little lucia a precious gift - Leukaemia Foundation

ISSUE one • october 2015

Q U E E N S L A N D leukaemiaqld.org.au

LITTLE LUCIA A PRECIOUS GIFT As Tegan Homer sits cradling her smiling two-year-old daughter, Lucia, she reflects on how differently things could have turned out after her diagnosis with blood cancer 17 years ago. Not only did Tegan survive but her hopes of becoming a mother – nearly dashed by her diagnosis – were realised when her older sister selflessly donated her eggs. “When I was diagnosed with blood cancer at 14, having children was something I knew I wanted some day – but in the distant future,” Tegan said. “I was a teenager dealing with a life-threatening disease, being stuck in hospital, going through chemotherapy and losing my hair. My world was literally turned upside down. “Before my bone marrow transplant, which was standard treatment for my chronic myeloid leukaemia (CML) at that time, Mum had the foresight to encourage me to consider my future options. Having a transplant can affect fertility so it was decided I would have ovarian tissue stored. “Fast forward 10 years and I met my husband Dugald. We soon decided having a baby was something we both wanted very much. Having already had two beautiful girls of her own, my older sister, Tennille, offered to donate her eggs. “At first I was hesitant but the decision was made easier when we discovered there was a chance my stored ovarian tissue may contain leukaemic cells. It was a risk I didn’t want to take. “It was a wonderful gift from my sister but she is very pragmatic about it and simply sees it as providing the missing ingredient for baking a cake. But I will always be very grateful.” The 32-year-old said her pregnancy and birth were anything but smooth sailing. Her uterus had been damaged during her

Tegan and Lucia treatment for blood cancer and her doctor was concerned she may not be able to carry her baby to full term. After enduring nine months of hormone treatment to get her body ready for pregnancy, Tegan became pregnant on her second egg transfer. The pregnancy went well until Tegan went into labour at 30 weeks. She describes the weeks that followed as “incredibly traumatic”. “I was in hospital for four weeks on strict bed rest and picked up an infection,” Tegan said. “At almost 34 weeks I was concerned I wasn’t feeling my baby move and, after blood tests confirmed an infection, I underwent an emergency caesarean. “It’s all a bit of a blur but I remember being so relieved to hear my baby scream as she entered the world. continued on page 2 ⊲

world-first test predicts which patients will benefit from treatment

UNDER THE MICROSCOPE: CLINICAL TRIALS

in this issue

You may notice it looks very different to the publication you usually receive from us. We’re really proud of the new design and I hope you like the changes. It may look different but what’s inside is still carefully researched and written for those who have been impacted by blood cancers and related blood disorders. You will still find stories about people who have experienced a blood cancer firsthand. The helpful articles about treatment and embracing life afterwards haven’t gone anywhere. And you will continue to read the latest news about life-saving research and clinical trials in Australia and overseas. We used to produce lots of different newsletters focusing on individual diseases like leukaemia, lymphoma and myeloma. But we found we were often repeating ourselves; unnecessarily reproducing information that was relevant to all patients. A recent survey also showed us our newsletter readers were interested in the same things, no matter what blood cancer they had experienced. We have come to realise because blood cancers and related disorders have so many different names and symptoms and outcomes, patients can sometimes feel isolated after a diagnosis, when in fact they are part of a much larger community.

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WELCOME TO YOUR BLOOD CANCER COMMUNITY I’m very excited to share with you our new magazine, Blood Cancer News.

EDITOr’s picks

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continued from page 1 ⊲ “It then became evident how damaged my uterus actually was. Following the birth, I ended up in the intensive care unit for 24 hours without my baby, which was very stressful and emotional. “I was so grateful for the support of my family and friends. Dugald was amazing. He slept in the hospital with me every night of those four weeks; we were a team. “It was all worth it to have our beautiful daughter Lucia. She is an absolute gift and brings us so much joy.” Tegan’s mum, Cheryl, said she looks back at the time when Tegan was diagnosed with blood cancer and wonders how they got through it. Speaking to Blood Cancer News, an emotional Cheryl said: “Our world fell apart when Tegan was diagnosed. “Tegan’s father, Graeme, and I owned our own business which was open from 6am to 7pm. It was just the two of us plus a casual employee who kindly worked more hours when Tegan was going through treatment. “Graeme and I would take turns staying with Tegan at the hospital; she was only 14 and needed us with her all the time.

So we created Blood Cancer News. It’s a magazine for everyone and anyone affected by a blood cancer or related disorder, welcoming them into a strong community that is determined to beat blood cancers with love, sweat and tears.

“She went through two years of treatment. Even though she missed nearly a whole year of school and returned to Year 12 very weak, she graduated with her class and went on to university and completed a business degree.

Barbie Hartigan Director of Support Services Leukaemia Foundation of Queensland

“We’re so proud of her – it was an incredibly difficult time. It was also devastating for our three older children who were all still in their teens.

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Finding answers to GVHD Somewhere new to call home Research round-up

SPOTLIGHT ON 10 Leukaemia 12 Lymphoma 14 MPN 15 MDS 16 Myeloma 19 Palliative care “It was like someone had dropped a bomb into the middle of our lives; the ripple effect was enormous. “I was so grateful for the emotional support from Maryanne, one of the Support Services Coordinators at the Leukaemia Foundation of Queensland. We still keep in touch to this day.” Tegan said she is now enjoying every second of being Lucia’s mum and being surrounded by a loving family. “I have so many great people in my life – I am very lucky,” Tegan said.

HOW CML IS TREATED NOW The last decade has witnessed a dramatic change in the way chronic myeloid leukaemia (CML) is treated. When Tegan Homer was diagnosed with CML, a bone marrow transplant was standard treatment. However, the introduction of tyrosine kinase inhibitors (TKIs) resulted in a decline in the primary use of transplants. Treatment of CML varies depending on the phase of disease, your general health and age. During the chronic phase, treatment is used to control CML and keep blood counts within a normal range. This can involve chemotherapy, usually taken in tablet form at home. Treatment is now likely to involve the use of a type of TKI that blocks the leukaemiacausing effects of a substance called tyrosine kinase. Commonly used TKIs available in Australia include imatinib, nilotinib, and dasatinib. A stem cell transplant may still be an option for some younger patients, or patients who are intolerant or resistant to TKIs, providing them with a better chance of a cure. Read more about CML at leukaemiaqld.org.au/leukaemias

Under the microscope: Clinical trials What is a clinical trial? Clinical trials are a way for patients to access cutting edge, potentially life-saving and lifeenhancing treatments that are not currently available to them. A clinical trial helps to determine whether a new drug or device is safe and effective. Each clinical trial study is designed to answer questions and find better ways to screen, diagnose, prevent or treat a disease or condition. Being involved in a clinical trial contributes to the advancement of medicine and helps others who share or may develop your condition in the future. If a clinical trial is successful, the drug can go on to become a new treatment option for patients in the wider community. Should I consider taking part in a clinical trial? Before signing up, learn as much as possible about the trial, then discuss your options with your doctor. Clinical trials are not right for everyone and not every patient is able to participate. How do I find a clinical trial? First, talk to your doctor. He or she will be able to access an up-to-date listing of clinical trials. You may also want to call patient advocacy groups and local university medical centres. Clinical trials sites include: »» The Australasian Leukaemia & Lymphoma Group »» Australian Cancer Trials

»» The Australian New Zealand Clinical Trials Registry »» NHMRC Clinical Trials Centre Discover more about clinical trials at leukaemiaqld.org.au/clinical-trials Clinical trials at your fingertips For the first time, Queensland doctors and blood cancer patients have access to information about the latest breakthrough treatments at the press of a button on their mobile phone or tablet. We have worked with Haematology Clinical Research Network NSW to create a free mobile application that connects patients and doctors to clinical trials across Queensland. ClinTrial Refer Qld allows users to search for suitable trials by blood cancer type and hospital location. The app includes details of inclusion and exclusion criteria for each trial. “We are always looking at innovative and cost-effective ways to improve health outcomes for blood cancer patients and we’re excited by this app’s potential to link patients with potentially life-saving treatments,” our CEO, Bill Petch, said. Download our app at leukaemiaqld.org.au or search ‘ClinTrial Refer Qld’ in the App Store or Google Play.

Accessing international trials In a vital step towards beating blood cancer our new Trials Enabling Program will give patients access to promising new treatments from around the world. The program will initially give up to 125 patients over two years the opportunity to participate in internationally-led clinical trials without the associated costs of leaving the country. Our CEO, Bill Petch, said it was the first time a charity has established a funding program to bring to Australia breakthrough blood cancer drugs being tested in clinical trials overseas. “There are many exciting blood cancer clinical trials operating all around the world but only a small proportion of them are available in Australia because of the high cost of bringing them here – the Trials Enabling Program will make that possible,” he said. The first trial to be funded is a UK trial aiming to improve treatments for elderly patients with acute myeloid leukaemia (AML) and high risk myelodysplastic syndrome where conventional chemotherapy is not considered suitable. Thanks to our generous supporters, we plan to fund additional trials that will benefit patients with other blood cancers. This program will run in partnership with the Australasian Leukaemia & Lymphoma Group (ALLG), the nation’s leading blood cancer clinical trial group. Find out more about our Trials Enabling Program at leukaemiaqld.org.au/trials issue 1 – OCTOber 2015

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MAKING THE MOST OF LIFE AFTER BLOOD CANCER Being diagnosed with a blood cancer aged 18 was a devastating blow for Martin Leicht, but what he has achieved in the 10 years since his diagnosis is testament to his quiet determination to get on and make the most of life. Martin and his family had no idea what to expect when he was diagnosed in November 2004 at the end of his first year of university. “I was studying engineering and became quite pale and fatigued. I didn’t really get suspicious until I felt a lump on my jaw,” Martin said. “Blood tests showed that my white cell count was going crazy. The next morning my haematologist called with the news – I had acute myeloid leukaemia and would need immediate treatment.” Martin, his parents and younger sister travelled from Toowoomba to Brisbane where he began his first three-month stay in hospital. “I began chemotherapy but unfortunately my first round didn’t put me into remission so I was given a stronger dose to try to get my leukaemia under control. “At that stage we were told I needed a bone marrow transplant. Looking back at my entire treatment, I felt the sickest during those first three months.” A Support Services Coordinator from the Leukaemia Foundation of Queensland visited Martin during that time in hospital and offered his family free accommodation, close to the Mater Hospital.

“That was such a relief for my parents. My dad had given up work to be with me while I was in Brisbane and mum came back and forth with my sister who was still in Toowoomba at school,” he said. “After finding an unrelated bone marrow donor the day before Christmas 2004, my transplant went ahead without too many problems. “The rest of 2005 was spent recovering in Toowoomba, but by 2006 I was ready to return to part-time study at the University of Southern Queensland. Five years later I finished my mechanical engineering degree and my life took a whole new turn.” Martin met his wife Alysse, a teacher at Ronald McDonald House Charities, in 2011 just before landing an engineering job. The pair became inseparable and in May, Martin married the love of his life. “We see our life together as just another version of ‘normal’. We face many of the same challenges that other couples face and some are unique,” said Martin. “Alysse is a huge support.” Chronic GVHD complications Two years after his transplant Martin began to get pains in his forearms which he discovered was the beginning of chronic graft-versushost disease (GVHD), a complication which can result from a bone marrow or stem cell transplant from another person.

Martin and Alysse Leicht predominantly in his forearms, hands, legs and torso, which impacts his mobility. It means he has had to continue with steroid treatment and immunosuppressants to keep the condition under control. “We are hoping the GVHD has plateaued and we’re able to keep it under control. It’s frustrating that this far down the track I am still feeling the impact of having AML. I still see my haematologist monthly and I fatigue easily, but try to focus on the things I can do,” Martin said. “There have been many positive things that have come from this difficult journey. I have been able to finish university, gain a rewarding role as a mechanical engineer in Brisbane and marry my beautiful wife with whom I plan to travel, start a family and enjoy the rest of our lives together.”

Martin developed thickening of his skin and muscle tissue throughout his body,

Peer support for Generation Y Martin and Alysse were able to share some of their experiences of blood cancer at our first 20/30 Chat, a new support group we have set up for people in their 20s and 30s affected by blood cancers. “The 20/30 Chat group was a great opportunity to get together with people around my age, share experiences and learn from each other. It was fantastic,” Martin said.

“I would recommend it to any young person who has recently been diagnosed with blood cancer or is months or years down the track like me,” Martin said. Our Support Services Coordinators Nicole Douglas and Kate Arkadieff said they wanted to form the support group to provide a relaxed environment for younger people with blood cancers to meet up, chat and

share their experiences with each other. “While our support groups have always been open to people of all ages, we know Gen Y blood cancer patients face some unique issues and might feel comfortable sharing those with their peers,” Nicole said.

If you’re interested in attending our next 20/30 Chat, email us at [email protected] or call 1800 620 420. 4

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Melody Cheong, QIMR Berghofer PhD student

FINDING ANSWERS TO THE SERIOUS PROBLEM OF GVHD Graft-versus-host disease (GVHD) is a potentially serious complication of a bone marrow or stem cell transplant from another person (an allogeneic transplant). We support many patients who face the challenges of living with GVHD and fund research to find treatments for the disease. What causes GVHD? A donor stem cell transplant is a leading treatment option for many blood cancers. The treatment involves a donor's healthy stem cells being infused in a patient. The donor stem cells repopulate the patient’s bone marrow, producing healthy white blood cells to fight the blood cancer. It’s a process known as the graft-versus-leukaemia effect. Unfortunately, these transplanted donor immune cells can also cause GVHD by attacking the recipient's skin and internal organs, triggering widespread inflammation, destroying normal tissue and causing organ failure. What research is being done? The Leukaemia Foundation has supported a range of research projects at the QIMR Berghofer Medical Research Institute in Brisbane focused on alleviating the risk of GVHD and improving transplant outcomes. PhD student Melody Cheong has been working with the head of the Bone Marrow

Transplantation laboratory, Professor Geoff Hill, on ways to reduce GVHD while maintaining graft-versus-leukaemia effects. She is particularly focused on understanding the cause of inflammation linked to GVHD. To improve transplant outcomes and help better understand GVHD, fellow PhD student Katie Lineburg is investigating the cellular processes and immune cells involved in driving this disease. Of particular interest to her are the signalling molecules, called cytokines, and the different ways these proteins contribute toward establishing either protective cell populations or those that contribute toward the tissue damage that characterises GVHD. Also at QIMR Berghofer, Dr Andrea Henden has been continuing work by Professor Hill’s group. They have been exploring the role that Interferons have to play in stem cell transplantation. Interferons are naturally occurring proteins produced by the body’s immune cells and have potential roles in both GVHD and in anti-leukaemia effects post transplantation. Interferons might also be used as treatment in both of these scenarios and Dr Henden and the team at the Royal Brisbane and Women’s Hospital are investigating the value of adding Interferons to current chemotherapy and donor lymphocyte infusion strategies for patients whose disease has relapsed after transplantation.

Is a rabbit virus the key to reducing GVHD? As unlikely as it sounds, researchers in the U.S. believe a virus found in rabbits could help make bone marrow transplants safer for patients and improve the options for people unable to find fully-matched bone marrow donors. In the study, published in the journal Blood, the scientists found the myxoma virus simultaneously killed cancer cells and prevented graft-versus-host disease in laboratory testing. The researchers reportedly tested the virus on human cells in the laboratory, attaching the myxoma virus to white blood cells (T cells) before delivering them as part of a bone marrow transplant. Once transplanted, the virus not only blocked graft-versus-host disease but was delivered to cancer cells that were present and killed them, without affecting normal stem cells. Supporting collaboration across the Asia-Pacific The Leukaemia Foundation of Queensland sponsored a haematology conference in Brisbane last month that brought together Japanese and Australian experts on stem cell transplantation and GVHD to discuss their work. The conference, organised by QIMR Berghofer, aimed to foster stronger collaboration and drive more basic and clinical research across the Asia‑Pacific region. issue 1 – OCTOber 2015

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From Ballynure to Brisbane Every year families from remote and regional Queensland find a home in our accommodation villages, free of charge and for as long as they need it. The Ryan family live on a cattle property in far north-west Queensland—about as remote as you can get. Here mum Miranda Ryan talks about the moment blood cancer touched her family’s life, and why she so desperately needed a home-away-from-home. “A few days before Christmas in 2007 our oldest child, seven-year-old Jack, was diagnosed with a blood cancer.

“Of course we were utterly unprepared for this horrendous news, which was even more overwhelming because we lived 2000km from Brisbane on our beef cattle property, Ballynure. “We were Christmas shopping in Cairns, seven hours west of our property, when Jack became really unwell and we visited a local doctor. “Within two hours a blood test confirmed Jack had leukaemia and the next day we flew to Brisbane to begin treatment. We did not return to Ballynure for 11 months.

Within days of arriving in Brisbane we were provided with a large modern unit at the Leukaemia Foundation’s Clem Jones Sunland Village. It was such a welcome respite to have a safe, comfortable place to live, provided free-of-charge for our entire stay. The Ryan family “My husband had to stay at Ballynure to look after the station, so we really appreciated the village’s community. “Thankfully Jack is now doing well. We will be forever grateful to the Leukaemia Foundation for taking such good care of us and giving families from remote areas a place to call home when they need it most.”

Somewhere new to call home Families who need to move to Brisbane for life-saving blood cancer treatment will have somewhere new to call home later this year after we pick up the keys to 11 units in the heart of the city. Construction of our newest accommodation, the Village Green Apartments, is almost complete, with 11 units due to be settled soon. Furniture and fittings are on order to ensure the finished units cater for the unique needs of patients. The units are a part of The Green, a new development at the Brisbane Showgrounds in Bowen Hills. For the majority of people living in rural and regional Queensland, a blood cancer diagnosis means they have to immediately move to Brisbane or Townsville to begin treatment. To relieve the stress and financial burden we offer them free accommodation. We already have four accommodation villages in Brisbane and Townsville, and the new Village Green Apartments will help us cope with growing demand. Increased building costs and a lack of suitable land close to treating centres mean we can’t continue to meet demand by building purpose-built villages. Purchasing units at The Green offers an innovative yet simple model that will provide a cost-effective way of helping more Queenslanders. Our CEO Bill Petch said the Leukaemia Foundation’s commitment to providing patients and their families with free 6

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accommodation during treatment has been a critical part of our work for 40 years – and will not change.

Mr Petch said despite the new approach, families will still be provided with much more than just a roof over their head.

“We simply can’t meet demand by continuing to build purpose-built villages,” Mr Petch said.

“Like our villages, there will be on‑site support staff at the Village Green Apartments to ensure patients feel safe and secure as they face the difficulties of blood cancer treatment,” Mr Petch said.

“We needed to come up with a way of providing first-class accommodation for patients that also offered us more flexibility. “Thanks to the ongoing support of the community, and invaluable partnerships with Lend Lease and Westpac, more blood cancer patients will be able to stay together with their families at a time when it matters most.”

The first stage of development will see 11 units available to patients later this year. Three more units will be released in January 2016, ready for patients shortly after. For accommodation enquiries, visit leukaemiaqld.org.au/accommodation or call 1800 620 420.

It’s not too early to register for World’s Greatest Shave 10-13 March 2016 Every year thousands of Queenslanders come on board for World’s Greatest Shave for some serious fun and fundraising. Every dollar raised will allow us to provide patients and their families with support when they need it most.

Last year, Renee Sinton of Innisfail raised an incredible $25,000 after two much-loved family members were diagnosed with blood cancer. “Thank goodness the Leukaemia Foundation came to my family’s rescue when my father and father-in-law both received the shocking news they had blood cancer and would need to move 1800km to Brisbane to receive life-saving treatment,” Renee said. In 2012 Renee’s father-in-law, Bill Sinton, was diagnosed with acute myeloid leukaemia (AML) and was forced to move with his wife, Loretta, to Brisbane for 15 months. “The day after Bill arrived back home, we surprised them with the birth of our twin girls. It was quite a homecoming.” Like a bad dream, Renee’s whole world came crashing down again earlier this year when her own dad, Alan Granich, was diagnosed with myeloma.

with accommodation at the Leukaemia Foundation’s ESA Village – completely free‑of-charge. “Bill is now back at home doing well, but we are not sure when my dad and mum will be home to see their children and six grandchildren. We’re so grateful to know they’re being so well looked after and supported by the Leukaemia Foundation. “The Leukaemia Foundation has done so much for my family and shaving my hair during World’s Greatest Shave was one way I could say thank you – from the bottom of my heart.”

If you’d like to join others like Renee and make a difference to the lives of families affected by blood cancers, register for World’s Greatest Shave 2016 at worldsgreatestshave.com.

“Just like my in-laws, mum and dad left Innisfail for Brisbane, and were provided Renee Sinton (far right) with her family

Ease treatment side effects from the comfort of your own home Fit to Thrive, our successful gym exercise program in Brisbane, Cairns, Townsville and the Gold Coast, has been modified to create an at-home resource for people affected by blood cancers in rural and regional areas. Our free Fit to Thrive DVD contains 28 different strength and flexibility exercises, as well as useful information about measuring your exercise intensity and creating your own at-home exercise program. Exercise Physiologists Molly Shevill and Sam Hall present the DVD, guiding patients through performing the exercises properly,

as well as how to modify exercises depending on fitness and strength levels. The DVD was developed in partnership with Aspire Fitness and Rehabilitation, and builds on growing evidence of the benefits of exercise for people affected by a blood cancer. “Patients have found a regular exercise program has strengthened not only their body but their mind, making them feel betterequipped to tackle their cancer and their treatment regimen,” our Director of Support Services Barbara Hartigan said.

Fit to Thrive may be suitable for anyone affected by leukaemia, lymphoma, myeloma, amyloidosis, myelodysplastic syndrome (MDS), myeloproliferative neoplasms (MPN), or other related blood disorders. You can order your free copy of the DVD by visiting leukaemiaqld.org.au/thrive or phone us on 1800 620 420. All of the videos are also accessible on our YouTube channel at youtube.com/leukaemiaqld. Always seek the advice of your doctor before starting any exercise program.

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New Gold Coast transplant service Gold Coast Health has recently launched a stem cell transplant service at the Gold Coast University Hospital. Ann Scholz, our Support Services Coordinator for the area, sheds some light on what the new transplant unit means for local blood cancer patients. An autologous transplant uses your own blood-forming stem cells, which are collected in advance from the bloodstream and then returned later, as a rescue for the depleted bone marrow after treatment. For many people with leukaemia, lymphoma, myeloma, or another blood disorder, this is their only option for fighting their disease. Previously, Gold Coast patients would have to travel to Brisbane for the autologous transplant process. It used to be a lot of running around for people who were already stressed and unwell – going up to Brisbane for lead up appointments; then going back to get their stem cells collected; then having to go back again to re-infuse their stem cells. Unfortunately, because the stem cell collection process is very individualised, it’s hard to plan – so patients wouldn’t know whether they’d be in Brisbane for a few days or a week. If they could, they would bring a family member with them, which is a wonderful support. The Leukaemia Foundation would often provide accommodation for patients in

a nearby motel, which helped with some of the financial pressure, but there was still a lot for patients to deal with. In addition to their diagnosis, they’d have to think about organising care for children and pets back at the coast; going to a new hospital and meeting a different treatment team; their carer would need to organise an indeterminate period of time off work; and of course they’d be dealing with being separated from their family and friends. The new transplant unit at the Gold Coast hospital means that local patients can now stay at home and just travel to the hospital during the day for their appointments. It takes a lot of pressure off them, as they can stay in their own surroundings, stay with their usual treatment team, and be close to home and their families. My advice to anyone who is about to embark on an autologous transplant is to write down any questions you may have and arrange a visit to the unit. The nursing team at the transplant unit are brilliant at making you feel calm and comfortable, and ensuring that you are fully informed. The support team at the Leukaemia Foundation is also available to chat to anyone who may be dealing with a blood cancer diagnosis, no matter where they are in Queensland.

Paul Manuell, Janette Moore and Tommy Barkmeyer

The nuts and bolts of stem cell transplants For several years we have run our popular Nuts and Bolts seminar, which gives patients about to undergo an allogeneic transplant tips and information about what to expect. This year’s seminar in August featured several patient speakers, as well as clinical haematologist Dr James Morton. Dr Morton has a special interest in stem cell transplantation and blood cancers, and gave the audience an overview of the entire transplant process – from pre-transplant conditioning, to finding a suitable donor, to what happens on the day of transplant itself as well as any potential complications that could arise. Guests also benefited from hearing firsthand from patients Paul Manuell, Janette Moore and Tommy Barkmeyer. Tommy, who had Waldenstrom’s Macroglobulinemia, shared how yoga, meditation and staying active helped him both before and after his transplant. Janette had her transplant for acute lymphoblastic leukaemia and described how important keeping a sense of humour was throughout her experience. Paul had MPN/chronic myeloid leukaemia and described taking the transplant process one day at a time, even sharing his personal transplant video diary with the audience. If you or a family member is about to undergo a transplant, you can watch all of these videos online via our YouTube channel at youtube.com/leukaemiaqld.

Support Services Coordinator, Ann Scholz 8

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They’re an excellent resource to help you prepare mentally and physically for what is a challenging, life-changing experience.

Promising new blood cancer drug The Leukaemia Foundation has invested around $850,000 in a promising new drug for blood cancer patients, CX-5461, being developed at the Peter MacCallum Cancer Centre in Melbourne. The drug is currently being investigated in a clinical trial. CX-5461 works to block a cellular process called ribosome biogenesis within blood cancer cells that selectively kills them, while sparing healthy cells. Dr Gemma Kelly, Dr Marco Herold and Professor Andreas Strasser

(Photo courtesy of WEHI)

Genome editing the way forward for cancer therapy Melbourne researchers have developed a new technology which directly kills cancer cells by targeting factors essential for their survival and growth. Using the gene editing technology, current and past Leukaemia Foundation grant recipients including Dr Brandon Aubrey, Dr Gemma Kelly, Dr Marco Herold, Professor Andreas Strasser and colleagues at the Walter and Eliza Hall Institute of Medical Research were able to kill human lymphoma cells by locating and deleting an essential gene for cancer cell survival. Published in the journal Cell Reports, the research provides a ‘proof of concept’ for using the technology as a direct treatment for human disease arising from genetic ‘errors’.

Dr Aubrey, Dr Kelly and Dr Herold adapted the technology, called CRISPR, to specifically mimic and study blood cancers. They used the technology to target and directly manipulate genes in blood cancer cells. “Using preclinical models, we were able to kill human Burkitt lymphoma cells by deleting MCL-1, a gene that has been shown to keep cancer cells alive,” Dr Aubrey said. Dr Herold said the study showed for the first time that it is possible for CRISPR technology to be used in cancer therapy. “The technology dramatically shortens the time frame for fundamental research, allowing us to speed up the discoveries that could be translated to better diagnostics and treatments for the community.”

Targeting a cell survival protein A protein that promotes cell survival, particularly in blood cells, and is thought to play an important role in leukaemia and lymphoma development and chemotherapy resistance, is being investigated by Robyn Schenk and colleagues at the Walter and Eliza Hall Institute of Medical Research (WEHI) in Melbourne.

The Herold group at WEHI recently developed a world-first laboratory model to study A1.

The A1 protein is from the BCL-2 family which are critical regulators of the cell death program (apoptosis) and of great interest to WEHI’s Molecular Genetics of Cancer Division.

Her overall aim is to assess the impact and potential therapeutic benefits of targeting this protein.

Robyn, who has been supported by the Leukaemia Foundation, is using this model to study the function of the A1 protein, and the role of A1 in the initiation and progression of lymphoma and leukaemia.

From preclinical studies, the drug appears to have potential for treating acute myeloid leukaemia and myeloma in particular. However, despite encouraging initial responses in laboratory models, many cancers developed resistance over time. Dr Kylee Maclachlan at the Peter MacCallum Cancer Centre is working to improve the effectiveness of CX-5461 by looking at potential drug combinations that will overcome or delay resistance. Priority is being given to drugs already approved for clinical use or in clinical trials. “I’m looking at the therapeutic benefits of CX-5461 treatment alone as well as in combination with other drugs to treat multiple myeloma, which if refractory to currently available therapies, has a very short survival,” Dr Maclachlan said. "I am investigating models of treatment-refractory myeloma, to test if CX‑5461 can increase survival in this setting.” Also at Peter Mac, Donald Cameron is investigating the genetic causes of resistance. He is profiling patients from the ongoing Phase I clinical trial of CX-5461, as well as using laboratory models of blood cancers, to identify the key genes conferring resistance. “My aim is to develop the basis for a diagnostic test to predict patient sensitivity to CX-5461 as well as to understand the mechanisms underlying pre-existing or acquired resistance to this drug,” Donald said. “My research should provide clinicians with more flexibility to personalise blood cancer treatment.” Learn more about our research at leukaemiaqld.org.au/research issue 1 – OCTOber 2015

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Lizzie’s still laughing.... despite leukaemia

Melissa and Lizzie Lizzie Stephen’s soft downy hair is just starting to grow back – the only hint that the two-year-old has leukaemia. Her seemingly endless energy and infectious giggle tells another story – that she is just like any other little girl. Lizzie’s mum, Melissa, packed a bag and left their life in Atherton in August 2014 when she received the devastating news that her daughter had leukaemia. It was a month before Lizzie’s second birthday. “I remember sitting at the hospital in Brisbane, feeling totally overwhelmed and thinking about how quickly we’d had to leave home,” Melissa said. “The bin was full and needed emptying, my half-finished glass of wine was still on the coffee table and the dirty dinner dishes were in the sink. We have not been back since.” Being one of the local doctors in the far north Queensland town of Atherton, Melissa knew that Lizzie’s symptoms were suspicious, although her boundless energy kept her optimistic that it must be something less serious than cancer. “Lizzie was pale and began to show some bruising, but when her gums began to bleed when I brushed her teeth I decided to take her to the emergency department in Cairns,” she said.

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“She was so bright and running around – the staff were saying that she couldn’t possibly be sick.

‘you have no idea what we are going through – please don’t judge me for feeding my child French fries’.

“We were wrong. The blood test results were fairly conclusive and that night I knew we had a long, difficult road ahead.” As soon as the leukaemia diagnosis was confirmed they were flown to Brisbane and after a series of tests Lizzie started chemotherapy.

“Lizzie was in hospital for 10 days before we moved to accommodation close to the hospital. Before long the Leukaemia Foundation offered us a unit at its ESA Village – completely free of charge. We arrived from Atherton with just a few clothes and basics, but ESA Village provided everything we needed in a home. It was brilliant.”

“At that stage she was still so bright – they put a drip in her foot and she was actually running around the hospital and I kept thinking, ‘please don’t fall over because your platelets are so low’.”

Melissa and Lizzie have recently moved out of ESA Village and settled in Brisbane as Lizzie will need treatment for the next 18 months. Melissa started a new job at a local hospital.

As part of her treatment, Lizzie was put on steroids which not only made her even more active but also meant she put on a significant amount of weight.

“I must admit, I think I am a much more understanding doctor after what I have been through with Lizzie and have learned not to sweat the small stuff.

“Lizzie put on 5kg in the first month as a side effect of the steroids and had major food cravings, especially for McDonald’s fries.

“When people talk about your life being turned upside down, that is so true with leukaemia. Everything changes; there is no routine. I work around Lizzie’s treatment and try to get on with some sort of normality.

“I remember being in McDonald’s one day with Lizzie demanding fries. She had not lost her hair at that point so she looked like a little overweight girl whose mother was feeding her unhealthy food. One lady was looking at me very judgmentally and I thought,

“I will never be able to thank my mum, the Atherton community and the Leukaemia Foundation enough for their support and encouragement through this tough time. It has made the world of difference!”

Leukaemia Research

Designing anti-leukaemia drugs New drug A researcher at St Vincent’s Institute of Medical

for childhood leukaemia

Research in Melbourne is working to develop new drugs that target two separate proteinprotein interactions thought to contribute to leukaemia cell survival and expansion.

A new drug is reportedly showing promise in treating an aggressive subtype of acute lymphoblastic leukaemia, Australia's most common childhood cancer.

By modelling the three-dimensional shapes of the Homeobox (HOX) and 14-3-3 proteins interacting with key proteins, Dr Jessica Holien can identify possible drug targets. With this knowledge, it is possible to design novel compounds that specifically target and disrupt the complexes. Dr Holien has also identified several promising small molecules that target 14-3-3. In preliminary studies, these molecules blocked 14-3-3 in chronic myeloid leukaemia cells, leading to cell death. Her work has been supported by the Leukaemia Foundation.

Early testing by the Children's Cancer Institute shows the new drug PR-104 has potential in treating T-ALL, and may be particularly effective for patients who have suffered a relapse. PR-104 has already been used safely in adult clinical trials. Dr Jessica Holien

The findings have been published in the journal Blood.

Could avocados help fight leukaemia? A compound found in avocado seeds appears to be effective against acute myeloid leukaemia cells in preliminary laboratory testing overseas. Researchers from Canada and Italy tested 800 compounds against human leukaemia cells and reportedly found avocatin B was the most effective compound to cause leukaemia cells to die without impacting on normal blood cells.

Dr Sophie Broughton

Promising new therapy for AML A new targeted approach to the treatment of acute myeloid leukaemia (AML) is a step closer thanks to research we have supported. The new anti-leukaemic drug, CSL362, is currently being trialled following a collaborative effort between research teams at St Vincent’s Institute of Medical Research in Melbourne, the Centre for Cancer Biology in Adelaide, and global biopharmaceutical company CSL Limited and its partner Janssen Biotech. This antibody blocks the ability of leukaemic stem cells to grow and survive by targeting the IL-3 molecular receptor which regulates

The study was published in the journal Cancer Research.

blood cell production and is over expressed in myeloid leukaemias. Once bound, the antibody also recruits the body’s own immune system to kill the cancer cells, potentially preventing the relapse of AML. The Leukaemia Foundation has funded Dr Sophie Broughton at St Vincent’s who recently analysed the 3D structure of CSL362 and receptor molecules involved in AML, providing detailed information about the binding and activation of the drug with its target. The team’s work was published in the journal Cell Reports.

issue 1 – OCTObe r 201 5

11

LYMPHO M A

SHANNON’S FIGHT FOR LIFE

Shannon and his brother Nathan A keen boxing enthusiast, 37-year-old Shannon Friedrich was determined to ‘enter the ring’ against lymphoma with an attitude of positivity. However, the underground coal miner from Emerald admits cancer was the last thing on his mind when he got the devastating news just weeks before Christmas last year. “Last year, I was really bothered by a pain which felt like a pinched nerve in my groin,” he said. “I just passed it off as an old gym injury flaring up.” But when the pain continued to get worse to the point where he couldn’t walk, Shannon knew that something was wrong. “After two MRIs in Rockhampton, followed by a bone biopsy and liver biopsy in Brisbane, I got the diagnosis I never expected to hear: aggressive stage four non-Hodgkin lymphoma,” he said. “I was floored. I had come down to Brisbane for the biopsy with just a small overnight bag and was staying in a hostel. It was such a shock to find out I would have to stay for months of chemotherapy treatment. “One of the hardest things I had to deal with was suddenly abandoning my life back in Emerald. 12


"I was diagnosed on Friday and my fiancé Tahnee had to drive down on Sunday. We basically left our life in Emerald behind.” Shannon’s brother, Nathan, who also worked in the Emerald coal mine, said when he received the phone call from Shannon he could tell he was really worried about living 12 hours from the hospital and finding a place to stay while he went through treatment. “His stress seemed to come from how they would cope financially during this time rather than his diagnosis,” Nathan said. “Someone told me about the Leukaemia Foundation and I decided to give them a call. “The Leukaemia Foundation’s immediate response was overwhelming. They visited Shannon and Tahnee at the Wesley Hospital the next morning and offered free accommodation near the hospital, transport if required, as well as financial advice and emotional support. It was incredible,” he said. Shannon said there was no way he could have got through those early days without the Leukaemia Foundation’s help. “Having free accommodation at the village took a huge weight off my shoulders and I was able to just focus on my treatment and getting well,” he said.

Shannon has remained positive throughout treatment and wants to raise awareness of the “crucial support” the Leukaemia Foundation provides for people and their loved ones who have to move from regional and rural towns, and adjust to life in the city while undergoing treatment. "There was no time to go home and think about things. You really need the support because being diagnosed and going through treatment can feel totally overwhelming,” he said. Shannon had the pleasure of shaving Nathan’s head during World’s Greatest Shave 2015, raising over $16,000 for the Leukaemia Foundation. “We were so grateful for the support we were receiving that it was great to be able to give something back and raise funds for other families facing blood cancer. “I am now back at home, feeling really optimistic about the positive response I have had to treatment and am looking forward to a cancer-free future.” If you want to help raise money to beat blood cancers by shaving your head in March 2016, visit worldsgreatestshave.com.

Lymphoma Research

World-first test predicts treatment outcomes For the first time, Leukaemia Foundationfunded researchers in Brisbane have developed a test that will give patients with an aggressive form of lymphoma certainty about their treatment options.

We recognised World Lymphoma Awareness Day with a number of special events around Queensland during September and October. At our ESA Village in Brisbane, we had three health professionals present on a variety of topics.

Our chair in Blood Cancer Research at the UQ Diamantina Institute, Professor Maher Gandhi, said the new tool could predict how patients with diffuse large B-cell lymphoma (DLBCL) will respond to standard treatment and help clinicians identify the best treatment option for each patient. Professor Gandhi said this type of non‑Hodgkin lymphoma was the sixth most common form of cancer, with up to 2000 Australians diagnosed each year. “It can be fast growing and aggressive, so early diagnosis is vital, as is swift treatment,” he said. “Fortunately, the majority of cases respond very well to the current first line treatment, which is a combination of chemotherapy and immunotherapy. “However, some patients do not respond, and for these people the prognosis is poor. “The test will allow clinicians like myself to determine which patients are unlikely to respond well to standard treatment, thus avoiding ineffective and unnecessary chemotherapy and prompting consideration of other treatment options.” “This isn’t just another test,” Leukaemia Foundation of Queensland CEO Bill Petch said. “It’s a game changer. Professor Gandhi’s discovery will mean patients get access to the best treatment for them, first time, every time.”

World Lymphoma Awareness Day September 15

Clinical Haematologist Dr Jason Butler talked about changes to drug access for lymphoma patients in Australia.

Professor Maher Gandhi Mr Petch said the test could help patients access newer drugs in the future. “It will significantly reduce relapse rates and have a significant impact on how drugs are funded and delivered into the healthcare system,” he said. “The implications for this country’s health economics are enormous but, most importantly, patients will get access to the best treatments more quickly. “If this test can then translate to other medicines and blood cancers, it could open the door to new drugs from overseas by shedding more light on their potential here in Australia.” The Leukaemia Foundation has supported several of the researchers involved with the project, which has been published in the prestigious Lancet Haematology journal. Researchers are seeking a provisional patent for the test and are working with commercial partners to develop the technology further.

Dr Stephen Mattarollo, a Research Fellow and Cancer Immunologist, gave attendees an update on lymphoma research taking place at The University of Queensland Diamantina Institute. Lymphoma Cancer Care Coordinator Stephanie Buhagiar discussed her role and some common concerns that lymphoma patients face, and offered some tips for patients navigating through diagnosis and treatment. Dr Mattarollo and Dr Butler’s presentations are available for viewing on our youtube channel, youtube.com/leukaemiaqld. Our regional areas also hosted events including a Q&A session with haematologist Dr Andrew Shearer in Cairns; a lunch and information session for Gold Coast patients, held at Tweed Heads; and Townsville hosted a Q&A panel featuring a haematology registrar, a Bone Marrow Transplant Coordinator, a dietitian and a social worker. Find all of our upcoming events at leukaemiaqld.org.au/calendar or see back cover.

World first Waldenstrom’s treatment approved in U.S. The U.S. Food and Drug Administration (FDA) has granted the single-agent ibrutinib (Imbruvica) approval for people with Waldenstrom’s Macroglobulinaemia (WM). The anti-cancer drug was given regular (full) approval in all lines of therapy as the first and only treatment for this patient group. “Because there has never been an FDA-approved treatment for Waldenstrom’s

Macroglobulinaemia since it was first identified over 70 years ago, doctors had to rely on therapies borrowed from similar cancers to treat these patients,” said Dr Steven Treon, Director of the Bing Center for Waldenstrom’s Macroglobulinemia at the Dana-Farber Cancer Institute and Associate Professor at Harvard Medical School (U.S.).

Andrew Warden who is Advisory Group Leader of the Australian WM community group, WMozzies, said two members of the group were receiving ibrutinib treatment in clinical trials at Concord Hospital (Sydney). “WM patients in Australia who are not in a clinical trial will have to await approval by our health authorities,” he said. issue 1 – OCTObe r 201 5

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myelop ro liferativ e n e o p l a s ms ( MP N )

i wouldn’t change life for quids Even though Lesley Royle has been battling the ups and downs of MPN for 22 years, she still describes herself as one of the most blessed women alive as she speaks fondly of her husband and children who have made life worth living. Since she was diagnosed with Essential Thrombocythemia (ET), a type of MPN, Lesley has experienced almost every side effect and tried every available treatment to keep her symptoms under control. Lesley was only 27 when she was diagnosed with ET after being told she had chronic fatigue, post natal depression and a range of other illnesses. “In the two years leading up to my diagnosis, I knew something wasn’t right,” Lesley said. “I was chronically tired and unwell. One night I fell asleep face-first into my dinner so I visited a GP recommended by a friend. “Tests showed my platelet count was doubling every couple of days. By the time I was referred to my haematologist, my platelet count was 1.5 million; a normal count is 150 to 400. A bone marrow biopsy confirmed I had ET.”

Lesley Royle and husband Rob “I was a walking time bomb in great danger of having a stroke. In fact, I was told to go home and put my affairs in order. “At that time the small amount of information I found on MPN said it was usually diagnosed in people over 60 and that I would be dead in five years. “I became quite depressed and thought, ‘what is the point, I am going to die anyway’.” Her frustration at the lack of MPN information inspired Lesley, along with a fellow patient she met through an American online support group, to write a leaflet which explained what to expect when diagnosed with MPN. One of Lesley’s biggest challenges throughout her years with MPN has been dealing with the side effects of treatments. “Hydrea has kept my platelets down below 400 but I developed lymphodema because I was on such a high dose. I tried interferon but unfortunately I had an allergic reaction to it and ended up back on Hydrea.

“I also tried anagrelide (Agrylin) but it caused serious fluid retention and cardiac problems. “I’m currently on a combination of a lower dose of Hydrea and interferon to give my body a ‘Hydrea holiday’. “As a result of my extremely high platelet count I had two mini-strokes. The first occurred shortly after I was diagnosed which resulted in some permanent memory loss, and the second was 10 years ago which caused total loss of vision for a short time. “It’s been a hard journey but I remind myself that although I might have a bad day, I don’t have a bad life. I might have crappy days but I wouldn’t change my life for quids.” In the last couple of years Lesley has been attending the Leukaemia Foundation’s MPN Coffee cake and chat support groups and said it was “wonderfully reassuring to chat with others in the same boat and to know I have a larger network of support”.

Lesley was immediately put on huge doses of hydroxyurea (Hydrea) to reduce her platelet count quickly. If you want to find out more about our MPN Coffee cake and chat support groups, visit leukaemiaqld.org.au/support.

Gene may be responsible for transforming MPN into leukaemia Leukaemia Foundation-funded researcher Therese Vu at the QIMR Berghofer Medical Research Institute in Brisbane has been studying the role of a gene, DNMT3A, that may play a role in transforming the blood disorder myeloproliferative neoplasms (MPN) into acute myeloid leukaemia (AML). This gene produces an enzyme that regulates the function of various genes from within the cellular environment. Mutations of DNMT3A exist in up to 20 per cent of AML cases, however it is unknown what role the enzyme plays in either the development or sustenance of the cancer. 14


A better understanding of the gene’s role in myeloproliferative neoplasms (MPN) and the genetic pathways that progress MPN into AML may lead to new ways to intervene early and prevent the development of AML in some patients. “I’m also using laboratory models to see if we can accurately imitate the conditions seen in patients with blood disorders, and use these to test targeted treatments to try and restore normal gene expression and maybe sensitise malignant cells to chemotherapy,” Therese said.

Arthritis drug could be used to treat MPN Scientists at the University of Sheffield in the UK have reportedly discovered that a common drug given to arthritis sufferers could also help to treat patients with myeloproliferative neoplasms (MPN). The researchers discovered that Methotrexate could be repurposed as a new treatment option. Methotrexate is commonly used at low doses to treat inflammatory diseases including rheumatoid arthritis and has few side effects. It is also used in some cancers at much higher doses where the side effects are substantial and similar to other chemotherapy agents.

myelod ys p la stic s y n d r o me ( MD S )

Understanding how MDS drug works New techniques are being used by University of Melbourne researcher, Dean Tyler, to discover how the anti-cancer drug azacitidine (Vidaza) interacts within cells. Azacitidine is the only drug available for treating myelodysplastic syndrome (MDS), and is also used to treat several other blood cancers. The drug is only effective in about half of MDS cases, and its exact mode of action isn’t understood. By defining how the drug acts at a molecular level within the cells, Dean hopes to enable researchers to improve its effectiveness. Dean is hoping to answer questions about the drug’s molecular activity. He is using a novel technique that involves chemically adapting the small molecules that make up azacitidine, allowing Dean to label and then visualise the molecules using a specialised microscope to see where in a cell the drug is distributed. He can also isolate the cellular proteins targeted by the drugs. “We also believe this methodology extends to assessing the amount of the drug that is present within cancerous and normal tissues,” he said. “This level of data will provide an unprecedented understanding of the mechanism of action of azacitidine.”

Azacitidine belongs to a class of drugs known as epigenetic therapies. The drug appears to be absorbed by cancer cells, where it interacts with several targets to restore normal cell behaviour. Critically, the drug is thought to turn off a protein called DNA methyltransferase. This in turn switches on genes that stop cancer from making the RNA and DNA they need to grow and divide. Treatment with the drug also leads to cancer cell death, which is believed to be caused by the reactivation of the cell death cycle. Identifying who will benefit from MDS treatment In a separate project also funded by the Leukaemia Foundation, Dr Meaghan Wall at St Vincent’s Hospital in Melbourne has been developing a clinical prognostic tool to identify MDS patients who are most likely to benefit from treatment with azacitidine. Dr Wall and her team have been scanning MDS cells from 40 patients for genetic abnormalities associated with favourable and unfavourable response to azacitidine. “In the long-term, this tool has the potential to be used by clinicians to give people a more accurate way to estimate their chances of responding to azacitidine and help them make treatment decisions,” Dr Wall said.

MDS Coffee Cake and Chat To coincide with National MDS Day on July 15 we hosted a special Coffee, cake and chat support group in Brisbane for those with myelodysplastic syndromes (MDS). The event gave MDS patients a chance

to relax in an informal environment, share their stories and talk to others in a similar situation. The next session will be at 10.30am, November 18 at Nate’s Bar & Bistro in Stones Corner. Call 1800 620 420 to RSVP.

If you’d like more information on the support we can offer MDS patients and their carers across Queensland, visit leukaemiaqld.org.au/myelodysplastic-syndromes.

Dr Meaghan Wall

Under the microscope: Refractory cytopenia with multilineage dysplasia Refractory cytopenia with multilineage dysplasia (RCMD) counts for about 30% of all MDS cases. RCMD can result in either refractory anaemia (where there is a decrease in the number of circulating red cells, resulting in anaemia), or refractory neutropenia (where there is a decrease in neutrophils, a type of white blood cell). While MDS can occur at any age, the average age of people diagnosed with RCMD is 70, and more men are affected than women. RCMD is usually managed using the “watch and wait” approach with supportive care provided if necessary. “Watch and wait” involves regular monitoring of your general health and blood, while supportive care aims to improve your quality of life and can include blood and platelet transfusions, antibiotics, and iron chelation therapy. For some younger patients with RCMD, a stem cell transplant might offer them a chance to cure their disease.

MDS Coffee cake and chat issue 1 – OCTObe r 201 5

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MYE LOMA

Stem cell researcher visits myeloma school of hard knocks and big shocks Until a year ago, Professor Alan Mackay-Sim described himself as a very healthy, athletic 64-yearold non-smoker who was looking forward to an active retirement with his wife, Lisa. Little did Alan know that, as the Director of the National Centre for Adult Stem Cell Research at Griffith University in Brisbane, he would soon need his own stem cell transplant to deal with the myeloma lurking in his body. “While I knew all about stem cells in my profession, when I became a patient I felt the same shock and anxiety, and experienced the same steep learning curve as anyone else,” Alan said. “It may have helped me to understand the biology of stem cells as I spoke with my haematologist, but I certainly found myself swapping between science nerd and grieving 16


patient as I struggled to come to terms with my diagnosis.”

a side effect of myeloma.”

In fact Alan described himself as a “complete newbie” to myeloma when he received the shocking news.

Alan said his deteriorating health came to a head when he went overseas to attend two conferences in Florence and Brazil, and visit family in Colorado.

“I was cycling 200km a week and my grandparents and parents had all lived into their 80s and 90s; a life-threatening illness was certainly not on my radar.

“My GP armed me with pain medication before my trip for what we still both thought was a ‘bad back’ that I would attend to when I returned.

“In hindsight, the first myeloma symptoms began around two years ago when the muscles around my spine were unusually sore after some longer bike rides.

“During the trip I decided to take a jet boat ride at the magnificent Iguazu Falls in Brazil. Although it was an amazing experience, every bounce of the boat sent shooting pain through my back.”

“I just put it down to getting older and a massage generally seemed to ease to pain. “One massage, however, really increased my pain when a young, enthusiastic physiotherapist, without realising it, was pushing around my ‘crumbly’ bones’ –

Alan said when he finally got home after a “horrible” flight, the pain was terrible and he immediately sought medical attention. Halfway through these tests, Alan’s health took a turn for the worst and he ended up in hospital with kidney failure, close to death.

Professor Alan Mackay-Sim By the end of that week Alan was stabilised and he received the news that he had myeloma. Treatment started immediately and included radiotherapy and chemotherapy. Alan said he felt very fortunate this part of his treatment went so well; he had no mouth ulcers or any of the other very common side effects. He then moved to the next stage of treatment, an autologous stem cell transplant. “Fortunately I was young and healthy enough to have a transplant, although that’s when treatment really became tough,” Alan explained. “The chemotherapy leading up to the transplant was the worst time of my life. I lost 23kg and 9cm. I’m now shorter than my wife, and friends joke I could start a second career as a jockey.

Alan described myeloma as a great leveller.

One year since diagnosis and six months since his transplant, Alan describes himself as a reasonably healthy, not so athletic, 64-year-old bloke who is still a non-smoker, healthy eater, and keen bike rider.

“I have grieved the loss of innocence; I have had dreams shattered and sometimes I fear the gloomy path ahead,” he said.

“I just happen to have myeloma still lurking somewhere and I’m coming to terms with the great uncertainty of this.

“Pain has been a feature of this disease all the way through. I guess you could say I have learned a lot in the myeloma school of hard knocks and big shocks.”

“I am excited to say I am riding again. I bought a tricycle with electric-assist which allows me to ride without fear of falling.

“Also, while I was going through treatment, I broke six vertebrae and ribs. I suddenly felt like a very old man.”

But according to Alan, not all of those lessons have been bad. “I have learned about kindness. When the enormity of myeloma, pain and chemo overwhelmed me, I depended on the loving kindness of others: family, friends, work mates and especially nurses that comforted me night and day.”

“I have officially retired although I still run a laboratory and have some PhD students finishing their studies. “Like last year, I am still a man in his early 60s looking forward to an active retirement – the difference is I am ready to live each day and enjoy it more.”

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MYE LOM A

myeloma Research Modifying immune cells to treat myeloma Following promising results in the United States from early phase clinical trials in patients with refractory leukaemias and lymphomas, Sydney-based researcher Dr Ming-Celine Dubosq is working on developing a treatment for myeloma. Based at the University of Sydney and Westmead Millennium Institute, and with funding from the Leukaemia Foundation, Dr Dubosq is creating potent, anti-cancer killing T-cells to target and destroy myeloma. T-cells are an inherent part of the body’s immune defence system.

This emerging therapy involves modifying T-cells to eradicate cancer cells. “I’m altering T-cells to express chimeric antigen receptors, or CARs for short,” Dr Dubosq said. “CARs help T-cells to detect and specifically destroy tumour cells with minimal toxicity to normal tissues. “My aim is to create an optimised myelomaspecific CAR and to see if it can enhance other biological therapies. If successful, this CAR will be used in future early phase clinical trials in patients with refractory/ relapsed myeloma.”

National Myeloma Day 2015 More than 60 patients and carers gathered at our National Myeloma Day seminar at ESA Village in May to help raise awareness and answer questions about this cancer that is diagnosed in 1500 Australians every year. These talks were all recorded and are available for viewing on our YouTube channel at youtube.com/leukaemiaqld. Three guest speakers from very different perspectives presented on a variety of topics pertinent to myeloma.

Carmel Woodrow, the Cancer Care Coordinator-Myeloma at the Princess Alexandra Hospital discussed peripheral neuropathy, while Professor Alan Mackay-Sim offered a unique view as a myeloma patient and a renowned stem cell researcher. Clinical & Laboratory Haematologist Dr Robert Hensen rounded out the session by sharing some of the latest advances in the diagnosis and treatment of myeloma.

Dr Ming-Celine Dubosq

Genetic test could improve myeloma treatment A UK study has found that testing for genetic risk factors could improve treatment for myeloma by helping doctors identify patients at risk of developing more aggressive disease. The research, published in the Journal of Clinical Oncology, reportedly found as few as nine genetic features would need to be tested to identify high-risk patients who might benefit from intensive treatment.

Please contact our support team on Freecall 1800 620 420 if you ever have any questions about coping with myeloma or would like to know how we can support you.

The study, led by researchers at The Institute of Cancer Research in London, is the first to link genetic mutations in myeloma cells to the chances of surviving the disease.

Identifying genetic changes associated with myeloma

Researchers used genetic sequencing to analyse all of the genes of 463 patients enrolled in a myeloma clinical trial.

In almost every case, myeloma develops from a benign disease known as monoclonal gammopathy of undetermined significance (MGUS). Researchers at the University of Adelaide believe complex genetic changes drive MGUS to develop into myeloma. The Leukaemia Foundation is supporting Ankit Dutta with his research aimed at identifying the genetic changes involved in this transition. The Myeloma Research laboratory is based at the South Australian Health and Medical Research Institute (SAHMRI). More than 200,000 Australians, over the age of 50 years, have MGUS which has no symptoms, and as such remains untreated. Each year, people with MGUS have a 1% risk of progressing to myeloma. 18


To date, the genetic factors driving the progression from asymptomatic MGUS to myeloma are unknown. Ankit is using next-generation sequencing methods to analyse a rare collection of paired bone marrow samples; taken from 25 patients when they were first diagnosed with MGUS and then later when they developed myeloma. “I’m looking for gene expression changes critical in causing MGUS to develop into myeloma. This information will help us identify biomarkers that can predict which people are prone to developing myeloma,” Ankit said. “Ultimately, we are hoping to develop new treatments to delay or cure the disease at the MGUS stage.”

New myeloma drug gives hope A breakthrough drug being trialled in Australia has reportedly seen more than a third of myeloma patients go into full remission. Of the 15 St Vincent’s Hospital multiple myeloma patients granted access to Daratumumab, five had already entered full remission. “The response I have had in my patients has been astounding,” St Vincent’s haematologist Dr Hang Quach said from Melbourne. “By the second cycle, eight weeks in, virtually every one of my patients has gone to partial response, and by the third or fourth cycle, a lot of them are already in complete response.” Please talk with your doctor about clinical trials that you might be eligible to participate in.

WHAT DOES PALLIATIVE CARE REALLY MEAN? When most people hear the term ‘palliative care’ they immediately think of end of life. However this isn’t entirely accurate. The term palliative actually means reducing the severity or intensity of an illness. This article, written by Elise Button, a PhD Candidate at the Queensland University of Technology and an Associate Nurse Researcher in Cancer Care Services at Royal Brisbane and Women's Hospital; and Allison Lovell, a Clinical Nurse Consultant in the Palliative Care Service at Royal Brisbane and Women's Hospital, help to debunk some of the common myths surrounding palliative care and bring clarity to the place palliative care has in the treatment plan for those living with blood cancers. WHAT ARE SOME OF THE MISCONCEPTIONS SURROUNDING PALLIATIVE CARE Palliative care is not end of life care. Palliative care is actually not about dying; rather it is about living as well as possible with a serious illness. While palliative care is often provided at the end of life it can also be provided at any time for a person with a lifethreatening illness. The aim of palliative care is to help people with a life-threatening illness and their family to live as well as possible within the limitations of their illness. Since palliative care is focused on managing troubling symptoms and promoting quality of life, it can be introduced at any time depending on the needs of the patient and their family. Palliative care is often introduced as people near the end of their life as it is vital they are comfortable and receive dignified care at this time.

Palliative care can also be introduced while people are receiving other treatments. People with blood cancers often experience fluctuating levels of health and can get sick very quickly. For this reason it is recommended that palliative care is introduced early to give patients and families ample time to think about their wishes, know what resources are available, and are supported to make treatment plans that are right for them. Being referred to a Specialist Palliative Care Service does not mean that the doctors think a person will die soon. Many people are referred when they have troubling symptoms or when they are first diagnosed with a life-limiting illness. Being referred early enables a Specialist Palliative Care Team to provide the best support depending on a person’s needs. The focus of palliative care is on improving the quality of a person’s life by helping them to manage any physical, emotional, social, cultural or spiritual problems that result from their illness or treatment. Particular focus is placed on managing pain, nausea and other troubling symptoms. Practical and emotional support is also provided for families and carers. Palliative care is not about stopping all treatment. Palliative care can be provided alongside treatment that aims to prolong life or cure an illness. People who see Specialist Palliative Care Service teams can also receive chemotherapy, antibiotics, investigations, surgery and other treatments as needed. The care provided is suited to the patient’s particular needs and wishes, and their family and carer’s needs.

Receiving palliative care treatments and taking strong pain relief medications such as morphine does not speed up a person’s death. Palliative care treatments are given to relieve suffering and are managed carefully by the health care team. WHO PROVIDES PALLIATIVE CARE? Palliative care can be provided by a haematologist and the wider health care team or a general practitioner. Often haematologists or general practitioners will seek the advice and support of a Specialist Palliative Care Service depending on a person’s needs and the resources of their family. WHERE CAN PALLIATIVE CARE BE PROVIDED? Where a person receives palliative care is dependent on their needs, their preference, how well they can function physically and how much support is available. Specialist Palliative Care Services can be provided in the home, hospital, out-patient department, palliative care unit or hospice, or aged care facility. If you have any questions related to palliative care or want to know about the services that are available to you, talk to your haematologist or general practitioner. You can also search the National Palliative Care Service Directory to find a service in your area at palliativecare.org.au.

issue 1 – OCTOber 2015

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THANK YOU FOR LIGHTING THE NIGHT Thank you to everyone who joined us at Light the Night earlier this month. We hope it was a special time for you as you joined others affected by blood cancer, remembered loved ones lost and supported the work of the Leukaemia Foundation. Seeing so many lanterns raised across Queensland on a single night was truly inspiring.

The money you raised during Light the Night is still coming in and will ensure we can continue to provide Queensland families with free emotional and practical support on their blood cancer journey, and fund vital research to find better treatments for patients.

Light The Night ambassador - Rob Maitland

What’s on 2015

EVENT

DATE

TIME

VENUE

NOVEMBER

Waldenstrom’s Macroglobulinaemia Coffee cake and chat

Monday 2

2.00 pm

Nate’s Bar & Bistro – 433 Logan Road, Stones Corner

Myeloma Coffee cake and chat under 50s Thursday 5

11.30 am

ESA Village – 41 Peter Doherty Street, Dutton Park

MPN Coffee cake and chat

Saturday 14

11.30 am

Jindalee Hotel – Sinnamon Road, Jindalee

CML Coffee cake and chat

Saturday 28

2.00 pm

Coffee Club – Boundary Street, West End

Gold Coast Coffee cake and chat (for all patients and carers)

Friday 11

2.00 pm

50 Fairway Drive, Clear Island Waters

DECEMBER

RSVP is essential – Please phone Marian on 07 3055 8233 or email [email protected].

Contact us Brisbane

Townsville

Support and information: 07 3055 8233

Support, accommodation and information: 07 4727 8000

Accommodation booking and enquiries: 07 3055 8200

Gold Coast Suite 4, 36 Harvest Court, Southport Qld 4215

Cairns 52B Comport Street, Portsmith Qld 4870



We don’t receive any direct government funding and rely on the generosity of the community to support patients when they need it most. If you would like to make a donation to help others affected by blood cancers, visit leukaemiaqld.org.au. Disclaimer: No person should rely on the contents of this publication without first obtaining advice from their treating specialist. If you do not wish to receive future editions of this publication please contact the Leukaemia Foundation Support Services Division on 07 3055 8233.

Contact us: 1800 620 420 leukaemiaqld.org.au [email protected]

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