Living with leukaemia for 22 years


Trevor Steyn had just returned to Cape Town from a holiday on the coast of the Eastern Cape when he began feeling unwell. 

“It wasn’t a prolonged illness, but there was also a slight swelling in my abdomen,” explains Trevor. 

Trevor was just 31 years old, studying for his honours degree and he and his wife had recently had their first child. She took him to Groote Schuur hospital, where doctors took blood for testing.

It was the days before SMSes and cell phones and Trevor was in shock when a telegram arrived the next day at his door asking him to come back to the hospital immediately for more blood tests.  When the head of the haematology clinic called him to tell him that he had Chronic Myelogenous Leukaemia (CML), Trevor had no idea what he was talking about. 

 “They told me I had five years at the most to live,” he says.  “What I did understand from those first few early consultations was that there was no cure for CML and that I would be treated until they could test whether I was a suitable candidate for a blood marrow transplant.”

Risky procedure

But after testing whether any of his siblings were a suitable match for a transplant, the results came back negative. 

“It meant I would have to undergo an autologous transplant where I would undergo a procedure where my own stem cells would be used,” says Trevor.

This is a risky procedure because there is always a chance that a contaminated cell will slip through and begin to multiply.

In the meantime however, he was able to enrol in a clinical trial programme for a new chemotherapy drug to kill the cancerous cells which he responded well to and his condition remained stable for the next seven or eight years. 

“I went for check-ups every two months or so and enjoyed a good quality of life, doing sport and eating and drinking more or less what I wanted to,” he says. 

Clinical trial

Just two years after starting the drug therapy, Trevor’s wife was able to fall pregnant naturally with another baby girl.  Trevor is a priest in the Anglican Church and an advisor on social development issues to local government. 

After weighing up the option of having a bone marrow transplant, Trevor decided to wait and see whether his CML would remain under control. In the meantime, another clinical trial opened up for another new drug, and Trevor was able to sign up for it through a patient assistance programme. 

After two years on the programme, he was informed that there is an improvement in his condition and now eight years later on that drug he is cytogenetic negative and in remission.

“I am now in my 22nd year of living with CML,” says 53 year old Trevor.  “There are some days that I forget that I have a disease.”

Written by Bespoke Communications

Read more:

Random GP visit saves patient
Real hope in fight against cancer
Leukaemia: your questions answered

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