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/