APRIL 2015

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Myeloma treatments: the now and the new is the focus of National Myeloma Day (NMD) and two international myeloma experts will present the latest information on myeloma research and clinical trials.

Dr Maria-Victoria Mateos, a haematologist from the University Hospital of Salamanca in Spain, will speak at NMD events in Sydney and Melbourne, and Dr Joseph Mikhael, a consultant haematologist at Mayo Clinic, Arizona, in the U.S. will be involved in the Perth event.

There has been a huge expansion in therapies used for myeloma, compared to 10 years ago, according to the Leukaemia Foundation’s national myeloma co-ordinator, Kaye Hose.

“Our aim for National Myeloma Day 2015 is to highlight the most up-to-date treatments, explore different treatment options and research developments for myeloma,” said Kaye.

The objectives of this special day – on Wednesday 20 May – are to:

• bring together and support people who are affected by myeloma;

• provide information on current and developing treatments;

• highlight the challenges in accessing new myeloma treatments for myeloma; and

• provide information and assistance on where people with myeloma, their families and friends, can source further support to help meet their educational and psychosocial needs.

This year a ‘closed’ myeloma Facebook page will be launched as part of NMD and as an outcome following the Disease- -Specific Facebook Forums Evaluation Survey. Conducted in November 2014 to assess interest and participation in LF-established disease-specific Facebook Groups, the feedback was overwhelmingly in favour of such an initiative.

A new DVD, Myeloma – A guide for patients and families, will be released as part of NMD. It features haematologist, Dr Hang Quach, myeloma clinical nurse consultant, Tracy King, and exercise physiologist, Morgan Atkinson, and six people living with myeloma who share their own personal experiences in this empowering DVD that provides the most current information on the management of myeloma.

The new updated information booklet, Myeloma – A guide for patients and families, will be launched across Australia during NMD 2015.

FOR PEOPLE WITH myELOmA & THEIR FAmILIESMYELOMA

NEWS

Myeloma aware

LEUKAEM

IA F

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IN THIS ISSUE ASH wrap-up ..................................................................... 3My journey – Sandra Milton ...........................................4/5LF funded myeloma research ............................................. 611Qs – Dr Maria-Victoria Mateos ....................................... 7Education & Support .......................................................... 8

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National Myeloma Day international guest speaker, Dr Joseph Mikhael.

Read the Eleven Questions interview with international myeloma expert and National Myeloma Day guest speaker, Dr Maria-Victoria Mateos, on page 7.

Another highlight of NMD is a national webinar that means the Sydney NMD event will be shared across Australia.

The Leukaemia Foundation has a calendar of NMD events that is featured on page 5, so you can see what is happening in your region and we encourage you to get involved.

NATIONAL MYELOMA DAY – MAY 20

2 Leukaemia Foundation Myeloma News - April 2015

Just Briefly

1800 620 420 www.leukaemia.org.au

WHAT CAUSES MYELOMA? Myeloma, which makes up around a 12.5% of all blood cancer diagnoses, is a rare cancer and the causes of myeloma remain unknown.

An epidemiological study, called The Forgotten Cancers Project, is focusing on the causes of less common cancers, including myeloma, which have not been studied extensively.

The aim of the study, which is being conducted by the Cancer Council of Victoria, is to understand the roles of genes, lifestyle and early life environment as causes of less commonly occurring cancers, such as myeloma.

The study is collecting a broad range of health and lifestyle information from people diagnosed with myeloma and the other blood cancers. The same sort of information also will be collected from a family member of each participant.

It is a case-control study because information from people diagnosed with myeloma who take part will be compared with information from people who are not affected by this disease.

The aim being to identify any differences between the people with myeloma and the people without, to see whether the differences may be associated with development of cancer.

The study is seeking a total of 30,000 participants (15,000 cases + 15,000 without cancer). People who were 18 years or older when diagnosed can register to take part in the research.

The Leukaemia Foundation supports this research project and encourages people with myeloma to take part.

According to the Foundation’s Head of Blood Cancer Support, Anthony Steele, it is important for blood cancers to be well represented in the study.

“If we can learn the risk factors of myeloma, either genetic or lifestyle, we may be able to prevent it occurring in future generations,” Anthony said.

“We believe it is in the best interests of those with myeloma to take part in this study. The more people who take part, the stronger the research will be.”

To take part in the study, phone 1800 068 289 or email forgottencancers@cancervic.org.au or visit www.forgottencancers.com.au. Mention that the Leukaemia Foundation recommended this study to you.

How you can get involved in National Myeloma Day

1. Promote myeloma awareness in your community and recognise National Myeloma Day by buying a commemorative ‘Myeloma Aware’ badge for $5 or our ‘Myeloma’ ribbons for a gold donation. These can be worn by people with myeloma, as well as their family and friends, and are available from the Leukaemia Foundation office in your state. The proceeds from badge sales support our National Research Program and extensive support services provided at no cost to people with myeloma.

2. Meet and support others with myeloma by attending a National Myeloma Day event during May. If you can’t physically attend any of the range of planned activities, consider registering for the Myeloma Telephone Forum on May 2.

3. Increase other people’s general knowledge and understanding about myeloma. Tell at least one person, and possibly more, about this incurable blood cancer during the month of May.

To join the Leukaemia Foundation in promoting and recognising National Myeloma Day – by hosting your own event or speaking at a Foundation event – please contact Kaye Hose: myeloma@leukaemia.org.au.

READERSHIP SURVEY To ensure our range of disease-specific newsletters, including Myeloma News, continues to meet the needs of people with blood cancer, the Leukaemia Foundation is conducting a national survey.

We are seeking your feedback and encourage you to take part in the readership survey: http://surveymonkey.com/s/Newsletter_Readership_Survey.

Continued from page 1

MYELOMA HIGHLIGHTS OF ASH 2014 The Leukaemia Foundation’s national myeloma coordinator, Kaye Hose, was among the 20,000+ haematology professionals at the American Society of Hematology (ASH) annual conference in San Francisco (U.S.) last December. Renowned as perhaps the world’s largest and most respected haematology meeting, here are key myeloma research and treatment highlights.

Carfilzomib (Kyprolis®)

There was a major focus on carfilzomib – a new second-generation proteasome inhibitor (same family as bortezomib). Early trials show less peripheral neuropathy and good responses in people who had previously received a lot of different treatments (for relapsed myeloma). There was an update on results from the ongoing Phase III ASPIRE trial, which is comparing carfilzomib, lenalidomide (Revlimid®) and dexamethasone to lenalidomide and dexamethasone in relapsed myeloma patients. Updated data from the trial showed 87% of patients in the carfilzomib-containing arm of the trial responded to treatment compared to 67% in the other two-drug arm. Based on this data, experts see carfilzomib as a promising drug in the treatment of relapsed myeloma. This trial may be pivotal in paving the use of carfilzomib in the clinical setting. The results of this trial also indicated carfilzomib may have a future role in the maintenance setting.

Monoclonal antibodies

A range of data was presented on monoclonal antibodies as potential treatments in myeloma. Monoclonal antibodies are designed to recognise and attach to specific proteins on the surface of cancer cells, to help the immune system recognise the cells as foreign, and signalling for the immune system to kill the cancer cells. Positive data continues to emerge on the monoclonal antibody daratumumab, which targets a specific protein called CD38. In a trial, data shows 87% of relapsed myeloma patients participating achieved a partial response or better when treated with the combination – daratumumab, lenalidomide and dexamethasone. Future studies will use daratumumab in the frontline setting. SAR-650984 is another monoclonal antibody that targets CD38. In combination with lenalidomide and dexamethasone, SAR-650984 showed further studies were needed.

Ibrutinib

Ibrutinib – a proven breakthrough therapy for chronic lymphocytic leukemia and mantle cell lymphoma – is a first-in-class, oral inhibitor of Bruton’s tyrosine kinase (BTK), an essential enzyme that is overexpressed in myeloma cells. At ASH, data was presented on this entirely new type of drug in myeloma. It shows promise as a monotherapy (used on its own) and combined with dexamethasone in relapsed/refractory patients who have had an average of four prior treatments. Preclinical studies have shown ibrutinib improves the activity of both bortezomib and lenalidomide.

Ixazomib

Phase II clinical data was presented on the first oral proteasome inhibitor – ixazomib (in the same group of drugs as bortezomib [Velcade®] and carfilzomib) combined with lenalidomide and dexamethasone as induction treatment,

followed by ixazomib maintenance in people newly diagnosed with myeloma. Following a 90% partial response or better, more than one-third of patients had an improved quality of response during maintenance therapy with the single agent. Ixazomib maintenance was well tolerated, with limited onset of new side-effects. Impressive results were seen with good responses after two years in the non-transplant setting.

Panobinostat

Results from ongoing clinical trials involving panobinostat (originally known as LBH589 and in the group of drugs known as histone deacetylase [HDAC] inhibitors) highlighted that it shows promise in the future treatment of myeloma patients. Myeloma UK presented Phase I data from MUK six – a multi-centre Phase I/IIa trial assessing panobinostat in combination with bortezomib, thalidomide and dexamethasone (VTD) followed by up to one year of panobinostat maintenance. Early results found panobinostat and VTD to be a safe, well tolerated and potentially effective treatment option for myeloma. The U.S. Food and Drug Administration approved panobinostat in February 2015, which is marketed as Farydak®, for relapsed and refractory myeloma.

Pomalidomde

A poster presented on the MM-010 trial – a study of pomalidomide and low-dose dexamethasone – further supports growing evidence that this combination be a standard treatment option for people with relapsed/refractory myeloma.

Genetics and immunotherapy

Researchers from The Institute of Cancer Research (London) presented results from a large myeloma genome sequencing project on samples from the UK-based Myeloma XI trial. Mutations were discovered in a number of genes and, for the first time, these mutations were associated with clinical outcomes.

The International Myeloma Foundation’s, Susie Novis, with Kaye Hose at ASH 2014.

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Research Matters

4 1800 620 420 www.leukaemia.org.auLeukaemia Foundation Myeloma News - April 2015

My Journey

This could mean that testing for clinically relevant mutations may enter clinical practice and allow doctors to prescribe more personalised treatment for myeloma patients, based on their genetic profile rather than the current ‘one-size fits all’ approach.

A novel immunotherapeutic approach to treating cancer known as chimeric antigen receptor T-cell (CAR-T) treatment was initially used to treat leukaemia. Dr Carl June of the University of Pennsylvania presented initial results of an early-phase trial testing the approach in myeloma. The first step in CAR-T treatment involves harvesting immune system cells, known as T-cells, from the patient. The T-cells are then treated in a

way that genetically alters them so that, when the cells are re-infused into the patient, they attack and kill the patient’s myeloma cells. Four advanced-stage myeloma patients treated with a CAR-T treatment known as CTL019 all achieved at least a very good partial response, and at least two patients have achieved a stringent complete response.

None of these new drug combinations have yet received PBS approval. Please ask your haematologist if you are able to access one of these trials. For more information: http://www.anzctr.org.au or https://clinicaltrials.gov.

When Sandra Milton, of Wodonga (Victoria), was diagnosed with myeloma, she didn’t think she’d see her children grow up, let alone meet her grandchildren or celebrate her 60th birthday. That was 18 years ago. She turns 62 this year, her children are adults, she has four grandchildren, and this is her 45th year working full-time as a registered nurse in Mental Health at Albury Base Hospital. Here’s her personal account.

“I was diagnosed with myeloma in 1997 and was very upset at the time. It was several months after my husband had died of a heart attack and six weeks after I’d had a kidney removed.

“I was 44 and my three children were about to hit their teenage years. Life was about to get very interesting. I was very unsure of what was going to happen and scared about what may lie ahead.

“Having a young family was always on my mind. I had to have things firmly in place for my children to be cared for in case something happened to me too, which was a horrible thought. I saw a solicitor and my will set out arrangements for my brother and his wife to care for the children and that they would be financially okay.

“I’ve had a lot of chemotherapy, radiation, have taken part in two clinical trials, and had two stem cell transplants – in 1999 and 2011. I’ve been ‘smouldering’ since my first transplant. My paraprotein is 19 so I’m about to go back into treatment.

“I’ve found the easiest way to get through (having myeloma) is a positive attitude and setting myself small goals – to see my youngest son turn 18, meet my first grandchild, care for my elderly mother, and now I want to reach 50 years of nursing.

“My family is a huge aspect of my persistence to fight this – they had no father, so I was determined to beat it, and my Catholic faith also is a huge factor in my positivity and inspiration.

“My life is good, however, I get very unsettled at times. It’s always in the back of mind that I can deteriorate at any time, which sometimes makes me feel like I’m living on eggshells. Myeloma has definitely made me stronger. There is nothing life can throw at me that I feel I cannot face now. I don’t allow my illness to dominate my life.

“I can be very stubborn, which has its pros and cons. I do not like asking for help, so this challenged me, as I desperately needed it. My family was a huge support. My parents were always there to help me and my brother and wife were amazing to me and to my children. I had support from many close friends and work colleagues. Work kept me focused with normality, which was very important to me.

“When my oncologist came to the area, I was one of his first patients. He’s done the journey with me. I wouldn’t be where I am today if not for him looking after me.

“During treatment, it was very difficult travelling to Melbourne

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BEING POSITIVE AND GOAL SETTING HELPS SANDRA

NEW SOUTH WALES & ACT1 May 9am-3pm

9am-3pm 10am-2pm 9am-3pm

NMD seminar, Sydney (Madeleine Thompson 02 9902 2208)NMD seminar – webcast, Tamworth (Michelle Andrews 0481 007 446)NMD seminar – webcast, Albury (Carmel Duck 0412 017 716)NMD seminar – webcast, Dubbo (Emma Fleming 0412 706 785)

12 May 10am-12pm NMD seminar, Mayfield (Vicki Emmeriks 02 4967 2873)

18 May 9am-3pm 10:30am- 1:30pm

NMD seminar, Gosford. Speakers: Dr Forsyth & Dr Wylie, haematologists; Anna Coughlan, exercise physiology; Sue McConaghey, clinical psychologist (Kellie Cook 02 4320 9636) NMD seminar, Canberra. Speakers: Dr Anna Burger, psychiatrist; Ellie Law, clinical psychologist; Deidre Mathis, haematology care coordinator

SOUTH AUSTRALIA20 May 9.30am-

2.30pmNMD seminar, Adelaide. Speakers: Dr Oi Lin Lee & Prof. Miles Prince, haematologists; Dr Pravin Hissaria, immunologist; Beverleigh Quested, senior transfusion nurse educator (Peter Diamond 08 8169 6030)

VICTORIA2 May 9am-3.30pm National Myeloma Day, Melbourne

TASMANIA13 May 11am-1.30pm NMD seminar, Hobart. Speakers: Prof. Ray Lowenthal, haematologist;

Kaye Hose, national myeloma coordinator (Jane Anderson 03 6231 0620)21 May 11.30am

-1.30pmNMD seminar, Launceston. Speaker: Kaye Hose, national myeloma coordinator (Jo Beams/Amber Laidler 03 6341 8413)

WESTERN AUSTRALIA1 May TBC

TBCNMD seminar – webcast, Perth (Carol 0412 297 775) NMD seminar – webcast, Bunbury (Julie 0401 134 282)

28 May 2-7pm NMD seminar, Perth. Speakers: haematologists, Dr Bradley Augustson & Dr Joseph Mikhael; Michael Kane, pharmacist; Krys Hiscock, clinical researcher coordinator (Carol 0412 297 775)

qUEENSLANd20 May 11.30am-2pm NMD seminar, Brisbane. Speaker, Dr Robert Hensen (Marian Marshall

07 3055 8233)

5 1800 620 420 www.leukaemia.org.au

and back twice a week for one of the clinical trials; that was very taxing on my body. The two bone marrow transplants also were done in Melbourne. This was hard for my family members to be with me all the time, as we lived three hours away. The rest of my treatment was done locally, for which I was very grateful.

“My health is very unstable at the moment, which is challenging. I am in the process of more testing after some increase in my paraprotein level. I’m staying as positive as I can. I have been fighting this now for 18 years. All those years ago, I never thought I would see my children grow up, let alone my 60th birthday, which I celebrated two years ago. I am so fortunate

to be here today surrounded by so many family and friends. I am proud of my fight so far and hope to continue to march forward.

“My main advice to others would be to say that positivity is a huge winner. Having a positive mind is very important. Set small achievable goals, which can keep you going and look forward to them. Also, gain support from family and friends.

“I love to travel and have been on three big overseas trips during my

illness.

I am looking forward to planning my next big trip, probably to Europe and the UK in a couple of years. I’d like to do a trip down the River Rhine again.

“But most of all, I just want to be with my loved ones, spending time with my grandchildren, to have a happy life and most importantly to enjoy a quality of life.

BEING POSITIVE AND GOAL SETTING HELPS SANDRA

LF INVESTS ANOTHER $4M IN RESEARCH This year, the Leukaemia Foundation is investing almost $4 million in 14 promising blood cancer research projects in ‘the hottest areas of research in haematology at the moment’.

Announcement of the 2015 round of grants means the Foundation’s National Research Program now has 49 research projects underway at leading Australian research institutes.

The Foundation’s Head of Research and Advocacy, Dr Anna Williamson, said this new funding was across the whole blood spectrum – lymphoma, myeloma and the chronic and acute leukaemias.

“There are studies in some of the most important and influential areas of research – epigenetics (the non-DNA component of the cell), CAR T-cells and immunotherapeutic mechanisms,” said Dr Williamson.

“This means our researchers are working at the frontiers of medicine and puts us right on the mark with what’s happening internationally, as highlighted at the world’s largest annual conference of the American Society of Hematology last December. ”

Understanding how myeloma develops is the focus of two of our latest 14 research projects.

Dr Pasquale Fedele received a PhD (clinical) scholarship (a total of $180,000 over three years / 2015-2017): Investigating the role of BLIMP1/PRDM1 and XBP1 as potential tumour suppressors in multiple myeloma, and Ankit Dutta was granted a PhD scholarship ($120,000 / 2015-2017): A genomic approach to understanding clonal evolution and disease transition in myeloma.

Read the myeloma research project stories on page 6 and for information about all 14 new research awards, visit: www.leukaemia.org.au.

NATIONAL MYELOMA DAY 2015 EVENTS

6 1800 620 420 www.leukaemia.org.auLeukaemia Foundation Myeloma News - April 2015

Research Matters

UNDERSTANDING HOW MYELOMA DEVELOPS Dr Pasquale Fedele of Victoria’s Walter and Eliza Hall Institute of Medical Research (WEHI) has been granted a Leukaemia Foundation PhD (Clinical) Scholarship to better understand how myeloma develops.

Dr Fedele is studying two genes – PRDM1, and X-box binding protein 1 (XBP1). Both genes are important for normal plasma cell development and function.

Plasma cells are highly specialised cells that produce antibodies, helping the body’s immune system to recognise and destroy

germs when they invade the body. However, damage to the DNA of plasma cells can lead to myeloma.

“The aim of this project is to understand how PRDM1 and XBP1 control normal plasma cells as well as how mutations to these genes contribute to myeloma development,” Dr Fedele said.

“We suspect that the loss of either of these genes may play an important role in myeloma cells becoming resistant to treatment with an important class of medications called proteasome inhibitors, such as bortezomib (Velcade®).

“If we can understand the potential effects of these mutations, it will help us better treat myeloma with combination therapies.”

In 2011, a research team (Chapman et al.) used next-generation sequencing to compare the DNA from 38 myeloma tumours with patients’ normal DNA. The team discovered 11 genes that are commonly mutated in myeloma and one of these genes was PRDM1.

The PRDM1 gene produces a protein known as BLIMP-1, which is a ‘master regulator’ of plasma cell development.

Dr Fedele is continuing the work of his supervisor, WEHI Molecular Immunology Division Head, Professor Stephen Nutt, in looking at the role of BLIMP-1 in myeloma.

Although not one of the 11 commonly mutated genes, the XBP1 gene was highlighted as a gene of interest by the research team. This gene produces the XBP1 protein, which is essential for normal antibody production in plasma cells.

IDENTIFYING GENETIC CHANGES ASSOCIATED WITH MYELOMA In almost every case, the incurable blood cancer, myeloma, develops from a benign disease known as monoclonal gammopathy of undetermined significance (MGUS).

Researchers at the University of Adelaide believe complex genetic changes drive MGUS to develop into myeloma.

Ankit Dutta has been granted a PhD scholarship by the Leukaemia Foundation for his research identifying important genetic changes involved in the transition of MGUS to myeloma.

He is based at the South Australian Health and Medical Research Institute (SAHMRI), in the Myeloma Research Laboratory, under the supervision of Professor Andrew Zannettino and Dr Duncan Hewett.

About 3% of the Australian population, aged over 50, (more than 200,000 people) have MGUS. However, with the disease causing no symptoms, it remains untreated. Each year, people with MGUS have a 1% risk of progressing to myeloma.

To date, the genetic factors driving the progression from asymptomatic MGUS to myeloma are unknown.

Ankit is using next-generation sequencing methods to analyse a rare collection of paired bone marrow samples; taken from 25 patients when they were first diagnosed with MGUS and then later when they developed myeloma.

“I’m looking for gene expression changes critical in causing MGUS to develop into myeloma. This information will help us

identify biomarkers that can predict which people are prone to developing myeloma,” Ankit said.

“Ultimately, we are hoping to develop new treatments to delay or cure the disease at the MGUS stage.”

Dr Pasquale Fedele. (Photo: WEHI)

Ankit Dutta.

7 1800 620 420 www.leukaemia.org.au

Research Matters

ELEVEN QUESTIONS – DR MARIA-VICTORIA MATEOS

Clinician physician and associate professor of hematology, University Hospital of Salamanca (Spain), Dr Mateos coordinates and collaborates in the design and development of all clinical trials in the Hematology Department. Her areas of interest include myeloma, the biology of plasma cells and new drug development.

1. How long have you been researching myeloma?

Since 1998, when I finished my residence in haematology and got my PhD doing molecular biology research in myeloma, monoclonal gammopathy and smoldering myeloma. Later, I moved towards clinical research, always focusing on myeloma, especially smoldering, or asymptomatic myeloma, and the treatment of non-transplant eligible patients.

2. Why does myeloma interest you?

My mentor, Professor San Miguel, offered me my PhD in myeloma and later I collaborated with him in the first clinical trials with new agents for myeloma patients. In 2002 we included our first patient in a trial to receive bortezomib. With new agents emerging, it is impossible not to be interested in myeloma.

3. How many people with myeloma does your treatment centre treat in a year?

Salamanca is a small city and we receive no more than 20 newly diagnosed myeloma patients per year. However, as a reference centre for our region of 2.5 million inhabitants, approximately 70 to 80 myeloma patients visit our hospital every week.

4. How have patterns of incidence and modes of diagnosis changed in recent years?

Now everyone has an annual review and total proteins and albumin tests are routine. If total proteins are elevated, a serum protein electrophoresis test is automatically performed for the diagnosis of new plasma cell disorders. However, most of them are asymptomatic plasma cell disorders. Compared to the past, there is a trend to diagnose myeloma in younger people (40-50 years).

5. What are the most significant findings/developments in the treatment of myeloma in the last decade?

There have been two significant findings – advances in the knowledge of the biology of the disease, and the introduction of the first generation proteasome inhibitors and immunomodulatory drugs. The introduction of bortezomib and thalidomide significantly prolonged progression-free survival and the overall survival of myeloma patients. This benefit is increasing as more new therapies emerge.

6. What areas of myeloma research have you been involved in?

At the beginning, I was involved in the biology of the disease and studied the methylation of some genes involved in the development of monoclonal gammopathies and its progression to smouldering and symptomatic myeloma. Later, I moved into clinical research and my first contribution was to conduct the Phase I trial – bortezomib combined with melphalan and prednisone (VMP) in 60 patients. The complete response rate of 30% was remarkable at that time and was used as support for the VISTA trial.

7. Your research has investigated drugs that are now the backbone of myeloma therapy. How are these drugs utilised in current practice?

Following the VMP and VISTA trials, our research focused on the optimisation of the bortezomib administration

especially for elderly patients, moving from the biweekly to weekly administration, and prolonging treatment duration through bortezomib maintenance therapy. Now, most newly diagnosed myeloma patients receive bortezomib-based combinations in the upfront setting and patients who are not transplant-eligible, are usually given bortezomib weekly, to improve tolerability.

8. Do you think we may find a cure for myeloma in the future?

I think so, but we have to select the patients we can cure. Our group is treating myeloma in the early stages of the disease, before myeloma-defining events appear, and our objective is to cure some patients. Standard risk patients is a subgroup of symptomatic myeloma patients we can probably offer a cure in the future. However, those with high-risk features remain a poor subgroup

and new strategies are necessary to improve their outcomes.

9. What are the most promising myeloma clinical trials currently underway?

There are many promising clinical trials underway in the world. The second generation of proteasome inhibitors and immunomodulatory drugs are exciting because they can overcome resistance to first generation drugs. Monoclonal antibodies are promising and, in

fact, anti-CD38 monoclonal antibodies are probably the most promising agents in myeloma. Daratumumab is one that has been widely developed and shown to be effective as a single

Dr Maria-Victoria Mateos – who is speaking at the National Myeloma Day events in Sydney and Melbourne.

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agent in myeloma patients who have received a lot of previous treatment. In the future, daratumumab will be part of the different regimens used in myeloma treatment.

10. What are the major issues for people with myeloma?

One of the major issues is their quality of life. Approximately 80% of myeloma patients have bone disease, which results in bone pain and poor quality of life. In addition, treatment is sometimes associated with side-effects that also interfere with the quality of life.

11. How can people with myeloma live well after diagnosis?

It is important for them to receive adequate information about the disease and prognostic factors. Patients need to know the treatment schedule – how long the treatment will be, which agents they will receive, the side-effects, as well as how the doctor will monitor their disease response. From my point of view, patients have to be correctly informed for them to actively participate in the treatment process. It is also very important for people with myeloma to have the ability to share their experiences with other patients and to participate in patient seminars.

8Disclaimer: No person should rely on the contents of this publication without first obtaining advice from their treating specialist. This newsletter has been produced by an unrestricted educational grant from Janssen and Celgene.

Education & SupportVICTORIA

Melbourne Metro

30 Apr 10.30am-12pm Caring for the Carer, Heidelberg

14 May 10.15-11.45am Bone Marrow & Stem Cell Transplant Support Group, Hawthorn17 Jun 10.30am-12pm Eastern Suburbs Blood Cancer Support Group, Croydon (also 16 Sep)7 Jul 10.15-11.45am Myeloma Support Group, Carlton North (also 13 Oct)Mornington13 Apr 2-3.30pm Frankston Myeloma Support Group (also 13 Jul, 12 Oct)16 Apr 10am-12pm Geelong Blood Cancer Support Group (also 16 Jun 3.30-5pm, 14 Jul 5.30-7pm)29 Apr 10.30am-12pm Mornington Blood Cancer Support Group (also 29 Jul)Barwon South West7 Apr 2.30-3.30pm Hamilton Blood Cancer Support Group (also 7 Jul, 22 Sep)8 Apr 1.30-3pm Warrnambool Blood Cancer Support Group (also 8 Jul, 23 Sep)13 May 1.30-3pm Colac Support Group (also 26 Aug)Gippsland1 Apr 10.30am-12pm East Gippsland Getting my Financial Life in Order seminar, Bairnsdale9 Apr 2-3.30pm South Gippsland Blood Cancer Support Group, Foster15 Apr 1.30-3pm Central Gippsland Blood Cancer Support Group, Traralgon16 Apr 1.30-3pm West Gippsland Blood Cancer Support Group, WarragulGrampians7 Apr 10am-12pm Ballarat Myeloma Support Group (also 2 Jun, 4 Aug, 6 Oct)30 Apr 10-11.30am Getting my Financial Life in Order seminar, Ballarat2 Jul 10-11.30am Ballarat Carers Support GroupHume9 Apr 2-4pm Hume Nutrition and Blood Cancer seminar, Shepparton 30 Apr 9-10.30am Hume Nutrition and Blood Cancer seminar, EchucaLodden/Mallee13 Apr 10am-12pm Bendigo Blood Cancer Support Group (also 11 May, 13 July, 10 Aug, 14 Sep)

SOUTH AUSTRALIA9 Apr 10.30am 12.30pm Southern Support Group, Old Reynella (also 14 May, 11 Jun, 9 Jul, 13 Aug, 10 Sep)14 Apr 10am-12pm Open Age Myeloma Support Group, Northfield (also 9 Jun, 11 Aug)15 Apr 11am-1pm Strathalbyn Support Group (also 20 May, 17 Jun, 15 Jul, 19 Aug, 16 Sep)20 Apr 10am-12pm Young Myeloma Support Group, Glenelg (also 15 Jun, 17 Aug)28 Apr 10-11am Barossa Support Group (also 26 May, 23 Jun, 28 Jul, 25 Aug, 22 Sep)26 May 10am-12pm Men’s Support Group, Northfield (also 28 Jul, 29 Sep)

NORTHERN TERRITORy 2 Apr 10-11.30am Darwin Support Group (also 7 May, 4 Jun, 2 Jul, 6 Aug, 3 Sep)30 Apr 10-11.30am Alice Springs Support Group (also 28 May, 25 Jun, 30 Jul, 27 Aug, 24 Sep)19 May 6-8pm Social Cinema Night & Support Group, Palmerston (also 21 Jul, 15 Sep)

TASMANIA15 Apr 11am-1pm Hobart Blood Cancer Support Group24 Apr 10.30-12pm Northern Tasmania Myeloma Support Group, Launceston 29 Apr 11am-1.30pm Cooking for Chemo cooking demonstration, Hobart, with My Kitchen Rules

chefs, Mel and James Maddox and onco-dietitian, Fiona Rowell9 Jun 10.30am-12pm Northern Tasmania Blood Cancer Support Group, Launceston (also 11 Aug)

NATIONAL TELEPHONE FORUMSMyeloma telephone forums are held on the first Thursday of each month for patients in regional and remote areas and those in metropolitan areas who have difficulty accessing the Leukaemia Foundation’s regular education activities. Contact Kaye Hose on 03 9949 5821 or myeloma@leukaemia.org.au to find out more and to register.

Visit www.leukaemia.org.au for our latest Education and Support Program Event Calendar. To register for an education or support event, freecall 1800 620 420 or email info@leukaemia.org.au.

WESTERN AUSTRALIAPerth Metro20 Apr 10am-12pm Allo vs Auto Transplants with the Bone Marrow Registry18 May 1-3pm Perth Metro Blood Cancer Support Network (also 15 Jun, 20 Jul, 17 Aug,

21 Sep)25 May 4.30-6pm Bassendean Accommodation Support Group (also 27 Jul, 24 Aug)9 Jun 10am-12pm Perth education session: Cooking for ChemoAug TBA Conference for People Living with a Blood Cancer, PerthPeel16 Apr 10.30am-12pm Mandurah Blood Cancer Support Network (also 21 May, 18 Jun, 20

Aug, 17 Sep)24 Apr 1-2.30pm Port Kennedy Blood Cancer Support Network (also 19 Jun, 28 Aug)Bunbury9 Apr 10.30am-12pm Bunbury Blood Cancer Support Network 20 Apr 10am-12pm Allo vs Auto Transplants with the Bone Marrow Registry (webinar)20 May 10.30am-12pm Bunbury Regional Support Network (also 17 Jun, 19 Aug, 16 Sep)

NEW SOUTH WALES & AUSTRALIAN CAPITAL TERRITORYSydney Metro

2 Apr 2-4pm Penrith Blood Cancer Information & Support Group (also 4 Jun, 6 Aug)10 Apr 10am-12pm

10am-12pmConcord Blood Cancer Education & Support Group (also 8 May, 12 Jun) Liverpool Blood Cancer Education & Support Group (also 8 May, 12 Jun)

27 Apr 10-11.30am Kogarah Blood Cancer Education & Support (also 25 May, 29 Jun)29 Apr 2-4pm

11am-1pmRandwick Blood Cancer Education & Support Group (also 24 Jun, 29 Jul) Westmead Blood Cancer Education & Support Group (also 27 May)

29 May 10am-12pm Artarmon Blood Cancer Education & Support Group (also 21 Jul)New England4 May 2-3.30pm Armidale Blood Cancer Information & Support Group (also 1 Jun, 6 Jul,

3 Aug, 7 Sep)6 May 2-4.30pm Tamworth Blood Cancer Education & Support Group (also 3 Jun, 1 Jul,

5 Aug, 2 Sep)Hunter7 Apr 10am-12pm Newcastle Blood Cancer Education & Support Group (also 5 May, 2

Jun, 7 Jul, 4 Aug, 1 Sep) 9 Apr 11am-12pm Mudgee Blood Cancer Information & Support Group (also 11 Jun)14 Apr 10-11.30am Port Stephens Blood Cancer Education & Support Group (also 9 Jun, 11 Aug)Illawarra & Shoalhaven7 Apr 10am-12pm Wollongong Blood Cancer Education & Support Group (also 5 May, 2 Jun)13 Apr 10am-12pm Bomaderry Myeloma Support Group (also 11 May, 8 Jun, 13 Jul,

10 Aug, 14 Sep)14 Apr 10am-12pm Bowral Blood Cancer Education & Support Group (also 16 Jun)Northern Rivers16 Apr 10am-12.30pm Tweed Heads Blood Cancer Education & Support Group (also 18 Jun, 20 Aug)25 May 10am-12.30pm Lismore Blood Cancer Education & Support Group (also 27 Jul)Mid North Coast21 Apr 1-3pm Port Macquarie Blood Cancer Education & Support Group (also 18 May,

15 Jun) 23 Apr 10.30am-12.30pm Coffs Harbour Blood Cancer Education & Support Group (also 28 May, 25 Jun)19 May 11.30am-1pm Taree Blood Cancer Information & Support Group (also 21 Jul, 22 Sep)Central Coast15 Apr 11am-12pm Cowra Cancer Education & Support Group (also 10 Jun)30 Apr 10-11.30am Gosford Blood Cancer Education & Support Group (also 28 May, 25

Jun, 30 Jul, 27 Aug, 24 Sep)ACT & Southern NSW 14 Apr 10am-12pm Canberra Blood Cancer Education & Support (also 12 May, 9 Jun, 14 Jul)15 Apr 10.30am-12.30pm Batemans Bay Blood Cancer Education & Support Group (also 17 Jun, 19 Aug)20 May 10.30am-12.30pm Moruya Blood Cancer Education & Support Group (also 15 Jul, 16 Sep)Central West & Far West1 Apr 10.30am-12pm Dubbo Blood Cancer Education & Support Group (also 6 May, 3 Jun)2 Apr 10.30-12pm Orange Blood Cancer Education & Support Group (also 7 May, 4 Jun)8 Apr 10.30-12pm Bathurst Blood Cancer Education & Support Group (also 13 May, 10 Jun)14 May 11am-12pm Parkes Blood Cancer Education & Support Group (also 9 Jul, 10 Sep)2 Jun 1.30-3pm Cobar Blood Cancer Education & Support Group (also 1 Sep)

DIARY DATES