MyeConversations by Myeloma Australia

We are joined by special international guest, Dr Adam Cohen. In this episode Dr Cohen talks about the new kids on the block, Bispecific T Cell Engagers.

EJ Furphy sits down with Sandra Russell, author of The Feeling of Cancer. This memoir gives a deeply personal and honest account of her diagnosis of myeloma and the coping mechanisms she has adopted over the years. Sandra has drawn on her professional role as a psychotherapist to explore the different feelings she had and how to make sense of her experiences.


Disclosure:
In this episode Sandra guides us through her emotional response to treatment including some complications she experienced during her stem cell transplant which might be difficult to listen to depending on your current situation. It is important to note that everyone's experience of treatment is different. We would like our listeners to please assess how they are feeling before they listen to this show.  Our aim is to portray a variety of experiences however please be mindful of your own well-being while listening and feel free to skip, pause or even take a break during this episode.

In this episode Hayley Beer sits down with Donna Catamero, Nurse Practioner and Director of Myeloma Translational Research at The Mount Sinai in New York and member of the International Myeloma Foiundation 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.

In this episode Sandy Roberts 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.

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.

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. 

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.

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.

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 Jo for a great show! Areas that were covered include, dealing with relapse, maintance therapy, length of treament, MRD, high risk disease and cytogenetics, bone marrow failure, side effects of treatment, causes of myeloma and understanding  how myeloma presents. 

In this  episode of MyeConversations we meet Shae Chester and Ruby Hart from CANTEEN. We learn more about the services this not for profit charity provide and talk about the difficult conversations to have with younger people when a cancer diagnosis is made. Shae and Ruby provide practical tips for having these conversations. Key links: www.canteenconnect.com.au, www.canteen.org.au/

42 kids per day are told thier parents have a cancer diagnosis. In today’s episode we find out about 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 and its growth over the last four decades.  Key links: App store; Kids' guide to cancer, https://www.happinesshub.org.au/ https://www.jumohealth.com/comics/understanding-multiple-myeloma

What does a Myeloma Support Nurse really do all day? Jo spills the beans on a day in the life of a myeloma support nurse. We find out about the nursing services that Myeloma Australia provide and the career pathway Jo has taken to become a Myeloma Support Nurse for Myeloma Australia.

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. Emeritus Professor Doug Joshua also gives us his opinon on what he thinks the future of myeloma may look like.

In this episode we talk to Professor Miles Prince about the role of myeloma and Scientific Advisory Group (MSAG) in the myeloma space. We will get to know a bit more about the group and how they contribute to research, guidelines, new treatments and advocacy for people living with myeloma. We also examine the relationship between MSAG and Myeloma Australia and how they collaboratively work together to foster change and have a positive influence for people living with myeloma.

In this episode we meet Dr Hasib Sidiqi from Fiona Stanley Hospital in Perth, Western Australia. We will be talking about clinical trials and why they’re so important as an option of therapy for people living with myeloma. We will delve into the structure and phases of clinical trials, eligibility for trials and some of the pro’s and cons of being involved in a clinical trial. We will also find out about some of the trials happening now in Australia for the myeloma community and how to know what trials are available to you. We will also be speaking to Karen Wilde about her personal experience as part of the … trial and also being a regional patient. 

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 structing an exercise program, goal setting, managing the side effects of myeloma treatments with exercise,  fatigue and exercise, cardiovascular and resistant training, EX-MED and recommendations for community based exercise physiologist/physiotherapists. 

So why does myeloma come back, 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 about relapsed and refractory myeloma. He answers some of these complex questions in a systematic and easy to understand way. 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's 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/rural patients on a clinical trial.

www.myeloma.org.au/relapse and refractory myeloma book
www.clinicaltrials.org

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 and alternative medicines (CAM) and presents a case study from her clinic.  Gail explains the difference between complementary and alternate medicines and discusses the importance of speaking to the health care team if using complementary therapies in conjunction with myeloma therapies. 

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.  

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, 23 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.