By Nigel Holden, VIC

6 minutes
Two people pose in front of a branded event backdrop displaying the Myeloma Australia, My Greatest Call, and Tresidder Insurance Brokers logos. One person wears a dark jacket and light-coloured trousers, while the other wears a light blue patterned dress. The photo appears to have been taken at a Myeloma Australia event or fundraising gathering.

In April 2023, I was diagnosed with smouldering myeloma, a pre-cursor condition to myeloma.

My diagnosis came unexpectedly. My father had died from motor neurone disease (MND) complications in June 2001, and although my brothers and I could have been tested for the gene, we chose not to know.

In 2022, burning sensations and tightness in my feet raised concerns because my father’s MND had begun with similar symptoms. Although I preferred not to know, I discussed my concerns and family history with my general practitioner (GP) for the sake of my immediate family.

My GP arranged a neurologist referral. After nerve conduction tests and extensive blood work, the neurologist confirmed I did not have MND; the symptoms were early-onset peripheral neuropathy. As I was leaving, she added that I needed to see a haematologist about my blood results.

My GP explained that abnormal blood cells in my bone marrow needed further investigation. I had already researched the markers in my results, and although he avoided the word cancer, both my research and his explanation pointed to myeloma, an incurable blood cancer affecting the plasma cells (a type of white blood cell).

My wife joined me for my first consultation with my haematologist, in March 2023, as she would for all later appointments. The haematologist confirmed myeloma and arranged blood tests, a bone marrow biopsy (BMAT), and computed tomography (CT) scans to stage it. She explained that while incurable, it was treatable, with new treatments offering longer life expectancy and good quality of life.

That first consultation began a strong relationship. I was 70, active, health-conscious, fully employed, and otherwise well apart from the myeloma and older age-related blood pressure and cholesterol issues. My haematologist recognised our north-west England accents, having worked in Salford before returning to Melbourne. Learning I was an engineer, she joked that engineers make difficult patients because they research and ask questions. She recommended reliable Australian, United Kingdom, and Canadian information sources, especially Myeloma Australia. I left feeling in good hands, reassured that she cared about my overall wellbeing, and challenged to prove that this engineer could be a good patient.

At the April 2023 follow-up, the bone marrow biopsy (BMAT) showed 15% to 20% plasma cells, and The CT scan was clear of myeloma bone disease. I had no CRAB symptoms (high calcium, kidney impairment, low red blood cells or myeloma bone disease), my IgG and total protein were only mildly elevated, and my paraprotein was 20. This led to a diagnosis of smouldering myeloma rather than active myeloma.

It was recommended I have three-monthly monitoring, and that treatment was not yet appropriate because the risk outweighed the benefit. Treatment would be harder on my body than the smouldering myeloma, it would cause side effects and would not improve prognosis or life expectancy.

My June 2023 review showed no significant change, so I planned a July trip to northern England to see my identical twin and older brother.

While there, I planned to visit The Lowry at Salford Quays, a theatre and gallery my haematologist had mentioned fondly, named after northern English painter L.S. Lowry and home to many of his works.

There, I bought a print of L.S. Lowry’s “A Doctor’s Waiting Room”, which felt meaningful for both my haematologist and me and has become a reminder of an important part of my myeloma journey.

With myeloma, doctors’ waiting rooms become familiar. In the painting, I see myself among strangers who are also companions in a silent struggle built on patience, endurance, and the search for reassurance.

I am not alone. Alongside my immediate family, I have found another family in the myeloma community—people living with, or supporting those with, myeloma. We share experience, advice, empathy, small victories, and setbacks through a bond built on understanding and resilience.

Back in Melbourne, we gave my haematologist the framed print as a memento of Salford. It clearly moved her, and it now has pride of place on the wall behind her desk.

By October 2025, I had connected with Myeloma Australia through support groups and fundraising. I quickly saw the value of its advocacy and support for the wider myeloma community—another myeloma family I hold close.

I also focused on small lifestyle changes to support my prognosis: staying positive, reducing stress, maintaining fitness, and taking up bouldering to build physical reserves for the myeloma or future treatment.

I moved to a mostly plant-based diet with fish and seafood, while limiting or avoiding alcohol and sugar. I may never know whether it helps, but I believe helping myself matters.

By October 2025, my paraprotein had risen twice to 33, prompting treatment discussions. Instead of taking the autologous stem cell transplant (AuSCT) route immediately, my haematologist referred me to an associate professor, a (senior haematologist) at Peter Mac, for a peer review of my now high-risk smouldering myeloma. Along with reviewing my recent bone marrow biopsy (BMAT) and blood results, magnetic resonance imaging (MRI) and positron emission tomography (PET) scans were arranged.

At a follow-up consultation with the associate professor in November 2025, he presented three options:

  1. Option 1: No treatment, with close monitoring. He advised that this would only delay the start of treatment for a limited period, and his preference in all circumstances was to “go early, go hard”.
  2. Option 2: Move down the AuSCT route and be prepared for a reduction in quality of life for 6 to 9 months, covering the induction period, stem cell harvesting and transfusion, and recovery to good health, followed by ongoing maintenance for the foreseeable future.
  3. Option 3: DR-d, a newly approved three-drug combination: daratumumab, a monoclonal antibody by subcutaneous injection; lenalidomide, an oral immunomodulator; and dexamethasone, an oral corticosteroid. This involved six 28-day cycles, followed by ongoing maintenance, with a prognosis similar to AuSCT.

We chose option 3 because it was less harsh, had limited impact on quality of life, and kept future treatment options open if or when the DR-d failed.

The associate professor handed me back to my regular haematologist to commence treatment in January 2026, with ongoing updates and three-monthly teleconsultations with him. The results were remarkable: my paraprotein fell from 34 before treatment to 7 after Cycle 1, 2 after Cycle 2, 1 after Cycle 3, and less than 1 after Cycles 4, 5, and 6. Side effects were minimal and manageable, and I maintained my fitness and lifestyle.

In July 2026, both haematologists classified me as having a complete response, and I moved to maintenance. The associate professor scheduled an August bone marrow biopsy (BMAT) at Peter Mac to assess minimal residual disease (MRD) and establish a baseline for future changes.

I am pleased to say my haematologist now calls me a model patient, and I in return have the highest respect for the medical team caring for me.

The myeloma journey is not straightforward. As my haematologists remind me, myeloma affects everyone differently. It is also a reminder to make the most of what matters most:

Loved ones and family