LIWA Treatment Gave the Gift of Comfort

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1 A breath of Newsletter of the Lung Institute of Western Australia (Inc) 2015 LIWA Treatment Gave the Gift of Comfort This year will be Chris s first Christmas without her husband, Rod who earlier this year lost his battle with mesothelioma, a cancer of the lining of the lungs caused usually by exposure to asbestos. Rod s exposure to asbestos began as a tiny child, when his father built houses and farm sheds as part of the War Service Land Settlement Scheme. He used to play with the stuff, says Chris of the building material now commonly known to have deadly carcinogenic properties. Rod followed his father into the building industry and completed an apprenticeship as a carpenter, but as was the trend, many houses were built from products made from or containing asbestos and his exposure continued. Unfortunately, there is still no cure for mesothelioma, but treatment programmes initiated by Lung Institute of WA researchers have meant that the final months of the life of someone with this horrific diagnosis can be more comfortable and most importantly, be spent at home with family. When Rod was diagnosed we were devastated, says Chris. We just didn t think there was anything we could do. The couple saw specialist Professor Gary Lee, who explained that Rod had developed a pleural effusion a build up of excess fluid in his pleural cavity that was caused by the mesothelioma. The litres of fluid kept building up, compressing his lung, and he could not breathe. The procedure for draining the fluid involved sticking needles and drains between his ribs to empty the fluid. It could take a whole day of driving, waiting in clinics and then having the procedure. But Rod didn t give up his zest for life. As a mad keen crayfisherman, Rod continued to dive as long as he could. He felt a bit puffed but he still lived life, remembers Chris, even more so because he knew it was going to kill him. I remember in the March we went to hospital. He gave two huge crayfish to the doctors. They couldn t believe he d dived for them. Rod discovered during that visit that only one lung was functioning, with one having collapsed. Prof Lee offered Rod the chance to be part of a new service his team was providing. He would place a special indwelling pleural catheter in Rod s chest so Chris could help him drain the fluid at home. After that Rod still wanted to dive, says Chris. Prof Lee was trying to find ways to make the catheter watertight. But he never got another dive in. Rod couldn t dive anymore, but he had more time at home than before. That really was great, says Chris of the catheter, it was the best thing that ever happened. It allowed us so much more freedom, and quality of life. Our little granddaughters played nurse and it allowed us so much more time at home. It was honestly brilliant. I couldn t recommend it enough to anyone. In this issue Read more stories like Rod s at: From the Director s Desk 2 Progress Needs To Be Made 4 in IPF Research Glenn Brown Memorial Grant 5 Lung Researchers use bacteria 5 to shrink cancer cells LIFE Update 6 Clinical Trials Now Recruiting 7 Members information 8 1

2 From the Director s Desk Since I came on board in April this year, we have had a full strategic review of the Institute. I came in at the right time with the luxury of fresh perspective, and aim to help build up a collaborative respiratory research as I did in London. Our strategic review has determined our direction for the next five years and beyond. We have consulted with many of you in the respiratory health community, as well as with many of you living with respiratory conditions. Our aim will be to improve the life of everyone living with a respiratory condition. Our mission is to bring together world class researchers and dedicated clinicians to investigate, diagnose, treat and prevent respiratory conditions. I know the work we do results in fantastic results for patients like the members of the Easy Breathers club, part of our Physiotherapy Unit who I recently took a walk with. The people who I talked to at Easy Breathers told me about how they live day-to-day with their conditions, and I know that our work gives hope for a better future for them. I also know that we can make more of a difference to people living with respiratory conditions both locally New LIWA Director Winthrop Professor Geoff Laurent and globally by improving the way WA respiratory clinicians and researchers could work together. We have already started reaching out to the wider respiratory community in Western Australia, and I have recently appointed a Leadership Team to help get the best results for people with respiratory illness. Meagan Shorten, Head of our Clinical Trials Unit, is part of that team, as is Cameron Agnew our Executive Officer. And we have two new members of this Leadership Team a Deputy Director for the first time in Winthrop Professor Peter Eastwood and a Clinical Director in Winthrop Professor Gary Lee. Prof Lee is Professor of Respiratory Medicine at the University of Western Australia, as well as both Director of Pleural Services in the Research Department and Head of the Respiratory Medicine Department at Sir Charles Gairdner Hospital. Prof Lee currently heads up the Pleural Medicine Unit at the Lung Institute of WA, and will build on his track record of translational research for patients with mesothelioma and pleural infection. Prof Eastwood is Director of UWA s Centre for Sleep Research in the School of Anatomy, Physiology & Human Biology and is the first researcher for sleep related breathing disorders to join the Institute. Peter is currently Editor-In-Chief of the journal Respirology, the major Respiratory Medicine Journal for the Asia-Pacific Region, a National Health and Medical Research Council Senior Research Fellow at the West Australian Sleep Disorders Research Institute, and Scientific Director of the West Australian Pregnancy Cohort (Raine) Study. Peter has also just been awarded a NHMRC Project Grant for $1.4million for a research study, Prevalence, phenotype and genotype of common sleep disorders. Finally, I would like to make you aware that we will be making a big announcement next February. Some of you who are members may have an idea as to what this will be, but I invite all of you to keep your eye on over the next few months to see what we have in store. I hope you ll join me in anticipation of this announcement and the further results of our strategic review, and that you keep in touch via our e-newsletter. Geoff Laurent Winthrop Professor Geoff Laurent, PhD, FRCP(Hon), FRCPath., FMedSci was appointed as Director of the Lung Institute of WA in April,

3 LIWA Glenn Brown Grant for Cystic Fibrosis and Bronchiectasis Each year, the Lung Institute of WA offers a $50,000 grant to a researcher for 12 months of work investigating better treatments and management of cystic fibrosis and bronchiectasis. In 2014 the LIWA Glenn Brown Memorial Grant for Cystic Fibrosis and Bronchiectasis Research was awarded to A/Prof Sue Jenkins, from the Institute s Physiotherapy Unit. She and her team, including Senior Physiotherapist Jamie Wood have investigated the impact of telehealth services on adults with cystic fibrosis (CF) living in rural and remote Western Australia. Money raised at the annual Melbourne Cup Luncheon funds the grant, which has helped set up telehealth CF clinics a way for medical specialists to consult with people with CF without needing to see them in person. They involve a specialist team who use videoconferencing technology to communicate with the patient at their local hospital. Without this service, people with CF would have to travel regular long distances to Perth to attend CF clinic appointments in person. The project aims to reduce the burden of travel time, increase frequency of contact with the specialist team, and improve health outcomes for the adults with CF involved. The study looks at the impact of these new clinics on the quality of life, lung function and healthcare utilisation of nearly 25 adults across the state from as far north as Broome and Fitzroy Crossing, down to Albany. The Glenn Brown Memorial Grant was named after a young boy from Kalgoorlie who lived with cystic fibrosis all his life. He ultimately succumbed to the disease in 2003 by the age of 15. Although Glenn Brown is no longer here his legacy continues to be alive through this grant. Lung Researchers use bacteria to shrink cancer Tumours Lung Institute of WA researchers have used a theory first trialled in the 1800s to successfully shrink mesothelioma tumours using a toxin usually produced by a type of bacteria. In a paper published in the journal Respirology, lead author Dr Sally Lansley details her success shrinking tumour cells using a bio-product mixture filtered out of the bacteria Staphylococcus aureus (S. aureus). When Dr Lansley injected the bio-product mixture into tumours of mice with pleural mesothelioma the tumour cells died, and tumourfighting T-cells were activated. This was the case as long as the bio-product mixture was given. Sally said: Scientists have known about Coley s Toxin since the late 19th century, when William Coley noticed that when patients with cancer developed infections, the cancer disappeared. We re using the same theory, as Coley discovered that it is a type of toxin produced by the bacteria that kills the cancer cells, not the infection itself. This research is exciting because not only did the tumour cells die, but there was a big increase in T-Cells that fight cancer at the sight of the injection. This could mean that in the future, doctors could use toxins taken from certain types of bacteria as an alternative treatment to current therapies like chemotherapy or radiotherapy. The S.aureus bio-product mixture has been used in the past in people with lung cancer to help close up the space around the lungs that become filled with fluid. Some of these patients also had a higher survival rate, so the Western Australian team wondered whether the bio-product mixture would have a direct effect on the tumour itself. 3

4 Progress Needs to Be Made in IPF Research Zach, Aunty Fong, the restaurant owner and Joe Zach Dawes and Joe Yasa are two passionate young men who have just finished their honour s projects at the Lung Institute of WA. They decided to focus their research on the rare and fatal lung condition, idiopathic pulmonary fibrosis (IPF). IPF is a difficult condition where affected people have to live with constant severe pains and shortness of breath; but it never dawned on Zach and Joe how challenging the lives of affected individuals can really be. Initially their honour s project at the Lung Institute of WA was chosen out of pure interest, but their academic life was given a new meaning in January 2014, after they both met a woman living with IPF while on their lunch break one day. Joe said, Researchers sometimes go through their whole career never meeting someone living with IPF, and as fate had it, we met Aunty Fong on our lunch break. She was working at the Chinese Restaurant where we were having lunch, noticed our LIWA badges and asked about what we do. It turned out she actually lived with the condition. That experience was very emotional and gave us a real insight into what someone s life is like who lives with IPF. Her name is Mrs Fong or as Joe and Zach affectionately call her, Aunty Fong; she is an 80 year old woman with an overwhelmingly positive attitude. It is rare to see her without a smile; she always declares her great love for people and deep passion towards life. Aunty Fong was diagnosed with IPF two years ago and upon her diagnosis she was told she only has about four more years until she will succumb to the disease completely. Regardless of the shadow placed on Aunty Fong s life she still manages to be an inspiration. Joe mentioned; She always expresses her undeniable gratitude to having lead an amazing life, filled with opportunities and love. She told us how fortunate she is to be blessed with three amazing children and nine grandchildren. She preaches that one should never feel sorry for themselves and live life with the attitude that life can only get better tomorrow. That attitude really struck us emotionally what positivity from someone who has a timer set on their life. Although one would never suspect it on first impressions upon meeting Aunty Fong, people who live with IPF find simple tasks such as breathing to be extremely difficult. This is because a large build-up of scar tissue collects in the pleural cavity. The reason for this scar tissue build up is still unknown due to the fact the condition is so rare, and diagnosis is difficult. Therefore advancements in research have been slow. Even though it is labelled as a rare disease, statistics show that approximately 5,000 people live with IPF in Australia alone. There are people in this world, who might be your relatives, your friends, someone you know or someone who might know someone else who lives with it and they deserve solutions and answers. Progress in researching IPF needs to happen, said Joe. We now work not only to complete our honours but also to make a difference in people s lives. If affected people like Aunty Fong can be so overwhelmingly positive, I think we owe it to her and everyone else to work extremely hard and find solutions for this challenging condition. Zach said. Zach commented; We encourage anyone and everyone who have IPF or know of someone with the condition to please seek help from the Lung Institute of WA, in the process you are helping us as well, we need to understand the condition better. To find out more about what LIWA is doing on the topic of idiopathic pulmonary fibrosis and how you might be able to help, visit our website on 4

5 World COPD DAY Zach Dawes, Honours Student I am looking at the cells that line the airways (epithelial cells) of the lungs, and what role they play in helping to form scar tissue, particularly in diseases like idiopathic pulmonary fibrosis (IPF). Treatment options are very limited and there is an urgent need for better approaches. We don t know what causes IPF but we do know that the cells that line the airways become injured but cannot be repaired normally. In someone with IPF, the lung epithelial cells seem to keep releasing substances that effectively promote fibrosis (scarring) in the lung but we do not know exactly how these substances cause the scarring. So I am looking at different substances that may be causing the fibrosis and trying to understand the way they are working and what changes are happening to the epithelial cells. Joe Yasa, Honours Student My Honours project is looking at how a molecule called STAT-3 regulates the function of immune cells and how this may contribute to the disease process of Idiopathic pulmonary fibrosis (IPF), a terrible disease that causes scarring in the lung preventing them from working properly. In particular, I am interested in B-cells, one type of white blood cell. B-cells play an important role in the immune system by secreting antibodies that help protect the body against invading organisms. However, if not properly regulated, they can target the body s own tissue for destruction. In our lab we have identified that STAT-3 is pivotal in the development of lung fibrosis and can regulate B-cell function so that they promote fibrosis. We have exciting preliminary data in model systems showing that when B-cells can t function, STAT3-induced fibrosis is blocked. This highlights a critical role for B-cells in STAT-3-mediated fibrosis and future therapies should consider targeting B-cells for treatment of IPF. Hilary Monton is an adventurous LIWA member who decided to share her experiences living with Chronic Obstructive Pulmonary Disease (COPD) to help raise awareness of the condition for World COPD Day on 19 November, to improve awareness and early treatment for the condition. Hilary was diagnosed with COPD in 1996, but like many people in her situation she lived with the symptoms of breathlessness and chest pains for a few years before seeking treatment. Living with COPD, Hilary found it difficult to do the things she loved to do. Luckily she decided to get in contact with a lung specialist Prof Phil Thompson one of the Lung Institute of WA s expert clinical researchers. He gave her some life changing advice an innovative new surgery to remove parts of her damaged lung. I want to prevent other people from going through what I did. I encourage people to seek treatment straight away the sooner the better! More work needs to be done to make sure everyone with a chronic lung condition can take a deep breath and live their life. If you live with COPD you can find out more on our website: 5

6 LIFE Update As the first self help group for people living with chronic lung disease back in 1992, Lung Information and Friendship for Everyone (L I F E) soon became a contact point for other groups around Australia just starting out. We supported new group leaders, discussed various models of group operation and shared our experiences beginning a new group. Later Lung Foundation Australia set up LungNet, the support network for Australian groups and expanded the group support role. The Foundation continues to help new and existing groups, as well as individuals living with lung disease. L I F E s role has continued here in Western Australia speaking at other group meetings and networking with local leaders. There are now 10 groups in WA. In 2013 we drew local respiratory self help groups together for a combined respiratory support group display booth at the Self Help Group Expo hosted by Connect Groups at Garden City. After meeting people from other groups at the Lung Foundation s annual education day, L I F E members have shown interest in getting to know people better in other groups by visiting them, such as our most recent visit to Northam s Wheatbelt Wheezers. There are additional opportunities for more information sharing, learning and networking events or sharing a speaker bureau. As the Lung Institute of WA undergoes strategic change, adopting a stronger collaborative role with respiratory researchers, the time is perfect for L I F E to take on a stronger networking role with groups across the State. Western Australia is a fair way from anywhere else and there is so much that WA groups can do to help each other. L I F E has been discussing these ideas with the Lung Institute of WA staff for some months and we d like to see the formalisation of this expanded role for L I F E, including the capacity for other groups to be affiliated with the institute here in Western Australia, in the same way that they are affiliated with the Brisbane-based Lung Foundation Australia. Some WA groups have already indicated an interest in this. We ll start off by inviting leaders from the other nine WA groups to attend L I F E s Christmas party. LIFE volunteers The volunteers have been busy again, helping the Clinical Trials Unit by assembling files for new patients and another working bee is planned before the end of the year. If you would like to be a part of the LIFE volunteers group please call Jenni on or life@liwa.uwa.edu.au A Breath of LIFE LIFE produces a quarterly magazine providing information on lung awareness, respiratory recipes, news, events and a touch of humour. To get the latest issue please call Jenni on LIFE Events WEDNESDAY 26 NOVEMBER Christmas Party All are welcome to join us for the LIFE Christmas lunch: cost $10 per person. Level 2 lunchroom, Harry Perkins Institute for Medical Research, QQ Building, 6 Vernon Street, Nedlands. Either meet us there or at G Block of Sir Charles Gairdner Hospital at 11:45am to join a convoy on foot or by Charlie s Chariot to the venue. For enquiries, call Dorothy WEDNESDAY 4 FEBRUARY Social Meeting (no speaker) Come and have a chat at the Respiratory Library, 1st Floor, B Block, Sir Charles Gairdner Hospital from pm 6

7 Now Recruiting Get involved in a Clinical Trial Do you live with a respiratory condition? Are you interested in taking part in studies for new medications? We are currently recruiting for the following trials. Please contact the Clinical Trials Unit on or admin@liwa.uwa.edu.au ASTHMA: D3250C00017: If you re years old, using a controller medication asthma and have needed to use oral steroids twice in the past year for your lungs, you may be eligible. You will be required to come for monthly visits for injections and health checks to Sir Charles Gairdner Hospital. GB28688 and GB28689: 52 week trial. If you are years old and on current medication for lungs and have asthma symptoms, you may be eligible. You will be required to come for visits for 12 months including health checks to Sir Charles Gairdner Hospital. IDIOPATHIC PULMONARY FIBROSIS (IPF): GB28547: 2.5 year trial. If you are 40 years or over with a diagnosis of IPF within the last 4 years, on no current medication for your lungs and are able to walk 100m, you may be eligible. You will be required to come for 16 to 28 monthly visits including health checks to Sir Charles Gairdner Hospital. CHRONIC OBSTRUCTIVE PULMONARY DISEASE (COPD): AQX : 12 week trial. If you are years old, on current medication for lungs, been sick in last 18 months due to your COPD and have no other lung conditions you may be eligible. You will be required to come for visits for 6 months including health checks to Sir Charles Gairdner Hospital. MEA117106: 52 week treatment period. If you are at least 40 years of age, on current and regular puffer medications for COPD, been sick in last 12 months with your lungs and have had no cancer in the last 12 months, you may be eligible. You will be required to come for monthly injections including health checks at our site at Sir Charles Gairdner Hospital. CTT116855: 52 week treatment period. If you are at least 40 years of age, on current and regular puffer medications for COPD, been sick in last 12 months with your lungs and have had no cancer in the last 5 years, you may be eligible. You will be required to come for health checks at our site at Sir Charles Gairdner Hospital either every month or every 3 months. BRONCHIECTASIS: ARD : 13-month trial. If you are 18 years or older, and have taken antibiotics at least twice in past year for your lungs you may be eligible. You will be required to come for 3 fortnightly visits and 11 monthly visits for health checks to Sir Charles Gairdner Hospital. ALPHA ONE ANTI-TRYPSIN: GTi1201 SPARTA TRIAL: Approx 3 year trial. If you are between years old, have a diagnosis of Alpha 1 Antitrypsin Deficiency with evidence of emphysema, no flare up of the chest in the last 5 weeks prior to the first visit and no cancer in last 5 years you may be eligible. You will be required to come once a week for 3 years for treatment including health checks to Sir Charles Gairdner Hospital. You will also be asked to perform CT scans of the chest 5 times throughout the trial. Healthy volunteers wanted Do you have a spare 20 minutes to help with a new trial for COPD? Volunteers over the age of 60 are required to give a breath, by giving a sample of their breath to be used as the control in a new study. For more information contact or admin@liwa.uwa.edu.au Medical Research Seminar Highlights The Lung Institute of WA hosted two visiting speakers during July and August of this year. Professor Darryl Knight, Head of the School of Biomedical Sciences and Pharmacy at The University of Newcastle presented What s the magic number behind epithelial cell differentiation, innate immunity and asthma: (p)300. Professor Dave Singh, Clinical Pharmacology and Respiratory Medicine from The University of Manchester, England presented Dual bronchodilation and the changing landscape for COPD. Keep your eye on our website or your inbox for sessions for Prof Yuben Moodley, Prof Dave Singh Dr Sally Lansley, Prof Darryl Knight 7

8 We ve Membership been listening News Thanks to everyone who completed an online survey this year. Here s what you told us: Most of you were members, and had heard about us through taking a free lung test or being part of a clinical trial. Most of you live with a lung condition and keep in touch with us to find out about our medical breakthroughs and new treatments. Those who had donated in the past wanted their gift to go towards medical and clinical research, and some were just happy to donate their time. A high number of you agreed that we d let you know how your gifts had made a difference to people s lives and to our work. We asked you about how we could make membership better the most popular response was for us to get you more involved in our researchers to collaborate, meet with or attend more research seminars. Most of you liked online communication, but your favourite publication was this one Breath of Fresh Air and the real life stories. If you would like to add your thoughts, please publicrelations@liwa.uwa.edu.au Members Information NEW MEMBERS LIWA would like to welcome our new members: Ellen Ayling Danielle Blakey Crystal Bourke Anne Boxall Neil Cock Deirdre Coombe Walter Denison Colin Easther Angela Fonceca Dorothy Koh Alice Lenghaus John Neale Fergal O Gara Prabhala Prabhala Brigitta Rawson Irene Reeves Nigel Stephens Find out about all the latest news and events at LIWA by becoming a friend of the Institute on Facebook or Twitter Erika Sutanto Dudley Thubron Penny Van Kampen Greg Walsh Look out for our gift-giving campaigns in 2015 and please: Supporting liwa There are many ways you can support LIWA. Name: I wish to make a donation of to respiratory research. I would like information about becoming a member. I would like information about mentioning LIWA in my will. I would like to find out more about fundraising for LIWA. Address: Tel: All donations over $2 are tax deductible. You will be mailed a receipt. Donation details Please find enclosed a cheque Please deduct $... from my credit card Visa Expiry / Signed: Mastercard Lung Institute of Western Australia (Inc) Ground Floor, E Block, Sir Charles Gairdner Hospital Nedlands, Western Australia, admin@liwa.uwa.edu.au Phone: