Living with Multiple Myeloma podcast

In this podcast Orlaith Cormican a PhD student and Nurse chats with Maire Treasa and shares her findings from the research she undertook over the last number of years exploring psychosocial vulnerability in caregivers of individuals with a chronic blood cancer. She talks about the impact that caring for someone has on all aspects of a caregivers life, the life adjustment and the crucial role they play on the patient journey. She also talks about caregivers who are potentially more at risk of becoming psychosocially vulnerable and the need to include caregivers as part of the patient's treatment trajectory in order to move future care forward. Thanks for listening. Multiple Myeloma Ireland: Website Facebook Twitter This podcast has been produced by Fuzion.

In this podcast, legendary hurling manager Michael Bond, shares his experience of living for a number of years with cardiac AL amyloidosis. Chatting with our host MT, Michael outlines his previous cardiac health, and how he initially attributed his symptoms including shortness of breath to his underlying condition. Michael talks about the importance of advocating for one's own health and pushing for further investigations when symptoms persist. He candidly shares his journey from diagnosis to treatment, and his visits to the Royal Free AL Amyloidosis centre, Uk. He explains how the treatment he received has been effective in controlling his condition, and improving his quality of life with some minor adaptations. His positive attitude is uplifting and inspiring. It's clear his sporting career, 'can do attitude' and fighting spirit have helped him navigate his diagnosis, treatments and assisted him to overcome challenges faced, including weight loss and losing his identity. Michael has used fundraising as a powerful tool to raise awareness of AL Amyloidosis and a way to give back to the Amyloidosis centre, Uk. Michael speaks of the need for greater awareness of this rare condition and his donation to MMI to support their efforts in promoting further support and information to patients living with AL Amyloidosis. He stresses that being informed is so important to living well. Of course, no conversation with Michael could be complete without discussing his knowledge of hurling and predications for the future. This engaging and encouraging podcast provides great encouragement for any patient or family affected by this rare condition. We hope you find this podcast helpful. Multiple Myeloma Ireland: Website Facebook Twitter This podcast has been produced by Fuzion Communications.

In this podcast, Episode 1 of the 2nd Series and our second in the Living with Amyloidosis series, Darren Foard and Angelique Smit, nurse experts from the Royal Free Hospital in London, provide an excellent overview of Amyloidosis focussing on disease symptoms, the patient's journey and diagnostic investigations to confirm AL Amyloidosis. They discuss their role in assisting patient navigate their diagnosis and outline the referral pathway for Irish patients for further investigation at the National Amyloidosis Centre at the Royal Free Hospital in London. Amyloidosis management requires a multidisciplinary approach and Darren and Angelique outline the collaboration which occurs between nursing and medical staff to coordinate the patient's diagnosis and management and the critical role each team member plays in supporting patients. Finally they discuss the opportunity for patients unfit to travel to the UK for assessment to be discussed with Amyloidosis experts at the Royal Free Hospital. We hope you find this episode useful and informative. Multiple Myeloma Ireland: Website Facebook Twitter This podcast has been produced by Fuzion Communications.

In this podcast Dr John Quinn explains how AL Amyloidosis, a rare illness which is not fully understood, can often be tricky to diagnose. Early diagnosis, however, is key to minimise organ damage and treatments have improved over the past 10 years with high response rates piggybacking off myeloma treatments. There is no typical Amyloidosis patient and many may have been feeling unwell for 9-12 months before a diagnosis is made. Symptoms of Amyloidosis vary among patients and include generalised tiredness, weight loss, feeling lightheaded, numbness or a tingling feeling in hands or feet, easy bruising, purple spots or bruising around eyes and swelling in the abdomen, legs ankles or feet. Patients may also experience shortness of breath, reduced appetite and altered bowel habits. In Amyloidosis, the recycling of proteins becomes a problem and light chains are produced which build up in organs around the body. The protein hides in the heart, liver, kidneys gut, skin or nervous system and causes organ damage. Specialist investigations including blood tests, chest x-ray, tracing of heart (ECG), tests for protein in the urine, biopsy of organs affected if possible are completed. A SAP scan a specific scan is used to determine where amyloid deposits are in the body.Patients supported by the HSE travel to the Amyloidosis centre at the Royal Free Hospital London for this test. As Amyloidosis is a multi-system disease, Multidisciplinary team collaboration is critical to manage patients. However, according to Dr Quinn the outlook for Amyloidosis patients has never been better with significant improvement in survival rates. Treatment involves chemotherapy, steroids and targeted therapies including antibody therapy. Clinical trials for patients with light amyloidosis and cardiac involvement will begin soon at Beaumont Hospital. This is the first podcast on Amyloidosis. We will soon share others from patients and nurse specialists. A huge thank you to Dr. John Quinn for his time. This show is brought to you by Multiple Myeloma Ireland: Website Facebook Twitter This podcast has been produced by Fuzion Communications.

In this podcast Professor Siobhan Glavey, provides an update of the rapid developments in managing Multiple Myeloma. Professor Glavey explains how the future has never been more hopeful as significant improvement in treatment options has resulted in unprecedented progression free survival (PFS). Today not only are patients living longer, they have a healthier quality of life. Professor Glavey explains the many variables in managing myeloma and the importance of a personalised approach, using the right drugs with the right patient. In her discussion with Maire Treasa she outlines the many factors that influence the decision to treat a patient including patient related factors and treatment related factors. She describes the findings from clinical trials and gives an overview of the results presented at the American Society of Haematology (ASH) annual conference. She explains how for patients who are transplant eligible the results at ASH confirm transplant is here to stay, as 3 year PFS was better in those who received a transplant. In addition, Prof Glavey explains for transplant ineligible patients, effective treatments have also resulted in increased PFS. She explains how 3 drug combinations is standard today in Ireland for the majority of patients. However, in the future 4 drug combinations will be used with each drug having a different mechanism of action to treat the disease. No one size of treatment fits all and it is important to consider different drugs or different drug doses when treating individual patients and managing side effects. She explains there is no wonder drug, she highlights the importance of availability of clinical trials for our patients and the importance of continually pushing the boundaries. Prof Glavey outlines how we have a good repertoire of drugs with many more still to come including antibody drug conjugates. The future is brighter as we work together to treat Multiple Myeloma. Multiple Myeloma Ireland: Website Facebook Twitter This podcast has been produced by Fuzion Communications.

In her engaging conversation with Maire Treasa, Ruth Kilcawley Senior Nutritional Support Dietitian at University College Hospital, Galway describes the impact of what we eat on our physical health. Ruth outlines the role of good diet and nutrition in managing cancer, reducing infections and improving Multiple Myeloma patients quality of life. Ruth stresses the importance of maintaining strength whilst undergoing treatment. She shares advice on how to balance and manage food intake. Ruth explains the importance of food variety, mixed food colours and choosing safe foods to maximise nutrition in cancer and in living with multiple myeloma. Ruth also outlines the role of the dietitian in assessment of patients nutritional status and explains the role of dietary counselling techniques to address some of the issues Multiple Myeloma patients experience during their treatment. She provides excellent tips and advice on how to overcome challenges with taste and smell which will assist patients better tolerate treatment. She emphasises how eating regularly, fuels the body. In addition, she discusses the role of nutritional supplements and cautions on the risk of overuse of supplements. Moreover, she highlights the importance of getting the balance right, we all deserve the occasional treats once in moderation! Finally, Ruth provides advice on managing sources of information and where to seek evidence based advice on a balanced, nutritional, safe diet for cancer patients. Multiple Myeloma Ireland: Website Facebook Twitter This podcast has been produced by Fuzion Communications.

In this podcast, Ann shares her personal experience of living with Multiple Myeloma for over 5 years. Although, her multiple myeloma has relapsed more than once and requires ongoing treatment, she is living well and is hopeful for the future. Ann' s engaging conversation with Maire Tresa provides advice on the importance of taking control of your life, being active and surrounding yourself with supportive people when coping with this relapsing, remitting cancer. She describes how learning to adjust her mindset and adapting her activities has helped her learn to live with relapsed disease. Ann outlines how being more self aware and drawing on her inner reserves has helped her overcome the fear and disappointment of her Multiple Myeloma relapse and subsequent treatment. Ann describes honestly how she has adapted to life from 'living from blood test to blood test' to learning to live and manage her disease both physically and emotionally. Throughout this podcast her positive attitude and drive is moving and inspiring. Ann shares important advice for patients living with Multiple myeloma, including staying informed, being aware of your limitations, seeking support for symptoms or side effects adjusting activities and setting goals. Ann highlights the importance of support groups for sharing advice and information. In addition she encourages others through her personal experience to savour the small and simple things in life and to remain hopeful for the future. Multiple Myeloma Ireland: Website Facebook Twitter This podcast has been produced by Fuzion Communications.

In this podcast, Theresa Meenaghan an Advanced Nurse Practitioner in Haematology, discusses the importance of early recognition and early intervention of treatment side effects. By raising the red flag early she explains we can maintain patients on treatment longer and get the best results. Theresa highlights how newer multiple myeloma treatments are less associated with the traditional side effects of chemotherapy, but have their own unique side effect profile. Theresa outlines very clearly the effects of treatment on the 'blood factory', kidneys, bones and nerves. Theresa also provides important tips on how patients can manage common side effects of steroids, bone medication as well as managing symptoms including fatigue and peripheral neuropathy. Finally, Theresa highlights the importance of not suffering in silence, healthcare professionals are there to help you manage any side effects, don't be afraid to ask no matter how trivial or embarrassing it may be for you, our aim is to keep you on treatment with the minimum side effects for as long as they are effective. "Cancer is only one chapter in your life it's not the whole story". Multiple Myeloma Ireland: Website Facebook Twitter This podcast has been produced by Fuzion Communications.

In this podcast, Joanna Sweeney a systemic family therapist, explores the impact and challenge of "Not Knowing" following a diagnosis of Multiple Myeloma. "Not knowing" what MM is, what it means for me, for my family, not knowing how to cope and make sense of all the changes. Joanna discusses understanding loss following a diagnosis and finding empowerment. She outlines the importance of building resilience, finding inner strengths, meaning and purpose in the patient and family unit. She also describes how emotional regulation and family therapy strengthens family resilience to cope with adversity and perhaps even grow from it together. Multiple Myeloma Ireland: Website Facebook Twitter This podcast has been produced by Fuzion Communications.

In this podcast, Caroline Devery shares her inspiring personal journey from mild symptoms of a 'painful swollen leg' to a diagnosis of Multiple Myeloma. She gives an open an honest account of her treatment plan from initial treatment, through Stem Cell transplantation to maintenance therapy, all whilst planning her wedding! Her story provides great insight, information and support for all patients living with Multiple Myeloma and their families. Multiple Myeloma Ireland: Website Facebook Twitter

In this podcast, part 1 of a 2 part series, Prof. Paul Browne outlines the pathway to a diagnosis of Multiple Myeloma. He provides details on the treatment approach to control and manage Multiple Myeloma, all from an Irish perspective. An excerpt specific to Infections and vaccination management in Multiple Myeloma is provided in part 3. Prof Paul Browne is a Professor of Haematology at Trinity College, Dublin and Consultant Haematologist and director of the National Adult Stem Cell Transplant Programme at St James Hospital, Dublin. He is an expert in Multiple Myeloma Multiple Myeloma Ireland: Website Facebook Twitter