Living with Multiple Myeloma podcast

Multiple Myeloma Ireland
  • 4.5 (4)
  • MEDICINE
  • UPDATED BIWEEKLY
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.

  1. Behind the Blood: The Caregiver’s experience of blood cancer

    5 DAYS AGO

    Behind the Blood: The Caregiver’s experience of blood cancer

    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.

    35 min
  2. Title – Living with Myeloma - A Spouse Perspective

    6 DAYS AGO

    Title – Living with Myeloma - A Spouse Perspective

    In this engaging podcast, Marie Treasa Ni Cheallaigh chats to Ally Bryne, whose husband was diagnosed with Multiple Myeloma in 2021. Sharing her family's experience, they discuss everything from diagnosis to fundraising to spreading awareness and the impact of Michael’s diagnosis has had on their young family. Thanks for listening Multiple Myeloma Ireland: Website Facebook Twitter This podcast has been produced by Fuzion.

    30 min
  3. Living with Cardiac AL Amyloidosis, a personal journey from Michael Bond, Galway native, retired teacher and renowned Ex- Offaly hurling manager

    OCT 29

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

    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.

    27 min
  4. The Family - Coping with Multiple Myeloma

    MAR 8

    The Family - Coping with Multiple Myeloma

    In this podcast, Maire Treasa Ní Cheallaigh chats to sisters Rachel and Laura, whose mum was diagnosed with multiple myeloma in 2016. Sharing their experiences, they discuss everything from the initial shock of the diagnosis, to the limited  information available for families of myeloma patients, touching on important issues such as patient autonomy, supporting someone close to you with myeloma, and the emotional impact that comes with a loved one receiving a multiple myeloma diagnosis.  Thanks for listening. Multiple Myeloma Ireland: Website Facebook Twitter This podcast has been produced by Fuzion Communications.

    32 min
  5. Living with Amyloidosis- Diagnostic & referral pathway for Irish patients to the National Amyloidosis Centre in the UK

    FEB 15

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

    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.

    38 min
  6. An excellent overview of effective treatments in Multiple Myeloma - Prof O’ Dwyer

    05/24/2023

    An excellent overview of effective treatments in Multiple Myeloma - Prof O’ Dwyer

    In this podcast Prof O’ Dwyer provides an excellent overview of effective treatments in Multiple Myeloma. He has seen the development of many new drugs leading to improved survival in MM patients over his career and he discusses these in detail. He highlights the role of the immune system and the development of immunomodulatory agents to treat Myeloma. Prof O’Dwyer explains the treatment options at diagnosis and the decision making process regarding treatments at relapse. Drugs discussed include Thalidomide, Lenalidomide and Pomalidomide , Bortezomib, Carfilzomib, Bi Specific antibodies drugs and Car T Cells. Fitness rather than numerical age is more important and treatments are individualised. Early recognition and treatment of side effects is critical. Finally Prof O’Dwyer also discusses the role of clinical trials in treating MM.   Multiple Myeloma Ireland: Website Facebook Twitter This podcast has been produced by Fuzion Communications.

    59 min
  7. 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: Website Facebook Twitter This podcast has been produced by Fuzion Communications.

    30 min
  8. Living with Multiple Myeloma: Michael O’Regan, Journalist and Broadcaster personal journey of Living with Multiple Myeloma

    07/19/2021

    Living with Multiple Myeloma: Michael O’Regan, Journalist and Broadcaster personal journey of Living with Multiple Myeloma

    In this final podcast of the series, Journalist, ex-Irish Times correspondent, Kerryman, and Multiple Myeloma patient Michael O’Regan discusses his experience of living with the condition. Michael's chat with Maire Treasa was recorded as part of the podcast series launch. In this engaging and honest account of Michael's personal story he outlines his diagnosis and treatment journey, which was complicated by the fact that it was his second cancer diagnosis. His first being a tumour on his leg back in 2018, which could have delayed his multiple myeloma diagnosis. He describes how he had some “classic” symptoms of the disease such as chronic back pain, however  he was attributing these to his recovery from surgery and radiation for the leg tumour. Michael had felt unwell for some time and knew something was wrong. A routine test in 2019 finally identified multiple myeloma, which Michael describes as his “second spin on the cancer merry-go round”. Along with monthly intravenous medication, Michael is now also on kidney dialysis three times a week. Michael, openly gives his personal experience of how he has coped mentally with his diagnosis,  “I’d like to say I dealt with this with bravery and courage and acceptance - I didn’t. I never lapsed into self-pity but I did rage against a second cancer diagnosis”. He admits that, like many others diagnosed with multiple myeloma, the disease was not on his radar, and he knew very little about it when diagnosed. He is also honest about how he coped. For someone whose career is based on communication, he admitted that it took a while for him to talk about having cancer. He describes how he found opening up on a personal level difficult, but with the help and support of psychology and excellent healthcare professionals once he decided he would be open about it, it gave him a certain “freedom”. Michael outlines how he went through depression, exhaustion, the physical and the mental side of the condition and its treatment. He describes his journey through lost and adjustments to now living a “full life”. He describes how it is important to find the right way for each individual to cope. He talks about how the commitment of healthcare professionals and reading other peoples stories has help him, along with volunteer groups. Finally, Michael describes how “cancer can be dealt with” and the excellent treatment available to Irish patients. Multiple Myeloma Ireland: Website Facebook Twitter This podcast has been produced by Fuzion Communications.

    27 min
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Ratings & Reviews

4.5
out of 5
4 Ratings

About

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.

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