’re testing can be used safely, that human CLL B-cells won’t go crazy, and that the human immune system will be stimulated to fight the CLL cells,” he said. The CLL project is central to the Haematology Immunology Translational Research Laboratory, which is focused on using patients’ own cells to fight their cancer. * CLL cells are cancerous B lymphocytes, or B-cells, a form of white blood cell POTENTIAL NEW TREATMENT FOR CLL - GA101 The development of a potential new therapy, GA101, shows great promise for people with CLL. GA101 is a new monoclonal antibody that targets the CD20 antigen on B-lymphocytes. Although CD20-targeted therapy with rituximab has greatly enhanced outcomes for patients with CD20 positive CLL, resistance to rituximab can be a major problem. A better understanding of rituximab resistance has led to the development of new, improved second-generation anti-CD20 antibodies, including GA101. Early trials suggest that the GA101 therapy works more effectively than rituximab in targeting B-CLL cells. In an initial phase I trial, patients with relapsed or refractory (resistant to rituximab) CD20 who had no alternative treatment options, were treated with the GA101 antibody. Since the trial began in January 2008, 22 patients in Canada, aged between 47 and 77 years, have been treated with GA101 at doses varying from 100mg to 2000mg. The drug was well tolerated and considered safe at all dose levels trialled, and is currently in phase I/II clinical trials to test how effective it is in treating CLL. An international trial by the German CLL study group is now comparing the effectiveness of GA101 compared to other currently available treatment regimens. At present, GA101 is not registered for use in Australia by the Therapeutic Goods Administration. THE ‘WATCH AND WAIT’ CHALLENGE One of the most challenging aspects of being diagnosed with CLL is the statement ‘watch and wait’, says facilitator of the Leukaemia Foundation’s national CLL telephone forums, Cathy Paine. “This is the one overwhelming thing that has jumped out at me over the last year as I’ve talked to peopIe with CLL,” said Cathy, a support services co-ordinator. “When first diagnosed with CLL, most people will be told they need to ‘watch and wait’ or, more to the point, ‘watch, wait and worry’. “To be told you have leukaemia is devastating and frightening. “To be told “we are going to do nothing about it and just watch it at the moment” is an enormous psychological challenge,” Cathy explained. “On the other hand, nobody is keen to move on to treatments like chemotherapy unless absolutely necessary, especially as almost a third of all people diagnosed with CLL will never actually require treatment. It’s quite a conundrum. “While ‘watch and wait’ is a valid approach for CLL, many people find it hard to sit by and do nothing, which can leave them feeling extremely powerless.” As a consequence, Cathy said many people find they regain some feeling of control over their situation by setting out to change their lifestyle, or their diet, or both. By taking a proactive approach to having a healthy body, focusing on nutrition, complementary therapies, stress management and exercise, they feel they may be able to prolong the ‘watch and wait’ period, with the goal of never having to move on to chemotherapy-type treatment. Some seek advice outside the area of conventional medicine. This may include searching the internet, which Cathy said can be a minefield of conflicting information. “Forums such as our regular CLL telephone forum can help people to feel less isolated and assist in giving them back a sense of control,” she said. “We often have guest speakers on the forum, such as nutritionists and haematologists who are experts in their field, so good and current information is easily accessible. “Discussing concerns, tips and advice on the forum with these experts, as well as with other participants who have CLL, can also alleviate some feelings of isolation or powerlessness,” Cathy said. “The most important message is for patients to receive good Facilitator, Cathy Paine advice from credible sources who recognise that the treatment of CLL is highly individual, as is the response to any medication, ‘natural’ or otherwise. “It is also critical for everyone with CLL to inform the haematologist who is providing their medical care, about what they are doing that may help keep their disease at bay – including any natural therapies.” To participate in the national CLL telephone forum, please contact Cathy Paine on 02 6663 1288 or email: [email protected]. You may also like to access the Leukaemia Foundation’s online discussion forum: www.talkbloodcancer.com. AUSTRALIAN RESEARCHERS DISCOVER NEW CELLULAR PROTEINS THAT MAY PROMOTE CLL An Australian research team has discovered two proteins that appear to play a role in in CLL cells surviving. surviving chemotherapy treatment. Associate Professor Devinder Gill Based at the Princess Alexandra Hospital and The University of Queensland Diamantina Institute in Brisbane, Associate Professor Devinder Gill and Associate Professor Nigel McMillan led a study into two new cell survival proteins they identified in CLL cells. The pair was awarded a 2010 Leukaemia Foundation Grant-in-Aid funded by Roche Products Pty Ltd to undertake the research. They found the proteins were elevated in CLL patients’ blood, while also accumulating vital information about the leukaemia micro-environment (the normal cells and tissues that the leukaemia lives with) and how it promotes CLL cell survival. According to Associate Professor Gill, their results supported the notion that these proteins may play a role in CLL disease progression. “We showed that these newly discovered proteins are produced by healthy cells in the leukaemia microenvironment, and that CLL cells have the ability to respond to these survival signals, allowing them to evade potent chemotherapy treatments,” said Associate Professor Gill. “Our results will definitely help expand the current understanding of the proteins involved in CLL cell survival. “And we’ve confirmed a potential biological role for these proteins in CLL, perhaps providing a target for a new CLL treatment to be developed,” he said. Associate Professor Gill extended his gratitude to the Leukaemia Foundation, Roche Pharmaceutical and the Australasian Leukaemia & Lymphoma Group Tissue Bank for their support of the research project. CLL HASN’T STOPPED PIERS BEING “AS B Being diagnosed with CLL in 2003 came completely out of left field for Piers Hartley, and proved to be a double whammy for the retired school principal. When Piers had a blood test because he had diabetes in his family, CLL was picked up along with Type 2 diabetes. Although Piers, 69, of Mt Beauty, in Victoria’s northeast, said he had no CLL symptoms, he believes he may have had the condition for a while. When he went to see a general physician after his diagnosis, Piers was told his diabetes was much worse than his CLL. “My GP said - ‘I won’t see you again for your CLL for 20 years. If you’re going to get cancer, this is the best one to get’, so I came home and felt very pleased about that,” he explained. “However, his comment was wrong, and this is a common misconception by some medical practitioners. CLL varies a lot from one person to another and some cases need prompt medical treatment. “Much better diagnostic tests are available today and anyone now diagnosed with CLL should seek the advice of a haematologist, preferably one with specialist CLL expertise,” said Piers. Piers Hartley and his wife, Margaret To keep an eye on the CLL after this diagnosis, Piers had a full blood count every six months with his local doctor, but gradually his lymphocyte count started to go up. Over three years, it went from 15% at diagnosis, to 60-70%, and when Piers started getting swollen lymph glands, he was referred to a haematologist in 2006. “He was quite encouraging and said he’d watch and wait and when it got to a certain level, we’d talk and do something about it.” Piers’ levels continued to increase over the next 18 months and when this rise became more rapid, he started a course of oral chemotherapy (chlorambucil) for several months. “It had a modest impact and reduced my lymphocyte count initially, but didn’t hold it,” said Piers, and when his count reached 180, in April/May 2009, Piers began a course of rituximab. “Again, the treatment had some affect, but didn’t deal with it,” said Piers, and in September that year, he chose to go to Melbourne to start a six-month course of the combination treatment, FCR*. YOGA IMPROVES SLEEP AND REDUCES FATIGUE Practicing yoga may improve sleep, reduce fatigue and boost the overall quality of life for people with CLL. According to findings of the largest scientific study to examine the value of yoga specifically designed for cancer survivors, participants also reported reducing their need for sleep medication. “Physicians frequently have trouble discussing these approaches with patients, but this study applies real science to the issue,” he said. “This is a readily applicable approach that improves quality of life and reduces medicine intake in cancer survivors. This is a real positive,” said George W. Sledge Jr, MD, president-elect of ASCO. The cancer survivors who participated in the study were enrolled in a specialised program known as YOCAS (Yoga for Cancer Survivors) that includes breathing exercises, gentle hatha and restorative yoga postures, and mindfulness exercises. As reported in the journal, Medscape Oncology, complementary medicine, including yoga, is common among cancer survivors, particularly women. Dr Sledge pointed out that this study is “a creative application of scientific technique to complementary and alternative medicine approaches”. The classes were 75 minutes long and participants attended twice a week for four weeks. Once they began a yoga program, participants decreased their use of sleep medication by 21%, compared with the control group, who increased their use of sleep medication by 5% during the same time period. The results of the study were presented at the American Society of Clinical Oncology (ASCO) 46th Annual Meeting in Chicago, Illinois last year. BUSY AS EVER” “It was brilliant. It just knocked the lymphocytes right out, and over three months they went from 180 to zero. It absolutely did the trick, and quickly.” “I live in a small rural town and I use the internet a lot. It’s a wonderful source of helpful information and there are some fantastic CLL patient websites. After the fifth cycle, in January 2010, Piers stopped the treatment because he was too sick and his blood counts were very low. “I check in every day to see the latest posts, but you have to be careful and not take everything as gospel. When I go to the doctor, I tell him what I’ve read and we discuss it – it is a most helpful relationship. “I felt pretty awful, had no energy, was very tired, and susceptible to infection.” “A subtle thing about CLL is that it’s not a physical tumour. It’s not visible and I think the long-term effect of that hanging over your head can be quite draining. This is something family, friends and medical practitioners all need to be conscious of in providing care and support for people with CLL. Over the next four months Piers was unwell, was hospitalized for an infection, and developed skin rashes, which required a course of prednisolone. “It fixed my immune system within a few days and I have been fine since then. In a short time my blood counts improved, I got my energy back, and I haven’t had any problems since.” Piers is getting on with life Piers said the Leukaemia Foundation had helped him in several ways, although he “didn’t get connected with the Foundation” until well into his CLL journey. ** “When I was in Melbourne, they provided financial assistance and accommodation close to the hospital. “I was involved in the Foundation’s review for the update of the CLL information booklet and I take part in the CLL telephone forums, which I think are both very good. “I’ve been on the Foundation’s website a lot and to the Talk Blood Cancer website forum (www.talkbloodcancer.com) where I put in my two cents worth, if it’s relevant,” he said. “I feel that from time to time, but you have to get on with life and not worry about the next blood test,” said Piers, who is as busy as ever. He started learning the flute, aged 59, has played in the local community band, and co-ordinates 50 volunteers who provide disaster recovery in the region, mainly for bushfires. “Having an accurate diagnosis, an approachable specialist and knowledge about the most appropriate treatments have all helped me have a sense of control over this disease, and allowed me to truly get on with my life.” * fludarabine (F), cyclophosphamide (C) and rituximab (R) ** Many people with CLL do not need treatment when diagnosed and often they are not referred to the Leukaemia Foundation as there is a perception that they don’t need the same support as those who are treated immediately. Study proves benefits of exercise A study shows exercise has the potential to relieve fatigue, which is the most commonly reported side-effect of CLL. Patients who exercised during cancer treatment experienced less fatigue, more vigour and less emotional distress than those who were less active, according to a randomized trial. Of the 138 who participated in the trial, 73 were randomised to the exercise group and 65 to the usual-activity group. The patients were newly diagnosed with prostate or breast cancer and had no other health problems or disabilities that limited their ability to participate. They weren’t exercising more than three times or 120 minutes per week when they enrolled in the study. The mean age of the participants was 60 years and they were to be treated with chemotherapy and/or radiation therapy. Each participant in the exercise group received an individual exercise prescription based on their physical condition. They were to walk briskly for 10 minutes, increasing to 30 minutes, five days a week. The walking intensity was designed to reach approximately 50% to 70% of maximum heart rate. A total of 93% of patients in the exercise group and 89% of patients in the usual-activity group completed the study. Increased aerobic exercise was significantly associated with less fatigue and those who exercised throughout the study period had 7.5% more vigour and 3% less emotional distress compared with those who were less active. A flexible, home-based exercise program has few risks and potential benefits for cancer patients, regardless of diagnosis, according to Dr Jennifer Wenzel who presented the findings at the 16th International Conference on Cancer Nursing. “Future intervention studies among patients receiving active cancer treatment should evaluate exercise guidelines specific to age or treatment type and, possibly, to cancer diagnosis,” said Dr Wenzel, assistant professor at Johns Hopkins School of Nursing in Baltimore, Maryland. “Exercise interventions are receiving increasing attention and have been shown to have some benefit,” said Mary Lou Siefert, DNSc, assistant professor at the William F. Connell School of Nursing at Boston College in Massachusetts. “I would continue to suggest to my patients that short amounts of exercise, such as walking, are helpful.” The Leukaemia Foundation offers education programs on the benefits of exercise. To find out when and where these are held, call 1800 620 420 or visit www.leukaemia.org.au (Services > Education & support programs). EDUCATION AND SUPPORT PROGRAMS NEW SOUTH WALES VICTORIA 5 Apr 7 Apr 7 Apr 12 Apr 14 Apr Tuesday Chat, Your Options in Aged Care, Coffs Harbour (also 10 May, 14 Jun) 19 May 1011.30am 1011.30am 10.30am12noon 10.30am12noon 10am12noon 6-8pm Patient Education Morning Tea, Alstonville 26 May 6-8pm South Coast Haematology Information and Support Group, Moruya (also 9 Jun) Stress Management/Relaxation, San Remo 5 Apr 1011.30am 11am Patient and Carers’ Coffee Morning, Shortland Wetlands (also 3 May, 7 Jun) Tuesday Chat, Port Macquarie 10.30am12noon 11am1pm Patient Morning Tea, Rural Cancer Care, Orange 10:30am12noon 10:30am12noon 10am12noon 1-3pm 2-3:30pm Young Haematology Information and Support Group, Young (also 2 Jun) Patient Morning Tea, Palliative Care, Bathurst (also 27 Apr) 8 Apr 13 Apr 19 Apr 28 Apr 11am1pm 11am1pm 1011.30am Stress Management/Relaxation, Erina Fair 3 May 10am11.30am Patient and Carers' Morning Tea, Interpreting Blood Results, Leukaemia Foundation Hunter office, Newcastle 5 May 10.30am12noon Patient Morning Tea, Dietician, Orange 10 May 10.30am12noon Tuesday Chat, Patient and Carers’ Morning Tea, Coffs Harbour Patient Morning Tea, Bathurst 12 May 2-3.30pm 5.307.30pm Laughter Therapy, San Remo South Coast Haematology Information and Support Group, Bega 25 May TBA 10.30am12noon Wednesday Chat, Tamworth Patient Morning Tea, Dietician, Dubbo 16 Jun 26 May 1011.30am Laughter Therapy, Erina Fair 18 Apr 1.30-3pm 31 May TBA Tuesday Chat, Taree 28 Apr 11am TBA TBA NSW Patient Conference, Sydney 9 Jun 10-11am Coffee Morning, Warnervale 1011.30am Coffee Morning, Erina Fair South East Melbourne Blood Cancer Information and Support Forum, Clayton Shepparton Blood Cancer Information and Support Forum Horsham Blood Cancer Information and Support Forum CLL Information and Support Forum, Preston TASMANIA 28 Apr 30 Jun Bone Marrow Transplant Information and Support Forum, Preston Mornington Peninsula Blood Cancer Information and Support Forum, Mornington Leukaemia Foundation Yoga Program, Preston (also 18 May) 19 Apr Hobart Blood Cancer Taking Control Seminar, The Role of the Social Worker Launceston Blood Cancer Information and Support Forum (also 17 May) AUSTRALIAN CAPITAL TERRITORY 12 Apr 20 Apr 6 May 20 Apr 10am-12 noon 11am1pm 9.30am3pm 11am1pm 6-8pm Canberra Haematology Information and Support Group, Narrabundah (also 10 May, 7 Jun) Nutrition Seminar and Practical Demonstration, Canberra Patient and Carers' Day, Relaxation, Dickson Community Centre, Canberra Nutrition Seminar and Practical Demonstration, CIT Reid Campus Seminar: Stem Cell Transplants, Canberra WESTERN AUSTRALIA 1 Jun Patient Support Group, North Perth (also 20 Jun; 18 Jul; 15 Aug; 19 Sep; 17 Oct; 12 Dec) Lymphoma Education Program: Eating Well, Subiaco WA Patient Conference, Perth NORTHERN TERRITORY 1 Apr 1011.30am Blood Cancer Support Group morning tea, Darwin (also 6 May) NATIONAL TELEPHONE FORUMS SOUTH AUSTRALIA Telephone forums are held regularly for CLL patients in regional and remote areas, and for metropolitan patients who have difficulty accessing the Leukaemia Foundation’s regular education activities. To find out more, and to register, contact your local support services co-ordinator on 1800 620 420. 14 Apr 10.30am Southern Metro Coffee Group, Reynella (also 12 May; 9 Jun) 19 Apr 10.30am North East Metro Coffee Group, Salisbury East (also 17 May; 21 Jun) 29 Apr 10.30am Strathalbyn Coffee Group (also 19 May; 16 Jun) To register for all education and support programs, contact: 27 May 10.30am Carers’ Coffee Group, Royal Adelaide (also 24 Jun) LEUKAEMIA FOUNDATION SUPPORT SERVICES PH: 1800 620 420 (FREECALL) 4 Jun 27 Jun SA Patient Conference, Adelaide 10am The Queen Elizabeth Hospital Carers’ Coffee Group, Adelaide For more information: visit www.leukaemia.org.au (Services > Education & support programs section) OUR VISION TO CURE AND MISSION TO CARE The Leukaemia Foundation is the only national not-for-profit organisation dedicated to the care and cure of patients and families living with leukaemias, lymphomas, myeloma and related blood disorders. The Foundation’s free services include emotional support, accommodation, transportation and practical assistance for patients and their families. It also funds research into cures and better treatments for leukaemias, lymphomas, myeloma and related blood disorders. The Foundation receives no direct ongoing government funding and relies on the continuous support of individuals and corporate partners to provide its services and to fund its research programs. To find out more about the work of the Leukaemia Foundation and how we can help you, phone 1800 620 420 or visit www.leukaemia.org.au. Roche proudly supports the Leukaemia Foundation in its educational activities through an unrestricted education grant. Disclaimer: No person should rely on the contents of this publication without first obtaining advice from their treating specialist.
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