Living with Multiple Myeloma podcast

In this series of podcasts you will hear from patients and many healthcare experts caring for patients with Multiple Myeloma. The conversations focus on the patient journey from diagnosis, through treatment and living well post treatment. The conversations aim to provide information and signpost support to all patients living in Ireland with MM and their families. Conversations include Caroline's patient journey of living with a new diagnosis and Anne's patient journey of living well with relapsed MM. You will hear experts discuss the different stages of MM including Smouldering Myeloma, active disease and relapsed refractory MM. Managing a diagnosis of MM requires a multidisciplinary approach, therefore this series features conversations around patient involvement, nursing and dietary advice as well as psychosocial support. Finally our conversations also focus on the progress of research and development in managing MM into the future.

Behind the Blood: The Caregiver’s experience of blood cancer 11/19/2024

Title – Living with Myeloma - A Spouse Perspective 11/18/2024

Living with Cardiac AL Amyloidosis, a personal journey from Michael Bond, Galway native, retired teacher and renowned Ex- Offaly hurling manager 10/29/2024

The Family - Coping with Multiple Myeloma 03/08/2024

Living with Amyloidosis- Diagnostic & referral pathway for Irish patients to the National Amyloidosis Centre in the UK 02/15/2024

An excellent overview of effective treatments in Multiple Myeloma - Prof O’ Dwyer 05/24/2023

Amyloidosis a protein problem - Dr. John Quinn 05/10/2023

Amyloidosis a protein problem - Dr. John Quinn 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: /episode/index/show/livingwithmultiplemyeloma/id/26799252