Seminar on living with myeloma

More than 40 myeloma patients and carers attended an information and education seminar at Erina Leagues Club on August 11.

Myeloma is a specific form of cancer of the plasma cells (one of the blood cells) and is an incurable disease.

Treatment comprises a combination of chemotherapy, stem cell transplants and novel agent drugs.

Experts at the seminar included two haematologists, a physiotherapist, a pharmacist, a social worker and a nurse practitioner, combining to offer a holistic approach to the treatment and care of myeloma patients.

The seminar emphasised the practical support that could be provided to patients and their carers as they navigate their journey.

Dr Cecily Forsyth described how myeloma accounts for 1 per cent of all cancers in Australia with about 80% of patients having some bone damage.

She said that the most serious respiratory outcomes of myeloma were bronchitis and pneumonia.

In 2025 the average survival period for patients was 103 months, whereas in the 1980s it was only 22 months.

Dr Alison Lyons described how clinical trials provided a method of accessing novel therapies prior to their official implementation.

For example, CAR-T cell therapy offered personalised chemotherapy in which the body’s T-cells are collected and genetically modified before they are returned to the patient. 

To assist the patient navigate a better myeloma journey, pharmacist Karen Hunter described the importance of understanding the terminology around myeloma medications.

She also described the benefits of the Myeloma Scheduler, a document that informs patients of the sequencing of their medications across multiple cycles.

Oncology physiotherapist Melissa Jackson demonstrated the most effective technique for maintaining good balance and recommended 150 minutes a week of aerobic exercise or 75 minutes of vigorous exercise.

She also said that two sessions of resistance training was critical for the body’s major muscle groups.

Jessica Latter, a social worker at Wyong Hospital, said it was perfectly normal for patients to experience an emotional rollercoaster in their journey and seek help through groups such as Myeloma Australia and NSW Cancer Council.

She said that there is strong support available for carers through groups such as the Carer Gateway – an Australian Government program that provides emotional support and free services for carers.

Nurse practitioner Jacqui Jagger outlined the risk to patients ofy their exposure to different types of bacterial and viral infections.

For example, patients are 10 times more likely to contract COVID 19 than the general population.

To minimise exposure to preventable diseases like influenza, pneumococcal disease and shingles, she said it was important to keep all vaccinations up to date.

She outlined the support available to myeloma patients, through Central Coast Myeloma Support Group which meets bi-monthly at Gosford and The Entrance Leagues Clubs.

The group helps patients and carers raise their awareness and knowledge of myeloma and to ask questions and meet others with similar interests or concerns. 

For details email bjarmstrong13@hotmail.com