By Multiple Myeloma Ireland
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The podcast currently has 18 episodes available.
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
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
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.
Multiple Myeloma Ireland:
Website
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
This podcast has been produced by Fuzion Communications.
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
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
This podcast has been produced by Fuzion Communications.
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.
Multiple Myeloma Ireland:
Website
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
This podcast has been produced by Fuzion Communications.
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.
Multiple Myeloma Ireland:
Website
This podcast has been produced by Fuzion Communications.
Multiple Myeloma Ireland:
Website
This podcast has been produced by Fuzion Communications.
The podcast currently has 18 episodes available.
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