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.

 

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This podcast has been produced by Fuzion.

 

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

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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. 

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This podcast has been produced by Fuzion Communications.

 

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.

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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.

 

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This podcast has been produced by Fuzion Communications.

 

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.

 

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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:

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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.

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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.

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In this podcast Dr Norma Jean Murphy, Chartered Senior Clinical and Counselling Psychologist, chats to Maire Treasa about overcoming the overwhelming reactions patients may feel at diagnosis of Multiple Myeloma from shock, disbelief, anger, sadness, loss and for some relief they finally have a diagnosis particularly as many patients may have been unwell for some time.

She explains there is no right way or wrong way to deal with a diagnosis, each person’s experience is unique and each patients journey is personal and individual. Norma Jean explains the importance in processing emotions and coping with adjustment.

She describes how reactions change over time from diagnosis to recovery. She outlines the importance of creating a pause and tuning in to our emotions. She stresses the need for self-care and compassion. She emphasises the benefit of understanding ones emotions as they occur as well as the importance of giving permission to feel those emotions.

She describes how stress and distress levels are on a continuum but are often transient in nature. Throughout the podcast Norma Jean emphasises the importance of recognising and managing stress and distress levels whilst also focussing on ways to alleviate it. She provides excellent advice on self-awareness and self-care in adjusting to life with multiple myeloma.

She emphasises patients are not alone and describes the importance of having support network around you when dealing with the new language a cancer diagnosis brings. Talking with others is important, however Norma Jean acknowledges the difficulties patients may experience in what she describes as the ‘toothpaste moment’ and dealing with other people’s reactions.  She stresses therefore the importance of going at your own pace and managing other peoples plans and expectations.

Finally Norma Jean outlines the importance of connecting with others, gaining their support and the availability of specialist supports services nationally.

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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.

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In this podcast, Dr Denis O’Keeffe, Consultant Hematologist explains that Multiple Myeloma will in the majority of patients come back, however today many options for treating and controlling the relapsed/refractory disease exists and patients survival has greatly improved.

Dr O’Keeffe is keen to point out patients cannot stop Multiple Myeloma from coming back but it is important to maintain a healthy lifestyle. Dr O’Keeffe advises early recognition of the disease relapse is possible due to close monitoring and before the disease can cause damage.

Not all patients require treatment at relapse and the decision to treat or not is individualized and made in partnership with patients. The decision to treat is based on the patients individual disease, age, physical and mental health and the additional challenge of Covid risk.

Dr O Keeffe highlights that at relapse patients are better equipped to cope and that through the difficult times there is great hope. Treatment options are increasing all the time moving towards the possibility of cure.

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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.   

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In this podcast, Nurse Liz Higgins, Transplant Co-Ordinator at St James Hospital, Dublin provides a detailed account of the autologous stem cell transplant patient pathway.

Liz explains the role of stem cells, how stem cells are harvested and later given back to a patient following high dose chemotherapy. 

Although, not curative, ASCT aims to treat Multiple Myeloma, prolong disease control and improve overall survival. Liz summaries the eligibility criteria and assessment process required prior to undergoing a ASCT. Liz clearly outlines the role of the multidisciplinary team in supporting patients through the transplant journey. This treatment is associated with many side effects however these can be very well managed. Reporting symptoms early is important.

Finally Liz, clearly outlines the patients recovery period following a ASCT.

This is an essential guide for patients, families and carers where ASCT is considered as part of their Multiple Myeloma treatment plan.

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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”.

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In this podcast, Dr Gerard Crotty, Consultant Hematologist explains Monoclonal Gammapathy of Undermined Significance (MGUS) a non-cancerous condition of the plasma cells and the slow growing cancerous process or early form of myeloma, Smouldering Multiple Myeloma.

Dr Crotty explains how treatment outside a clinical trial is not indicated in patients with either condition, however close monitoring is required.

For patients living with MGUS only a small no of patients will progress to Multiple Myeloma and will require treatment. For patients with Smouldering Multiple Myeloma abnormal cells can be detected in the bone marrow and an abnormal protein can be detected in the blood or urine but patients have none of the typical symptoms of active disease and monitoring regularly for signs that may indicate progression to active disease is the mainstay of management.

Understanding MGUS or SMM can be challenging for patients, Dr Crotty highlights the key symptoms patients need to report to their treating team.

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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.

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In this short episode Prof Paul Browne, Professor of Haematology at Trinity College, Dublin, outlines Important information on managing infection in Multiple Myeloma and the role of vaccinations including Covid 19 vaccination

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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.

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In Part 2 of a two part podcast, Prof. Paul Browne continues his conversation on managing Multiple Myeloma.

In this episode Prof Browne outlines the importance of supportive treatments and the role of patient in managing their Multiple Myeloma . He also provides an update on the latest research and developments in Multiple myeloma.

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.

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