MyeConversations:
A Myeloma Australia Podcast Series

Welcome to Mye Conversations. Myeloma Australia’s podcast series. Hosted by our expert Myeloma Support Nurses, in MyeConversations, we chat to people living with myeloma, interview experts in the field and deliver educational material on elements of this specialty area. This podcast aims to support, inform and empower those living with myeloma, their family, friends and health care professionals. If you have a question or would like to suggest a topic to be discussed please email nurses@myeloma.org.au

Season 4

How myeloma impacts different body systems and strategies to keep people well on and off therapy

Season 4 – Episode 20

In this episode Hayley Beer sits down with Donna Catamero, Nurse Practitioner and Director of Myeloma Translational Research at The Mount Sinai in New York and member of the International Myeloma Foundation Nurse Leadership Board. Hayley and Donna discuss how myeloma impacts different body systems and strategies keep people people well on and off therapy. Topics discussed include, bone, pain, kidneys, blood clots, peripheral neuropathy, GI, exercise, steriods, infections and travelling.

Host: Hayley Beer Guest: Donna Catamero Length: 32 mins

The Treatment Approvals Process Explained

Season 4 – Episode 19

In this episode Sandy sits down with Ann Single from The Patient Voice Initiative.

The Patient Voice Initiative (PVI) is a collaboration between patients (or health consumers), researchers and industry working towards improving the patient voice in the Australian health system. Ann is the coordinator for and a member of its management committee and advisory committee. Ann has over 20 years’ experience in this space.

Sandy Roberts, Myeloma Australia’s Ambassador, has received many questions from our community members about the process of medicines and technology approval here in Australia and Ann will be answering these questions.

Host: Sandy Roberts, Myeloma Australia’s Ambassador Guest: Ann Single from The Patient Voice Initiative Length: 85 mins

Season 3

CAR-T cell therapy – A US experience

Season 3 – Episode 18

Hayley Beer, Manager Programs and Services chats to Dr Tom Martin and Professor Simon Harrison at the Blood Conference. In this episode we hear about Dr Martins experiences in using CAR-T cell therapies in patients living with myeloma and the new and emerging therapies that are avaliable.

Host: Hayley Beer Guest: Dr Thomas Martin & Professor Simon Harrison Length: 27 mins

Understanding MGUS, Smouldering Myeloma and Myeloma

Season 3 – Episode 17

In this episode of MyeConversations we talk to international guest Dr Shaji Kumar. Dr Kumar is an expert in plasma cell dyscrasia. We will learn more about the differences between MGUS, Smouldering Myeloma and Myeloma.

Host: Natatsha Clarke Guest: Dr Shaji Kumar Length: 19 mins

Younger Persons – Part 2

Season 3 – Episode 16

Part 2, Geoff chats further to Louise about his advocay roles, networking with his community, funding a research trial, advocating for himself and finding the services that he needs and finally self refection after his diagnosis of myeloma as a younger person.

Host: Louise Darmody Guest: Geoff Nyssen Length: 68 mins

Younger Persons – Part 1

Season 3 – Episode 15

Part 1, In this episode we hear from Geoff Nyseen about his diagnosis of myeloma when he was 40 years old. Geoff talks to Louise Darmody about navigating the diagnosis, his children and family, work and dealing with relapse.

Host: Louise Darmody Guest: Geoff Nyssen Length: 27 mins

Knowledge is power!

Season 3 – Episode 14

We are excited that our community members were able to join us with Professor Joseph Mikhael on MyeConversations and ask lots of myeloma related questions. Thank you to Valarie, Donna, Jack, Daniel, Mel, Nicole, Steve and Terry and also to Dr Joseph for a great show!

Host: Nella Combe Guest: Professor Joseph Mikhael Length: 41 mins

Solidarity and hope = Canteen

Season 2 – Episode 13

In this episode we meet Shae Chester and Ruby Hart from CANTEEN. We learn more about this not for profit charity supporting younger people who either have a cancer diagnosis or a close family member’s cancer or a death of a loved one.

Host: Emma-Jane Furphy  Guests: Shae Chester and Ruby Hart Length: 43 mins

Support and resources for kids provided by Camp Quality

Season 2 – Episode 12

In this episode we discuss the supports and resources that are available to children who’s loved ones are a living with myeloma through the services of Camp Quality. We also learn how this amazing service commenced back in 1983 by founder Vera Entwistle.

Host: Nella Combe Guest: Cara Woods Length: 34 mins

A day in the life of a Myeloma Support Nurse

Season 2 – Episode 11

Jo Gardiner is Myeloma Australia’s South Australian and Northern Territory Senior Specialist Myeloma Nurse. Jo gives us the low down on what a day in the life of a Myeloma Support Nurse looks like and her career journey to date.

Host: Emma-Jane Furphy  Guest: Jo Gardiner Length: 43 mins

The history of myeloma

Season 2 – Episode 10

In this episode we meet Emeritus Professor Doug Joshua. We examine the origins of myeloma and how this orphan disease has made massive segways in the treatment and care of people living with myeloma.

Host: Nella Combe Guest: Emeritus Professor Doug Joshua Length: 41 mins

MSAG and the partnership with Myeloma Australia

Season 2 – Episode 09

In this episode we discuss MSAG with Professor Miles Prince. Professor Prince will give us a greater understanding of the role of MSAG and how it works together with Myeloma Australia to influence a positive change.

Host: Hayley Beer Guest: Professor Miles Prince Length: 29 mins

Clinical trials and access when you live regionally

Season 2 – Episode 08

In this episode we meet Dr Hasib Sidiqi and Karen Wilde. Dr Sidiqi will give an over view of the importance of clinical trials while Karen will give her experience of being on several clinical trials for the treatment of myeloma.

Host: Hayley Beer Guest: Dr Hasib Sidiqi and Karen Wilde Length: 50 mins

Season 1

Let’s Keep Active!

Season 1 – Episode 07

In this episode we chat to Travis Hall, an Exercise Physiologist at the Peter MacCallum Cancer Centre in Melbourne. Travis answers some of our listeners questions about exercise but also discusses considerations for starting a new exercise program, best practice in instructing an exercise program, goal setting, mangaing the side effects of myeloma treatments with exercise, fatigue and exercise, cardiovascular and resistant training, the EX-MED program and recommendations for community based exercise physiolgist/physiotherapists.

Guest: Travis Hall Host: Nella Combe Length: 41 mins

Relapsed and Refractory Myeloma – your questions answered

Season 1 – Episode 06

So why does Myeloma come back and why is there no cure? Why do some people with myeloma respond to certain treatments and others do not? In this episode Professor Andrew Spencer walks us through the new Myeloma Australia resource- Relapsed and Refractory Myeloma- your questions answered which explains these complex concepts. Firstly Professor Andrew Spencer will give us a refresh on myeloma and then go into more detail about relapsed and refractory myeloma, the criteria the PBS set for commencing new treatment, considerations haematologist take into account when a patient relapses or becomes refractory to treatment, understanding why myeloma comes back, how myeloma behaves over time, new symptoms to report to the haematologist, clinical trials and logistical mechanisms to support regional and rural patients on a clinical trial.

Guest: Professor Andrew Spencer Host: Hayley Beer Length: 49 mins

Complementary, Alternative and Integrative Medicine:  A case study

Season 1 – Episode 05

We are joined by our special guest Gail Rowan, Senior Pharmacist at Peter MacCallum Cancer Centre. In this episode Gail talks to us about everything complementary, alternative and integrated medicine through a case study from her clinic. Gail discusses the importance of speaking to the health care team if using complementary therapies in conjunction with myeloma therapies.

Guest: Gail Rowan Host: Emma-Jane Furphy   Length: 30 mins

All Things Nutrition and Myeloma – Part 2

Season 1 – Episode 04

Part 2: In this episode we continue the conversation with Lauren Atkins from Oncore Nutrition who clarifies some of the misconceptions relating to food and nutrition. In this second part show Lauren will discuss, the role of complementary medicine during treatment, ways to help increase fluid intake, understanding the role of miracle fruit, prebiotics and probiotics in the myeloma patient, benefits of organic foods and accessing a dietician in the community.

Oncore Nutrition – Two peas in a pod cast

Guest: Lauren Atkins   Host: Hayley Beer   Length: 26 mins

All Things Nutrition and Myeloma – Part 1

Season 1 – Episode 03

Part 1: Food and nutrition are a huge part of health and wellbeing that can become quite confusing when diagnosed with myeloma and start treatment. We know that there are common misconceptions relating to food and nutrition and we are so fortunate to have Lauren Atkins from Oncore Nutrition on the show to set the record straight. This is a two-part special where Lauren will discuss and clarify: diet and boosting your immune system, neutropenic diets, sugar and cancer, the relationship between dietary protein and paraprotein, steroids and weight gain, weight loss whilst on treatment and tips for relieving nausea.

Oncore Nutrition – Two peas in a pod cast

Guest: Lauren Atkins   Host: Hayley Beer   Length: 30 mins

The Interface Between Myeloma and Infection

Season 1 – Episode 02

In this episode we meet Dr Anna Kalff, a haematologist from The Alfred Hospital in Melbourne. Dr Kalff gives us a recap on myeloma and the immune system, the effects of myeloma on the immune system, the differences between innate and adaptive immunity, how myeloma treatments affect the immune system, what does a suppressed immune system look like, advice on infection prevention, immune base treatments and the implications for infections, risk factors for the person living with myeloma, supportive medications to boost the immune system, minimising risk of infection and timing of vaccinations.

Guest: Dr Anna Kalff   Host: Nella Combe   Length: 38 mins

The History of Myeloma Australia

Season 1 – Episode 01

In our very first episode we meet our president Brian Rosengarten. Brian together with his wife Ros, Bob, Glenys, Donald and Judith started the Myeloma Foundation of Victoria. He tells the story of how it all began and the early years of the foundation. We discuss the growth of the services that are provided and how it has come to what it is today, 25 years later. Brian also gives a beautiful personal account of his role as a carer and how his life changed after Ros’ diagnosis. We also hear about being presented an Order of Australia for his work in the myeloma community.

Guest: Brian Rosegarten OAM    Host: Emma-Jane Furphy   Length: 50 mins