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Kylie’s experiences as an ALL patient, doctor and researcher

Publish Date: 8/3/2018

Leading clinical haematologist and medical researcher, Dr Kylie Mason*, knows what it is like to be taken from your normal day-to-day life after being told you have a life-threatening disease.

This has happened to her twice. Once when she had leukaemia as a teenager, and again when she found out she had a brain tumour, when her son was young.

“Everything else just stops and your normal life becomes less relevant,” said Kylie, 44, of Melbourne, mother of two, Liam, nine and Eliza, seven.

“Having leukaemia in my formative years has significantly affected how I approach my life and my thinking about what’s important.

“Things can change, so I never put off until tomorrow what I can do today because I don’t know what tomorrow brings. I say – hope for the best, but plan for the worst.”

Kylie was diagnosed with ALL towards the end of Year 10, when she was 15. She’d quit gymnastics “because I wasn’t coping so well with it”, then noticed she was short of breath, tired and generally unwell.

She ignored a couple of “episodes” during physical fitness testing at school and didn’t tell her parents about collapsing during a 100m sprint, or waking with a mouthful of blood.

“My brother and I were due to go on tour to Perth with the school band when he saw me after a shower” said Kylie, who played clarinet and piano.

“He went to Mum and told her I was covered in bruises and that I wasn’t managing at school.

“I went to the GP, had blood tests, and that afternoon Mum got a call from the doctor who said: ‘come in, bring Kylie and a packed bag – she needs to go to hospital’.”

Within a few hours Kylie was in the children’s cancer ward having a bone marrow test and, just days later, started intensive chemotherapy. She spent the next three weeks in hospital as well as most of the following six months.

“Children and teenagers with ALL these days still have intensive treatment and still get very unwell, but they can spend more time at school and less time in hospital because of the better supportive treatments available now,” said Kylie.

“They don’t have the bad side-effects like vomiting that we had back in the 1980s because we’ve got much better antibiotics and antiemetics (nausea and vomiting drugs) now,” she said.

Despite spending so much time away from school, Kylie was determined not to repeat year 11 or 12.

“And it was important at the time to keep up with my friends,” she said.

“I worked hard, studied over the school holidays and concentrated on what I had to do. And I was clever about my subject choices, like doing clarinet, which only had one lesson a week and gave me flexibility.

“I had wanted to be a Commonwealth coroner. I liked the intrigue and detective idea of this role that investigates deaths,” said Kylie, who later found out this was a legal, rather than medical, job. 

“Before I got sick I was keen on doing something that was medical science based.

“In year 12, when I was deciding what I should do [career-wise], I had a long chat with my haematologist (who subsequently went on to refer patients to me!) and other doctors and nurses.

“Many felt medicine might be a bit tough going, but everyone was very encouraging, so I gave it a go,” said Kylie.

She finished school on time and got into medicine at the University of Melbourne, aged 17 and having finished treatment.

She was 35 when she completed her medical studies and training 18 years later, after a six-year medical degree and 12 years of specialist training and further study, including a PhD.

“That’s standard training to become a haematologist, but no one explains this to you when you’re at high school!”

Kylie has “quite a few ALL patients”, works across all areas of blood cancer, including non-malignant blood disorders, works on several clinical trials, and specialises in late effects, “monitoring people like myself”.

“Up to 90% of childhood or adult cancer survivors go on to have significant long-term side-effects of cancer treatment, and among the group I was treated with, many have had second tumours or other major medical problems.”

In 2009, Kylie was diagnosed with a brain tumour; the result of radiotherapy that was a standard part of treatment in the 1980s/early-1990s. She had a major operation to remove the tumour, which thankfully was benign, and constantly has her brain, thyroid and heart monitored.

“When I was treated, everyone with ALL was treated the same. It was difficult to determine who was likely to do well or not so well,” said Kylie.

“The principles of treatment are similar today, but the doses are varied and radiotherapy hasn’t been used in most patients for about 20 years.

“More is known about the cytogenetic and molecular changes that contribute to diseases like ALL. This provides a better idea about prognosis and we can stratify people to receive more or less treatment, or more targeted treatment, according to their risk factors.

“This means there are more survivors and today’s survivors are a lot less likely to have some of the long-term side-effects than my treatment cohort,” she said.

“And very small amounts of disease [minimal residual disease] can be tracked, now, so we can work out if the leukaemia is 100% gone or not, when we may need to try some extra treatment.

“Whereas, we just had to wait to see if we would relapse. They [the doctors] thought we were in remission, not knowing there may be this tiny amount of leukaemia there that they couldn’t see.

“I haven’t relapsed but I’ve had a lot of infections,” said Kylie.

In one instance, the medication used to treat a lung infection caused a complication, called aplastic anaemia [a rare blood disorder]. 

“I eventually recovered but there was a time when I was in hospital a lot and quite unwell with no working bone marrow, so I needed a lot of blood and platelet transfusions.”

Kylie’s career highlight was being on the research team that developed the drug called venetoclax that was recently licensed in Australia for chronic lymphocytic leukaemia.

“It will make a huge difference to thousands of people around the world and may have applications in other blood cancers,” she said.

Another “big thing”, as part of her PhD research, was the discovery of the protein that is important in keeping platelets alive for longer.

“This has huge implications in understanding platelet biology and the potential to develop drugs for blood clots and heart disease, and for use in blood banking.

“There’s lots happening; it’s a good time to be a researcher in this area, but far and away the biggest hurdle is funding.”

Kylie, and her fellow chief investigators, received three Grants-in-Aid from the Leukaemia Foundation, in 2010, 2012 and 2014, totaling $300,000.

“These grants contributed a big part to the venetoclax program, without which certain parts of the project wouldn’t have been done as fast, or at the time they were done, or even done at all. All parts of that project were important and made a difference,” said Kylie.

“My overall aim is to make a difference – from my clinical work on a one-to-one patient basis, with a group of patients, through to research – so patients in the future will have better long-term outcomes.

“Everyone – patients, carers and doctors – has such stressful, busy lives.

“There’s no doubt that taking some time out, whether it’s meditation or exercise or spending some time with your kids and keeping life in perspective is important for everyone.

“I exercise, not too much, and love being outdoors. Because of my busy lifestyle – I’m often on call and have young kids – I need something that gives me time out without punishing me for ignoring it for a long time. For me that’s my garden.”

* Kylie Mason is a clinical haematologist and Head of Late Effects (Integrated Department of Haematology, Peter MacCallum and Royal Melbourne Hospital), clinician researcher (University of Melbourne) and honorary senior research fellow (Sydney Medical School, University of Sydney).

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