David didn t relate exorbitant back pain to active myeloma

Transcription

1 For people with myeloma & their families ISSN December 2017 leukaemia.org.au David Wilson, right, and his wife, Bette, with their children, Meredith Kaus and Elliott Wilson. Contents Carfilzomib PBAC recommendation 2 Clinical trials for two new therapies 3 & 6 Mind/body connection in healing 4 & 5 Blood Buddies domino effect 7 & 8 David didn t relate exorbitant back pain to active myeloma David Wilson dosed up on paracetamol to escort his daughter, Meredith, down the aisle in December 2016, due to exhorbitant pain the reason he didn t dance much at the reception. Not for a moment did he relate his lower back pain to the smouldering myeloma he d been diagnosed with in February Having had a back problem 20 years earlier, David just thought he d hurt his back lifting too much steel, helping his son, Elliott, build a large shed in October But we finished the shed and my bad back got worse and worse, said David, 64, of Coffs Harbour. After Meredith s wedding, my wife, Bette, insisted I see my GP, who ordered an X-ray, and early the next morning my haematologist called and said, come straight in, that s your myeloma kicking off! said David. No wonder he was in so much pain, said Bette. He had several fractured vertebrae! We wish we had done more research and we would have recognised the back pain as active myeloma. Two years earlier, after David retired in mid-2014, the Wilsons bought a caravan and hit the road. Having travelled the world already, it was time to see Australia. I came home to a collection of mail and a letter from the Red Cross; I d donated blood for the previous 15 years. It said please take this letter to your doctor, we don t need to collect blood from you anymore, and I m thinking this is not a good sign. So I go to my GP who explains what myeloma is and that, in the analysis of my previous blood donation, paraprotein had been detected that was indicative of myeloma. I d just retired and suddenly I m confronted with being told I ve got a blood cancer, said David. He was referred to a haematologist who explained David was at a very early stage of asymptomatic myeloma, known as monoclonal gammopathy of undetermined significance (MGUS). (See story on page 2.) I had evidence of myeloma in my blood, but no symptoms, said David. Continued on page 6.

2 2 Just Briefly Carfilzomib recommended for PBS listing In July, carfilzomib (Kyprolis ) was considered by the Pharmaceutical Benefits Advisory Committee and recommended for listing on the Pharmaceutical Benefits Scheme (PBS). The recommendation, based on updated clinical trial data, is for carfilzomib in combination with dexamethasone in people with myeloma who have relapsed or are refractory. PBS listing of carfilzomib is expected in early Since June 1, carfilzomib has been available for Australians with myeloma through a product familiarisation program which gives access to this second- generation proteasome inhibitor at first relapse. This program is open for six months and means patients at first relapse, following an autologous stem cell transplant, can receive the medication free of charge from Amgen until the PBS listing. National Myeloma/Amyloidosis Coordinator takes on the Everest Challenge When the call went out for a Leukaemia Foundation staff member to join the Beat Blood Cancer Everest Challenge, it was an opportunity Jo Beams could not let pass. The Foundation s National Myeloma and Amyloidosis Coordinator saw this role as yet another opportunity to provide support, this time in a different way. She will inspire participants on their personal quests to raise funds on an adventurous trek to the gateway of the world s highest peak. For more than a decade, Jo Beams has had the privilege of delivering support services, initially on a local level to people in Tasmania, and since July 2016 on a national level. I see first-hand the difference this organisation can make in the lives of Australians living with a blood cancer such as myeloma, said Jo, who is passionate about promoting the Foundation s work. What a perfect opportunity to be the ambassador for a cause I wholeheartedly believe in, that combines with my own love for the outdoors and meeting physical challenges. Our team is coming together from all over Australia and includes people who have been touched closely by blood cancer and others who have seen the support we provide. They have already begun their fundraising efforts and we are still recruiting more participants, so feel free to spread the word to anyone who likes a physical challenge and maybe Everest base camp is on their bucket list, said Jo. Dates: April 2018 Fundraising target: $4000 per participant Trek: 11 days in the spectacular Himalayas reaching Everest Base Camp More information: contact Jo Beams jbeams@leukaemia.org.au About asymptomatic myeloma Asymptomatic myeloma also called smouldering myeloma is defined by the presence of abnormal plasma cells in the bone marrow and an abnormal antibody in the blood (referred to as either a paraprotein, monoclonal antibody or M-protein). There are, however, none of the symptoms or signs of organ injury in the body that characterise active myeloma, including a high calcium level, renal (kidney) impairment, anaemia (low red blood cell count) and bone lesions; often referred to by the acronym, CRAB. Often a diagnosis of asymptomatic myeloma is an incidental finding, when an elevated protein level is found in a routine blood test or an unrelated health problem is investigated. It is important to distinguish between asymptomatic and active myeloma because people with asymptomatic myeloma do not usually need immediate treatment but they do need to be closely monitored to detect progression to active myeloma. Most people with asymptomatic myeloma develop active myeloma within several years of diagnosis. Risk factors that help predict the likelihood of developing myeloma include: a high proportion of abnormal plasma cells in the bone marrow; reduced levels of normal immunoglobulins (antibodies); an abnormal serum free light chain (FLC) and/or Bence-Jones protein (BJP); and/or a high or rapidly increasing paraprotein level. Clinical studies have shown the average risk of progression from asymptomatic myeloma to myeloma is 10% per year for the first five years, 3% per year for the next five years, and 1-2% per year thereafter. This means it is vitally important to closely monitor people with asymptomatic myeloma, particularly in the first few years following diagnosis. Monitoring tests include blood count, biochemistry (kidney function and calcium levels), immunological tests (including immunoglobulin and paraprotein levels), serum free light chains, and symptomdirected X-rays or MRI scans. To manage asymptomatic myeloma, monitoring tests are generally done every 3-4 months during the first year after diagnosis. If these results are stable, the frequency of testing occurs less often for the next five years (every 4-6 months) and if those tests don t show any signs of progression to myeloma, monitoring tests are then carried out every 6-12 months. Follow-up is continued indefinitely, even for people who don t develop myeloma. International studies are underway to determine if it is possible to identify those people with asymptomatic myeloma who may be at a greater risk of developing myeloma, and whether this group would benefit from closer monitoring and/or early treatment.

3 Clinical Trials 3 Two world-first Aussie trials for new myeloma therapies Two groundbreaking Australian academic studies are giving two distinctly different groups of people with relapsed or refractory myeloma access to promising new therapies. Associate Professor Jake Shortt, who received a PhD Scholarship from the Leukaemia Foundation in , is co-principal Investigator of both the Phase IIb KappaMab study and the Phase I dose escalation trial of N-methyl-pyrrolidone (NMP). There s never been a therapy shown to cure myeloma but we hope these drugs might contribute to that ultimate end-game, said Associate Professor Shortt, Head of Haematology Research and Director of Oncology Translation at Monash Health (Melbourne). KappaMab study now recruiting KappaMab is a monoclonal antibody, a bit like daratumumab, except it targets the kappa light chain protein that is expressed on about two-thirds of myelomas. It s an immune therapy (not a chemotherapy) that is very precise in its mechanism; the kappa antigen that is targeted is expressed only on myeloma plasma cells. This is a very promising immunooncology approach and the first time KappaMab has been tested in people needing treatment for progressive myeloma, said Assoc. Prof. Shortt. If a patient wants to know if they have kappa or lambda myeloma, this can be quickly determined from their paraprotein results without any additional testing. This trial follows a Phase I study that assessed dosage, safety and tolerability in patients whose myeloma wasn t progressive and who were on another therapy. Professor Andrew Spencer, Head of the Myeloma Research Group at The Alfred Hospital, is co-principal investigator with Assoc. Prof. Shortt on the current KappaMab study, which is funded by a Translational Research Grant from the Victorian Cancer Agency. People with kappa-expressing myeloma who have had between one and three prior myeloma treatments, excluding lenalidomide (Revlimid ), are eligible for the trial. After establishing the response rate to KappaMab as a single-agent, the second part of the study will assess the combination effect of KappaMab with lenalidomide. The recruitment aim of both arms is 30 patients within the next 12 months and the first arm, which opened a year ago, is halfway through recruitment. Prof. Spencer s laboratory is developing highly sophisticated methods for monitoring the response to KappaMab using cell-free plasma DNA as a liquidbiopsy and comprehensive profiling of the mutations carried by myeloma patients entering the study. It s too early to comment on the rate and durability of responses to KappaMab but it has been well tolerated and we have observed definite positive treatment effects, said Assoc. Prof. Shortt. KappaMab won t be curative on its own. Even the best advances in myeloma drug development are most likely to show greatest benefit when used in an effective combination. This is the first time KappaMab has been combined with another myeloma drug, namely lenalidomide. Excellent preclinical data published by Prof. Spencer s group in the British Journal of Haematology showed that, in the test tube, if you mix lenalidomide with KappaMab, you get very good synergy between the two agents against myeloma cells. It s a rational and natural partnership because lenalidomide not only kills myeloma cells but also boosts the immune cells which latch on to and destroy KappaMab-coated myeloma cells, said Assoc. Prof. Shortt. The KappaMab trial is open at The Alfred, Monash Health, the Victorian Comprehensive Cancer Centre (VCCC), St Vincent s Hospital and Peninsula Health in Victoria and at Flinders Medical Centre, South Australia. Immuno-oncology agents are an exciting area of medicine so potentially benefitting from early access to a new immunooncology agent by participating in this trial is a very attractive option for interested patients, said Assoc. Prof. Shortt. NMP study now recruiting NMP is a drug in development and this first in human trial is for people who have already been treated with bortezomib (Velcade ) and lenalidomide (Revlimid ) and may have exhausted other treatment options. The trial is supported by an Australian National Health & Medical Research Project Grant and is independent from any pharmaceutical industry sponsorship. The initial discovery that led to this study was made a few years ago during my Leukaemia Foundation-funded PhD scholarship, said Assoc. Prof. Shortt, who carried out the preclinical work with Professor Ricky Johnstone s group at Peter Mac. The trial is now open at Monash Health and the VCCC, where the co-principal Investigator is Professor David Richie. Eligibility is based on patients with disease that is relapsed or refractory to both lenalidomide and bortezomib. Patients who were unable to tolerate lenalidomide or bortezomib are also eligible. They must have tried both therapies but then needed to stop them due to sideeffects or loss of response, said Assoc. Prof. Shortt. The study format is that of dose escalation. The first patients started at a very low dose (50mg per day) to establish that this was safe. Since starting the study, there haven t been any consistent dose limiting toxicities that have required treatment withdrawal, and so now we are up to the third dose level (300mg/day) If patients on the trial don t have any side-effects and their myeloma paraprotein is stable but not going down, then the NMP dose is increased, he said. Preliminary data from blood samples of patients at the first dose level shows the NMP is reaching concentrations that were shown to activate the immune system in our pre-clinical experiments. That s pleasing. We ve got a tolerable agent that seems to be absorbed after oral administration and achieves plasma levels we expect will be active in the body. So far, we have seen stability of the paraprotein at the current dose levels but we need to work out, by increasing the doses, whether the myeloma will respond better. Some of the first patients have had an interesting side-effect. With the first few doses they experienced some bone pains, which we actually took as an encouraging sign, said Assoc. Prof. Shortt. NMP has been well-described by another research group as a bone preserving and bone strengthening agent which could be used to help heal fractures. We can only speculate at this point, but if NMP demonstrates bone-preserving activity at the same time as anti-myeloma or immune boosting effects, this would clearly be advantageous for myeloma patients. Continued on page 6.

4 4 Living Well GP and psychotherapist, Dr Louella Crawford s presentation on The Science and Health of Mind and Spirit, captivated attendees at the Leukaemia Foundation s Annual Blood Cancer Conference in Sydney in June. Her focus was mind/body therapies and how they can help drive the healing process and provide emotional and psychological support during a standard cancer treatment regimen, thereby contributing to the best emotional and physical outcome. The mind/body connection in healing Twelve years ago, when Dr Louella Crawford* was being treated for stage III breast cancer, she had a full frontal realisation the mind plays an enormous role in your health. She started to meditate, to have massages, and embarked on more study enrolling in an arts degree majoring in philosophy of the mind and an advanced diploma in holistic counselling and psychotherapy. Fascinated by how the mind is involved in health, I began reading widely on everything I could get my hands on to do with psychology, the role of religion in health, spirituality, quantum physics, physics, quantum biology, neurobiology, neuroplasticity, neuroscience, psychoneuroimmunology, and epigenetics, said Dr Crawford. Medicine is very objective. It s about fixing things that can be measured and observed, and is pharmacologically focused. Few doctors have the time or training to really inquire about what s happening more broadly in a patient s life... how is it for you, what is happening at home, what s going on? And by and large they don t recognise that stress, or more importantly how one deals with the vagaries of being human and having human experiences good or bad, affects health. That is changing, but very slowly. I was looking for a bridge that spoke the language of science (medicine) and the wonderful and complex story of a person s inner life... for want of a better word, The Spirit.... having a sense of meaning in life increases the repair of our DNA. Dr Crawford came upon meditation, an Eastern spiritual practice dating back tens of thousands of years that, put simply, makes people feel better. Meditation came to the attention of the West in the 60s when the Beatles, who were interested in Eastern philosophies, went to the U.S. Some interested scientists and doctors decided there was something to meditation but realised no one would take an Eastern spiritual practice seriously unless there were some tangible studies. According to Dr Crawford, there are now thousands of good studies on the effects of meditation on all kinds of people, from beginner meditators to Buddhist monks and nuns. Using fmri machines that look at functional brain anatomy, and EEGs (electroencephalography), measuring brain waves, they have found definitively that meditation changes the brain. What these studies show is that meditation, and as little as 10 minutes a day for three weeks, actually changes a lot of parameters physiologically including the way your brain functions 1, she said. Meditation has been proven to reduce depression and anxiety and increase empathy, compassion and meaning in life. It increases the depth of grey matter and changes brain waves, increasing coherence. It also increases high-level thinking and the capacity to focus. We all have cancer from time to time; cancer cells rise up and fall away. They disappear because our immune system is functioning well, said Dr Crawford. I think what is interesting and important for people who have a cancer, is that meditation actually changes your immune system and has been found to increase the number of natural T-killer cells (a type of white blood cell) and one of their functions is to mop up metastatic cancer. Meditation also reduces inflammation and there s a lot of science indicating inflammation is possibly the underlying pathogenesis (development) of a large number of illnesses including cancer, Alzheimer s and heart disease. Meditation also reduces pulse rate and blood pressure, and a small but good study of Afro-Americans practicing transcendental meditation showed it reduced the incidence of heart attack and stroke by 30%. So here we have a practice that is not only free, it has no side-effects, and as a medication, it does an enormous amount of good, said Dr Crawford. If meditation was a drug, you d have pharmaceutical companies falling over each other trying to get it to market. In 2009, Tasmanian-born Elizabeth Blackburn won a Nobel Prize for discovering an enzyme, called telomerase, that repairs the telomeres 2 on the ends of DNA. As we age, our telomeres shorten. Prof. Blackburn teamed up with psychiatrist, Elissa Epel, who had a theory that stress might have a role in reducing the level of telomerase. Together, they designed a study showing that stress actually did reduce the level of telomerase, which Dr Crawford described as paradigm changing. Not content with this, they then decided to see if reducing stress via meditation actually increased telomerase levels. They looked at two groups of people those who meditated and those who didn t, said Dr Crawford. The results were stunning. Not only did meditation increase telomerase levels, it also reduced neuroticism (the propensity to worry constantly), increased mindfulness (living in the present moment; a very spiritual attribute) and increased one s sense of meaning in life. Meaning 3 can be the simplest moment or action in life; something that gives a person a reason to go on despite the most terrible circumstances. Nothing is the complete answer... it s a very broad collection of a whole lot of things. What was even more extraordinary was that the increased levels of telomerase were purely and directly related to an increased sense of meaning in life. In other words, having a sense of meaning in life increases the repair of our DNA. To me this is an absolutely extraordinary and significant study 4 that directly links the qualitative spiritual value of our inner world with our objective measurable physiology. How wonderful would it be to combine and marry treatment of our measurable physical problems with understanding and caring for our amazing, complex inner worlds? The best of everything... that s the way forward. It s not an either/or thing, said Dr Crawford. More than 20 years ago, in the U.S., Marc Barasch and Caryle Hirschberg 5 were fascinated by the concept of spontaneous remission from cancer; when someone outlives a dire cancer diagnosis by many, many years or completely recovers. Their study on spontaneous remission found a series of human qualities, including resilience, termed hardiness in 1979 by Suzanne Kobasa, one of the first people to look at positive psychology. These qualities enabled people to respond appropriately and cope under stress. They had a sense of control about how they responded to a situation (different to being a control freak); they lived wholehearted lives (they had spiritual qualities like gratitude, forgiveness, living in the present moment, a sense of awe); they had a sense of meaning in life; and they had a sense of not feeling alone...

5 Living Well in other words, they felt connected to something, be it friends, family, animals, the divine, or even nature. What I find fascinating, said Dr Crawford, is the huge crossover here between the study of positive psychology and resilience, and what they found in spontaneous remission in cancer. Dr Crawford now works as a GP concentrating on mind/body medicine through the practice of process work 6 a form of psychotherapy that sprang from Carl Jung s work and believes the mind and body are not separate, but simply different sides of the same coin. The more I practice, the more I absolutely know this to be true... the mind and the body are completely in sync. Obviously, it s also what you eat, whether you exercise and what genetic predispositions you have. I focus on trying to speak the language of science and there is now an overwhelming number of studies in the area of psychoneuroimmunology that joins up psychology, the immune system and neurology, as well as epigenetics that says genes aren t the only things that determine people s health. Bruce Lipton 7, one of the pioneers of epigenetics, says our beliefs, thoughts and feelings are entwined and affect the expression of our DNA. Epigenetics teaches that the DNA is like a set of architect s plans that need a builder to decide which parts of the plans to implement. This is incredibly empowering, to think that we may have some input or control over the expression of our DNA, said Dr Crawford. Epigenetics is a burgeoning field that needs to be incorporated into medicine. It explains and looks at how we interact with our environment on every level, including nutrition, exercise, thoughts, beliefs and feelings, and how these affect the expression of our DNA. Nothing is the complete answer... it s a very broad collection of a whole lot of things. In my practice, I advise people to meditate, but you ve got to do the work on the stuff that you bring with you, and we ve all got it baggage. I have lots of anecdotes about people who changed how they viewed the world and how they existed within the world and environment, and it made a dramatic difference to both their psychological wellbeing and health. For me, it took the drama of being diagnosed with cancer before I thought what s going on here? When I had breast cancer, it was terrible. We had four children under 15 and I thought I was going to die. It was a traumatic experience, said Dr Crawford. I felt very grief-stricken on a whole series of levels. I d get in the shower every morning because it was the only place I could cry without upsetting my children and husband. I d never realised you could say no and it felt so good. I was lucky. Friends gave me interesting books such as The Tibetan Book of Living and Dying 8 and intriguing books on the mysteries of quantum physics. These stimulated my interest in areas of thought I never knew existed and began my quest into understanding the mysteries of our minds. However, it s those hidden emotions sadness, grief, anger, powerlessness, etc., and their expression that is the beginning of what is not an easy journey, but one that is so important to take... to find the peace that at the end of the day is all any of us wants. It is my belief that it is this peace that also allows our physical body to function and heal as best it can. I began to listen to myself and to my intuition, and to do what did and didn t feel right for me. I learnt to say no. This is not being selfish, as we so often think it s about self-care.... there are now thousands of good studies on the effects of meditation... Before cancer, I always did what other people wanted me to do. I was completely disconnected to my own inner world and never listened to what I wanted or what I felt. I went into my healing space, and if people rang me and said can I come and visit you?, I d think to myself, I don t have to say yes to this, so I could say no without guilt. And it was like oh my god, this is so fabulous. I d never realised you could say no and it felt so good. Of course, this was my journey. Everyone has a different path to travel but whatever it is, it is important. The difference between me now, and 12 years ago, is the awareness I have about my mind. In my practice, I teach three things you need. Firstly, you need awareness about how you exist in the world (this is where my practice as a psychotherapist is enormously helpful), secondly, a will to want to change, and thirdly, you ve got to practice it. Practice is what changes your brain and your physiology. In my view, how we exist within and respond to our world and environment and how we incorporate every aspect of our mental and physical worlds, including our genetic makeup, nutrition and exercise, is what determines our health. And that is what science is starting to tell us. This is a truly holistic approach to living a long, healthy and happy life. * Dr Crawford runs a weekend program at the Southern Highlands Private Hospital oncology unit, Bowral (NSW). 1. This is explained in Richard Davidson s bestseller, The Emotional Life of the Brain. 2. These small structures are thought to provide important clues for fighting chronic diseases and slowing down the aging process. 3. Described in Austrian psychiatrist, Viktor Frankl s book, Man s Search for Meaning. 4. The Telomere Effect by Elizabeth Blackburn and Elissa Epel. 5. Remarkable Recovery: What Extraordinary Healings Tell Us About Getting Well and Staying Well by Marc Barasch and Caryle Hirschberg. 6. Quantum physicist, Arnold Mindell, developed process-oriented psychology in the 1970s. 7. A developmental biologist and author of The Biology of Belief, who promotes the idea that genes and DNA can be manipulated by a person s beliefs. 8. Written in 1992 by Buddhist meditation master, Sogyal Rinpoche. 5

6 6 My Journey Continued: David didn t relate exorbitant back pain to active myeloma Some people can be like that for six months and others can go 10 or 15 years asymptomatically. She said go and enjoy your travels but she wanted to do a blood test every three months to monitor my paraprotein level, and one of the major symptoms to watch for was bone pain, and to let her know immediately if I got aches and pains in my thigh bones. I ve never had bone pain, as she described it. I was asymptomatic for about two years and led a normal life, although in hindsight there were a few tiny changes in me that I never associated with myeloma, but today I would. I started to do some research but you don t know where to go and it s very easy to find all the bad stories, said David. After David s diagnosis, he and Bette agreed not to delve too greatly into the depths of myeloma. It was frustrating to be fit and healthy one day and the next day to be told you ve got blood cancer but you don t feel any different! Two years later, I m still not feeling any different, so you put this cancer business right out of your head. It wasn t until the symptoms really set in that I thought: I really want to know a lot more about this (myeloma). That s when I discovered the Leukaemia Foundation s publication [Myeloma, a guide for patients and families]. Had I read the booklet earlier, I would have diagnosed my bad back very quickly. I was keen to get on to a chemotherapy program as soon as possible, said David, but he had to endure ongoing back pain over the Christmas break until early this year when he began treatment on bortezomib (Velcade ). The myeloma booklet explained the usual range of therapies being used worldwide. I was put on the first one, more or less, and I was pleased I was on what was considered among best practice. I had no reason to be concerned, said David. It was evident after three months that bortezomib wasn t controlling David s myeloma at the expected rate, so his treatment was changed to lenalidomide (Revlimid ) in April. This process was almost harder on my wife, as my carer, than on me. I m a very positive glass 120% full sort of person, but it upset Bette considerably that the first chemotherapy drug we used wasn t working effectively. Another area of my praise for the Leukaemia Foundation is their closed Facebook myeloma network group. I don t use it but my wife does. It was good therapy and a great support for her when she asked about others experiences with bortezomib. About a dozen people ed her within hours and said Bette, don t worry, I didn t respond either and I went on to Revlimid and it worked really well for me. David s paraprotein level dropped more in one month on lenalidomide than it had over the previous three months, and it continued to drop consistently. In April, his bone marrow transplant specialist told him his paraprotein had to be well under 15 to be considered for a stem cell transplant. So I went back to my haematologist and said I want you to get me under five (units of paraprotein), said David. His paraprotein was three when his stem cells were collected prior to having a transplant on November 2 and he had set himself the challenge of being out of hospital within two weeks. On day +14 after the transplant he was released from hospital, which Bette said: was a bit of a surprise and we were not expecting it. David chose to have his transplant in Brisbane, so his daughter, who lives at Toowoomba and his son, who lives at Warwick, could visit during and after the procedure. The Leukaemia Foundation provided a self-contained apartment at no cost for David and Bette to stay on in Brisbane until he was ready to go home. Again we are extremely grateful it s outstanding. We re very strong supporters now of the Leukaemia Foundation, said David. As time goes on you realise how much they do. As a family we participated in Light the Night (LTN) this year and my wife, daughter and I collectively raised $1500, which we re pleased about. The three of us walked at the Toowoomba LTN, my son walked at the Stanthorpe event and, as the Coffs Harbour LTN was postponed, Bette and I also took part in the rescheduled event when we got back home [after medical appointments in Brisbane]. I ve been very fortunate, said David. I seem to have a strong constitution and the side-effects of both drugs [bortezomib and lenalidomide] have been minimal for me. While he had to go to a cancer clinic for his weekly bortezomib injection, lenalidomide is a tablet, which David said was a big relief and freed him up. We were able to do a bit of travelling and visit our children for longer periods, he said. My haematologist said if you d presented to me when I started my career, I d have given you two years, and today there are multiple drugs coming out by the year that give specialists more options for treatment. If you don t respond to one, there s something else, and if you don t respond to that there are more and more fallback lines now. And my transplant haematologist hopes I ll get a 10 year remission and said that in a decade the science of treatment will be totally different. I hope I have a long remission and if it comes back, there are more options, said David. Continued: Two world-first Aussie trials for new myeloma therapies We are continuing to enroll patients to see what the right dose will be going forward. We re up to patient number 6 and think it might take between 10 and 20 patients to fully establish the safe dose and what kind of activity will be seen on the myeloma. Assoc. Prof. Shortt said recruitment to this trial had been slow due to many new clinical trial options and compassionate access programs being available. Now that this orally delivered agent, which is taken just once a day, seems to be well tolerated, this Phase I trial might be attractive, particularly to people who are running out of other treatment options or want to contribute to scientific discovery. This is a government-sponsored initiative, funded by the National Health & Medical Research Council, and if proven to be successful, NMP could be extended relatively cheaply to people with myeloma, said Dr Shortt. For more information about these trials contact Assoc. Prof. Shortt (jake.shortt@monash.edu) and speak to your haematologist for a referral. *The Leukaemia Foundation awarded Jake Shortt (Peter MacCallum Cancer Centre) a PhD Scholarship in ($40,000 annually) and in 2009 Ricky Johnstone & Mark Smyth (Peter MacCallum Cancer Centre) received a $100,000 Grant-in-Aid from the Foundation. Jake Shortt s preclinical and clinical research at Monash Health and Monash University (Melbourne) is geared towards understanding the biology of myeloma, how new treatments can be applied, then translated into the clinic, and looking for new drugs to overcome resistance to current therapies.

7 Living Well 7 Blood Buddies has an interconnected domino effect The domino effect of the Leukaemia Foundation s Blood Buddies program extends the reach of this peer-topeer support, as participants are inspired to share their myeloma experiences with others. Well before Blood Buddies was launched in 2014, Kate Herrera, 54, of Perth heard by chance of a friend of a Kate Herrera Kate s diagnosis with myeloma in 2005 was a relief, following a netball injury the year before and 18 months of tests, scans and specialist appointments. Her son and daughter were seven and 12 at the time. She started treatment right away (bisphosphonate, thalidomide and dexamethasone) and had an autologous stem cell transplant (SCT), in March Later that year, Kate went on a clinical trial for revilimid and she s still on this treatment along with dexamethasone and regular bisphosphonate infusions. I ve been lucky. I can manage the sideeffects and I m still here 12 years later, said Kate, who describes herself as a happy, positive person. Myeloma doesn t get me down. I understand the seriousness of the whole thing, but won t let it ruin my life or run my life. When I was first diagnosed I asked the Leukaemia Foundation if there was someone I could speak to who had been through a SCT, but there were no Buddies back then. Years later, after reading about the new Blood Buddies program in a Leukaemia Foundation newsletter, Kate signed up. She became one of our first qualified Buddies and has been matched up with three people with myeloma. Sometimes you just need someone you can talk to who understands and has been there. Having a Buddy is really important in terms of dealing with the disease and what s to come as important as seeing the haematologist or nurse counselor. Doctors and nurses have all the book knowledge and they can say what s happened to other people they ve seen, but they haven t lived it. And others can empathise but they can t understand. If you haven t done it, you re only guessing what it feels like. So many things are personal about being diagnosed with cancer and having a transplant. Sometimes you just need friend who has something that sounds similar to what you ve got. She met up with Brendan Cullinan, 52, also of Perth, to chat about what they had in common a myeloma diagnosis. They became friends and later Kate asked him to be a referee when she joined the Foundation s program to become a Blood Buddy. Brendan, in turn, opted to go through the training program to become a Buddy as someone you can talk to who understands and has been there. Kate s first match was absolutely lovely but she didn t understand anything about myeloma because when she was diagnosed she didn t want to know. I was able to explain to her what myeloma was, what was happening and to make her a bit more comfortable with asking questions, and she went back to her doctor to get the information she needed to understand what was going on. When diagnosed, a lot of people shut down. For many, cancer is still a sentence. They David Coronno David initially refused to have a stem cell transplant but later, after deciding to take the chance, talks with his Buddy helped him understand the process more deeply. Peter explained everything that was going to happen which was very well. Then one of his matches, Peter Bruhn, 61, who divides his time between Perth and his Dunsborough property, also decided to become a Buddy. In this volunteer role, Peter provided a confidence boost to Brisbane s David Coronno, 71, in the lead-up to David s stem cell transplant earlier this year. The individual stories of these four people are featured below and on page 8. think: that s it, I ve got cancer, I m dying. These days it s not the case. People can live a very long time after a cancer diagnosis. The healthier and fitter you stay, the more you can handle all the things that are thrown at you the drugs, side-effects, and the actual myeloma symptoms. I really enjoy being a Buddy and I think it helps me too. All of it the myeloma, Blood Buddies, talking to people helped when I was diagnosed with ovarian cancer this year! said Kate. comforting and said: maybe it s not as bad as you think it s going to be, said David, who was diagnosed in early He rang me up when I was in hospital and said you ll feel this and you ll get down and you ll feel better in a couple of days. It made it all seem so easy and took away the scariness, said David.

8 Living Well 8 Brendan Cullinan Brendan, who was diagnosed in 2011, considers himself very fortunate to have been in remission for the last six years and is getting on with his life. His unresolved recurring backache was quickly identified as myeloma and after urgent spinal surgery he began treatment (dexamethasone, cyclophosphamide, thalidomide) and had a stem cell transplant in November I was connected with Kate through mutual friends. She d been through the same process I was about to embark on, said Brendan. I found it beneficial to hear what she had been through and to get advice about how she handled certain situations, as a guide as to what I could expect going through the whole treatment. There s a unique bond in talking to someone who s been through the process and to really discuss how they felt from a physical and psychological perspective, said Brendan. After finding out about Blood Buddies through Kate, Brendan inquired about how he could contribute and be part of the program to support people who are going through similar experiences to what I ve had. The training was beneficial in how you engage with people and provide support, acknowledging everyone s individual circumstances and how you react are different. Brendan also has been matched with three different people. From a personal perspective, I ve found being a Buddy quite fulfilling. The opportunity to talk with somebody, to hear their story and hopefully to reassure them and maybe appease their fears. I hope what I contribute to a conversation helps them through the journey, which can be difficult for some people, and that my story and what I ve experienced gives peace of mind regarding what to expect. I d encourage people who would like to provide that support to consider joining the program, said Brendan. And it s personally satisfying to think that my conversations with Peter (Bruhn) also inspired him to also look at providing that ongoing support. Peter Bruhn Over 10 months, Peter Bruhn saw three GPs, had eight blood tests, two ultrasounds and a CT scan, none of which explained his ongoing rib pain or picked up myeloma. It was his wife s doctor who sent him for a specific blood test [for paraprotein] that led to Peter finally being diagnosed with myeloma in October He immediately started induction therapy and three months later had a transplant. Peter was online, finding out what stem cell transplants were all about, when he discovered the Blood Buddies program and signed up. My Buddy [Brendan] had been through a transplant and also was a patient of my haematologist. We only spoke three times because I don t need a lot of handholding, said Peter. We had a good relationship and he was very reassuring and instilled confidence in me, which was embryonic in my decision to become a Buddy. Blood Buddies is a wonderful program five star. Where else would you get the opportunity to talk to someone who s been through the same journey as you re going to go through, said Peter. He described the social and emotional support you get as well as the knowledge and experience as being provided with a mud map. You ve got to go through it to know what it s all about. That s why Blood Buddies is so important and I decided I could put something back and applied to be a Buddy for someone else. I helped a fellow in Queensland [David] through his stem cell transplant and now he s back at the gym and doing fine. We still keep in touch. We talk about different things that pertain to people with a terminal illness and share the information you really need to get you through, like life insurance, wills and powers of attorney. The 2018 Education and Support Program Event Calendar will be available soon on our website: leukaemia.org.au Join the Myeloma Network closed group on Facebook: Visit for our latest Education and Support Program Event Calendar. To register for an education or support event, freecall or info@leukaemia.org.au Contact us GPO Box 9954, IN YOUR CAPITAL CITY info@leukaemia.org.au leukaemia.org.au LeukaemiaFoundation LeukaemiaAus LeukaemiaFoundation Disclaimer: No person should rely on the contents of this publication without first obtaining advice from their treating specialist.