MyeConversations by Myeloma Australia

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.