TREVOR IS OPTIMISTIC AND ACCEPTS HIS NEW NORMAL

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1 MYELODYSPLASTIC SYNDROME news CARING FOR PEOPLE WITH MYELODYSPLASTIC SYNDROME AND THEIR FAMILIES january 2014 TREVOR IS OPTIMISTIC AND ACCEPTS HIS NEW NORMAL Trevor Turnell has thought of getting a t-shirt printed with Best before December That s when the Brisbane draughtsman, who had always been so well, was diagnosed with MDS during a routine six monthly check-up to monitor his blood pressure. A blood test revealed his red blood cell count was low. Looking back I had been out of puff mowing the lawn but put it down to getting older, said Trevor, 64. My haematologist explained what the bone marrow wasn t doing. At that stage I was on watch and wait, but I ended up having a blood transfusion before Christmas. My haemoglobin went down quickly and by February (2011) fatigue set in at a level I d never experienced before. I couldn t walk a block and was exhausted drying myself after a shower. Trevor was having transfusions of blood and platelets every three weeks and experiencing chest pain when he was offered a clinical trial. In May that year he began the trial treatment regimen azacitidine (Vidaza ) in combination with lenalidomide (Revlimid ). At the time he was working for consulting engineers on the Legacy Tunnel and after several months of treatment, Trevor s sick leave was in the red. He chose to use his salary continuance insurance that was part of his salary package and left work in September. Towards the end of 2011, my blood counts started improving. I haven t had a transfusion for more than two years or a bone marrow biopsy since April last year, said Trevor, whose blood counts are stable. My Hb is good and my white blood cells and platelets are a new normal, but not a concern. After 12 months on the trial, Trevor went off the lenalidomide and, according to trial ethics, has continued treatment on azacitidine. Continued on page 7... IN THIS ISSUE Lenalidomide PBS-listed... 2 National MDS Day... 3 MDS Impact Study results...4/5 11 Qs: Kevin Dwyer... 6 Diary Dates... 8 Trevor Turnell gets lost in the music when he plays his new organ every day. MDS 1800 News January

2 Just Briefly PBS Listing for LENALIDOMIDE Now people with MDS can access lenalidomide through the Pharmaceutical Benefits Scheme (PBS). Lenalidomide (Revlimid ), an immunomodulatory drug (IMiD) that works by modifying the immune system, was approved by the Therapeutic Goods Administration in December The drug was listed on the PBS in November 2009 for people with myeloma who had relapsed or were no longer responding to the standard treatment. LENALIDOMIDE NOW AFFORDABLE Rachael Symington, who was featured in a story in MDS News in July 2011, was diagnosed with MDS Del 5q in late-2008, aged 36, while living in Adelaide with her husband and son. After her disease advanced in February 2010, she started treatment with lenalidomide (Revlimid ) in June At the time lenalidomide wasn t PBS-approved and, at $300 a tablet, this meant the cost of treatment for 12 months was more than $70,000. However, Rachael was able to access the lenalidomide through a compassionate access scheme following negotiations with her private health insurer and the drug s manufacturer, Celgene. She described her response to the drug as quite remarkable and was able to return to work in January Lenalidomide has given me back the quality of life that the cancer took away, said Rachael, now 41, and living in Townsville. She is active, participates in sport, and most importantly, is spending time with her husband and 14-year old son. The Leukaemia Foundation provided a submission to the PBS supporting a proposal to fund lenalidomide through the PBS system. More than two years later, in October 2013, the drug was PBS-listed. On 1 October 2013, lenalidomide was subsidised by the government under the PBS for people with MDS who have transfusion-dependent anaemia and whose condition is associated with the genetic abnormality MDS Del 5q. For more information about lenalidomide contact your haematologist. Rachael Symington out for a paddle. It s wonderful that lenalidomide has been placed on the PBS, so people like me can afford treatment for this form of blood cancer, Rachael said. I m so grateful to be able to spend time with my son during some of the most important years of his life, and that he has his mother there for him. There are Australians who have not been as lucky as me in accessing this treatment. Now, people with MDS Del 5q have affordable access to the treatment that has given my son time with his mother. ALTERNATIVE AZACITIDINE REGIMEN An Australian study has found an alternative treatment regimen for azacitidine is extremely well tolerated and effective in controlling MDS. Improving compliance and reducing adverse events without compromising the response rate was the aim of a trial for elderly people with high-risk MDS. The 18-month study by the Southern Haematology and Cancer Research Institute at Wollongong had 16 trial participants, aged 67 to 86. They each received at least four cycles (months) of azacitidine (75mgs/m2), three times a week for two weeks each month as an outpatient. Results showed a normalization of blood count in at lease one blood cell type in almost 94% of participants, three-quarters of the cohort had a decreased requirement for transfusion, and none had grade II or III complications. Researchers concluded that azacitidine, given subcutaneously as per the trial protocol, was extremely well tolerated and was effective in overall control of the disease. PHONE FORUM ON AZACITIDINE The Leukaemia Foundation held a telephone forum specifically on the subject of azacitidine in October. There were 12 attendees who called in from all over Australia, mostly people with MDS as well as others with AML and CMML, and three Leukaemia Foundation facilitators including National MDS Coordinator, Rebecca Dring. This forum gave the group the opportunity to discuss their own experiences, such as the side-effects of azacitidine, so people could be better informed, Rebecca said. And those who are yet to start the drug had the chance to ask a variety of questions about any concerns or fears they had. A variety of topics were covered including constipation, diarrhoea, nausea, vomiting, fatigue and injection site reactions. The next MDS phone forum will be held on February 12, then on the second Wednesday of each month at 2pm EST. 2 Leukaemia Foundation MDS News - January 2014

3 Living Well THE FIRST NATIONAL MDS DAY The Leukaemia Foundation held its first-ever National MDS Day on 14 July The MDS awareness day is now in the stable of diseasespecific days developed or supported by the Foundation to promote its dedication to all blood cancers. The others are National Myeloma Day, World Lymphoma Awareness Day and World CML Day. The Foundation s National MDS Coordinator, Rebecca Dring, said the focus of the inaugural awareness day was engage with health professionals, to educate them about the findings of the Australian MDS Impact Survey (see story on pages 4-5) and promote the Foundation s support services for people with MDS. The aim of the survey was to learn about how MDS is impacting on the lives of Australians in 2013 and to use our findings to increase health professional awareness of this disease, its complexity, and effect on those living with the disease. About MDS With 25 people expected to be diagnosed with MDS each week, please take a few minutes to learn about this blood cancer. What is MDS? Myelodysplastic syndrome affects the normal production of blood cells in the bone marrow and can progress to acute myeloid leukaemia in around 30% of cases. Who does it affect? More than 1300 Australians are diagnosed with MDS each year, equivalent to 25 people every week. It can develop at any age but is more common in those aged over 60. The cause remains unknown. What are the symptoms? Shortness of breath, fatigue, infection and anaemia. How is it treated? The only chance of cure is a bone marrow transplant. Treatment aims to help control symptoms and slow progress of the disease. For support If you, or someone you know has MDS, please call or visit leukaemia.org.au to find out about our free services to support you. A Leukaemia Foundation initiative for National MDS Day The Leukaemia Foundation funds MDS research and provides free services to support people with MDS. The About MDS poster with key information on this blood cancer. WHAT IS MDS? APP A free app, called What is MDS? is available for clinicians and people with MDS. The app, available through itunes, features an animation video and links to further information from the Aplastic Anemia & MDS International Foundation and other resources. People with MDS and their families can use the app to learn about MDS by watching the What is MDS? video and reading or viewing the disease information and FAQ sections. The app explains why MDS results in low blood counts, such as anaemia (low red blood cell count), neutropenia (low white blood cell count) and thrombocytopenia (low platelet count) and the associated symptoms. Other information provided includes risk levels, treatments and managing side-effects, staying on treatment and preparing for medical visits. As the App was developed in the USA, not all the information provided is necessarily relevant here in Australia Before our research, there was no national literature available in Australia on this subject, said Rebecca. As part of National MDS Day, 27 MDS education sessions were held across the country and attended by 457 health professionals. And dozens of About MDS posters were placed in treating centres Australia-wide to educate people about MDS. An MDS education session. As well, the Foundation launched the new Understanding Myelodysplastic Syndrome (MDS) DVD and seven fact sheets covering the main sub-types of MDS a resource not previously available anywhere in the world, and a fact sheet on Watch and Wait that specifically relates to MDS. National MDS Day was also promoted through the professional body, the Haematology Society of Australia and New Zealand (HSANZ). Rebecca Dring presented the findings of the Australian MDS Impact Survey at the annual scientific meeting of HSANZ at the Gold Coast in October. Evaluation of the awareness day showed that most people attended the education sessions to increase their knowledge about MDS. Attendees also cited hearing about the Leukaemia Foundation s services as a reason to attend. Mark your diaries for National MDS Day 2014 July 14*. * This date the 14th day and the 7th month has a direct correlation to chromosomes 7 and 14, the two most commonly affected chromosomes in MDS. Healthcare providers can use the app to educate their MDS patients about the disease and access additional professional resources including a treating MDS toolkit and educational programs and materials. Image from the What is MDS app. 3

4 Research Matters NATIONAL MDS SURVEY RESULTS More than 200 people with MDS completed the Leukaemia Foundation s first national MDS survey the fifth in a series of disease-specific surveys. The aim of the Australian MDS Impact Survey was to understand the effects of an MDS diagnosis on people s lives and their experiences with the disease. In 2013, an estimated 1300 Australians will be diagnosed with this rare form of blood cancer and the results of the survey helps the Foundation to understand their needs and will guide future actions to improve services and support. There is a belief that people with MDS can fall under the radar in their access to support services and a perception of reduced interest in their care and access to treatments due to their age. The survey s terms of reference were developed in consultation with haematologists, haematology nurses, researchers, Leukaemia Foundation support service coordinators, people with MDS, and a specially formed MDS working group. The following major themes were identified as affecting this group of people: the challenge of initial diagnosis; treatment options, including blood product support, azacitidine, bone marrow transplantation, and access to clinical trials; symptom management including the use of complementary therapies; the financial impact of MDS; services available at treatment centres; transport and accommodation for regional people; the source of their MDS knowledge; and their perception of wellbeing. The survey was conducted online, in hard copy and over the telephone over two months earlier this year. Of those who took part in the survey, there were more males (59%) than females (41%); eight in 10 were aged 60 years or over; and 56% lived in regional and rural areas. Current therapies used Total therapies used 4 Leukaemia Foundation MDS News - January 2014

5 Research Matters Summary of findings Fatigue, shortness of breath, and anaemia were typical symptoms that led to a diagnosis of MDS and 27% of respondents were initially diagnosed with something else, other than MDS. A misdiagnosis occurred more frequently among those living in nonmetro areas. Most found the diagnosis environment supportive, and most were diagnosed by a haematologist. Most participants (72%) received adequate information prior to beginning treatment and the Leukaemia Foundation was the most common source of information and support. Doctors also were a common source of information (69%) and 65% of participants accessed information on the internet (mostly those under the age of 70). People with MDS are not likely to challenge the doctor s treatment recommendations, or actively make decisions in their treatment options, or commence complementary therapies, compared to other disease groups surveyed by the Leukaemia Foundation. Male patients and those treated in a public hospital were most likely to be offered the opportunity to participate in a clinical trial. Of all those asked to participate in a clinical trial, 65% accepted, and those who didn t said the main reason was inconvenience because they lived too far away from the trial hospital. Having experienced a trial, a high majority (88%) said they would still take part and would recommend trials to others. Blood transfusions are the most common treatment therapy for most participants. Seven in 10 had a transfusion at some point following diagnosis and half were currently having them. Three in five survey participants are having treatment therapies to keep the disease under control for as long as possible. Two in five participants have stopped their treatment, with 25% of them citing as a key reason lack of obvious benefit after six or more months. The majority (62%) of respondents had private health insurance at the time of diagnosis and of those who didn t only one in 10 would choose it if they had their time over again. A referral to the Leukaemia Foundation was the most common service offered by treatment centres (56%) and the next most common service was social workers (29%). A bone marrow transplant had been offered to a quarter of respondents and three in five of those actually had one. Of those offered a transplant who had not had one, 67% were waiting for their symptoms to change or worsen before considering a BMT. Of the transplant recipients who completed the survey, 91% were thankful for the opportunity to be cured and would recommend it to others. Iron overload can start at 20 bags. MDS can have a major impact on quality of life. It s important to ensure your treatment team is aware of your side-effects and develops a plan with you to manage these

6 My Journey Eleven Questions Retired financial planner and sales trainer, Kevin Dwyer, 81, of Romsey (north of Melbourne), invented the 90/10 rule. Instead of the usual practice of spending 90% of your time thinking about a problem and 10% working on the solution, he expounds that it should be the other way round. Kevin (pictured) lives this rule and applies it to having MDS. 1. When were you diagnosed with MDS? I was diagnosed with MDS Del 5q in December It began with fatigue, inability to do normal chores and bewilderment at what was happening within my body. After 12 months of exhaustive tests, I finally had a diagnosis and knew what was happening. 2. How did you react to the diagnosis? I was pretty numb but never saw myself as dying. I thought I ll get through this. I look at problems in a manner of how do I fix this? So, I thought I d get the treatment started and fix it (MDS) up. 3. Take us through what happened next. My file was passed from my GP to the Peter McCallum Cancer Centre (Melbourne) where MDS and its effects were explained to me before I was put me on the drug EPO (erythropoietin a drug that stimulates the bone marrow to produce red blood cells) for a month, without success. Next I went on lenalidomide (Revlimid ) and after a month on this drug my wife (Lesley) and I were told it wasn t working, that my disease had progressed to leukaemia and that without treatment I had two to four months to live! It was suggested I try a relatively new drug called azacitidine (Vidaza ) and travel to Bendigo Hospital for this treatment. (At that point I would have travelled to the moon!). I agreed to start the treatment as soon as possible. Until then I had been quite confident I could beat the disease but Lesley and I left the hospital in a complete state of shock and disbelief. I continued receiving regular blood transfusions, began my treatment of Vidaza in May 2011 and my haematologist s approach and confident attitude lifted my spirits. I now think of each treatment as a step to manage the disease. 4. How does life compare before, and after, diagnosis? I used to enjoy my golf and played once a week with my son-inlaw. I haven t played since early 2010 but hope to start swinging a club again shortly. Life s very good and my life now is coming back to normal, but MDS is incurable, so for the rest of my life I ll be getting the treatment. 5. What has kept you going along the way? Lesley has been by my side every step of the way. Her support is invaluable. She keeps me on a positive path and to this day I can hear her saying: come on, we are handling this, just keep going. I have learnt to do what is necessary to help the treatment; to learn and understand what I can do by listening to what my body tells me and to work accordingly. I am a great believer in the body healing itself, but you must help. Light duties first, building up to heavier tasks as you go. I keep myself busy and occupied. 6. Please tell us about your favourite interests and hobbies. Community radio has always been therapy for me. I present a weekly music program (from the 40s, 50s and 60s - the good music!) and broadcast local football and netball. And golf I m getting ready to play again. 7. What do you aspire to achieve in life? My ambitions now are to live as long as possible with Lesley (we have already achieved our 50th anniversary) and really enjoy my family. We have two beautiful granddaughters. I want to watch them grow up and wonder if they will become the same handful as their mother was! 8. Has having MDS forever changed you? Even though I ve lived a life where I never argue with people, I m a more mellow person now. And even though I ve always appreciated people and my family, it s heightened that. Like the lovely spot where we live amongst the hills I appreciate it more now than when we first came here seven years ago. 9. Where are you at now in terms of your illness? I feel blessed and am a very lucky man as the azacitidine has worked wonders for me. I have just completed the 33rd cycle and my last blood transfusion was in February I am in remission from leukaemia, my blood counts are consistent and in a good range scale. I am now achieving most of my targets. I am walking four km on a consistent basis, doing many of the chores that I was unable to do, am back presenting a weekly music program on community radio and on the broadcasting team for local football. 10. Do you have any special advice for others? Everybody has told me I must be positive, but what does that really mean? I give it my own meaning. I am now a positive doer, which means as soon as I think I should do something, I work out how to do it, set my target and go for it. This has helped me tremendously and every time I achieve something, no matter how small, it gives me confidence to keep setting my targets and moving forward. I set targets I feel are achievable and some of those are to always have a smile; show my appreciation for the support I receive; never complain; retain my sense of humour; and start with small tasks and work up. I also believe when dealing with close friends and family who may find it difficult to know how to relate to you, that if you explain to them what you are going through, they feel more comfortable around you. They will never know or understand if you don t educate them, so I say: I ve got MDS, it s a blood cancer, but I m managing it, and I ll be okay. 11. What are you most looking forward to right now? This is a target my haematologist and I set at the beginning. My first symptoms began on the golf course three years ago and I haven t played golf since. As soon as we get good weather, I ll polish the clubs and challenge the local course it s as flat as a tack! 6 Leukaemia Foundation MDS News - January 2014

7 My Journey Continued from page 1... He now considers himself a waiting room professional. While the treatment time is just 10 to 15 minutes, it takes him half a day to travel to and from the clinic by bus and wait while the azacitidine is made up something he does on five consecutive days every four weeks*. I get a mild reaction but you never hear me complain, he said. The week of treatment and the week after he gets knocked around a bit but feels pretty good in weeks three and four. I had to stop mowing the lawn for a year but I m back doing that now, said Trevor, who also is getting back into music, after a break of 10 years. He used to play the organ in church when he and his wife of 42 years, Kristene, lived in Sydney, and only recently retired as a piano tuner. While the Turnells have a piano and a pianola at home, it was a new digital organ that inspired Trevor to play again. Now he plays the organ every day, sometimes twice a day, mainly old stuff from the 60s and he s been digging through his collection of sheet music bought 40 years ago when they cost three shillings each. I just get lost in the music and it gets the hands and feet moving. Trevor and Kristene met through the church when he was 18. We re homebodies and Kristene s just there for me. If I get grumpy and short- tempered and don t want to talk during the I just take it as it comes and don t worry about what could happen. treatment, she takes it. And she let me buy the organ and it wasn t cheap! he said with a smile. Two other vital members of the Turnell household are their dogs Mollie and Bella. Mollie is my nurse 24 hours a day, seven days a week, and she comes complete with a white coat. She always sits beside me. At the end of last year Trevor found out about the MDS telephone forums while he was on the Leukaemia Foundation s website. Since then, he s only missed one of the monthly forums, due to his treatment, and Kristene listens in too, on the extension line. And, as men don t tend to talk about their cancer experience, Kristene said she finds the forum interesting and informative. For Trevor, hearing about other people s experiences reinforces the normalcy of what he is going through. It s shown me that MDS is a big disease and not everyone is the same. In some ways I m doing so well I m a success story and a protégé of Vidaza. I take life day by day. In the beginning, I was worried financially. Then the clinical trial came along and that took the worry away. I just take it as it comes and don t worry about what could happen. I m optimistic because of the way my bloods are stable. Through this journey we have faith in God and thank our family and friends for their continued prayer support. * Another protocol for the trial was seven days every four weeks. Trevor with Mollie, his 24/7 nurse, and Kristene with Bella

8 Education & Support diary dates NEW SOUTH WALES & ACT Sydney Metro 20 Jan 10am-12pm St George Blood Cancer Education & Support Group (also 24 Mar; 26 May) 29 Jan 11am-1pm pm Westmead Blood Cancer Education & Support Group (also 26 Feb; 26 Mar; 30 Apr; 28 May) Randwick Blood Cancer Education & Support Group (also 26 Mar; 28 May) 6 Feb 2-4pm Penrith Blood Cancer Education & Support Group 14 Feb 10am-12pm 10am-12pm (also 6 Mar; 6 Apr; 6 May) Concord Blood Cancer Education & Support Group (also 11 Apr; 9 May) Liverpool Blood Cancer Education & Support Group (also 14 Mar; 11 Apr; 9 May) 27 Feb 2-4pm Randwick/St George Blood Cancer Education & Support Group (also 28 Apr) 28 Feb 10am-12pm Artarmon Blood Cancer Education & Support Group (also 14 Mar; 28 Mar; 30 May) Far North Coast 17 Jan 11am-1pm Tweed Heads Blood Cancer Education & Support Cancer Information Centre (also 21 Feb; 23 Mar; 18 Apr; 16 May) 22 Feb pm Lismore Blood Cancer Education and Support Group (also 7 Mar - Young Mums; 26 Apr; 16 May) 26 Feb 11am-1pm Tumbulgum Blood Cancer Education & Support Group (also 23 Apr) New England 3 Mar pm Armidale Blood Cancer Education & Support Group (also 7 Apr; 5 May) 5 Mar 2-4pm Tamworth Blood Cancer Education & Support Group (also 2 Apr; 7 May) Mid North Coast 20 Jan 1-3pm Port Macquarie Blood Cancer Education & Support Group (also 17 Feb; 17 Mar; 21 Apr; 19 May) 23 Jan 10.30am-12.30pm Coffs Harbour Blood Cancer Education & Support (also 27 Feb; 27 Mar; 24 Apr; 22 May) Hunter 16 Jan 11am-12pm Mudgee Blood Cancer Support Group (also 13 Mar) 4 Feb 10am-12pm Newcastle Blood Cancer Support Group (also 4 Mar; 1 Apr) 11 Feb 11am-1pm Muswellbrook Blood Cancer Support Group (also 8 Apr) 18 Feb 11.30am-1pm Taree Blood Cancer Support Group (also 13 May) 25 Feb 10.30am-12pm Port Stephens Blood Cancer Education and Support Group (also 6 May) Central Coast 25 Jan pm Wyong Blood Cancer Education & Support Group (also 25 Mar; 29 Apr; 27 May) 27 Feb am Erina Blood Cancer Education & Support Group (also 24 Apr; 29 May) 27 Mar am Gosford Blood Cancer Education & Support Group Illawarra & Shoalhaven 4 Feb 10am-12pm Wollongong Blood Cancer Education & Support Group (also 4 Mar; 1 Apr; 6 May) Western & Far West 10 Jan 11am-12pm Bathurst Blood Cancer Education & Support Group (also 7 Mar) 15 Jan 11am-12pm Parkes Blood Cancer Education & Support Group (also 12 Mar) 4 Feb 10.30am-12pm Orange Blood Cancer Education & Support Group (also 4 Mar; 1 Apr) 5 Feb 10.30am-12pm Dubbo Blood Cancer Education & Support Group (also 5 Mar; 2 Apr) 6 Feb am Cobar Blood Cancer Education & Support Group (also 3 Apr) 7 Feb 10.30am-12pm Broken Hill Blood Cancer Education & Support Group (also 4 Apr) 12 Feb 11am-12pm Cowra Blood Cancer Education & Support Group (also 9 Apr) Riverina 30 Jan 10.30am-12pm Wagga Wagga Blood Cancer Support Group 25 Feb 10.30am-12pm Griffith Blood Cancer Education & Support Group 17 Mar 11am-12.30pm Albury Blood Cancer Support Group VICTORIA Barwon South West 6 Feb am Geelong Blood Cancer Support Group (also 6 Mar) 12 Feb pm Colac Blood Cancer Support Group (also 9 Apr) 18 Mar pm Hamilton Blood Cancer Support Group 19 Mar pm Warrnambool Blood Cancer Support Group 3 Apr 10am-12pm Geelong Blood Cancer Education Forum Gippsland 8 Jan pm South Gippsland Blood Cancer Education Program, Leongatha (also 12 Feb; 12 Mar) 15 Jan pm Central Gippsland Blood Cancer Education Program, Traralgon (also 19 Feb; 19 Mar) 16 Jan pm West Gippsland Blood Cancer Education Program, Warragul (also 20 Feb; 20 Mar) 10 Feb 10.30am-12pm East Gippsland Blood Cancer Education Program, Bairnsdale 17 Feb pm Casey Cardinia Blood Cancer Education Program, Berwick Grampians 20 Feb 10am-12pm Ballarat Blood Cancer Support Group (also 17 Apr) 25 Mar 11am-1pm Horsham Blood Cancer Support Group Loddon/Mallee 12 Feb 10am-12pm Bendigo General Blood Cancer Group 17 Feb pm Mildura Blood Cancer Support Group (also 21 Apr) WESTERN AUSTRALIA Perth Metro 11 Feb 10am-12pm Perth Education Session (also 11 Mar, 8 Apr; 13 May) 17 Feb pm Perth Blood Cancer Support Network (also 17 Mar; 14 Apr; 19 May) 24 Feb pm Bassendean Leukaemia Foundation Accommodation Support Group (also 25 Mar; 28 Apr; 27 May) Bunbury 19 Feb 10.30am-12pm Bunbury Regional Education (also 19 Mar; 16 Apr; 21 May) Peel 20 Feb 10.30am-12pm Mandurah Blood Cancer Support Network (also 20 Mar; 17 Apr; 22 May) 28 Feb pm Port Kennedy Blood Cancer Support Program (also 28 Mar; 23 May) SOUTH AUSTRALIA 20 Jan 10am-12pm Barossa Support Group (also 31 Mar; 26 May) 28 Jan am Men s Group (also 25 Mar; 27 May) 3 Feb am CML Support Group (also 7 Apr) 10 Feb am MDS Support Group (also 14 Apr) 13 Feb 10.30am-12pm Southern Support Group, Reynella (also 13 Mar; 10 Apr; 8 May) 15 Feb 9.30am-3.30pm Patient Education Day 25 Feb am Northern Support Group (also 18 Mar; 15 Apr; 20 May) 26 Feb 11am-12pm Strathalbyn Support Group, Cafe Rufino (also 19 Mar, 16 Apr) 28 Feb 10.30am-12pm RAH Carers Support Group, Aroma Café (also 28 Mar; 30 May) northern territory 6 Feb am Blood Cancer Support Group, Coconut Grove (also 6 Mar; 3 Apr) The 2014 program of support and information sessions for Victoria, Tasmania and Queensland had not been finalised as this issue went to print. For this information, call MDS telephone forums are held regularly for patients in regional and remote areas, and metropolitan patients who have difficulty accessing the Leukaemia Foundation s regular education activities. Contact Samantha Soggee on or mds@leukaemia.org.au for the dates, to find out more, and to register. OUR VISION TO CURE AND MISSION TO CARE for you The Leukaemia Foundation is the peak body for blood cancer in Australia, To find out more about how we can help you: funding research and providing free services to support people with Freecall leukaemia, lymphoma, myeloma and related blood disorders. info@leukaemia.org.au Our free services include emotional support, accommodation, transportation and practical assistance. We also fund research into Mail: GPO Box 9954 in your capital city cures and better treatments. Website: We receive no ongoing government funding and rely on the continuous support of individuals and corporate partners to provide our services and to fund our National Research Program. 8 Leukaemia Foundation MDS News - January 2014 Disclaimer: No person should rely on the contents of this publication without first obtaining advice from their treating specialist.