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Information, insights, even exercise covered at the CLL patient forum

Information, insights, even exercise covered at the CLL patient forum

The Leukaemia Foundation hosted a special CLL patient forum in Melbourne with international guest speaker, Dr Jan Burger, in May 2019. 

He is a professor from the Department of Leukaemia at The University of Texas MD Anderson Cancer Centre, a leading cancer hospital in the U.S., and his key interests are treating people with acute and chronic leukaemias and myelodysplastic syndrome (MDS).

Forum participants during the exercise session.
Forum participants during the exercise session.

Dr Burger also heads a research program that develops pre-clinical and clinical concepts to target the microenvironment in acute and chronic leukaemias.

Exercise and leukaemia was another subject covered at the forum by exercise physiologist, Lauren Young. In her interactive discussion, When exercise is part of the best medicine, she gave details about how exercise can help improve your overall condition and lifestyle, so you can feel better living with a blood cancer.

Lauren explained a range of simple exercises that can be beneficial and how to best manage your exercise routine when living with a chronic disease like CLL. She even got the forum attendees up on their feet to do a 30-second sit-to-stand exercise, to rate their strength, and a standing balance test.

Around 45 people were at the CLL patient forum, some travelling from interstate.

Feedback on the forum’s content, presenters, venue, and overall satisfaction was overwhelmingly positive and many appreciated the chance to meet with other people living with CLL.

“We travelled to Melbourne from Sydney for the conference as my wife, Kim was diagnosed with CLL at the start of the year and we were keen to learn more about the condition and possible treatments.

“It was also a great opportunity to meet the wonderful Kath (Leukaemia Foundation Blood Cancer Coordinator, Katherine Treble) who has been so supportive to us over the phone since diagnosis.

“It was a bonus for us that one of the speakers at the conference covered the importance of diet and exercise in maintaining a healthy lifestyle and we have been motivated to improve that aspect of our lives.

“It was very informative to hear from Professor Burger about the emerging treatments for CLL and it was great that he was able to take so many questions from the floor.

“I hope that the Leukemia Foundation can host these events in the future, and I would recommend these forums to anyone living with CLL.”

Kim and Craig Pendelton, CLL patient forum attendees

Going through treatment has taken the worry out of watch and wait for Patricia

Going through treatment has taken the worry out of watch and wait for Patricia

Patricia at Binalong Bay with her son, Richard Stevenson.
Patricia at Binalong Bay with her son, Richard Stevenson.

Two weeks after retiring in May 2014, it came as “a great shock” for Patricia Stevenson to find out her white blood cell count was 22,000 and she had CLL.  

Patricia, 58, and her partner, Peter Meyer had just sold up in Launceston and moved to their beach shack at Binalong Bay, and she had gone to see the local GP there to establish a relationship.

“He gave me a full blood test because I hadn’t had one for years,” said Patricia.

When the GP called the next day wanting to see her, Patricia expected to hear her liver count was out “from too many red wines” and that she needed to make a lifestyle change.

“Nothing as dramatic as this [CLL]. That diagnosis was like a very big cold shower,” she said.

“When I look back, I was working 50-55 hours a week, wasn’t eating properly, had 2-3 glasses of red per night just to unwind, and I definitely wasn’t exercising like I should, but I do now,” said the former retail store manager whose job before retiring was food and beverage manager for an international airline.

Patricia was referred to a haematologist who she saw 10 days later back in Launceston, and he explained that the CLL might progress or it might not over time.

“There are a lot of unknowns and I struggled with that to begin with… more so than the actual diagnosis,” said Patricia.

“I had a heck of a hard time accepting it. It was a big intrusion.

“And it was bizarre… you feel well but you’re not – that’s a hard thing to come to grips with.”

The next four years saw Patricia on watch and wait, with a blood test and a 350 km trip to and from Launceston for a checkup every six months.

“I call that watch and worry because that’s all you do, and there’s a lot of anxiety before your next haematologist’s appointment,” said Patricia.

“It’s a bit disconcerting, the day I drive to Launceston. I don’t know what he’s going to tell me.

“I had to slap myself into positivity, otherwise I would have been a wreck.”

Patricia’s three children live in Western Australia and during those early years of retirement after her CLL diagnosis, she and Peter “did a bit of travelling on the mainland”.

“We’re quite active, outdoor people and have a caravan. We’re grey nomads, but around here, we’re not interested in overseas travel, just Australia – it’s a beautiful place.

“And Pete’s got children and grandchildren in Hobart who we’d see, and we’d go to Launceston for a couple of days to catch up with long-term friends,” said Patricia about life pre-treatment.

But by March 2019, Patricia’s white blood cell count had reached 99,000. She’d been treated by her GP for several infections including sinus, shingles and a urinary tract infection, and fatigue was interrupting her day-to-day activities.

So, just before Easter this year, she was admitted to hospital in Launceston for her first cycle of chemo – FCR* over four days.

In April 2019, Patricia Stevenson started treatment.
In April 2019, Patricia Stevenson started treatment.

“It went very well, and I felt very good after it. It wasn’t quite what I expected. I came home and everything was great,” said Patricia.

But after the next treatment cycle, and each one since, Patricia had to deal with increasing side-effects; nausea, constipation and diarrhoea.

“And I got travel sickness all of a sudden and couldn’t travel home [immediately after treatment] – it’s just too much, so we stay in Launceston for eight days,” said Patricia.

In July, on day six, she was admitted to hospital with an infection and was neutropenic.

“That wasn’t much fun but I’m very thankful to the Leukaemia Foundation for accommodation right across the road from the hospital.

“When I was in trouble, I basically just had to cross the road to get to the emergency department. That was brilliant,” said Patricia.

“If I’d been back at home, we’re 20 minutes away from the local hospital but it’s very small with limited resources, and for me to get back to Launceston, it’s a 2½ hour drive and that’s not good.”

When Patricia spoke to CLL News, she had been home for a week and had two more rounds of FCR to go to complete her treatment.

“I should be in remission by then and I’ll be back on watch and wait again,” she said.

“The treatment has given me a different perspective on watch and worry. I don’t think I’ll worry so much this time.

Patricia Stevenson and Pete’s granddaughter, Sophie Meyer.
Patricia Stevenson and Pete’s granddaughter, Sophie Meyer.

“Mentally, I’m in a better place now I’ve had treatment than I was before, waiting for it to happen.

“I know this little nasty can be physically treated, and I’ve been through it. I think I will accept the rest of it as just being part of the day-to-day life I’ve got.”

Patricia said it “was a godsend” to happen upon an advertisement for the Leukaemia Foundation’s pilot program for Cancer Concierge** one morning at 4am when she was on Facebook, and she recalled her initial conversation with her haematologist.

“He told me not to go to Dr Google and said the only reputable website was the Leukaemia Foundation’s and I did look through the site, particularly about CLL.

“So, when the ad cropped up, I thought ‘this is reputable and quite a good idea’ so I followed the link, signed up, and I got a call from Katherine [a Cancer Concierge coordinator].

“I was very surprised about what was on offer from the Leukaemia Foundation. I didn’t know there was an office in Launceston, or that there was a support group, or accommodation.

Connecting with the Leukaemia Foundation is massive, it’s like having a safety net,” said Patricia.

Security is what she gained most from the Cancer Concierge program: “to know you’ve got someone at the end of the phone who has a good idea of what you’re going through.

“You’re detached from that person but it’s also sort of personal, and you can say anything to them like ‘I’m having a crap day’.

“If I need to know something, there’s someone there who can answer my questions or direct me to someone else who knows. I don’t feel so alone with CLL.

“Pete’s been magic, from a support perspective, but he has to get out and do normal things otherwise everything revolves around my CLL and that’s not fair to him. So, I kick him out and he goes and plays golf with his male friends.

“But it’s a very lonely experience when you’re not well and you can’t go out and socialise. You have to distract yourself.

“I’m suffering from fatigue at the moment and only have this much energy to get out in the backyard before I have to sit down.”

And that’s when Patricia’s “wonderful lazy boy recliner” is her “best friend”.

‘You live and breathe this cancer all the time and you’ve got to try and forget about it occasionally which is very difficult to do some days,” said Patricia but she has an ipad, a Kindle, and absolutely loves online shopping.

“I’ve actually done all my Christmas shopping this year!

“In the middle of the night if I’m having trouble sleeping, I’ll get up – there’s always something open somewhere to shop. I’ve got every department store in the world at my fingertips, and I read quite a bit as well, once the credit card has gone!

“I get on to the internet for purely frivolous reasons.

“With the CLL, I try to stay off the internet because I can get tangled up in that and get a bit frightened. So I try not to look too deeply, because that’s not healthy as far as I’m concerned. I’d probably see things that I don’t want to.”

Patricia with her partner, Peter Meyer, in the bush near their home in Tasmania.
Patricia with her partner, Peter Meyer, in the bush near their home in Tasmania.

Patricia, who lives on a hill overlooking the Bay of Fires, drives the kilometre down to the beach to walk barefoot “on the beautiful white sand” and stand in the sea, even when the water temperature gets down to 12 degrees.

“It’s amazing how the environment here can pull you back into a positive frame of mind,” she said.

“You have to take the positives out of it all, and the positives are – you’re alive, it [CLL] can be put into remission, you’re going to have a reasonable life afterwards and there are plenty of people out there worse than you.

“It’s a mental battle. You have to tell yourself that the glass is half full not half empty.”

*FCR – combination chemotherapy protocol of fludarabine, cyclophosphamide and rituximab.

**The aim of the Cancer Concierge program is to empower patients to identify their unmet needs and aspirations and have these needs met in novel ways.

Chemo-free drug – Venetoclax – now listed on the PBS for CLL

Chemo-free drug – Venetoclax – now listed on the PBS for CLL

Leukaemia Foundation CEO, Bill Petch with Health Minister, Greg Hunt at the PBS announcement in February 2019.
Leukaemia Foundation CEO, Bill Petch with Health Minister, Greg Hunt at the PBS announcement in February 2019.

The targeted cancer therapy, venetoclax (Venclexta®), is now available through the Pharmaceutical Benefits Scheme (PBS) as another option to treat CLL.

On 1 March 2019, venetoclax – a chemo-free treatment – was listed on the PBS in combination with rituximab (Mabthera®) for people aged 18 years or older with relapsed or refractory CLL, who have received at least one prior CLL therapy and are unsuitable for treatment and retreatment with a purine analogue.

For Consumer Medicine Information on venetoclax, click here.

Leukaemia Foundation CEO, Bill Petch, who attended the listing announcement by the Health Minister Greg Hunt MP, in Melbourne in February, said “this is great news for Australians diagnosed with CLL”.

“Having affordable access to breakthrough treatments is vital for improving quality of life and ultimately surviving their blood cancer,” said Mr Petch.

“We continue to encourage the government to support targeted and innovative treatments ensuring Australians diagnosed with a blood cancer have affordable access as quickly as possible.”

Venetoclax (previously known as ABT-199) was developed over 30 years and is based on an Australian discovery that a protein called BCL2 helps CLL cells survive. Blocking this protein helps to kill and reduce the number of these cancer cells and in turn may slow the spread of CLL.

The Leukaemia Foundation funded early work on the precursor to ABT-199. This research, undertaken by Dr Kylie Mason, Professor Andrew Roberts and collaborators at the Walter and Eliza Hall Institute (Melbourne) through the Leukaemia Foundation’s National Research Program Grants-in-Aid 2010 and 2012, assisted in the development of venetoclax.

Prof. Roberts, Cancer Theme Leader at the Walter and Eliza Hall Institute, said the listing of venetoclax was testimony to the effectiveness of Australian medical innovation.

“New medicines don’t happen by accident. They are the result of careful laboratory and clinical research over many years.

“In the case of this drug, Australian scientists and clinical researchers played prominent roles, demonstrating that Australia is a key player in globally significant translational research,” Professor Roberts said.

Further support is critical to ensure all Australians can reap the benefits of scientific advancements. If you would like to invest in blood cancer research, contact us 1800 620 420 today to find out how.

Cancer Concierge Pilot: Assessing CLL needs and providing targeted interventions

Cancer Concierge Pilot: Assessing CLL needs and providing targeted interventions

More than 80 people with CLL signed up for the Leukaemia Foundation’s Cancer Concierge pilot program that ran for six months, is now closed, and is being evaluated.

Kim Pendelton, a participant in the Cancer Concierge pilot program, with Cancer Concierge Coordinator, Katherine Treble.
Kim Pendelton, a participant in the Cancer Concierge pilot program, with Cancer Concierge Coordinator, Katherine Treble.

Anecdotally, positive responses are coming through from participants about the support they received, according to the Cancer Concierge coordinators, Katherine Treble and Sheila Deuchars.

The Cancer Concierge pilot program was a natural progression from the CLL My Way wellness pilot program, which was reported in the last issue of CLL News.

Developed by the Leukaemia Foundation with support from Janssen and the CLL Australian Research Consortium and conducted in 2018, CLL My Way mapped the CLL journey and identified unmet needs.

Signing up for the pilot

The Cancer Concierge pilot program was advertised through Facebook from November 2018 to early-February 2019 when recruitment was closed having reached its target.

Participants could tap into the service through referral from a health professional or self-refer via the social media recruitment campaign.

“Interestingly, out of 167 inquiries, we only received one referral from a haematologist,” said Katherine.

“What that demonstrated to us is that health care professionals aren’t readily identifying the unmet needs of the CLL population and are missing the opportunity to refer people for supportive care.

“And the high level of inquiry demonstrated that people do have needs when they are living with CLL and there are a lot of vulnerable people who could benefit from support to live well with CLL. This is in line with the findings of CLL My Way.

“Cancer Concierge is a tailored and personalised program which assists people to navigate the disease and the health system through the provision of support, resources and interventions to meet those unmet needs,” said Katherine.

Pilot demographics

Participants in the Cancer Concierge pilot came from all states and territories, were aged in their early-40s to late-80s and covered all stages of the CLL blood cancer journey – newly diagnosed, watch and wait and those in treatment.

By far, the largest group of participants on the pilot program were the 50 people on watch and wait (which the Leukaemia Foundation refers to now as observe and learn*). Six people were newly diagnosed with CLL; 10 were new to treatment; and 10 participants were on second line treatment – seven on ibrutinib (Imbruvica®) and five on other treatments/clinical trials.

Assessing needs

Initial assessments were undertaken, with the Cancer Concierge assessment tool completed by each participant with CLL.

“Participants identified their own unmet needs,” said Katherine, and to meet those needs, interventions were provided around four key topics:

  • physical wellbeing
  • emotional wellbeing
  • social wellbeing
  • observe and learn.

“These interventions were personalised and individualised and provided in order of greatest need to least need.

“The assessment tool enabled us to identify exact areas where people needed support and guide interventions in those key themed areas. We were able to hone in on those specifics, based on what they told us in their assessment,” explained Katherine.

Physical wellbeing

A lot of the physical wellbeing themes raised around challenges with the management of fatigue are related to CLL.

“So, providing some support and resources that acknowledge fatigue, discussing strategies that someone can implement to alleviate or improve their fatigue and energy levels, and having conversations about pacing themselves, planning their day and prioritising tasks, can all help to maximise their energy levels,” said Katherine.

“But sometimes physical wellbeing is about dealing with the physical presentation of the disease.

“Some people have quite large lymph nodes and that causes a lot of uncertainty and worry, or they may change the way they dress, such as wearing a high-collared shirt to cover up the lymph nodes in their neck.”

Emotional wellbeing

Katherine cited two different examples – somebody with a low score in emotional wellbeing could indicate their needs were due to a lack of emotional support from family and friends, while another person’s emotional wellbeing needs may relate to anxiety around the uncertainty of the disease.

“If they were in the watch and wait phase, they couldn’t celebrate the fact that they didn’t have to have treatment because they were worried about their disease progressing,” said Katherine.

“Our support was about listening to their concerns and empowering them through information and understanding. Sometimes it was about connecting participants with psychologists for further support to manage that anxiety and for strategies to cope day-to-day with that uncertain situation and the chronic nature of their disease.”

For those living with a chronic disease, getting the emotional support they need is crucial.

“Family and friends don’t always acknowledge that they are unwell or understand the inconsistency or variability of their disease, and that it is a day-to-day proposition; some days are good, whilst other days are not so good,” said Katherine.

Social wellbeing

Sometimes people with CLL can’t agree to a social engagement or they withdraw from an agreed social engagement because they’re not feeling well.

“They grapple with not wanting to burden family and friends in seeking emotional support which can lead to withdrawing or isolating themselves from friendship groups,” said Katherine.

“They found the fact that we [the Leukaemia Foundation] can provide emotional support and information meant we could be that support person for them. Then they could rely on their family and friends for the social connection more so than for emotional/disease support.

Observe and learn

This theme focused on building knowledge and empowerment.

“We explored an individual’s thirst for knowledge about their disease and the symptoms they were experiencing,” said Katherine.

“We could then improve their understanding or help them clarify their understanding regarding topics like the disease itself, treatment, genetic testing and symptom management.

“Some people were in watch and wait at the beginning of the Cancer Concierge pilot and, by chance, progressed to needing treatment during the program, so their needs changed.

“They had different requirements for information when they needed treatment. That was a theme that came out of CLL My Way – ‘give me the right information at the right time’.

“People felt overwhelmed by information from the outset of their diagnosis and, if they were in the watch and wait phase, they didn’t necessarily need knowledge about treatment.

“But when they were going into treatment – that’s when they needed this information, when it had context,” said Katherine.

Use of automated journey technology

CLL patient journey illustration

An automated digital journey was trialled as a way of delivering information and resources to the CLL participants enrolled in the pilot, with support provided through a combination of SMS messages, direct telephone contact, and follow-up emails.

Starting with a person’s greatest need – identified from their assessment results – their support began with an SMS message on that key topic. This prepared them for a phone call several days later from the cancer concierge and discussion around that topic.

The participant then received a follow-up email that included resources related to that topic.

“Each person’s needs were different, and the flow of information was based on their needs.

“Some people might benefit more from the regular person-to-person conversations (the human interaction) while other people might have benefited more from the resources they could look at in their leisure,” said Katherine.

Future applications

LF cancer concierge pathways illustration

The Leukaemia Foundation is currently evaluating the program.

“What we learn from this pilot will help inform the services we provide in the future,” said Katherine.

“Part of our evaluation will be about understanding and interpreting how beneficial the program was in meeting individual needs as well as reviewing themes within the data that will assist to improve our service offerings for people living with blood cancer.

“There are plans to apply this same program format to another blood cancer population. This will help the Leukaemia Foundation to determine if there are translational themes that emerge in other disease types and understand if this program is suitable for various blood cancers, not just CLL.

“We will see if this way of assessing peoples’ needs and providing targeted interventions can be supported in other disease groups and shape the delivery of Leukaemia Foundation support services moving forward,” said Katherine.

“A large proportion of the participants had never tapped into the Leukaemia Foundation’s services before the Cancer Concierge program, so it’s also been a great way to get people engaged with our services.

“As the program draws to a close, we’re letting participants know that our support is never-ending and is always available through our blood cancer support coordinators, despite the completion of this pilot program,” she said.

We will report on the findings of the Cancer Concierge program in a future issue CLL News.

*This notion arose emerged in the CLL My Way program as a participant-driven response suggesting ‘watch and wait’ was ‘watch and worry’ and that theme had a negative connotation. The alternative suggestion was ‘observe and learn’ which was integrated into the Cancer Concierge pilot whereby participants observe their bodily symptoms and become in tune with themselves and learn about their blood tests and disease along the way. ‘Observe and learn’ has a more empowering connotation compared to the inherent negativity of ‘watch and wait’, or ‘watch and worry’, and has been positively received.

Matt travels to the other side of the world for his ‘miracle drug’

Matt travels to the other side of the world for his ‘miracle drug’

Matt on holiday in Canada
Matt on holiday in Canada

The following are all Matt’s words, shared with the Leukaemia Foundation to help raise awareness of blood cancer during September’s  Blood Cancer Awareness Month  2019. 

This is my story of a journey with a rare form of blood cancer know as; Hairy Cell Leukaemia variant (HCLv). It’s had me on the ropes a few times, but for now I’ve got the upper hand and it’s under control.

I was diagnosed in January 2004 with Hairy Cell Leukaemia (HCL) when I was 40 years old. I had gone to my GP for a general check-up and to ask him about the swelling in my abdomen, which I subsequently found out was from an enlarged spleen, caused by the infiltration of leukaemia cells. I had worked full time for about 20 years at that stage, and was due to take a redundancy payout in the same week that the diagnosis was made. So it was a time of change in my life. The end of a long period of employment at Channel 7 in Perth, and also the end of my previously good health.

My GP was away on leave at the time I was diagnosed, and I recall the doctor on duty saying to me when the blood test came back, “If there’s anything you want to do, you better do it sooner rather than later”…..

I went home, told my wife, and we both had a good cry. Nevertheless, that grim outcome prediction has inspired me to do my best to prove it wrong.

Matt and his wife visiting Niagara Falls
Matt and his wife visiting Niagara Falls

I was quickly referred to a haematologist, who did a bone marrow biopsy straight away, and decided it was Hairy Cell Leukaemia (HCL). The diagnosis acknowledged that it wasn’t clearly HCL, but it was decided to treat it as if it was. In March 2004 I did a cycle of the standard first preference treatment option for HCL known as Cladrabine. The disease was well advanced at that stage, and I failed to gain much more than a slight reduction of disease burden overall. I did get a good initial response in my peripheral blood, but due, in my opinion to the large volume of cells in tissue, such as my spleen, it wasn’t long before I was back where I had started. That was a significant disappointment, as many people with the classic form of HCL do very well when treated with Cladrabine and can have long sustained remissions.


My next option was to have the spleen removed. It was very enlarged in size from the infiltration of leukeamia cells. It took me quite a long time to feel sure I was ready to have the operation. All surgery comes with risk, and the operation to remove a spleen, which by now was larger than a new born baby, carried additional risk from bleeding complications.

Salmonella scare

To complicate things further, before I had the splenectomy, I caught a dose a Salmonella poisoning. A serious bacterial infection by itself, it’s double trouble for someone with advanced leukaemia. I went to the hospital not knowing what the problem was, and as I waited for the results to come back from blood tests, I felt myself slipping away. I had a distinct feeling, a knowing of certainty, that my body had given up the fight. I felt calm and as I lay alone in the isolated room I had been moved to, I wondered why the room wasn’t full of people who had come to say goodbye to me, if today was to be my last day.

Everything faded toward white, and then in came the nurse, cheerfully informing me that I had Salmonella poisoning. An appropriate anti-biotic was placed it the saline drip attached to my arm, and within half an hour, I was sitting up in bed, on the mend. An astonishing experience that showed to me not only how tenacious our hold on life actually is, but just how quickly the human body can bounce back to ‘normal health’ once the disease burden is removed.

4.6 kilos lighter

My enlarged spleen was removed in October of 2004. The operation went without a hitch. I felt relieved to be freed of the burden of such a large ‘thing’ in my body. It had been drained before it was removed, but still weighed in at 4.6kg. It was indeed huge. Over the next year or so, my body responded to the decrease in disease burden, by restoring itself. No further treatment was administered, and the leukaemia content in my blood was decreasing. In terms of blood counts, I returned to almost normal health in 2008, but by the end of the next year, my hairy cell count was increasing again. I had another cycle of Cladrabine in May 2010. Once again a good response short term, but the disease bounced back quickly.

By 2011 my white cell count (which includes hairy cells) was over 100 (the normal range is between 4 – 11). I felt as though I had sand going around my veins, and could hardly move because of the severe fatigue I felt. I tried about four cycles of Rituximab. Again, slight improvement each time, but none overall, as the disease marched on. The drug ‘Interferon’ was next up, but there was no improvement at all, after some months of trying.

To transplant, or not to transplant…

I started asking my doctors if bone marrow transplant was an option, and also raised the question of my diagnosis again, with a view to the possibility that I had the ‘variant’ form of HCL. I was referred to another specialist, and upon meeting, it was agreed that my prognosis was very poor and that I probably wouldn’t be alive by the end of the next year, unless something was done to control the disease. We tried a cycle of HiDice chemotherapy. The response was sub-optimal. Then came two cycles of HyperCVAD armB chemotherapy. I’d never heard of these drugs being used for HCL before or since, but I needed something out of the ordinary, and it was going to have to be strong. After the second cycle, there was no HCL to be found in my peripheral blood or bone marrow. It was a complete success at the time, other than in my lymph nodes where we subsequently started to notice some swelling.

While my blood was clear of HCL cells, we collected stem cells, for a possible future self-transplant if required. I enjoyed an improved outcome for a few years using Rituximab on occasion, to keep the disease under control.

Matt running in the City to Surf Marathon in 2009
Matt running in the City to Surf Marathon in 2009

I managed 2nd place in my age group in the 2013 Perth Marathon, so things must have improved a bit! I felt quite well. However, by mid 2014, I was getting strong pain in my neck from pressure caused by the swelling lymph nodes. The HCL population was on the increase, and not even the strongest chemo was getting into the lymph nodes where the cells were hiding. My peripheral blood and bone marrow were still clear of hairy cells, but nothing was having much effect on the cancer in my lymph nodes.

I had my third and fourth cycles of HyperCVAD armB in September and October of 2014 and the overall reduction in swelling I would say was in the order of sixty percent. Not enough to halt the disease. The ongoing pain from swelling lymph nodes throughout my upper body, was hard to live with, fatigue was increasing, and the disease was winning the battle.

Bone marrow transplant was again considered, as my options were not looking good. My one and only sibling, my elder sister, was found to be a suitable match, and she donated stem cells to me. They’re kept in a freezer at the hospital. I wasn’t keen on the transplant option though, as it comes with high risk. It’s an option I have up my sleeve for the future if required.

The (long) road to Ibruntinib

My specialist then tried to get the drug Ibrutinib for me. The compassionate access program is available to Australians who have run out of options and need help in order to sustain life. We tried that option, but Ibrutinib had not been used for HCLv outside of clinical trial, and so in the end the company that owns the drug declined to supply on the grounds of “insufficient data to prove efficacy in the treatment of HCLv”.

I decided I should extend my Google searching outside the bounds of Australia, and found a clinical trial in the United States that was recruiting HCL and HCLv patients to test Ibrutinib. I contacted the trial doctors directly myself, and as I fulfilled the essential criteria, was admitted to the trial. I believe it’s the only trial in the world for HCL patients to try Ibrutinib. I started taking Ibrutinib in July 2015, and for the first year I had to be at the clinic in Washington DC for testing every four weeks. I’m not sure if the disease or the travel was harder to live with in that year!

The ongoing travel requirement has become a psychological hurdle to be overcome. Long-haul flights from Perth to Washington have started to take their toll, and I now travel with my wife in order to ‘survive’ the ordeal.

Matt taking his first dose of Ibrutinib
Matt taking his first dose of Ibrutinib

I’m now only required at the US clinic once every twelve weeks. The NIH hospital in Bethesda, near Washington, is a government funded research only hospital, and so all hospital costs are covered by the US federal government.

All the travel costs are paid by me, and I would like to acknowledge the support in this and so many ways that my family has given me.

Complete remission

I achieved a complete remission with no measurable residual disease, in mid 2017. No hairy cells to be found anywhere. none at all.

Finally I had found what looks to be a solid long term solution for me. I experience no negative side effects from taking Ibrutinib every day, and with a bit of luck, it will hold me a ‘chemically sustained remission’ forever.

I will have to travel to the US every twelve weeks to attend the clinic for the foreseeable future, until Ibrutinib is approved for use, firstly in the USA, and then with a bit of luck in Australia.

Creating hope for others with HCLv

Matt off on another long-haul flight to Washington DC
Matt off on another long-haul flight to Washington DC

At the time of my last visit to the US clinic in July this year, I was the only HCLv person on the trial, and therefore the only one in the world, to have achieved a complete remission on Ibrutinib.

My continued inclusion on the trial therefore, is of considerable importance to those of us who have HCLv now, and in the future. Without my solitary tick in the ‘complete remission box’, the trial results would not be looking as promising for the approval of Ibrutinib to treat HCLv patients.

Matt visiting the Stirling Range, WA
Matt visiting the Stirling Range, WA

It has been a miracle drug for me, it may well have saved my life, and has returned me to ‘full health’. I do hope that other HCLv patients will have the opportunity to try this easy to tolerate drug in future too. If they respond to it as well as I have, they would wonder how they ever could have lived without it.

Australians unite for Light the NIght

Australians unite for Light the NIght

Thursday October 10 2019

On Friday 11 October more than 35,000 Australians will unite to walk together to shine a light on blood cancer at the Leukaemia Foundation’s annual Light the Night event. For the first time, this year they’ll also be walking as one towards a bold new goal…Zero Lives Lost to Blood Cancer by 2035.

The beautiful Light the Night lantern walk is the only event in Australia that brings the country’s blood cancer community together, with crowds creating a sea of glowing support for Australians affected by blood cancer.

In a show of national support towards this new goal, Light the Night events will be held simultaneously across Australia on the same night, with flagship events happening in Sydney, Melbourne, Brisbane, Adelaide and Perth on 11 October and more events planned in regional cities and country towns across the nation.

Leukaemia Foundation CEO Bill Petch said Light the Night is a time for all Australians living with blood cancer, their families, carers and friends as well as the medical and research communities to stand united in support for each other and in support of a better future.

“This is an opportunity for the community to band together and transform the darkness into an ocean of light and support to give hope to all those Australians impacted by blood cancer, to reflect on your own personal blood cancer journey, or to remember loved ones lost,” he said.

Participants carry lanterns in symbolic colours of blue, white and gold on a beautiful, reflective walk.

  • Gold … to remember loved ones lost
  • White … to honour those battling the disease, and those who have won the fight
  • Blue … to show support and hope for a cure for the future

Event Details: Light the Night Melbourne
Federation Square, Melbourne
5.30 pm – 8.30 pm
To find our more and to register go to

Event Details: Light the Night Sydney
Bradfield Park, Milsons Point
5.30 pm – 8.30 pm
To find our more and to register go to

Event Details: Light the Night Brisbane
South Bank Piazza, South Bank Parklands
5 pm – 7.30 pm
To find our more and to register go to 

Event Details: Light the Night Adelaide
The University of Adelaide, Maths Lawns
5 pm – 8 pm
To find our more and to register go to

Event Details: Light the Night Perth
Elizabeth Quay, Perth
5 pm – 8 pm
To find our more and to register go to

The Leukaemia Foundation recently released a first-of-its-kind nationwide report titled State of the Nation: Blood Cancer in Australia. The report details the true size, scale and impact of blood cancer and the lived experiences of people living with blood cancer in Australia today.

Mr Petch said the comprehensive and evidence-based report shows that blood cancer has been underestimated and underreported. It identifies that blood cancer is now more significant and prevalent than ever before and that diagnosis rates are on the rise across the country.

Every day another 41 Australians are diagnosed with a blood cancer – the equivalent to one Aussie every 36 minutes. Blood cancer still claims more lives than breast cancer and melanoma and sadly 20 Australians lose their life to blood cancer every day.

Mr Petch urged Australians to come together for an unforgettable experience in support of the blood cancer community to help work towards the Leukaemia Foundation’s new goal of zero lives lost to blood cancer in Australia by 2035. This goal has been announced as part of the release of the State of the Nation: Blood Cancer in Australia report.

“We face many challenges ahead, however the report offers us the opportunity to empower patients, to reform the blood cancer ecosystem and to light the way forward,” Mr Petch said.

Mr Petch said due to research survival rates are improving– but there’s still a long way to go.

“The Leukaemia Foundation’s commitment to advancing blood cancer research is as strong as ever. Since 2002, the Leukaemia Foundation has invested more than $50 million into research, producing ground-breaking results and supporting the academic and research career of almost every senior haematologist in Australia,” he said.

“But with 110,000 Australians living with blood cancer or related disorders and diagnosis rates on the rise, more research into understanding the causes, creating better treatments and ultimately to finding a cure for blood cancer is urgently needed.”

Mr Petch said funds raised through Light the Night would be directed into the Leukaemia Foundation’s National Research Program to continue the fight for a cure for blood cancer.

“Light the Night lantern holders can become part of the solution by supporting research to help more Aussies survive blood cancer” he said.

Australians are invited to find out more about event details and locations and to become a part of Light the Night today by signing up now at Australians can also reserve lanterns to pick up on the night, or lanterns can be purchased at the event.


About the Leukaemia Foundation’s State of the Nation: Blood Cancer in Australia report:

A visual summary of the report’s findings available here: 

WhiMSICAL study – on the way to 1000 participants and ‘big data’

WhiMSICAL study – on the way to 1000 participants and ‘big data’

WhiMSICAL group
“This is a major achievement,” said Dr Ibrahim Tohidi-Esfahani, principal investigator of WhiMSICAL.

The diagnosis, treatment, symptom and side-effect details of more than 400 people with Waldenström’s macroglobulanaemia (WM) from 18 countries are recorded on the WhiMSICAL study – the first global WM registry.

This ethically approved and secure database, that went live in June 2016, enables people with WM to directly contribute their own data to advance research in this field.

Dr Tohidi-Esfahani’s “big lofty goal” is for 1000 people with WM to be on the database, and as it grows “the data becomes more powerful and useful”.

Our aim is to get ‘big real-world data’ to help map quality of life (QOL) and treatment data, especially for the Bruton tyrosine kinase inhibitors such as ibrutinib (Imbruvica®), and to support the study’s ultimate goal; to improve QOL and survival.

“We’ve managed to break our 400-patient barrier – the cut-off point we needed to reach before collating the study findings in a manuscript,” said Dr Tohidi-Esfahani, who plans to submit the manuscript later this year for peer review and publication in a leading international haematology journal, and share the findings with the study’s participants.

Interim research findings have been presented at four international meetings, including this year’s European Hematology Association congress, in Amsterdam, and the ICML International Lymphoma meeting, in Switzerland, both in June.

Dr Ibrahim Tohidi-Esfahani, principal investigator of WhiMSICAL.
Dr Ibrahim Tohidi-Esfahani, principal investigator of WhiMSICAL.

Another important milestone is the completion of a validation study comparing data from WhiMSICAL with clinical data in an Australian cohort of 30 patients and Dr Tohidi-Esfahani said the result – a positive correlation of 83% or more for each data point – “was very pleasing”. This demonstrates the accuracy of the WhiMSICAL data and disputes the commonly held belief that patient-derived data is not very reliable for research purposes.

Andrew Warden, of Sydney, who has been living with WM since his diagnosis in 2003, and who played a key role in setting up the WhiMSICAL registry, was awarded the Judith May Volunteer Award by the International Waldenstrom’s Macroglobulinemia Foundation (IWMF) in Philadelphia in June.

“We are very proud of Andrew and his efforts to improve the breadth of information available on WM and his tireless energy in driving the research forward and improving the database,” said Dr Tohidi-Esfahani.

Andrew Warden receiving the Judith May Volunteer Award from the IWMF in Philadelphia in June 2019.
Andrew Warden receiving the Judith May Volunteer Award from the IWMF in Philadelphia in June 2019.

QOL questions included in survey

In October last year, a quality of life (QOL) questionnaire* was incorporated into the WhiMSICAL survey and over 200 patients have already answered these additional questions.

“Now we can compare the QOL scores of this WM cancer cohort to reference ranges for healthy controls available in the literature; that’s the power of this QOL questionnaire,” said Dr Tohidi-Esfahani.

“We’re starting to map QOL data to the treatments patients have had and this is especially important information that will guide funding bodies [such as the Pharmaceutical Benefits Advisory Committee] for the approval of drugs, and clinicians in their treatment decisions.”

An estimated 700-1000 Australians are living with WM. This figure is based on our incidence rate being similar to that in the U.S. (three per million population per year) and an average survival rate of up to 11 years from diagnosis.

No national registry for WM in Australia

Dr Tohidi-Esfahani said “no good data” exists on the exact number of WM patients in Australia as there is no nationally coordinated registry to record all diagnoses. This gap is due to Australia’s separate state health systems, where data [that is collected] is in silos and not entered into one database.

“To do that would be both difficult to run and costly,” said Dr Tohidi-Esfahani.

Attempts at gathering Australian WM data are being made through the Lymphoma and Related Diseases Registry, based at Monash University (Melbourne) and the Uncommon Lymphoma Registry that is part of the ALLG National Blood Cancer Registry and which is being established by the Australasian Leukaemia & Lymphoma Group.

“This registry – WhiMSICAL – is relatively very cost-effective and has ethical approval to capture data from patients anywhere in the world,” said Dr Tohidi-Esfahani.

When this story was published, 101 Australians had participated in the WhiMSICAL study – that’s about 10% of all Australians with this rare form of lymphoma.

“We would like more than 50% of all Australians with WM to join the database and it would be fantastic if we got closer to 100%,” said Dr Tohidi-Esfahani.

“It’s not difficult to participate, but it does take time and we are streamlining the process.

“Every individual only has to put in a small amount of time and if you are newly diagnosed, it takes even less time.

“This individual effort required is significantly less than the almost prohibitive amount of time that a clinical registry team would need to have such a large database; the power of the many achieves a lot of data and information for very little time and money.”

Number of unique front-line WM therapies worldwide “incredible”

Early analysis of the study data reveals that worldwide, 238 patients had 41 unique frontline combination therapies, which Dr Tohidi-Esfahani describes “as incredible”.

Sunburst chart showing treatment diversity – 41 unique first-line combinations entered by 238 patients.
Sunburst chart showing treatment diversity – 41 unique first-line combinations entered by 238 patients.

“To me, the fact there’s such a variety in the range of treatments people are getting outside of a clinical trial environment suggests a poor understanding of the best treatments available for WM.

“And the importance of this real-world data is to demonstrate the need for better consensus on what treatments to utilise and better education for patients and clinicians.

“In Australia, the data showed 17 first-line therapies in a cohort of 90 Australian patients (as at April 2019). That is less concerning, but still enlightening to the fact there isn’t well understood consensus on the guidelines here,” he said.

According to Australian clinical practice guidelines for the treatment of WM, introduced in January 2017 and international guidelines released in 2016, there are six different treatment combinations recommended for first-time treatment.

“It will be interesting, moving forward, to see the diversity in those more recently treated and whether there has been a significant improvement or not following publication of guidelines,” said Dr Tohidi-Esfahani.

“That will be a very important question to ask of the data we are generating.”

WhiMSICAL partners with patients

With a lot of research, Dr Tohidi-Esfahani said “patients are just voiceless participants”.

“But by forming a meaningful partnership with patients and having patient investigators on the study, patients get a say as to what questions are being asked in this research.

“They can make a significant contribution to the questions we should ask that are most important to them, the affected patient community, and some questions may be added or taken out.

“Since the beginning of the study, we’ve been adamant that every aspect of this research incorporates both the clinician and the patient investigator,” said Dr Tohidi-Esfahani.

“This is to ensure the ultimate aims and goals of the research are meeting the needs and providing answers to the patient community.”

EORTC QLQ C30 has been used extensively and validated in cancer cohorts for 20 years. It is the longest and most comprehensive survey for comparing QOL over time, for different cancer cohorts and different treatments, with healthy controls. There are now ‘normal ranges’ of QOL, to compare to a cancer cohort.

Bronwyn advocated for when and where she was treated

Bronwyn advocated for when and where she was treated

Bronwun and her three children
Bronwyn with her children, Maggie, Miles and Grace: “The family shot is Christmas post-treatment with the wig my dear friend lent me after her chemo journey.”

By the time Bronwyn Bisley was finally given a diagnosis, via Skype in April 2018, she already knew she had Hodgkin lymphoma (HL) – she’d worked that out for herself!

‘I’d done enough online research, exactly what you’re not supposed to do. I thought it couldn’t be anything else, I’d looked up the symptoms. I knew it was Hodgkin’s,” said Bronwyn about her complex and “very long journey” to diagnosis.

Bronwyn’s life was busy, as a single mum, raising three children, then aged 13-16, and a teacher working full-time “for financial reasons”. For eight years, they’d all lived on a “big horse property” at Tatura, a 25-minute drive from Shepparton (Vic), which she looked after for friends, and it took a lot of effort “to keep beautiful and nice”.

Her eldest child had been three when Bronwyn and her husband separated.

“One of my children is deaf/blind, so I had that experience to go through and upskill, another was really ill for a year and that a took a lot of energy, and my ex decided to take me through family court for five years which was tough as I couldn’t afford legal support,” said Bronwyn.

Bronwyn and her brother Cameron
“My brother, Cameron, came down from Queensland and stayed for a week at a time. My favourite saying, that he gave me when I gave up chemo the first time, was ‘look at it as a glass half full’… you have 50% chance of recovery not recurrence. He was amazing.”

Her long journey to being diagnosed

“As a teacher, we always say – ‘you get to the holidays and you get sick’.

“I was getting to the end of what I could manage personally, and I got sick,” said Bronwyn about the Christmas holidays of 2017.

“I was working hard on the farm and in the garden and noticed if I had a glass of wine, I had lots of symptoms. I was feeling okay, but pretty flat. I was bloated in the face and could feel a swelling in my neck when I swallowed.

“I decided to go to the doctor but couldn’t get in for three weeks and by that stage I was back at work.

“The doctor couldn’t feel anything but sent me off for a CT scan which was a big deal because they are expensive.

“They found some hot spots, mainly in my breasts, and were positive it was breast cancer, but no diagnosis.

“I was sent to an oncologist, which was all very scary, but I thought it would be nice to know.

“It went on and on… lots of appointments, CT scans, biopsies, this and that, surgery on my breast to remove two lumps and still nothing. Eventually the oncologist said, ‘no I don’t think it’s breast cancer – it’s something else’.

“A haematologist contacted me in April and said, ‘there’s been lots of stuffing around, could you come to Melbourne and we’ll do a proper biopsy?’.

“I said sure, that will be great, let’s get to the bottom of this, and finally a diagnosis arrived via Skype at the end of April 2018,” said Bronwyn, who was 48 at the time.

“She [the haematologist] basically just said ‘you won’t take in too much now, this is all a bit overwhelming, do you have any questions?’.

“I didn’t really know what to ask,” said Bronwyn, who was told she would have six months of chemotherapy with four drugs* at Shepparton.

“Then I didn’t see her again for a really long time.”

Bronwyn on her birthday
“My birthday, in the middle of treatment. Feeling terrible.”

Bronwyn’s treatment experiences and decisions

First, she had to wait before starting treatment until she healed from having surgery to remove the lumps and “a fair chunk of one breast”. They weren’t cancerous.

“I was a bit worried about the chemotherapy,” said Bronwyn, her concern being the late-effects of having the treatment on her future quality of life.

“And being off work for six months absolutely floored me. I couldn’t think of anything else apart from how the hell I was going to manage that and pay to live.

“I told the kids ‘it’s Hodgkin’s… no problem, we’ll knock this over’. They weren’t that alarmed and seemed to cope pretty well. Nothing much changed for them. My strategy was – they’re not at fault here, so how can we keep their lives mainstream”

All Bronwyn’s family live in Queensland, but her brother and sister were both able to tag team, staying on and off with Bronwyn at Tatura over the next six months.

But Bronwyn didn’t cope well with the fortnightly regimen* of chemo at the oncology centre at Shepparton, and after the first few months she decided to stop treatment.

“I was really, really ill and couldn’t stop vomiting,” she said.

“No-one was managing my symptoms and having the four drugs was taking up to four hours. With lots of sitting around waiting for the next drug, I was getting really distressed.

“And I couldn’t contact my doctor and hadn’t seen her for a few months.

“The nurses were fantastic, but they were constantly understaffed. Every time I went in, it just took longer and longer, until the last time, when I said – ‘look, I’m not coming back’.

“I didn’t want to be on that factory line for six months, having no discussions with my haematologist, and with me being that sick and getting worse.”

When her first PET scan “was pretty clear”, she decided to seek other advice.

Bronwyn celebrating with friends
“Celebrating the end of chemo and radiation.”

Taking control of the ‘what, where and when’ of her treatment

“I gave myself a few weeks off, to get more information. I spoke to some alternative therapy experts and friends helped me find a haematologist in Melbourne who wouldn’t treat me like a number, and I was happy to go private if I had to.”

After getting the same recommendation from four different people, Bronwyn made an appointment with another haematologist and went down to Melbourne to weigh up her options.

“She gave me the time of day – an hour and a half discussion – and understood straight away, saying ‘no one needs to be vomiting, we can stop that immediately’.

“So I went back to chemo, for a few rounds, and could do really low-dose radiation as well, which I elected to do, combined with some pretty severe lifestyle changes.

“I never vomited again and never had the horrendous symptoms, so the whole thing was very different.

“I had one person assigned to me and everything was really quick. The first time was so fast, I was like – oh, did I get all four [drugs]?

“Then I was waiting to feel sick and the anti-nausea medication actually worked!

“Everything just became a lot better, not so much that I wanted to keep going on chemo! But it was much more manageable, and I felt like if I had a problem, there was someone there to solve it immediately.”

And, based on all the research she’d done and the journal articles she’d read, Bronwyn decided to have supplements and natural therapies as well, when she wasn’t actually having the conventional treatment.

“Nothing super weird, just really good nutrition,” she said.

“And I exercised all through chemo. I walked every day. I’d read that is really valuable, particularly straight after treatment.”

“My family was pretty worried at my decision, so we had lots of discussions,” said Bronwyn, who only found out later that she had limited information about her diagnosis; she actually had three hot spots and her HL was stage IIB.

Support from the Leukaemia Foundation

Bronwyn said she “wouldn’t have managed at all” if she hadn’t had support from the Leukaemia Foundation.

“Having someone [a blood cancer support coordinator] who checked in and said, ‘is there anything we can help you with?’ kept me going,” said Bronwyn.

“And I felt comfortable to ring and say, ‘I’m confused about this, or I’m struggling financially, or I’m wondering how to get to my appointments, or I can’t afford a big flash wig – are there any other options?’.

“I needed to find accommodation for the six weeks of radiation treatment in Melbourne and the Leukaemia Foundation was instrumental in that,” said Bronwyn.

She also had “the most wonderful experience with the drivers” – the transport team of volunteers who drove her to Melbourne and back home to Tatura.

“I can’t tell you how much I looked forward to those trips. Often, I was on my own with the driver and we would just talk flat out for 1½ to 2 hours.

“I really valued that. It made me feel like a human,” said Bronwyn, and it felt special to have this connection with someone she didn’t know.

“To me they were life-changing events.

“When you’re going through a time like that, you’re so sick, you don’t go out into the community. For five months, my neutrophils were always zero, so I was isolated, and these car trips were special times.”

Getting on with life after treatment

At the end of November 2018, Bronwyn finished treatment and after giving herself a little bit of time, she went back to work on December 20, “wearing a wig”.

“We moved house this year, which is absolutely amazing. We’re in town now, so less housework, no farm work, less garden, nothing huge to grapple with.

“My aim this year was to focus on being present and to live within the reality of what we have and who we are and making the most of that,” said Bronwyn, now 50.

At the end of September, she celebrated her 50th with a three-day bike ride with a group of girlfriends, from Beechworth to Bright through the wineries.

How lymphoma has changed Bronwyn

“You do take a bit of a glance back and see the reality of your life.

“You only get one bash at this. I’m being more mindful of that and enjoying the present because you become more in touch with… this is it, this is who I am, this is where I’m at …and that’s okay, so just embrace it.

“I think it strengthened me in terms of working with that and making the best of it.”

Bronwyn’s advice

“Everyone is on their own path and everyone deals with these things so differently. Just listen and understand that it’s going to be your own journey and it will be very different to anybody else’s.”

*The ABVD chemotherapy protocol: doxorubicin, bleomycin, vinblastine, dacarbazine.


Australians raise the bar for the Leukaemia Foundation’s U.G.L.Y Bartender of the Year

Australians raise the bar for the Leukaemia Foundation’s U.G.L.Y Bartender of the Year

Tuesday October 1, 2019

More than 800 bartenders across the country have come together to be ‘U.G.L.Y.’ for the Leukaemia Foundation’s U.G.L.Y. Bartender of the Year awards. The extraordinary group of Aussies raised a massive $920,000 to pay for 11,500 nights of accommodation, essential for regional families affected by blood cancer who must travel far from home to receive life-saving treatment.

The U.G.L.Y. (Understanding. Generous. Likeable. You!) Bartender of the Year awards see Australian bartenders compete in the heart-warming hospitality charity campaign which invites pubs, clubs and hotels across the nation to host fundraisers to help beat blood cancer.

This year, Australia’s top 5 U.G.L.Y Bartenders are:

  1. Jenny Lagozzino, Lagozzino’s Top Pub, Tatura, Victoria
  2. Isabella Wyman, Glenmore Tavern, Rockhampton, Queensland
  3. Keith Morris, Burleigh Heads Hotel, Burleigh Heads, Queensland
  4. Debbie Weaver, Lawrence Tavern, Lawrence, New South Wales
  5. Ailan Hickey, Diver’s Tavern, Broome, Western Australia

Leukaemia Foundation CEO Bill Petch congratulated the Australian Top 5 and all the bartenders and venues who participated in this year’s event.

“All of these generous bartenders and their communities have really helped to make a difference for Australians desperately needing accommodation to be closer to blood cancer treatment,” he said.

“Unfortunately, most regional and rural Australians who are diagnosed with a blood cancer will have to leave their home, work and local community to relocate to a major city for their treatment.

“Funds raised by these amazing venues and their bartenders through this competition ensures these families have a safe home while undergoing life-saving treatment.”

The U.G.L.Y. Bartender of the Year competition is Australia’s largest hospitality charity fundraiser and has raised an incredible $14 million in its 11-year history, providing a significant 175,000 nights of accommodation for regional families. The event commenced as a state-based event and in 2019 moved to a national event for the first time.

Mr Petch said this vital support takes away the financial and emotional burden of finding and paying for accommodation, allowing Australians living with blood cancer and their families to focus on the most important thing – getting well. It also means families can stay together, close to their loved one during treatment, for as long as they need.

“U.G.L.Y stands for Understanding, Generous, Likeable, You and this label really reflects the kind-hearted and giving natures of bartenders in our clubs, pubs and hotels, which are often the heartbeat of Australian communities,” Mr Petch said.

The Leukaemia Foundation recently released a first-of-its-kind nationwide report titled State of the Nation: Blood Cancer in Australia. The report details the true size, scale and impact of blood cancer and the lived experiences of people living with blood cancer in Australia today.

Leukaemia Foundation CEO Bill Petch said the comprehensive and evidence-based report shows that blood cancer has been underestimated and underreported. It identifies that blood cancer is now more significant and prevalent than ever before and that diagnosis rates are on the rise across the country.

Every day another 41 Australians are diagnosed with a blood cancer – the equivalent to one Aussie every 36 minutes. Blood cancer still claims more lives than breast cancer and melanoma and sadly 20 Australians lose their life to blood cancer every day.

By 2035, this report shows these figures are predicted to at least double.

For more information about the U.G.L.Y. Bartender of the Year competition, visit


About the Leukaemia Foundation’s State of the Nation: Blood Cancer in Australia report:

Full report available here:

A visual summary of the report’s findings available here: 

Quest to better understand MDS and find out more effective therapies

Quest to better understand MDS and find out more effective therapies

Dr Ashwin Unnikrishnan

When someone with MDS is treated with azacitidine (Vidaza®), it takes six months to find out if they are responding to the drug. 

This “really is a wait and watch scenario”, according to Dr Ashwin Unnikrishnan, Group Leader and Senior Research Fellow of the Adult Cancer Program at Lowy Cancer Research Centre (Sydney).

But he hopes to change that with his latest translational research building on discoveries in his lab.

This research, co-funded* by the Leukaemia Foundation, Leukemia & Lymphoma Society (U.S.) and Snowdome Foundation over the next three years, involves collaborators in Australia and overseas working closely together to solve the problem of MDS.

“My work focuses on how we can improve the treatment of MDS. We need to develop more effective and durable therapies,” said Dr Unnikrishnan, who chose to investigate MDS when he was a basic science researcher, for both personal and professional reasons.

Dr Unnikrishnan’s personal interest in MDS

“My great uncle succumbed to this disease exactly 20 years ago, when I was in high school. He’d be rushed off to hospital in the middle of the night with a nosebleed. Then he’d get transfusions and all the conglomerate problems that went with that.

“I saw how MDS affected his health and its impact on the person he was. This was prior to azacitidine being available, when the mode of treatment was sub-optimal,” said Dr Unnikrishnan whose PhD was in epigenetics.

“I realised that epigenetics is one of the major things that goes wrong in a number of cancers including MDS.

“Epigenetic mutations are different to DNA mutations, and epigenetic alterations underlie a lot of what’s going wrong with MDS,” he said.

Understanding how azacitidine works

“Azacitidine is an epigenetic modifying drug and the best available treatment for people with MDS.

“There are individuals who benefit from azacitidine, even if it isn’t lifelong, and some people are almost cured; they’ve been on azacitidine for 10+ years and are still healthily tolerating the drug.

“But it only works in about 50% of the patients exposed to the drug, and we don’t understand why.”

This means around half of all azacitidine recipients will never respond to the treatment for MDS, and a significant fraction of those who do respond to azacitidine will relapse within two years.

“That’s the sad reality. And the prognosis for people who fail azacitidine treatment is quite poor,” said Dr Unnikrishnan.

“We’re trying to work out why azacitidine only works for a period of time before patients then relapse on the treatment.”

Dr Unnikrishnan has identified what is happening in patients who do respond to this treatment.

“Azacitidine isn’t eliminating the MDS cells that contain the mutation, so these mutated cells continue to exist in the bone marrow but the patient’s ability to produce blood improves, which is why they are identified as being responders to azacitidine treatment,” he explained.

“This reservoir of ‘bad cells’ in the bone marrow is the foundation for eventual relapse.”

Developing more effective therapies for MDS

Dr Unnikrishnan’s ongoing research has two goals – to better understand how azacitidine works and to use that information to develop more effective therapies, “because azacitidine isn’t a cure and most people eventually will relapse”.

“We need to do a better job of identifying how we can target the cells that cause MDS in the first place and aren’t being eliminated by azacitidine treatment,” he said.

“Then alternative therapies could be used to eliminate those abnormal cells and hopefully improved treatment options may lead to longer life spans as well.

“We have tantalising hints on what might be happening and what we can potentially do,” said Dr Unnikrishnan.

“But these findings are preliminary at this stage and need to be validated and confirmed. This will be done using samples collected in clinical trials and those banked in the past, and that’s where funding for this project is absolutely essential.

Validating initial discoveries  

“We have applied advanced technologies, such as next generation sequencing, to make these initial discoveries and this new funding helps us follow up on those initial discoveries, with experiments to validate our hypotheses and to generate high quality pre-clinical data which is essential to move our discoveries forward to early stage clinical trials.

“We have collected bone marrow [samples] from MDS patients before they receive treatment and at different stages when they’ve received treatment.

“From those samples, we extract the hematopoietic stem cells and early progenitor cells that sit in the bone marrow. We think MDS arises from those stem cells or progenitor cells, so our investigations are focused on those cell populations.

“A lot of our pre-clinical work involves using these patient samples to work out what’s different about them, compared to healthy individuals; what’s happening in those cell populations in an individual as they get treatment, and what’s changing or not changing in individuals based on whether they do or don’t respond to treatment?

“We generate hypotheses based on that, then utilise the samples in lab experiments to validate whether our hypotheses are correct or not correct.”

Identifying responders and non-responders

Dr Unnikrishnan also has started to uncover reasons why people don’t respond to azacitidine.

“They have a baseline molecular characteristic that is quite different to the responders,” he said.

“Molecular pathways seem to distinguish individuals, even before they begin treatment, identifying those who will become responders and those who won’t.

“One striking discovery is that bone marrow cells in people who don’t respond to this treatment are more cell cycle quiescent; their bone marrow cells don’t go through the cell cycle (dividing and replicating) as healthy cells should.

“We also identified molecular pathways that we think are linked to this increased cell cycle quiescence.

“Emerging from that work, through the technologies we are developing, we hope to identify pre-existing differences up front – before treatment is started – about whether individuals will respond or be resistant to azacitidine.

“Predicting that a person won’t respond to treatment is one of the things we’re trying to work on,” he said.

“A bone marrow transplant is the best therapy for people with MDS who have a matched donor and whose age and health suggests they can tolerate a transplant,” said Dr Unnikrishnan.

“And at some stage a clinical decision might be made for these individuals, rather than waiting six months on a futile treatment (if they turn out to be non-responders to azacitidine).”

However, Dr Unnikrishnan said it was important for patients to understand that was being worked on and was not yet in the clinic.

“It would be unethical to deny people treatment if we couldn’t make that prediction with a high level of confidence.

“We hope to find alternative ways to rectify these aberrant molecular pathways and we might be able to target the MDS more effectively than azacitidine currently does,” said Dr Unnikrishnan.

“We will investigate molecular mechanisms within MDS cells affected by azacitidine, as a means to develop new treatment options for MDS.”

Boosting azacitidine with an alternative therapy to make it more effective, or that works separately, may be an option.

And there may be drugs already on the Pharmaceutical Benefits Scheme or approved by the Federal Drug Administration (in the U.S.) that need to be tested on clinical trials as possible alternative therapies for MDS.

Collaborative partnerships interstate and internationally

Dr Unnikrishnan said new collaborations over the last two years, in Melbourne, interstate and overseas, had brought new insights into the problem he has been thinking about for many years.

“To look at MDS in a different light and mindset, to discover new things and solve this disease, you need to bring in a team of collaborators with different skill sets and expertise in different areas, including immunology, mathematics and biology, to complement one’s own.

“It’s exciting to work on multi-disciplinary research in this manner, and that integrates Australian research with the research community across the world.”

*  Beyond Azacitidine: Investigating new therapeutic strategies for the treatment of MDS? University of NSW, (Sydney). Collaborating institutes: UNSW (NSW), St Vincent’s (Vic), Technical University of Denmark. Funding: USD600,000, co-funded through LLS (USD300,000), Leukaemia Foundation (USD150,000), Snowdome Foundation (USD150,000).