- Diagnosed with chronic lymphocytic leukaemia

Rob's story

60 trips since diagnosis

“I’m one of the lucky ones; no question.”

At 75, Rob has seen every corner of the world, and kept travelling even after getting diagnosed with chronic lymphocytic leukaemia (CLL). In fact, he’s travelled over 60 times since then.

“I’ve had blood tests in Tanzania, Zanzibar, South Africa – and Canada. I’ve even spent 4 nights in a hospital in Alaska.”

And, having spent 22 years of his life with a blood cancer, he has experienced incredible advancements in treatment and technology.

“When I was told I had CLL, the average life expectancy was 8 years. I thought, well, bugger this. I don’t want to die before 60.”

Rob was diagnosed on September 20 2001, the day before his partner Joan’s 50th birthday the next day. “We cancelled the party we had planned; we were too upset.”

Rob’s blood type is O-Negative, which made him a universal blood donor. He had proudly donated his blood 72 times. “But, number 72 was bizarre. I received a letter saying that I should make an appointment at what is now the Blood and Cancer Centre in Wellington. That’s when I got told I had CLL.”

“I thought they’d just tell me I was low in iron or something, so I didn’t think to bring Joan. I just had this shockwave through my body – I heard ‘leukaemia’ – but I didn’t hear a thing.”

Rob believes that if he hadn’t donated blood, his CLL might not have been discovered so early. “Although CLL is not hereditary, I tell my son that he should donate blood. Not only can it save lives, but it can save our life as well.”

Rob has tracked every blood test and CLL drug he has ever taken. Over the years Rob has had FCR (Fludarabine, cyclophosphamide, and rituximab) treatment 11 times, plus 7 additional rounds of rituximab alone.

“I started on 80mg a day of prednisone, and this was back in 2006. I was awake for 23 hours a day! This was before Netflix, so I would get DVDs of TV shows and watch them on my laptop to pass the time.”

“In 2018, my current specialist, Rob Weinkove, one of New Zealand’s top specialists leading the charge in CAR T-cell therapy, said that I might be eligible for a clinical trial of Venetoclax monotherapy. I looked it up overseas and it cost about $105USD per pill. I had to take 4 a day!”

Rob is happy with his life, living with his partner Joan at home in Otaki. He’s very grateful that his blood cancer journey has been managed so well, and he hasn’t lost that lust for travel!

While it currently seems impossible to get travel insurance to cover CLL (partly because the insurance companies are working on updating policies to be in line with modern maintenance treatments), Rob is confident he can get cover for his other conditions.

“I was born on the 4th of July – I couldn’t be more independent, if I tried.”

Fast Facts: CLL

  • The most common leukaemia affecting around 300 Kiwis each year
  • It affects developing B-lymphocytes and usually develops slowly, not always requiring treatment straight away
  • Most patients are over 45 years.