By Amanda Harvey, QLD

7 minutes

In 2018, I was camping with my husband and daughters who were aged ten and thirteen at the time. One morning I woke up with a sore throat and assumed that I was developing a viral cold. The next day when we were packing up, I really wasn’t feeling well. We drove back to Brisbane, and I assumed after a good night’s sleep I would feel better, unfortunately that didn’t happen.

The next day I was admitted to hospital with pneumonia and anaemia (low red blood cells). Blood tests suggested that I had myeloma. Two days later, I went into respiratory failure and was put on a ventilator to assist me to breathe. My husband was left to explain to my daughters that mummy was very sick and might not make it.

Further tests confirmed that I had myeloma with unfavourable genetic changes, meaning my myeloma was an aggressive type. I stayed ventilated for two days and left hospital the following week, physically weak and mentally battling with the reality that I probably wouldn’t live long enough to support my daughters into adulthood.


In 2019, I had back-to-back autologous stem cell transplants known as tandem transplants. After these transplants I was on maintenance lenalidomide and in remission for 2 years. I then relapsed and was on daratumumab for a year before I relapsed again and started carfilzomib. The carfilzomib didn’t really work for me so in 2023 I had a third stem cell transplant. Amazingly after this transplant and restarting carfilzomib my paraprotein levels stabilised until the middle of 2025.

Along the way I had also been treated with and become resistant (refractory) to bortezomib, lenalidomide and cyclophosphamide. A discussion with my haematologist when I relapsed in 2025 revealed that my treatment options were now limited.

Elranatamab was not yet available on the Pharmaceutical Benefits Scheme (PBS) but could be accessed through a compassionate scheme from the company that makes it. However, this would involve weekly infusions targeting B-cell maturation antigen (BCMA).

I had heard about CAR-T cell therapy which also targets BCMA but was a ‘one off’ therapy. Despite the government promising to fund it, it is still not available in Australia outside clinical trials. Unfortunately, along with many other people with myeloma, I did not qualify for any of the trials available in Australia.

So here was the question, what should I do? What was the next best treatment for me? I read papers and listened to conference presentations about CAR-T cell therapy and bispecific antibody therapy and learnt about T-cell exhaustion. The overwhelming message that I took away was that the best next treatment for me was CAR-T cell therapy.

I started to look outside Australia for a country where I could get reasonably priced CAR-T. The United States of America (USA) and United Kingdom (UK) were out of the question because the cost would bankrupt my family. I started to find newspaper reports and interviews with New Zealand myeloma patients who were going to China for CAR-T. After finding the name of one of the New Zealanders who had been to China, I connected with him on Facebook and after a few texts back and forth, he was kind enough to spend over an hour on the phone explaining his experience in China. He gave me the email address of the professor who had treated him in Shanghai.

I spoke to my haematologist who contacted the haematologist in New Zealand looking after the person I had connected with on Facebook. I emailed the professor in Shanghai asking if they could treat me with CAR-T and a reply came back the same day. The answer was yes.

In my reading about CAR-T, I understood that the lower the level of myeloma you have (your tumour burden) the less likely you are to have severe complications from CAR-T, and the more likely you are to have a better outcome. At that stage my myeloma levels were low and so I made the decision that despite some unknowns, this potentially offered me the best outcome.

I pulled money out of my superannuation to pay for my travel and treatment. I figured that without CAR-T I would not live long enough to need my superannuation. I organised my medical tourism visa and three weeks later I was on a plane to China with my friend as my support person.

When I arrived, I had all the work-up tests and investigations including blood tests, scans and a bone marrow biopsy. They collected my T-cells through a central line and sent them to Beijing to manufacture the CAR-T cells. My husband was then able to join me for the rest of treatment and my friend travelled home.

I received the lymphodepleting chemotherapy to ‘make space’ for the CAR-T cells to do their job, then the CAR-T cells were infused. I stayed in hospital for 2 weeks after the infusion and experienced a low level of cytokine release syndrome (CRS), a common side effect of CAR-T. The CAR-T I received targeted BCMA, and another target called GPRC5D at the same time.

After I was discharged from the hospital, I did become unwell and was re-admitted and treated for a viral respiratory infection. We wanted to be back in Australia for my daughter’s eighteenth birthday and thankfully we made it! I was in China for 7 weeks in total.

I was very well looked after in Shanghai, and the healthcare system was as good as I have seen in Australia and the United Kingdom. Despite the bad press that China gets in Australia, the people are lovely, it is a very safe place to travel, and Shanghai is a modern and efficient city.

There are however cultural differences in their healthcare. The role of nurses is very different. Assistance with daily care like showering as well as emotional and social support is up to you and your support person. This is not something the nurses in China do, so it would have been difficult if I was not independent or needed additional social or emotional support.

When I left China my bone marrow biopsy after CAR-T was negative for myeloma cells and my blood tests since I have been back in Australia show that my paraprotein levels are very low and continue to decrease. Most importantly, I don’t need continuous myeloma treatment, just monthly IVIG infusions to support my immune system.

The difference to my wellbeing is life changing. I have not felt this well in years. Of course, I don’t know how long my myeloma will stay under control and how it compares with CAR-T in Australia. Self-funding CAR-T in the USA and UK costs well over $1 million. My total expenses in China were $110,000, excluding travel and accommodation costs.

Everyone’s journey with myeloma is very personal, and I know that travelling overseas for treatment is not possible or the right decision for many. My hope is that the Australian government stops dragging its feet with its CAR-T negotiations for myeloma, so this treatment can be available and accessible to people living in Australia.

Last year my youngest daughter finished high school, something that I never thought I would live to see. I hope that my new lease on life, however long it lasts, will let me enjoy being with my family just a little bit longer.

Since this story was written, the CAR-T cell product Carvykti (Cilta-cel) has now become available on the PBS in Australia for people living with myeloma after 4 lines of prior therapy.

If you have questions about CAR-T cell therapy, please book a call with one of our Specialist Myeloma Nurses.