About chronic myeloid leukaemia Chronic myeloid leukaemia (CML) can occur at any age but it is more common in adults over the age of 50, who account for nearly 70% of all cases. In Australia, around 249 people are diagnosed with CML each year. CML occurs more frequently in men than in women. It is rare in children (0-14 years) with around four cases per year diagnosed in this age group. CML is a rare disease, accounting for around 0.3% of all cancers diagnosed, at a rate of 1.3 per 100,000 of the population. 1800 620 420 www.leukaemia.org.au Shelley Bell had just turned 30 and was 10 weeks pregnant with her fourth child when the blood test to confirm her pregnancy showed she had leukaemia. Her obstetrician said she may have to think about terminating the baby and Shelley felt absolute disbelief at the situation that was unfolding. “It was a bit surreal and it didn’t really hit me because then the haematologist rang me straight away. I had to arrange a babysitter, call my husband and go straight to hospital. The haematologist said it was either chronic myeloid leukaemia (CML), which he hoped it was, or acute myeloid leukaemia (AML).” At the time, Shelley recalled Shelley Bell with her newborn, Amelie from her uni days studying to be developed and it was supposed to stop an occupational therapist that CML was the leukaemia from getting worse. the “dodgy one” and that it didn’t have a “It did get my blood to within normal good prognosis, but that was 10 years ago. limits so it was safe to have my baby,” At the Sir Charles Gairdner Hospital, explained Shelley who was sick in Perth, Shelley and her husband, Jon, throughout her pregnancy due to the a GP, were told there was a new CML Interferon. treatment – Glivec – and although not a At 20 weeks, an ultrasound showed cure, this targeted therapy prolonged your Shelley was expecting a healthy girl. life. But she couldn’t take this oral form of chemotherapy while she was pregnant. “It was so exciting and it got us through the rest of the pregnancy, dreaming of Shelley had a bone marrow biopsy and girls and pink,” said Shelley about the two days later the result confirmed Shelley impending arrival of their first daughter had CML: “My haematologist consulted who they secretly named Amelie. with his colleagues as to how to treat my CML as he had never known of a The Bells already had three sons, Lachlan, patient diagnosed with CML during their five, Isaac, three and Samuel, one. pregnancy. Shelley was induced at 37 weeks - as soon “In the end he put me on Interferon, which was self-injected every second day throughout the pregnancy. This was the treatment used before Glivec was as the baby could be born safely and she could begin the new treatment. Continued on Page 2 PAGE 1 Every year, across the country, World’s Greatest Shave participants strive to make the Top 30 fundraisers in their state. This is a significant achievement and is a major contributor to the final fundraising total for the national fundraising event. Each of the state Top 30 fundraisers also qualify to challenge for a place in the National Top 30 fundraisers. This year’s national group has an amazing variety of teams, from friends, individuals and clubs to a range of different industry corporates from across the country. Together, the National Top 30 contributed $1.6 million to this year’s fundraising total – a fantastic effort. NO. NAME STATE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 PricewaterhouseCoopers BHP Billiton Mitchell & Partners Xstrata Suncorp/GIO Rio Tinto IGA QNN Investa Property Group Bechtel Australia Pty Ltd Darcy’s Family and Friends nab Bellevue Hill Group Transfield Worley / Woodside Energy ESS Smith & Sons Engineering Team Tarong Energy & Thiess Meandu Mine Oxiana Limited Hall’s Greatest Shave Mayor Sonya Phillips Westpac PWCS Project 3Exp Glenfords Discount Tool Centre The Todhunter and Loneragan Family Stuart Bishop Cathy Mooney and Loma Willis Dorothy Pratt MP Worksite Fitness and Rehabilitation Beverley Uranium Mine St Marys Leagues Club Sentdale – Graincorp Wool VIC QLD QLD QLD NSW WA QLD NSW QLD WA QLD NSW WA WA QLD QLD SA ACT NSW NSW NSW QLD NSW QLD NSW QLD WA SA NSW VIC Rick Millen, Partner, PwC Foundation, left, and Peter Cox, CEO, Leukaemia Foundation of Australia Continued from Page 1 She went off the Interferon for a couple of days before the birth, to build up her strength, and Amelie was born on June 3. “She was born so healthy and against the odds,” said Shelley who began taking Glivec the following day. She takes one tablet every night. “I’ll take it for life if it works for me. It reduces the number of Philadelphia chromosomes in the body which stops the white blood cells increasing.” Shelley’s polymerase chain reaction (PCR) result was 129 when she was diagnosed on December 5 last year. It went up to 170 when she went on Interferon, then dropped to 22 after four weeks on Glivec, which is a really good result. “It’s so much easier compared to when I was pregnant. I feel quite well. Now it’s just a waiting game. “I have to see if I keep responding. I’m sure it will work, it’s going well,” Shelley said. She has a PCR test every three months and complete blood counts every month. During her pregnancy Shelley was well supported by family, friends and the church and now she has a nanny several times a week which is a huge help. 12 – 14 March 2009. Mark this date in your diary today and join thousands of Australians who will shave or colour their hair for the Leukaemia Foundation next year. From November 1, you can register online at www.worldsgreatestshave.com or call us on 1800 620 420 for more information. PAGE 2 “The Leukaemia Foundation has been wonderful. I rang them about nannies and they sent out a lady to play with the children so I could go shopping,” she said. “I also went to an information session on chronic leukaemia where I met someone else with chronic leukaemia who I’ve caught up with a couple of times.” The Leukaemia Foundation is helping to fund a clinical trial designed to improve treatment strategies for patients with chronic myeloid leukaemia (CML). The Foundation awarded an $81,225 Grant-in-Aid to the Institute of Medical and Veterinary Science Director of Haematology Research, Professor Timothy Hughes, to help fund a three-year Phase IV clinical trial of the drug Glivec, also known as imatinib mesylate. In the past decade, CML treatment has been revolutionised by Glivec, with more than 80% of newly diagnosed patients entering complete cytogenetic* remission after treatment with the drug. However, Professor Hughes, who is internationally renowned for his work in refining the treatment strategies for Glivec, hopes to develop better treatment strategies for patients who are resistant to treatment. He will be studying 100 CML patients resistant to Glivec. “If we can identify the different ways CML cells resist treatment, we can develop the best tests to predict responses and develop better treatment guidelines for clinicians,” Professor Hughes said. “There’s also the potential for our findings to lead to the development of new treatment strategies.” While it is known that more than 90 DNA mutations are associated with Glivec resistance, Professor Hughes Professor Timothy Hughes has found that in 60% of resistant cases with mutations, one of nine common mutations is involved. Treatment options for patients with these common mutations will be looked at as well. The study was co-funded by the pharmaceutical companies Novartis and Bristol-Myers Squibb. * No abnormal chromosomes detected in white blood cells. THE HISTORY OF GLIVEC: More than 150 years of research led to the release of the pharmaceutical drug, imatinib, to treat chronic myeloid leukaemia (CML). The drug acts selectively on an abnormal gene which is expressed in 90% of CML cases. 1845 1960 1973 1980s 1993 1996 2001 John Hughes Bennett first described chronic myeloid leukaemia Peter Nowell and David Hungerford discovered the Philadelphia chromosome, a single mutation which causes 90% of CML cases Janet Rowley discovered that the Philadelphia chromosome is a reciprocal translocation between chromosomes 9 and 22, forming the abnormal bcr-abl gene Novartis screened chemical libraries for a compound to inhibit the bcr-abl gene Dr Brian Druker began testing Novartis’ drug candidates Dr Druker in collaboration with Dr Charles Sawyers and Dr Moshe Talpaz began clinical trials. They demonstrated that the chemical stopped bcr-abl expressing cells from multiplying Novartis received FDA approval to market Gleevec (Glivec in Australia and Europe) In 2007, the Leukaemia Foundation awarded grants for more than 20 research projects. Some of the exciting developments into blood cancer treatments are listed below. • The Peter MacCallum Cancer Institute’s Associate Professor Ricky Johnstone, successfully demonstrated that when used in combination, two new experimental drugs killed several forms of drug resistant lymphomas. • Associate Professor Jacqueline Matthews, Associate Professor Joel Mackay and Professor Merlin Crossley from The University of Sydney developed new drug candidates to potentially treat T-cell leukemias. • Associate Professor Geoff Hill and Dr Kelli MacDonald from the Queensland Institute of Medical Research studied the roles of two types of white blood cells in directing the immune system after a stem cell transplant. The pair found one cell type suppressed while the other induced graft-versus-host disease. Their findings could lead to the development of a new immunotherapy. • PhD student, Leigh Ellis, completed his studies at the Peter MacCallum Cancer Institute. Leigh uncovered the mechanism by which two new anti-blood cancer drugs work. His work will facilitate the clinical development of these drugs and allow their combination with other chemotherapeutic agents. • Jennifer Hsu also completed her PhD in 2007. The Mater Medical Research Institute (Brisbane) student defined and validated four potential antigens for developing an immunotherapeutic myeloma vaccine. • South Australian Honours student, Subromata Das, found evidence for the role of a new gene in acute myeloid leukaemia, with defects in the gene leading to the uncontrolled growth of leukaemia cells. More extensive studies are being undertaken at the Child Health Research Institute, The University of Adelaide. • Honours student Dana Ihdayhid developed the basis for the clinical manufacturing protocol of mesenchymal stromal cells (MSC) at Royal Perth Hospital. This has allowed Lawrence Liew, a 2008 grant recipient, to study the role of MSC in stem cell transplants. PAGE 3 Clinical trials are the vital, final research stage in developing new medical treatments to improve people’s health and wellbeing. Phase IV - after approval, researchers continue to monitor the risks, benefits and optimal use of new treatments. They are the most exciting research stage, often following decades of comprehensive investigation, because they herald the arrival of a potential new treatment which can be used in humans for the first time. All new drugs and treatment regimens are legally required to go through clinical trials to ensure they are safe and effective. The benefits, side-effects and cost are also assessed. Clinical trials undertaken in Australia generally involve four sequential phases and in each phase, the number of people involved is increased. New treatments which successfully complete a Phase III trial are submitted to the Australian Therapeutic Goods Administration to be approved for general use in treating patients. Phase I – determines the safe dosage of a treatment to be given to a patient and whether there are major side effects. Clinical trials give blood cancer patients the opportunity to access a new treatment several years before it becomes routinely available. By taking part in a clinical trial, blood cancer patients also benefit future patients by enabling researchers to obtain essential information about the possible benefits while reducing side-effects of new treatments – details that cannot be discovered by any other means. Phase III – compares the new treatment with current standard treatments to work out which is best. Patients are carefully screened to assess their suitability for a clinical trial and are monitored throughout to ensure they are receiving the most appropriate treatment for their blood cancer. It is a patient’s choice to join a trial. They can withdraw at any time and return to the standard treatment for their type of blood cancer. The Leukaemia Foundation is helping to fund seven Australian clinical trials. drugs and innovative treatments simply wouldn’t proceed without the Leukaemia Foundation’s funding. Leukaemia Foundation of Australia CEO, Peter Cox, said the Foundation was committed to helping fund each research stage, including clinical trials, in developing new treatments and cures for blood cancers: “Clinical trials can be prohibitively expensive and some new “We’re proud to play a part in helping Australian blood cancer patients access new treatments and drugs sooner. However, our support is severely limited by our funding, so I would strongly encourage people to donate to our National Research Program,” Peter said. Phase II – tests how effective the treatment is and collects further information on safety. Phase Application Researcher Institution Funding I Post stem cell transplant: donor cells to treat viral infections Dr Emily Blyth Westmead Institute for Cancer Research (NSW) Clinical Fellowship, $300,000 over three years Dr Simon He Royal Melbourne Hospital Clinical Fellowship, $150,000 over three years Evaluating whether DNA PCR can distinguish CML patients who remain in molecular response from those who relapse if imatinib treatment is withdrawn Dr David Ross Institute of Medical and Veterinary Science (SA) PhD - $120,000 over three years II Risk-adapted IV melphalan in patients with AL amyloidosis Dr Peter Mollee Princess Alexandra Hospital (Qld) $103,000 IV Improved treatment regimens for chronic myeloid leukaemia patients resistant to the drug imatinib mesilate (Glivec) Professor Timothy Hughes IMVS (SA) $81,225 Grant-in-Aid Trialing treatment regimen for core binding factor acute myeloid leukaemia Ass/Professor Paula Marlton Princess Alexandra Hospital (Qld) $840,000 over seven years Trialing treatment regimen for acute promyelocytic leukaemia Ass/Professor Harry Iland Royal Prince Alfred Hospital (NSW) $70,000 Post stem cell transplant: dendritic cell vaccine for viruses New treatment for acute myeloid leukaemia New drug, CSL360, for acute myeloid leukaemia PAGE 4 Sarah Lukeman had two hours to decide whether to go on a clinical trial for a new treatment for acute promyelocytic leukaemia. “I had to sit in a hospital room and decide. I couldn’t do any research,” said Sarah. She had just arrived in Perth from Carnarvon, because she had “funny blood results” and had been told she had a very rare leukaemia subtype. “I just had to go with what the doctor recommended. He said in his experience people on trials tended to do better and there wasn’t a lot of downside to doing it.” That night, 17 March 2006, Sarah was the first patient in Western Australia to begin the trial – a 30-month program comprising the standard treatment plus arsenic trioxide. “What made this trial different was that it was not a drug company-led trial. Research on the drug came out of India and it was very cheap,” said the mother of two Hannah, eight and Katrina, six. Sarah, 39, finished her treatment when she took her last tablets in July but she will have three more bone marrow biopsies, one every quarter, to complete monitoring associated with the trial. “Everything’s fine. I’m in complete molecular remission. They can’t see any cancer at all,” said Sarah who is working at regaining her energy and stamina. This month (October) she headed off to the Middle East for three weeks with two of her sisters. Sarah described her participation in the Australia and New Zealand-wide clinical trial as “a great thing”: “There was a lot more rigour on the testing so I had more biopsies, blood tests and CT scans because they wanted as much information as possible for the trial. Sarah Lukeman in remission after new treatment trial “This meant I had a good idea of what was going on day-to-day during the early stages of treatment. “There were also certain requirements, such as keeping my platelet level higher than for the usual treatment.” Sarah had 12 bone marrow biopsies - more than normally necessary, as a result of the trial. They involve inserting a big needle into the pelvis to draw out a sample of bone marrow, called an aspirate. “But in the scheme of things it was a small inconvenience,” said Sarah. “I also had a lot of chromosomal assays done on the bone marrow aspirate so I know, that at a chromosomal level, no leukaemic cells have been detected.” A story on Sarah Lukeman was featured on page one of the Spring 2006 issue of The Carer when the family was staying at the Leukaemia Foundation’s Bassendean accommodation units. The family now lives in Perth. Dr Val Lishman, who was the first surgical specialist in Western Australia’s southwest area, has been appointed as a Community Ambassador for regional WA. The Bunbury resident immigrated to the area, three hours drive south of Perth, in 1965, where he played an instrumental role in the development of the Sports Fitness Assessment Centre, the South West Games and the Bunbury City to Surf Fun Run. His strong community focus saw Dr Lishman awarded with an Australian Medal and the Rotary International Paul Harris Award. The Val Lishman Health Research Foundation is about to celebrate 10 years of medical research and the investment of more than $1 million in health research in the area. In 2006, Dr Lishman was diagnosed with acute myeloid leukaemia and spent four months in the Royal Perth Hospital undergoing treatment. Now in remission, he has embraced his new role as Community Ambassador, Dr Val Lishman an ambassador. He assists the Leukaemia Foundation by attending education sessions and speaking with attendees (patients, carers and nurses). He will be a guest speaker for one of the Bereavement Support Groups and his participation in community presentations will help raise the Foundation’s profile throughout the southwest. PAGE 5 Do I start another bonsai, or do I plant annuals? That is how Nelva Carter asked her doctor about her prognosis when she was diagnosed with chronic lymphocytic leukaemia (CLL) 10 years ago. “I was told I could have two to three years of good quality life or I could have longer – it’s 10 years now,” said Nelva, an 86 year-old widow who lives at Mt Gambier. “I went shopping after the diagnosis and there were some sick looking roses in Coles. One looked as sick and near death as I felt, so I bought it, took it home and dropped it a hole. “The rose thrived and it’s absolutely beautiful, and I’m going along alright.” Nelva calls it her “leukaemia rose” and over the years she’s taken lots of cuttings which she’s given away to friends. She also has a cutting from the original rose growing at her retirement village. “It roots well and is a very vigorous and beautiful pink rose. Everyone who gets leukaemia can have one of my leukaemia roses. If anyone wants one, they can have a cutting,” said Nelva who also has started a bonsai. Having CLL is the least of Nelva’s health concerns, as she is recovering from a knee replacement, has deep vein thrombosis and suffers from arthritis. She is also a long-term cancer survivor, having first been diagnosed with lip cancer when she was an eighteen year old, and again more recently. Nelva Carter with Steve Marshall, Manager Support Services SA/NT “When I found out I had leukaemia, I was very sick and had a total lack of strength and energy,” said Nelva, who was initially treated for CLL. “I had massive doses of prednisolone which sent me psychotic and it took me four and a half years to get off it. It was worse than the CLL.” Nelva has several friends of a similar age who also have CLL. “My specialist said we get by as well with medication as without it. I’m assessed as fairly low level so I don’t take any medication for it now. I do have my blood monitored every little while. It shows I’ve still got it (CLL) but it’s not changing.” Nelva said she had received a great deal of assistance from the Leukaemia Foundation over the years and had received regular visits from the support services staff who she described as “very alive and kind people”. To help empower patients and carers, the Leukaemia Foundation offers disease-specific and general education programs in regional and metropolitan areas across Australia. The programs provide up-to-date information regarding diagnosis, treatment, recovery and how to deal with the emotional roller coaster associated with having a blood cancer. They also provide opportunities to hear from specialist doctors and allied health professionals and meet other people who have a similar diagnosis and may relate to their situation. The different stages of a blood cancer diagnosis are covered including the initial diagnosis, treatment, sideeffects as well as the physical, social and psychological impacts. Longer-term effects and life after cancer, including issues surrounding surviving cancer and grief may also be discussed. A range of disease-specific programs are available for people living with acute leukaemias, chronic leukaemias, lymphomas, myeloma, MDS, MPDs and amyloidosis. These programs provide tailored information and support and may include researchers and clinician guest speakers to provide updates on diagnosis, treatments and future directions in research. PAGE 6 Frankie Durack speaking at the information session The Leukaemia Foundation in Western Australia recently held a successful education program called Communication – how to get what you need, presented by Frankie Durack from Eika Counselling. The information session, attended by 45 guests, focused on keeping the lines of communication open so everyone affected by a blood disorder can be heard. Frankie’s experience covers a range of issues and specialty areas including cancer related issues, loss, grief, bereavement and chronic illness. For information on programs in your state, contact the Leukaemia Foundation on 1800 620 420 or visit www.leukaemia.org.au. Julienne Baker, left, Sue Andruskin with her grand-daughter, Avalon Coleman, centre, and the late Ian Baker, right Sisters, Julienne Baker and Sue Andruskin, both have chronic lymphocytic leukaemia (CLL) - a cancer that runs in the Baker family. Their father, grandfather and great grandfather all died of leukaemia. One of their father’s brothers has CLL and his two sons have precursors to the disease. Another of their father’s brothers who died of skin cancer also had CLL, and his son has CLL. It turns out that their family is the largest known family with CLL and the Bakers became the subject of a familial study published in the May 2008 issue of the British Journal of Haematology. Julienne’s and Sue’s father, Ian Baker, was diagnosed with CLL when he was 37 and died 10 years later. “He never told us. He just said he had a funny thing happening in his blood,” said Sue. “He had blood tests regularly, used to get tired a lot, had nosebleeds and often got the flu. The last time the flu turned into pneumonia and pleurisy, he went into hospital and a couple of days later that was it.” Until the younger of the two sisters, Julienne, 46, was diagnosed eight years ago, Sue thought that it was “a male thing”. “Then when Julie was diagnosed, I thought it had skipped me,” said Sue. “But it hadn’t.” Sue, 53, was diagnosed a couple of years later. Both sisters live at Erskine Park in western Sydney and they both see Professor James Wiley at Nepean Hospital. “He said it would be helpful if we could find any other family members with the disease,” said Sue, who began looking into the family tree. She discovered their great grandfather had married twice, fathering 24 children. Sue contacted one of his grand-daughters from his second marriage. “The more I went into it, the more people I found who had CLL listed on their death certificates.” Blood samples were taken and DNA tests revealed that of 144 family members, 11 have CLL and a further five have a precursor form of the disease. “CLL is a slow growing leukaemia and for most people you have it and you die of natural causes,” explained Sue. “But for some reason, mine has gone crazy.” Sue used to see Professor Wiley every four months but now it’s every two weeks. Her white cell blood count got up to 144 and five months of chemotherapy brought it down to nine. “Then I came out with a rash five months ago and nobody knows what it is. “The CLL is acting differently in Julienne,” Sue said. Julienne was diagnosed after having pneumonia for 12 months and her only treatment is a monthly immunoglobulin transfusion, to help boost her immune system. “I got last prize in the lottery,” said Julienne, who has developed cold agglutinin, a rare autoimmune disease, and her latest blood test showed her leukaemic cells had jumped 25%. “I know it’s going to happen but I’ve pushed it to the back of my mind because I don’t want to live my life with one foot in the grave. “I just have to accept it but I’m really worried about my kids, my sisters’ kids and everyone else’s kids getting it,” said Julienne. “That’s why I transferred to Professor Wiley. He was doing a lot of research and if there’s even an inkling they can help our kids, I’ll do what I can.” CHRONIC LYMPHOCYTIC LEUKAEMIA B-cell chronic lymphocytic leukaemia (CLL) accounts for around 25% of all leukaemias and is the most common lymphoid malignancy in Western countries. The risk of developing CLL increases with age. Almost 80% of all new cases are diagnosed in people over the age of 60 years. CLL is rare in people under 40. It occurs more frequently in men than in women. Approximately 10% of CLL cases have a family history of the disease or a related B-cell lymphoproliferative disorder. PAGE 7 The Leukaemia Foundation is funding the development of a new pharmaceutical treatment for childhood leukaemia. In 2008, the Foundation awarded a $94,000 Grant-inAid to Children’s Cancer Institute Australia for Medical Research scientists, Dr Michelle Henderson, Dr Rosemary Sutton, Professor Murray Norris and Professor Michelle Haber, to continue their research into a new drug to treat a lethal form of infant leukaemia. While almost 80% of children survive leukaemia, the survival prognosis is dismal for infants, many of whom develop an aggressive subtype which expresses a defective form - the MLL gene, according to Dr Henderson. “The eventual outcome for these children is poor, largely due to toxicity from the harsh drug treatment they receive, so there is a desperate need to develop less intensive, more specific treatments for this disease,” she said. In a bid to develop a highly specific treatment, the researchers spent two years screening a library of more than 34,000 compounds to identify drug candidates which targeted the abnormal MLL gene. After several cycles of screening, they identified six closely related compounds with strong specificity towards the leukaemia gene and are working with specialised chemists to design a range of active compounds that can be tested for their suitability for clinical use. “It’s exciting to be on the cusp of breaking the vicious treatment cycle facing infants with leukaemia and their parents,” said Dr Henderson. “Our hope for these patients is that in the near future it will be possible to treat them with a specific MLL drug which has few or no sideeffects.” If the research is successful, a new treatment could be available to treat children within the next 10 years. Dr Michelle Henderson In addition, Dr Henderson and Dr Sutton are collaborating on an international clinical trial, Interfant-06. Joining with clinical groups in more than 16 countries, their team will assess monitoring and treatment regimens for infant ALL to help improve survival rates. “The results from our participation in the Interfant-06 study will help ensure children receive the optimal level of treatment for their leukaemia. Ultimately, this will maximise the potential for cure, while reducing the potential for side-effects, ensuring the best possible clinical outcome for these patients,” said Dr Henderson. September saw the launch of a new and magical event for the Leukaemia Foundation. Light the Night was piloted in South Australia, Western Australia and Queensland this year and will be rolled out to the rest of the country in 2009. Thousands of participants came together with glowing balloons of different colours with a special meaning. Gold balloons remembered a loved one, white balloons celebrated being a blood cancer survivor and blue balloons gave hope as a supporter of the Leukaemia Foundation. The inaugural Light the Night in Adelaide In Western Australia, Light the Night was held at Burswood Park, near the bank of the Swan River. Johnny Young of Young Talent Time fame and radio station 6IX was MC and Network Ten did a live weather cross, following on from a national news story the previous Sunday. In South Australia, Elder Park was the picturesque PAGE 8 location of Light the Night where the expected crowd more than doubled as the event began and a range of on stage entertainment added to the evening’s special atmosphere. In Queensland, Southbank in Brisbane and Fogarty Park in Cairns hosted Light the Night simultaneously. The threat of rain in Brisbane didn’t dampen enthusiasm for the event and in Cairns, numbers also exceeded expectation. With Leukaemia Foundation funding, scientists from the Children’s Cancer Institute Australia for Medical Research (CCIA) in NSW are making significant advances in improving survival from childhood leukaemia. The Foundation awarded more than $250,000 to four CCIA scientists in 2007 to study the secrets of leukaemia cells resistant to conventional treatment. Associate Professor Maria Kavallaris in collaboration with Associate Professor Richard Lock and Professor Peter Gunning (Pharmacology, UNSW) discovered a new way in which leukaemia cells resist anticancer drugs. The team focused their studies on ‘microtubule-targeted’ chemotherapy drugs, such as vincristine, that are commonly used to treat childhood leukaemia. “We were the first to find that leukaemia cells can develop resistance to vincristine via a protein called gamma-actin,” said Associate Professor Kavallaris. “Excitingly, we also found that that the resistance can be reversed using a combination of treatments. “Our findings are now being used to develop strategies to successfully treat this form of childhood leukaemia resistance.” Associate Professors Kavallaris and Lock also investigated resistance to glucocorticoids, one of the most successful agents used to treat childhood leukaemia. The pair discovered that changes, known as deacetylation, to the Bim gene were associated with leukaemia cells’ resistance to glucocorticoids. However, in laboratory experiments resistant cells were re-sensitised to glucocorticoids when treated with drugs which stopped the Bim gene from undergoing changes. According to Associate Professor Lock, the findings provide proof that glucocorticoid resistance can be reversed in childhood leukaemia. “Through our research, we can offer hope for many blood cancer patients who face a poor prognosis due to treatment failure,” he said. In a third laboratory-based research project, Associate Professors Lock and Glenn Marshall tested the new experimental drug, ABT-737, and found it improved the action of a range of chemotherapy drugs. “Further research is needed but we believe it’s possible that ABT-737 could be used in combination with chemotherapy drugs to help overcome childhood leukaemia resistance as well as reduce the doses required and side-effects,” said Associate Professor Lock. The results of this research were recently published in the Journal of Pharmacology and Experimental Therapeutics. BAE Systems Australia employees chose the Leukaemia Foundation as their new charity partner for their Charity Challenge campaign. This worldwide initiative encourages employees to participate in fundraising and hands-on volunteer work and to develop skills in project management, communication and teamwork by being an active member of their local community. Selecting the charity for the 18-month campaign was a detailed process by the 5500 employees at BAE Systems, which is a leader in the delivery and support of advanced defence and aerospace systems. In May, BAE Systems announced that the Leukaemia Foundation had been selected as its sole Australian charity partner for the Charity Challenge campaign in 2008/09. “BAE Systems Australia is looking forward to developing a rewarding partnership with the Leukaemia Foundation, helping to raise much needed funding and awareness for the work of the Foundation,” said Wayne Achurch, Director Human Resources and Charity Challenge champion. Representatives from the Foundation and Charity Challenge are busy working together to develop a calendar of national and site-based fundraising and volunteering opportunities for employee participation. Employees from BAE Systems Australia North Ryde site competed in the Sun Herald City 2 Surf as part of the Leukaemia Legends team in August PAGE 9 In Victoria, patients who have had a bone marrow transplant and their carers can participate in a new Bone Marrow Transplant Support Program. The Leukaemia Foundation in Victoria is offering the program so transplant recipients, regardless of where they had their transplant, can meet, talk and share their journeys with others. The inaugural meeting was held in August at the Foundation’s Box Hill office in Melbourne and was well attended by a dynamic group of posttransplant patients. Some members, who had their transplants more than seven years ago, were able to share their personal experiences with others who were just starting their journeys. There is a diverse range of expertise among the group who will continue to meet on a bi-monthly basis. This will undoubtedly lead to many interesting discussions on topics such as finances, diet, meditation and general health issues. Attendees at the first BMT Support Program meeting The group enjoyed the opportunity to share their experiences, to socialise and to work together to define the group’s objectives and how the Foundation’s Support Services team can meet the needs of the group into the future. Leukaemia Foundation funded researchers from Sydney’s Westmead Institute for Cancer Research are pioneering a new lifesaving immunotherapy treatment. to chronic lymphocytic leukaemia patients who have become immune-compromised from chemotherapy treatment. The researchers have successfully used donor immune cells to help blood cancer patients survive lethal viral infections following a bone marrow transplant. “This project is timely given the emergence of viral drug resistance, which makes the investigation of new therapies a high priority,” said Dr Blyth. While a transplant is the only treatment avenue open to many patients with blood cancers such as leukaemia, lymphoma and myeloma, the procedure leaves the patient’s immune system severely weakened. Leukaemia Foundation CEO, Peter Cox, said the Foundation was delighted with the outcomes of the research: “More than half of bone marrow transplant patients die from complications, including viral infections, so it is imperative that we improve the survival rate. Normally harmless viral infections can cause serious illness and even death post transplant. However, Dr Kenneth Micklethwaite has successfully treated 21 patients for one of the most common post-transplant viruses, cytomegalovirus (CMV). “Anti-CMV immune cells were taken from the bone marrow donor, grown in the laboratory, and injected into the patient,” said Dr Micklethwaite. “Subsequently none of 21 patients needed treatment with the toxic anti-CMV drugs. “It’s hoped that these anti-CMV cells will prevent CMV infection which would improve the survival rate of bone marrow transplant patients, making it a safer and more effective treatment for people with leukaemia.” The procedure is being further refined and tested against additional viruses in a clinical trial run by haematologist, Dr Emily Blyth. If the trial is successful, Dr Blyth will apply the treatment PAGE 10 “The outstanding research results from Dr Ken Micklethwaite and Dr Emily Blyth’s studies will give hope to the 9500 Australians diagnosed each year with a blood cancer. The Leukaemia Foundation is committed to funding innovative Australian research into better treatments and cures for blood cancers,” Peter said. Dr Micklethwaite’s research was published in the journal, Biology of Blood and Marrow Transplantation. The article was recently awarded the 2007 Westmead Millennium Institute prize for science and the 2007 American Society for Blood and Marrow Transplantation George Santos prize for the best article published by a new investigator. He is currently undertaking a two-year research scholarship at the Centre for Cell and Gene Therapy, Baylor College of Medicine, Houston, in Texas. Rhonda Lynch broke all the records, had no bad side-effects, and earned a reputation with her doctors for being ‘bullet proof’ during her treatment for leukaemia earlier this year. The 56 year-old Tyers woman attributes this amazing success to positive thinking, which she has practiced all her life. “I’ve always had a positive mental attitude and have read positive books and listened to tapes for 20 years,” said Rhonda who woke in early April with a bad pain under her ribs. She thought she’d broken a rib, blaming an incident a couple of weeks earlier when she had been “zapped by an electric fence”. “I’d never had pain like this,” said Rhonda who couldn’t get to casualty at Traralgon Hospital until three days later because she was house-sitting and looking after several dogs. Chatting to the doctor while waiting for her X-ray result, Rhonda told her she’d Rhonda Lynch, left, and her sister Janine, the day after she went home from Melbourne been falling asleep in her chair at home and that wasn’t like her. She decided to do But I still have a long way to go.” blood tests and these showed her white cell count was up and something was wrong with her red Rhonda believes setting goals is important and so is blood cells. having something to look forward to. Rhonda went straight to Melbourne by ambulance for She’d never been to Cairns and one morning at 3am, more tests and a bone marrow biopsy and she reckons when she was in hospital during the first two weeks she got rid of her leukaemia on that journey: “I threw of her treatment, she got on the Internet and booked the leukaemia out of my body half way down, when I a ticket for her and her sister, Janine O’Ryan, to go to had to swap ambulances.” Cairns on November 23 to visit her nieces. On the road she decided the leukaemia wasn’t going That was before Rhonda knew she was having a with her to Melbourne and that instead she was going transplant or that her leave pass – 100 days post there to be “recharged”. transplant - was November 21! Next Rhonda set a goal on the treatment: “I knew the chemo was toxic so I made a decision that whatever they gave me would work but nothing would affect me.” Rhonda was diagnosed with acute lymphoblastic leukaemia with the Philadelphia chromosome on April 6 this year. “I didn’t know anything about leukaemia and when the doctors asked if I had any questions, I said I didn’t need to know anything.” She began treatment straight away and six weeks later was in remission. “I was to have had six rounds of chemo and was on round four when they decided to do the transplant because everything was going so well,” explained Rhonda. She went into hospital for her bone marrow transplant on August 4, was released from hospital on Day 12 and went home on Day 28, in record time. “Nothing has gone wrong. I’m already in the textbooks. “When I look back, I sailed through the treatment – but I knew I had it beaten when I went down there. “My mental attitude got me through. You can beat it – you just have to set your mind to it and block out the negatives. If one comes in, turn it into a positive. “I broke records in every department and they smiled when I got a bit of a temperature during the transplant, but two Panadol fixed that! “I’ve always said to myself: I’ve got a strong and healthy body and I’m never sick,” said Rhonda. “I said I’d live to 100. Now it’s 120 because I have to set some new goals.” The Leukaemia Foundation provided Rhonda with accommodation for several months at North Melbourne, across the road from The Royal Melbourne Hospital, and petrol vouchers which she used to make several trips home to Traralgon for a break between treatments. PAGE 11 Since 2004, World Lymphoma Awareness Day (WLAD) has been held on September 15. It strives to raise awareness of lymphoma across the global community among the general public, patients and their families and friends, patient support groups, physicians and other healthcare professionals involved in treating lymphoma. WLAD is an initiative of the Lymphoma Coalition, a global non-profit network organisation of lymphoma patient groups and organisations, dedicated to raising awareness of lymphoma. The Coalition has 35 member groups from 29 countries and includes the Leukaemia Foundation of Australia. The Foundation supports WLAD because of its excellent opportunity to raise awareness of both the disease itself and the symptoms of lymphoma, which are often confused with other conditions by both GPs and patients. From left: Professor Bik To, Head of Haematology, Royal Adelaide Hospital, Ashleigh Moore, Executive of Cancer Voices, Wendy Chapman MP, and from the Leukaemia Foundation, Simon Matthias, General Manager SA/NT This year, the Foundation focused on two WLAD activities - patient education and General Practitioner education. To meet the needs of GPs, the Foundation developed a GP-specific diagnostic tool, which is available online, to assist GPs in diagnosing lymphoma via key questions to ask patients and a flow chart. As well as promoting WLAD within the medical profession, the tool should assist patients, with symptoms of lymphoma, to be diagnosed earlier, thereby positively impacting their future outcomes. An exciting new partnership expands the existing Cancer Connect program to include people who have been treated for leukaemia, lymphoma, myeloma and related blood disorders. Cancer Connect is a peer support program developed by the Cancer Council. It provides one-to-one phone support to people diagnosed with cancer by specially trained consumer volunteers. The Leukaemia Foundation has collaborated with the Cancer Council Victoria, Myeloma Foundation and Bone Marrow Donor Institute to create Cancer Connect-Blood Disorders and BMT (bone marrow transplantation) which will be launched this month. Samantha Schembri, Manager, Support Services in Victoria was a member of the working party that PAGE 12 Lymphoma education programs for patients and families were held across the country in September. In South Australia, an open invitation was extended to those living with lymphoma to join Foundation staff for lunch on World Lymphoma Awareness Day. That evening, a function held to launch the GPs diagnostic tool, was attended by GPs, haematologists and allied health professionals, and South Australian WLAD Ambassador, Vicki Chapman MP, shared her personal story of losing her husband to lymphoma in 2001. recruited and trained the first group of new blood cancer volunteers. “This program is an exciting addition to the quality support services that the Leukaemia Foundation in Victoria can offer newly diagnosed patients,” Samantha said. “We often get requests from new patients saying: ‘I wish I could speak to someone who has the same thing as me’.” Cancer Connect’s match process is simple and streamlined. If it identifies that peer support is needed, Leukaemia Foundation Support Services staff can implement a Cancer Connect match with one phone call to the Cancer Information and Support Service at the Cancer Council. The most traumatic part of Dimphiny O’Shaughnessy’s experience with myeloma was being told by her GP that she might have cancer. Deeny - as she is better known - just collapsed at the mention of the ‘c’ word according to her husband, Peter, a retired industrial chemist, and the comment set off clinical depression, which she still battles. Over the previous six months, Deeny, 66, of Bunbury, had regularly seen her physiotherapist for back pain before he suggested she go to her doctor. “He felt it was something more than just a back problem,” explained Peter. Despite a lot of tests, including X-rays, nothing showed up. That’s when her GP discussed the possibility of cancer and referred Deeny to an oncologist in Perth. “Myeloma is so difficult to diagnose and it’s such a rare disease,” Peter said. When Deeny was told she had myeloma, in March 2005, Peter said she lay in hospital in absolute devastation. This made it especially difficult for him to leave her, even for a few hours, to find a cheap pub to stay in. “We know now of the tremendous support that’s available, but at the time we were floored. We didn’t know what myeloma was or what was happening,” Peter said. Deeny O’Shaughnessy with her husband, Peter, and their dog, Millie Deeny started chemotherapy and this continued for 12 months before she switched specialists, to a haematologist, who put her on a different round of chemo. She also had an MRI which showed a fair bit of bone destruction. At the time Deeny was on antidepressants and pain medication because bone pain was the main problem. In 2007, during a ‘good spell’ Deeny and Peter went on a trip to Europe and travelled around Australia. “Myeloma is a bit of an unknown disease,” said Peter. “They don’t know what causes it and there is no cure. Some of the treatment does work for a short time. “The chemo knocked back the myeloma to the extent that there was no detection of the cancer, then ‘it’ came back,” Peter said. Deeny started stronger chemo – VAD* – but had a strong reaction to the treatment. It didn’t work and the bone pain returned in March this year. “It was unbearably bad,” said Peter. “She was on a very high morphine dose and ended up back in hospital in Perth for more radiation treatment.” Then she started a new treatment, Revlimid, which Deeny had been taking for four months as The Carer went to print. “It’s been marvellous,” Peter said. “The cancer counts have gone down to 1, so it’s under control again and Deeny’s quality of life is pretty good. “Things are good now that the Revlimid is working but who knows how long that will last – we do know that the myeloma will return. “There will be good times and bad times so we’ve made a conscious decision to take things more slowly, to smell the flowers and walk on the beach with our little dog, and every morning we sit in our sunroom, talk, have coffee, watch the birds in our garden and generally try to enjoy the good moments. They have become precious to us.” The O’Shaughnessys only discovered the Leukaemia Foundation and its range of support services earlier this year: “They’ve pointed us in the right direction. We’ve been to seminars which have provided information on the disease and the latest treatments, diet advice and living with pain. It’s pretty useful, they’re nice people and the support services coordinator at Bunbury, Karen Lewis, sometimes comes over for a chat.” The Foundation also suggested Deeny get a dog and Millie, the minature sausage dog she now owns, is absolutely devoted to her. * VAD is a combination chemotherapy treatment of vincristine, adriamycin and dexamethasone. PAGE 13 l]Zc6jhigVa^Vch\^kZ There are so many ways you can give and make great things happen to support patients and families in your community who need help. <gZVii]^c\h]VeeZc l]Zc6jhigVa^Vch\^kZ You can do your own fundraising, sign up for an event, join a Friends of the Foundation group, or start one of your own. Arranging your own fundraising is a brilliant way to make great things happen. It’s also lots of fun, a fantastic way to meet new people, extremely rewarding and easy! You can fundraise on your own, in a group, at school or at work. If you already have an idea or would like some suggestions, please just call our community relationships team on 1800 620 420 for lots of ideas, tips and a pack of materials to get you started. To participate in an event that’s already organised, visit the ‘Sign up for an event’ section of our website www.leukaemia.org.au to choose one of the hundreds of great events being held around the country. You may prefer to create a Friends of the Foundation group. These groups are people working together in the community to support the Foundation through fundraising (including our major annual campaigns), volunteering time at selected local events and promoting the work of the Foundation. The groups may also respond to requests from the Foundation to provide practical help to local patients and their families as needed. Please call us to find out more or to register. The Leukaemia Foundation has also developed a new community awareness plan to ensure patients and families in need know about the range of local services available to them. In August, the Leukaemia Foundation in NSW held a community awareness meeting at Daffodil Cottage in Bathurst. It was open to patients and their families, health professionals, local business people and anyone interested in learning about the Foundation. The Hilton Hotels and Leukaemia Foundation partnership in NSW began with a ‘shebang’ when management and staff at Hilton Sydney held a public shave during World’s Greatest Shave in March. Paul Murray’s alter-ego, ‘Dick Aspen, Hollywood Reporter’ from Triple M’s The Shebang breakfast show kicked off the day by shaving and interviewing Sydney Swans AFL player, Spider Everitt. A lunchtime auction saw the heads shaved of the Foundation’s CEO, Peter Cox, Hilton Sydney Manager, Jerome Auvity, and five of his senior managers. Hilton Sydney continued their support by hosting an Aftershave Party at the Hilton’s exclusive Zeta Bar for more than 200 shavers from NSW and ACT who had banked more than $1000 by April 3. Hilton Sydney staff volunteer their time and resources PAGE 14 There was a discussion on the impact blood cancers have on local communities and how these communities can help make a difference. Speakers included Dr Rob Lindeman, Haematologist from Prince of Wales Hospital, Helen Snodgrass, Leukaemia Foundation Support Services Co-ordinator for the Central West, and David Giles, Leukaemia Foundation Planned Giving Manager NSW/ACT. The extent of what the Foundation does was well received by the audience and some attendees signed up to become volunteers. To help raise awareness in your local community, contact your local Leukaemia Foundation office today. From playing golf, challenging your friends to give up chocolate, participating in a fun run, attending a fashion auction or having a fancy dress quiz night, there are so many ways you can enjoy yourselves while at the same time raising important funds for others in need. Great things really do happen when Australians give. in a range of Foundation activities. This has included time management training for the Foundation’s NSW/ ACT team and use of the hotel’s facilities. They provided direct support for patients and their families and carers by building a wooden garden fence at the Foundation’s Waverton accommodation units in Sydney. Volunteers manned the merchandise stand at the Children’s Circus fundraiser in Sydney last month. Hilton Sydney also is the first non-media company to enter a team in the annual Harvey Norman Touch Footy tournament fundraiser, on November 30. Café Cino, the hotel’s coffee shop, donates 50 cents to the Foundation from the sale of every muffin, and the hotel’s health club, Living Well, has offered free yoga, massage and psychosocial education sessions as part of the Foundation’s Support Services education program. For the second year, the Leukaemia Foundation is the main charity partner of the 2008 Mark Webber Pure Tasmania Challenge. The adventure race is a gruelling five-day endurance event held on November 19-23, that involves trekking, kayaking, mountain biking and some mystery challenges across 350kms of Tasmania’s spectacular terrain. The competitors are a mix of amateurs, elite athletes and celebrities. This year Australian Formula One driver, Mark Webber, will race alongside Kangaroos AFL legend, Glenn Archer, and his former team mate, Leigh Colbert, Australian Paralympian and world champion, Michael Milton, two Papua New Guinean Kokoda Trail porters who are direct descendants of the legendary Fuzzy Wuzzy Angels, and a host of corporate challengers. Mark Webber has chosen to support the Leukaemia Foundation again All participants raise money for the two vital causes supported by the Mark Webber Challenge Foundation the Leukaemia Foundation’s emergency accommodation program and the Save the Tassie Devil Appeal. Fundraising initiatives involving the Challenge are planned and include personalised email pages for the competing teams to send to their email contacts; a community breakfast at the Country Club (Launceston) in which a mountain bike leg of the Challenge features as part of the breakfast; and Mark has donated recent publicity appearance fees to the Foundation. The Mark Webber Challenge Foundation raises funds to directly assist those in need and since 2003 Mark has helped raise more then $1 million for various charities. The Leukaemia Foundation thanks Mark Webber and his team for their ongoing support which will help provide much needed “home away from home” accommodation for regional patients and their families. The Leukaemia Foundation’s General Manger of Trusts and Foundations, Cathy Bryson, embarked on a personal challenge to climb Mt Kilimanjaro in July, right. At 6.45am on July 24, in sub-zero temperatures, and with oxygen at only 50% of that at sea level, Cathy achieved her ultimate goal, far right. She reached the summit along with all five members of her group - an incredible feat when only 65% of those who climb Africa’s highest mountain actually make it to the summit. In conquering this amazing challenge, Cathy raised more than $3400 for the Foundation. PAGE 15 FIRST CELEBRATION OF LIFE IN SA Emotional support is a key service provided by the Leukaemia Foundation and this includes remembering loved ones who have lost their lives to one of the blood cancers. More than 100 people took part in South Australia’s first Celebration of Life memorial service, held at Sunnybrae Function Centre in August. Manager Support Services SA/NT, Steve Marshall, said the Celebration of Life service was modelled on similar Leukaemia Foundation celebrations held in other states. “We continue to support bereaved families and carers after the loss of their loved one and ceremonies such as this can help with the grief process,” Steve said. “Our aim was to provide a quiet and reflective time for family and friends to remember and honour the lives of those they have lost and give them an opportunity to meet others who have had similar experiences.” NEW AND PRE-LOVED CLOTHES RAISE $13,000 A New and Pre-loved Fashion Auction at the Darwin Turf Club in July attracted more than 300 attendees and raised Simmone Jarvis, Leukaemia Foundation $13,000 for the Leukaemia Community Relationships Manager NT with former Darwin Lord Mayor, Garry Lambert. Foundation. More than 500 good quality items were donated by Territorians and several boutiques including a stunning Paspaley white gold pearl necklace, valued at $2000. Belinda Burkitt, a blood cancer survivor and Darwin Cup Ladies Day Host, was the guest speaker. The event was hosted by Ali Burton and Gino Luglietti from Territory FM radio and the auction items were modelled by local identities including ABC newsreader, Laetitia Lemke, and Darwin Cup Carnival Ambassador, Stephanie Lambert. SUPPORT SERVICES EXPANDS TO GRAMPIANS AND LODDON REGIONS Regional and rural patients and their families in all regions of Victoria are now covered by a support services coordinator, following the opening of the latest office at Ballarat. The Leukaemia Foundation Victoria/Tasmania has leased an office in Armstrong Street South, in Ballarat’s city centre which is the base for a support services coordinator employed to care for patients and their families living in the Grampians and Loddon regions. From 2003 to 2005, 285 people were diagnosed with a blood malignancy in this combined region, which indicated the need for the new position. The Foundation’s team prides itself on providing seamless care and support for patients from the regional setting who go to metropolitan Melbourne treatment centres, then return home. CORRECTION: Apologies to Michelle O’Sullivan who was wrongly identified in the bereavement support group photo on page 15 of the Winter 2008 issue of The Carer. She was in the back row, second from the right. PAGE 16 Leukaemia link unravelled: Professor Angel Lopez from the Hanson Institute in Adelaide, and a member of the Leukaemia Foundation’s National Medical and Scientific Advisory committee, co-led a study to map the structural organisation of a key cell signalling receptor for the blood system. This receptor is part of a wiring circuit that controls how blood cells multiply and survive, a control mechanism that is faulty in leukaemic cells. The researchers will now begin developing a drug to target the receptor and treat some forms of blood cancer. CLL breakthrough: Associate Professor Devinder Gill from The Princess Alexandra Hospital in Brisbane and his research team have made a significant breakthrough in understanding chronic lymphocytic leukaemia (CLL). Following 10 years’ research, the team has discovered two new growth factors which allow CLL cells to survive for prolonged periods outside the body (or in the laboratory). The researchers will now attempt to develop a targeted drug to block the Associate Professor growth factors which would Devinder Gill cause the CLL cells to die. New method to detect CML resistance: U.S. researchers from the Fred Hutchinson Cancer Research Centre have developed a new method for detecting resistance to drug treatment for chronic myeloid leukaemia. By pinpointing key genetic mutations, the method could allow clinicians to diagnose resistance significantly earlier than current strategies, enabling patients to be switched to alternative treatments. CONTACT US Freecall 1800 620 420 (Call will go through to your local office) Email: [email protected] Mail: GPO Box 9954 in your capital city Website: www.leukaemia.org.au 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.
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