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“You come back, and you get back into life” – that’s how Patrick lives with two lymphomas

“You come back, and you get back into life” – that’s how Patrick lives with two lymphomas

Patrick Devine with Ros walking
Patrick Devine “walking again” with Ros in February 2020 (Photo: Anna Carlile)

Patrick Devine has two extraordinary physical aims – to walk the 10 kilometres from Melbourne Central to Camberwell where he lives, and to swim 200 metres butterfly!

Extraordinary, because this time last year he couldn’t walk or talk after miraculously surviving a sepsis infection that saw him spend 11 weeks in hospital, 27 days unconscious in ICU, and 15 days on a ventilator.

“My wife was told many times to say her goodbyes,” said Patrick, 73.

The recently retired pharmacist is living with two different types of incurable lymphoma. Sézary Syndrome (SS), an aggressive form of cutaneous T-cell lymphoma which he’s had for 10 years, and since mid-2018 he’s also had Waldenström’s macroglobulinaemia (WM), a B-cell lymphoma.

“I live with cancer, accept the best treatment available and live in the best way that my body will allow.”

That’s Patrick’s philosophy and it steers him through the dramas and traumas inherent in having blood cancer so he can get on with and appreciate “a very ordinary life”.

When he spoke to Lymphoma News, the COVID-19 restrictions in Melbourne was the only thing holding him back from reaching his two goals.

Patrick Devine learning to walk December 2019
In December 2019, when Patrick was learning to walk again

Sézary Syndrome – diagnosis and treatment

While Patrick’s diagnosis with SS was in November 2010, he says the condition began 15 years earlier, when he started having skin rashes.

“Skin rashes can be eczema or psoriasis, but in the case of Sézary a cancer forms in the body which manifests itself in the skin and affects the lymph nodes and blood,” he explained.

“Initially it appears like eczema, but the skin can get covered with patches, plaques and tumours. When or if the skin gets broken, you become very susceptible to infection,” explained Patrick, a competitively successful swimmer for most of his life, who has spent a lot of time in the pool.

“In the last year [2009] before diagnosis, I was training quite a lot and my skin got worse and worse. I got a secondary infection over this eczema-looking rash and went to the doctor.”

After a blood test, his GP called that night saying his white blood cells were “off the scale” and the haematology registrar at a Melbourne hospital was waiting for him.

Patrick spent the next four days in hospital having tests, treatment for his skin infection, and he was diagnosed with SS – a rare condition that while incurable is treatable.

He was treated with extracorporeal photopheresis, which enhances the immune system and helps it cope with the SS. It requires access to a machine that takes blood out of the body, treats it with ultraviolet light, then returns the blood to the body.

The availability of some treatments, such as extracorporeal photopheresis (ECP), is not widespread, said Patrick who is concerned about people with rare cancers who live in remote areas.

“The rarer the cancer, the more difficult it is for treatment to be available at all major hospitals and to have specialists familiar with state-of-the-art knowledge and facilities to treat those cancers.

“Extracorporeal photopheresis is available in Melbourne, but at the time I had it, it wasn’t available in Sydney and is still not available in most other major centres today.”

Patrick Devine at the launch of the Blood Cancer Taskforce September 2019
Patrick Devine at the launch of the Blood Cancer Taskforce, September 2019

Next – a clinical trial for brentuximab vedotin

The ECP treatment “loses its potency after a while” so when an international clinical trial testing the drug brentuximab vedotin (Adcetris®) became available in 2015, Patrick participated. He was randomly assigned to the other arm of the trial and the treatment he received was bexarotene.

“When I wasn’t responding, they graciously transferred me to the brentuximab arm and I responded well to that,” said Patrick.

“Sezary syndrome is caused by a mutation in the genes and brentuximab is a monoclonal antibody designed to destroy specific proteins in the cancer cell.

“I was one of the few patients in the trial that could sustain the full dose – an infusion every three weeks for the 45 weeks of the trial.”

Patrick’s rashes responded “very very well” to the brentuximab and his lymph nodes “reduced in size and are fine”. But he got severe peripheral neuropathy and this side-effect made it difficult for him to walk, hold things, and he had a lot of gastrointestinal symptoms.

“So it wasn’t comfortable, but at the same time you could say it [brentuximab] saved my life,” said Patrick.

Over the following 18 months, he gradually got better and during this time he could swim more easily than he could walk, and he continued to swim competitively*.

He was drug-free after the trial and gradually his peripheral neuropathy improved, assisted by a series of gentle exercises and weights.

A second lymphoma diagnosis

Then, in June 2018, Patrick got another lymphoma, WM, which, astoundingly, he said “was fine”.

“I’m a pharmacist and I’ve worked with people with cancer all my life. I’ve counselled them, I’ve seen them die. I’ve made friends with them and many have continued living, and I’ve admired the way they have travelled their journeys.”

“You take what strengths you have, work out the best way to live, get the best treatment you can, and accept the result.”

“Emotion coming into it doesn’t help, does it?” he added.

Patrick’s treatment for WM was a combination of two drugs, rituximab (MabThera®) and bendamustine (Ribomustin®). He was to have six doses, but after the fifth he developed sepsis (septicaemia) and ended up in hospital.

“I completely lost all my motor skills and came out weakened by it, but I got back into life straight away, in the best way that I could manage,” said Patrick.

“I couldn’t walk well but I got back into swimming 3-4 km a week and coaching swimming, and I was working as a consultant pharmacist, part-time, which I’d done since 2015,” said Patrick.

But he no longer swam competitively: “My last serious competition was in 2017”.

The WM has since been “behaving itself well”, but in February 2019 his SS was “coming back” and the decision was made for Patrick to have total body electron beam radiation; 21 sessions in July and August plus other appointments.

“It was fairly intensive in terms of time and this is where public transport was important because I live near a station and the thing is… parking at hospitals in incredibly expensive,” said Patrick.

Despite his weakened immune system, Patrick doesn’t hesitate to catch public transport to his medical appointments and treatment, but he’s “fairly careful”. Using it is a statement of living a normal life.

“Even though your immune system is compromised, you still have to expose yourself to society,” he said.

“I don’t have fear. Fear is not a thing that helps.”

In October last year, Patrick, who is an active member of a car club, displayed his car [a 1956 Mercedes 300 SL that he restored from a wreck] at the Motorclassica exhibition in Melbourne.

“I was there for three days, talking to people from all over the world.”

The next day, Patrick and his wife, Ros, celebrated their 50th wedding anniversary, and only three days later he collapsed, and Ros called an ambulance. By the time he got to Emergency, he had lost consciousness.

Patrick Devine and Ros at a car rally
Patrick and Ros at a car rally in 2019 (Photo: Stephen Skok)

A second near-death brush with sepsis

Patrick Devine in ICU
Patrick when he was in ICU and ventilated in November 2019

This was his second sepsis episode. He was ventilated, his heart, lungs, kidneys and liver collapsed, and Ros was told, “sorry, he’s not going to make it, say your goodbyes”.

Patrick had no idea what a dire situation he had been in until he became semi-conscious and Ros said, “hey, it’s November”. All sorts of things had happened, which he had no knowledge of including Melbourne Cup.

He was moved to the palliative ward.

“The thing was, I was sent up there to die, and Ros was rearranging the house so they could put a hospital bed in our bedroom, because I may have ended up dying at home.”

One day, during the three weeks Patrick spent in the palliative ward, a doctor noticed he had produced a “thimble full of urine”, the colour of shiraz wine.

“And I noticed a tiny little bit of excitement in his voice… things were just starting to work,” said Patrick.

Gradually, over many weeks, Patrick’s systems started to recover and he was moved to a rehabilitation hospital.

Having big lungs, from a lifetime of swimming, was “probably the reason I survived”, he said, along with Ros’ unending support, and “an amazing group of people with different skills and abilities” who saw him throughout this period.

Getting back into life

Patrick Devine with Ros and Scott Morrison
Patrick and Ros Devine with Prime Minister Scott Morrison in April 2018 when he was “lobbying for patients from remote areas who have rare blood cancers”

He left rehab on January 3 and went home with a wheelchair, walker and shower stool, “but I never used any of them”. By February, Patrick was “reasonably active” and took his car to a garage day and two exhibitions.

But he did find it “very hard” to walk the gentle 15m slope, from his car to the backdoor.

“One day I even crawled,” said Patrick.

“I also crawled around house and tried to sing.

“This was my idea. It was very hard for me to stand up. Crawling is very good as a limb coordination exercise and it was something I could do with the state of my body.

“I mixed crawling with walking, and I tried to sing, for my lungs.

“Even now my speech is not quite what I would like it to be, because my tongue was damaged from the ventilation tubes,” said Patrick, who speaks slowly, and very clearly.

“Sometimes, if I speak quickly, I’ll start one word, then say another word because the tongue has gone into the wrong sequence.

“But I’m back to where I chaired a Zoom meeting in September for the annual meeting of my car club with 204 members.”

Patrick Devine at the pool
Back in 2016, when Patrick was at the pool

Patrick’s two physical aims

“Eventually, I’ve rebuilt. I can now walk several kilometres and I have two physical aims at present.”

But there are a couple of caveats, thanks to COVID-19.

“I want to do the walk before it gets too hot. Ros will come along as a support team, but at present we have a five-kilometre radius in Melbourne that we’re not allowed to go outside.

“And the pools have been locked down and I haven’t been able to book a swim yet,” said Patrick when he spoke to Lymphoma News in early-October.

“Of course, it will take me a while to work up to the 200m butterfly.”

And there’s another “thing”.

“My Sezary isn’t going very well and I’m back on brentuximab,” said Patrick. He had just had his fourth dose, with another 12 infusions to go.

So he also wants to do both his walk and swim before he builds up too much peripheral neuropathy – a cumulative side-effect of this treatment.

PBS listing of brentuximab

Back in April 2018, when brentuximab vedotin was approved by the Pharmaceutical Benefits Committee (PBAC) to be funded on the Pharmaceutical Benefits Scheme (PBS), Patrick was involved in the announcement with the Minister for Health, Greg Hunt.

At that time a course of brentuximab treatment cost $300,000.

“It’s hugely expensive and I’m forever grateful to the Australian taxpayers who pay for that to keep me alive,” said Patrick who is an avid consumer advocate for blood cancer.

A few days after the PBAC announcement Patrick was asked to meet the Prime Minister.

“We talked about brentuximab and I gave him a letter outlining the difficulties of people who live in remote areas and have a rare lymphoma or leukaemia,” he said.

That’s Patrick’s biggest advocacy concern and his passion – how those people manage, from being diagnosed by their GP, to accessing treatment, and the role of the various state-based health jurisdictions.

He was actively involved in the launch by the Leukaemia Foundation and the Australian government of the Blood Cancer Taskforce last year and the National Action Plan that was released in September, and more recently, he advocated for another expensive cutaneous lymphoma drug, mogamulizumab, to be recommended by the PBAC for listing on the PBS.

Enjoying the “nice things of now”

“I don’t know what will happen when this cycle of brentuximab stops working. I’ve got 12 more treatments, and it’ll sustain me for a while, but I’d like to live well into my 80s or 90s,” said Patrick.

He doesn’t worry too much about the future though, “because worry stops you enjoying the nice things of now”.

“So, I’ll enjoy my swim. I know how weak I’ll be, but it’ll still be fun.“

Exactly 12 months after being admitted to ICU, on October 19, 2020, Patrick had his first swim since then of one kilometre.

“And the next time the car club has something, it will be nice to go on it. And I’ve got motoring articles to write [for the club magazine that Patrick edits].

“Believe it or not, I don’t mind having the lymphomas at all. The things that are fantastic in normal life – they’re absolutely garnished, garnished more than you could ever imagine. They become much more important.

“What happens… you appreciate the finest and the nicest things and sometimes the very ordinary things. They just become more highlighted in your life.

“There are certain traumas that have happened and it’s quite amazing that I’ve got through them. You have to put those bits aside and just be completely normal,” said Patrick.

* Patrick, who started swimming at 11, has broken four Australian records in Australian swimming championships and has many gold medals amongst his trophies for Royal Life Saving. He started competing in Masters’ competitions at the age of 50 and has eight gold medals in international lifesaving and three golds swimming at international level. “The second year after I was diagnosed, which was 2011, I could still make the top 10 in the world in Masters’ swimming in my age group,” said Patrick.

COVID has been beneficial to some WM patients

COVID has been beneficial to some WM patients

Andrew Warden and Judith Trotman
Professor Judith Trotman helped train Andrew Warden to give himself subcutaneous immunoglobulin which has now replaced his previous monthly intravenous immunoglobulin that was administered in a hospital setting

“COVID’s been good to me and quite a few other patients”, says Andrew Warden, who volunteered to be a “guinea pig” on a program initiated by Professor Judith Trotman.

It was for a new treatment procedure, subcutaneous immunoglobulin (SCIg), which can be self-administered at home on a weekly basis, thereby replacing the previous intravenous immunoglobulin (IVIg) method which involved going to a cancer centre every four weeks.

“In recent years there’s been subcutaneous immunoglobulin replacement therapy, given every week rather than every month, and the patient can be trained to give it to themselves at home,” explained Prof. Trotman.

Andrew was among the first of a group of around 20 patients at Concord Repatriation General Hospital who, when asked if they would like to self-inject at home, agreed. After a couple of training sessions, he made the change to SCIg back in June.

Andrew Warden self-injecting at home
Andrew Warden self-injecting his weekly dose of subcutaneous immunoglobulin at home

That means Andrew, who has Waldenström’s macroglobulanaemia (WM) and lives at Coasters Retreat, which has no road or land access, saves hours of travel time and this results in superior social distancing.

“For me, it saves three hours for each treatment. Return travel time for me from Coasters Retreat to Concord involves 2½ hours in my car and ½ hour in my boat,” said Andrew.

“Concord Cancer Centre gave me practical training in SCIg in three weekly sessions at the centre. This has now been streamlined to two training sessions at the centre, with the third session being held virtually at home.

“This results in superior social distancing during the COVID-19 pandemic but also saves the travel time to and from the clinic typically every four weeks,” he said.

“I self-inject at home, which saves travelling for three hours and going into a risky hospital environment. It’s been a winner,” said Andrew.

According to data from the WhiMSICAL Registry survey, 14% of WM patients receive IVIG treatment.

Prof. Trotman said the subcutaneous immunoglobulin program had been very successful for patients with reduced antibody production who need immunoglobulin replacement therapy.

“Dozens of our patients at Concord now can self-administer or their carer can administer the immunoglobulin to them at home.

“The patients don’t have to come into hospital, which is convenient and particularly relevant to patients who live far away, and for patients when they don’t want to be coming into ambulatory care settings,” said Prof. Trotman.

Mogamulizumab being considered again by PBAC

Mogamulizumab being considered again by PBAC

This month the Pharmaceutical Benefits Advisory Committee (PBAC) will consider a resubmission from Kyowa Kirin for mogamulizumab (Poteligeo®) for relapsed or refractory (R/R) cutaneous T-cell lymphoma.

The Leukaemia Foundation made comments to the July 2020 PBAC meeting for a previous submission for mogamulizumab (when the PBAC made a first-time decision not to recommend) and again for the November 2020 PBAC meeting.

The requested listing is a Section 100 (Efficient Funding of Chemotherapy) Authority Required (Written) listing for patients with R/R CTCL who have been previously treated with at least one prior systemic therapy.

Mogamulizumab illustration The sponsor (Kyowa Kirin) provided the Leukaemia Foundation with summary information on the target population, specifically patients with the mycosis fungoides (MF) or Sézary syndrome (SS) subtypes of CTCL, how the condition is currently managed in Australia, where mogamulizumab sits in the current standard of care, information on the MAVORIC clinical trial, common side-effects of the treatment, and how it is administered.

The Leukaemia Foundation’s Head of Policy and Advocacy, Emily Forrest, said, “we understand that patients with early-stage MF are treated primarily with skin-directed therapies, whereas patients with treatment-resistant early-stage MF, advanced-stage MF, or SS require systemic drugs including vorinostat, or cytotoxic chemotherapeutic drugs”.

“We understand that in the MAVORIC clinical trial, mogamulizumab significantly prolonged progression-free survival compared with vorinostat. Also, patient-reported outcomes, as measured by the Skindex-29 and FACT-G, showed significantly greater symptom reduction and improved functional status in favour of mogamulizumab versus vorinostat in early cycles and throughout treatment.

“We also requested consumer feedback via the Leukaemia Foundation’s disease-specific Facebook pages, which included a link to the Patient Voice Initiative ‘Tip sheet for submitting consumer comments to the PBAC’,” said Ms Forrest.

The Leukaemia Foundation received one response to its request for feedback for the July meeting from consumers: Donna, a CTCL patient in Queensland who we understand has not undertaken treatment with mogamulizumab: I’ve not been given any drugs and I’m asking WHY when I’m at Stage 4 … .

“A second request, for the November meeting, did not receive any consumer comments, which may reflect the small population of patients for this therapy to date,” said Ms Forrest.

Information provided by the Leukaemia Foundation to the PBAC in support of the two submissions included: “CTCL is a rare type of lymphoma, and rarer still for specific subtypes of the disease such as MF and in particular SS. Smaller patient populations with rare diseases face significant hurdles in accessing new treatments in a timely manner. It is for precisely this reason that patients and clinicians need access to new therapies to treat the disease.

“We therefore urge the PBAC to consider the high unmet needs of this patient population in its decision making and in making a recommendation to government for listing this therapy on the PBS.”

More PBAC news on CTCL

In other PBAC news, on 1 November 2020, methoxsalen (Uvadex®) was listed on the Pharmaceutical Benefits Scheme (PBS) for patients with erythrodermic CTCL who have not responded to other treatments.

Methoxsalen was approved for listing by the PBAC at its May 2020 intracycle meeting. It was considered as part of a streamlined co-dependent dual-review process with the Medical Services Advisory Committee’s consideration of Medicare funding of extracorporeal photopheresis (ECP) for CTCL, based on a favourable clinical and cost-effectiveness comparison.

Approximately 75 patients annually are expected to benefit from this listing. ECP also will be funded through Medicare for use in combination with methoxsalen.

ECP involves attaching a patient to a machine that removes some of their blood, separates the white blood cells (WBC) and returns the red blood cells and platelets to the body. The WBC are mixed with methoxsalen, exposed to ultraviolet light, then administered to the patient, to activate their immune system to fight the blood cancer.

John is positive his lymphoma is cured

John is positive his lymphoma is cured

John Taylor and Eileen in Mandurah
John Taylor and his wife, Eileen, “last summer at Mandurah”

It’s been 10 years since John Taylor’s last follow-up consultation with his haematologist and for the last eight years the long-term survivor of follicular lymphoma has thought of himself as cured.

The 91-year-old believes “having a very positive outlook” contributed to that outcome.

“I consider myself cured,” said John, who lives in a retirement village at Mandurah, south of Perth with his wife of 66 years, Eileen.

“But who knows what’s around the corner.”

Back in 2009, John said he wasn’t feeling unwell, but he went to the doctor about his spleen.

“It was getting larger and larger,” he said.

Initially, he was misdiagnosed with myeloma and told, “we can’t do much about it”. But a couple of months later the pain in John’s side was getting worse.

“I realised my spleen was getting larger and I needed to do something about it”.

John Taylor and grandchildren
John and Eileen Taylor with, from left, their son Nick Taylor, granddaughter, Ella Hackleton, grandson Daniel Taylor and daughter, Melissa Taylor

Eileen took John to the hospital at Mandurah where the doctor on duty said, after seeing the results of an MRI, ‘I think you’ve got cancer John and you’re off to Fremantle’.

“That’s when we started on the road to recovery,” said Eileen.

John described the doctor he saw at the Fremantle hospital as “a wonderful, positive person”.

“He and I clicked straight away, and he put me on the right track. He did a fine needle aspiration and said I should go on treatment straight away that day.”

At the start of his lymphoma treatment, John spent the first fortnight in hospital and during that time he memorised the names of each of the 19 staff he encountered there.

“I had to fill my mind with something other than the treatment,” explained the retired engineer, who was 81 at the time.

“I was bored and up for a challenge. I involved myself by asking people their names, then applying my memory to it.

“And then, when I left hospital, I sent them a thank you card. I appreciated all their efforts and I named everyone, all 19 of those people who looked after me in some way.”

John spent the next three months going to and from Freemantle, where he had chemotherapy combined with the monoclonal antibody, rituximab (MabThera®) which he said, “seemed to do the trick”.

“They pumped all this juice in, and I got tea and a sandwich, and it was quite nice. I quite enjoyed it,” he said.

“My wife was the one who was driving [up and down from Mandurah] and trying to find a parking space!”

“The only time I got sick was the very initial treatment in hospital. The nurses were all garbed up in gear and they did take care with it. Apparently, it was very poisonous.

“But after that I was okay, I didn’t get sick at all.”

This is where Eileen added to the conversation.

“John’s making very light of all this, but he was very sick, went through the treatment like a breeze, and also got over it very well,” she explained.

“When he initially saw the specialist, the specialist said to me, ‘I knew John was going to be alright from the moment he walked in, because he had such a good attitude, a different attitude – some people have it and some don’t’.”

He certainly confirmed that a positive attitude was one factor in recovering, said John.

“I’d read that it’s [follicular lymphoma] an incurable disease, but I felt, well, this is my chance to hang in there, and that’s what we did.”

After completing his treatment in June 2009, John saw his treating haematologist initially once a month.

“He would say to me, ‘here’s my star performer’, because I was responding so well,” said John.

John Taylor and Eileen on holiday
John, aged 82, two years after completing his lymphoma treatment, with Eileen while on holiday at Woody Island (WA)

The check-ups went to every three months, before stretching out to six-monthly.

“Then he said he only needed to check on me once a year, and ‘if you have any trouble come back and see us’, and I’ve never had any trouble.

“About two years after that we went away on holiday, and it went well. I didn’t even think about it then, I just returned to my normal life and attitude.

“Since then, I haven’t had any reaction and I’ve had no need to go back and see anybody,” said John about his experience with lymphoma.

“But the only thing is, I’ve been plagued with skin cancer for years, and the skin specialists have a lovely time ripping skin off and putting bits back,” said John who has been dealing with skin cancer for about 40 years.

“He’s been very seriously ill in hospital with it,” said Eileen.

“He’s got great patches where they’ve taken skin away and he’s not a pretty sight really… he’s not the man I married!”

Talking about how they, as a couple, reacted to John’s subsequent lymphoma diagnosis, Eileen said, “we just hung in together”.

“I didn’t drop my bundle and say, ‘oh, this poor man, he’s never going to live’. I didn’t feel like that and John was very positive.”

John describes the Leukaemia Foundation’s support as “marvellous – the things that they’ll do, the books and information they give you, there’s no end of it”, and he was referred to the support group at Mandurah.

“There were a lot of people there who were a lot worse than me, and I felt, well, boy I’m lucky.

“It was good to talk to them because I felt it gave me a benefit and I hope it gave them some support too.”

John says the best thing he ever did was get married.

“That really changed my life and direction. Togetherness and support – that makes a big difference.”

And the Taylors are blessed to have a son and daughter, and three grandchildren.

John and Eileen walk regularly, they have a good diet, don’t smoke, and do enjoy a sherry most nights, except the nights they play bridge. They also play croquet and are part of a computer group.

“We help people get over their computer troubles, and I quite enjoy that,” said John, who still drives.

He also helps his son out with bits and pieces and the latest project was organising a solar system to be installed on the roof of his son’s house.

“I like that sort of work, to have a project and get on with it. And I hope to do that for another year or two.”

For others, John has some simple advice: “be positive, don’t give in”.

“And what I say to the Leukaemia Foundation and the 19 people who looked after me in hospital – you gave me a new life.”

“Trev is still looking after me” says Pauline

“Trev is still looking after me” says Pauline

Trevor and Pauline with their dog
Pauline and Trevor with their beloved dog, Harry: “We loved him so much. He was so special to us.”

Had Pauline Vedelago been told, 3½ years ago, that she would no longer have her husband, dog, house, job, or live in Bundaberg, she would have said, “are you crazy?”.

“My life was so different 3½ years ago,” said Pauline, 58, who is retired, volunteers two days a week, and writes to her late husband every night, telling him about her day.

While there are many blood cancer success stories, unfortunately there also are stories where treatment is unsuccessful, the disease mutates, and in the end, devastatingly, there are no further options.

Sadly, this happened to Pauline’s husband of 31 years, Trevor Boyd, a teacher-librarian whose prognosis was “pretty good” when diagnosed with non-Hodgkin lymphoma (NHL) in May 2017, aged 55.

Over the next 2½ years, the couple, went back and forth from their home in Bundaberg to Brisbane, for tests and treatment.

Pauline and Trevor in hospital
Pauline with Trevor in January 2018 after his admission to hospital for his stem cell transplant

Trevor’s determination to beat blood cancer

When Trevor didn’t respond to his first or second lines of chemotherapy, he had an autologous stem cell transplant in January 2018, which his haematologist said gave him the best chance of a long-term good outcome.

After six weeks in Brisbane for the transplant, and being told that Trevor looked to be “in the clear”, they went home, but not for long, because an infection in Trevor’s Hickman line turned out to be serious.

“It was called mycobacterium fortuitum, which always made me laugh because I thought it doesn’t feel very fortunate,” said Pauline, so back they went to Brisbane for another month for round-the-clock intravenous antibiotics.

Finally, the couple returned home and glimpsed normal life again – camping together, catching up with friends, exercising regularly, and Pauline started her social work again, part-time.

“Life was starting to look good,” she said.

Trevor was in remission and he went back to work for the last six weeks of the 2018 school year.

“Trev led a very quiet life, very similar to what people do now, really, socially isolating. Any friends who were coming over, we’d make sure they were all well and kept their social distance,” said Pauline.

This year, when coronavirus started, Pauline said it felt really familiar: “This is what we used to do all the time. It felt like history repeating itself”.

Towards the end of 2018, Trevor started to feel unwell. He had fevers and fatigue and assumed it was a virus he’d picked up from the school kids, but after a month, when he didn’t get better, his GP suggested another round of scans.

Pauline and Trevor after Trevs knee surgery
The Boyds, in January 2017, after Trevor had knee surgery and just months before his diagnosis

Another relapse and two different diagnoses

On his 57th birthday, on December 29, he got the news. He had a mass on his lung and within days the Boyds were back in Brisbane. Trevor was diagnosed with a different blood cancer – chronic lymphocytic leukaemia – and started a new regimen of chemo. Soon, however, scans showed that it wasn’t working.

Miraculously, a new drug (venetoclax) had been listed on the Pharmaceutical Benefits Scheme that week, which Trevor started immediately, combined with another immunotherapy, not yet approved in Australia, and which cost the couple “several thousand dollars”.

Then, genetic studies revealed that Trevor had “a really bad mutation, c-myc, which doesn’t have a good prognosis”. An allogeneic stem cell transplant was his only option. Disappointingly, none of his three sisters was a match, and he was running out of time to find a matched unrelated donor.

Next, he was told he actually had Richter’s transformation; a disease that looks like NHL but is “something much worse” because it constantly mutates, and CAR T-cell therapy in the U.S. would give him the best chance of survival, providing he was accepted on to a clinical trial in Seattle.

“If we got the okay, we had to go right away, and have a spare half a million dollars!” explained Pauline. But first they needed passports, urgently, at $500 each.

“Mine had expired and Trev hadn’t had one for 20 years.”

They also were in the middle of selling their home in Bundaberg.

Trevor and Pauline in Adelaide
Trevor and Pauline holidaying in Adelaide

“We just thought, ‘oh well, we can do that’. We’d borrow money from everyone and anyone, get our super, and pay people back.

“That’s the kind of pressure you’re under. I thought I was going to go mad. I could barely cope,” explained Pauline.

“When we had the relapse in January 2019, I couldn’t cope… I had a real little meltdown.

“Trev was really tough, and he was stoic all the way through, but I started to fall apart.

“I got myself together, went to counselling, went to my GP, started antidepressants… because I’m a social worker; I know what you’re supposed to do to look after yourself.

“I thought, all right, I have to be like Trev, to be strong. We just have to keep going.”

Leukaemia Foundation support

Pauline had been in contact with the Leukaemia Foundation and one of our blood cancer support coordinators, Sheila Deuchars.

“Sheila was great. She put us in touch with some Australians who were over there [in the U.S.] at the time doing the same thing and we had been in contact with them.”

But, at the last minute, Trevor was told he wasn’t eligible for the American trial because his disease was mutating.

“That was so disappointing, but we were still hopeful,” said Pauline.

“Trev was writing to professors all over America to see what trials were coming up that targeted the CD20 mutation.”

Then, another miracle, a clinical trial was starting… in Brisbane! Trevor just had to have all the tests and tick all the boxes, which he did. He was eligible, and the trial paid for their travel and accommodation expenses.

“Fantastic, we could fly to Brisbane instead of driving or taking the train,” said Pauline.

Trevor started the trial in August [2019] but, after six weeks, he’d had “absolutely no response”.

“That’s when we had the big conversation with the specialist,” said Pauline.

“He said, ‘we’ve thrown everything at it… you might as well go home and make your end-of-life preparations’ blahdy blah, but there was still one option, ‘we could try high dose chemo as a last resort. Go home and think about it’.

“I knew Trev was never going to give up. He was going to keep fighting. That’s the way he had to go.

“He still was feeling pretty well, still working around the house and gardening.”

Pauline said her worst fear was that Trevor would go to 4W, the hospital ward for people on high-dose chemo, and be transferred to 4A, the palliative care ward.

“For three years, on and off, I’d look at that ward. My sister who died of cancer in 2013 had been in that ward,” she said.

When Pauline suggested they go on the Ghan, “something we’ve always wanted to do”, his response was ‘no, I can’t go on a holiday. I won’t enjoy it if I’m not fighting for my life’.

“I said to him, ‘of course, I’ll support you, whatever you decide’.”

Trevor started high dose chemo in September [2019] and had radiation as well.

“It was pretty awful, just one nightmare after the other, in October, November, until early-December when it didn’t work,” said Pauline.

“Trev was in hospital all that time. I just wanted to be with him, I didn’t want to be anywhere else.

“We were so grateful for the Leukaemia Foundation. I took up Sheila’s offer of a unit at Herston. It was so lovely. I’d get the bus in [to the hospital] in the morning, I could stay as long as I liked, and get an Uber at night to come home. It was so easy.”

It was Pauline’s 58th birthday on December 10, “we got some lovely photos”, and Trevor died eight days before his 58th birthday.

“While all that was happening, we sold the house, and the contract was a story in itself!

“Harry, our dog, died too last year, in April. We had to put him down. We loved him so much. He was so special to us because we don’t have children.”

When Pauline spoke to Living Well With Grief, six months after Trevor’s death, she said it “was wonderful” living in a granny flat that adjoined Trevor’s sister’s house in Brisbane, for the time being.

“I’ve been on my own, but not really alone. I’ve got contact with family, but without feeling like I’m in the way,” said Pauline.

“I appreciate the support and having someone who cares whether you get up in the morning, because so often I just didn’t see the point.

“But every day I’ve got out of bed, because Trev’s sister and her husband have been so lovely to me, I don’t want to worry them about anything.”

Pauline and Trevor on Paulines birthday
Pauline Vedelago celebrating her birthday with Trevor in their Leukaemia Foundation Unit at Herston, eight days before he died

Grief support there when needed

Since Trevor’s death, Pauline has been supported by Shirley Cunningham from the Leukaemia Foundation’s grief and bereavement team.

“I said to Shirley, ‘I’m the perfect client. I’ll do everything right to try and get through this. I’m not going to let it beat me’.

“But I still feel really sh*t, so that’s why I’ve come to counselling. I had my first appointment about two months after Trev died and I knew I wasn’t doing too well, and it was really lovely talking to Shirley.

“I was a social worker for 30 years. I’d never done grief counselling but thought I understood grief a bit. When my sister died, I thought, ‘okay, this is how it works, this is pretty sh*t, but okay, and when Trev was diagnosed, and then when I knew he wasn’t going to make it, I thought I was prepared.

“But you know, losing the person that you love most in the world, nothing really prepares you for that.

“One positive thing about cancer is that Trev and I had plenty of time together to say all the things you want to say, and I’m very appreciative of that, but it certainly doesn’t prepare you for the depth of grief you feel afterwards.

“Trev was really organised, making sure our super was good, so financially, I’m quite comfortable.

“We had grey nomad plans. We’d done a few three-month camping trips around Australia and we were just going to do more of the same… four-wheel driving.

“I do find that hard, letting go of the life that you thought you were going to have.

“It’s just accepting that things have to change. It’s trying to be mindful, trying to live in the present rather than focus so much on longing for the past.”

Pauline said she has experienced a loss of identity: “I was a social worker, but I’m not. I was married, but I’m not. I used to live in Bundaberg, but I’m not. I used to have a house, but I don’t.

“I used to be married, but now I’m a widow. I’m thinking, well, who am I? Who am I without Trev?

“I had a good chat to Shirley about regression, which I’d read about.

“You are stripped back to your most vulnerable self. I felt like I was in my teens again for quite some time. I felt so vulnerable. I didn’t want to talk to anyone, I didn’t want to go out.

“Then I did this complete about-turn. I became the Academy Award recoverer, where you say to everyone, ‘I’m fine. I’m going okay. Oh, not too bad’.

“I did that for a couple of months, because you want them to think you’re okay. You want them to think well of you, that you are recovering.

“I said to Shirley, ‘you’re the only person I’m crying with these days and I don’t think that’s good. I’m just covering up all the time’, so we had a good chat about that and what I should do.

“Grief is a very weird thing. I realise now why you do certain things and I’m very normal. The book I’m reading now is The Year of Magical Thinking which is about the difficulty you have with emotional acceptance.

“I was there when Trev died, but you still have so much trouble accepting it and you still think maybe somehow they’re still alive. I’d wake up in the morning thinking Trev was still alive.”

Making a new life

Pauline has decided to stay in Brisbane, plans to buy her own home there, and is putting things in place.

She has started going to church again and says, “I do have a faith, I do believe in an afterlife, and that has helped”, has become more active in her yoga practice, and has started bike riding with her brother-in-law.

She regularly sees her two brothers who live in Brisbane and has reconnected with a few friends, including an old uni friend she hadn’t seen for 30 years. And Simone, who she met when her husband Pete was sitting beside Trevor during chemo, has become a good friend.

Pauline had always wanted to “do something with people who care for wildlife” in her retirement and due to some divine intervention, she is volunteering two days a week at a koala sanctuary, which is helping her to “just be in the moment”.

And she’s started a journal.

“I’ve found journaling very helpful. At first, when I was just so miserable, I kept writing about how terrible I felt, and I didn’t know if that was helping. Then I received a random text from someone that said, ‘remember the joyful times you had with Trev’, and I thought, that’s what I need to do.

“So, every night I made sure that at the end of my journal writing, I’d write down a happy memory and thank Trev for that. Sometimes that was really hard, but I did that for months.

“And now I don’t do the happy memories anymore, I just do gratitude now. I’m still writing to Trev, but I finish with things that I’m grateful for that happened during the day,” said Pauline.

“I do believe Trev is still present in some form, in some way, and is still looking after me somehow. And I just figured, well, this is my way of communicating with him.

“I don’t think I’ll keep writing to him for the rest of my life, but I’m determined to keep going with it for this year.”

Pauline and friends kayaking Coonarr Creek, Bundaberg for Trev’s tribute paddle
Pauline and friends kayaked up Coonarr Creek, Bundaberg for Trev’s tribute paddle in March 2020

A tribute to Trev

Back in Bundaberg, Pauline used to kayak with a group of women, and one time Trevor joined them.

“One of my friends suggested it would be nice to have a paddle tribute to Trev, which I thought was a great idea.”

The tides were checked, a date was set, and Pauline went up to Bundaberg for the weekend.

“We ended up with 13 people and two dogs, and I decided to take half of Trev’s ashes for a little ceremony.

“Bundaberg ginger beer was Trev’s favourite drink before he went off all sugar, and I put half of his ashes in six Bundy ginger beer bottles, one for each of his best mates, and me, which we carried upstream to a lovely, quiet place.

“I thanked everyone, then they picked up their bottles and I put his ashes in the creek.

“I was so happy I did that and again, divine intervention, it was at the beginning of March, only a couple of weeks before coronavirus kicked in, and I thought, ‘oh, Trev, you’re looking after me’.”

Pauline wanted special mention made of how grateful she and Trevor were to the Leukaemia Foundation, “for everything they helped us with”. In particular, the practical support of “those two months when I lived in the Leukaemia Foundation unit”.

“I’m a regular donor now and I’ll be making a bequest in my will when I redo it again. And I’ve registered for Light the Night.”

Geoff’s story: living well with mantle cell lymphoma

Geoff’s story: living well with mantle cell lymphoma (MCL)

Geoff has led an active life with many proud years in the military, running marathons and playing AFL. At the age of 57 his GP in Kalgoorlie gave him the unexpected news, he had stage 4 mantle cell lymphoma (MCL) and needed immediate treatment.

Six months of chemo and a stem-cell transplant put Geoff into remission for three and a half years before relapsing. With few options available his haematologist suggested an oral targeted therapy. Now he’s back to feeling like his old self and living life to the full, staying fit and hoping to go back to work.

His life goal is to make it to 100 and he’s well on the way to getting there with a new lease on life – just 39 years to go!

Addressing knowledge gaps in immunoglobulin therapy

Addressing knowledge gaps in immunoglobulin therapy

Dr Khai Li Chai is working to improve the prevention and treatment of infection in blood cancer patients with antibody replacement therapy.

Khai Li Chai
Dr Khai Li Chai

Dr Chai is a specialist clinical and laboratory haematologist based at the Transfusion Research Unit at Monash University (Melbourne). She was awarded a PhD scholarship from the Leukaemia Foundation and the Haematology Society of Australia and New Zealand (HSANZ) in early-2020.

Working with Associate Professor Zoe McQuilten and Professor Erica Wood, her project, Immunoglobulin therapy to prevent and treat infections in patients with blood cancers: who, why, when and how? will evaluate the evidence base, current practise and clinical outcomes of immunoglobulin therapy.

People diagnosed with CLLnon-Hodgkin lymphomamyeloma and those who have undergone an allogeneic stem cell transplant, frequently develop low immunoglobulin (antibody) levels (hypogammaglobulinaemia) due to their disease or as a result of treatment.

In hypogammaglobulinaemia, low levels of antibodies can be associated with serious and/or recurrent infections. Immunoglobulins made from donated blood products and containing vital antibodies can be given to patients to help keep infections at bay.

New technologies, plus an increased understanding of the immune system, mean scientists and clinical teams now have the capacity to create detailed immune profiles of individual patients. Dr Chai will analyse these immune profiles to better understand the capacity of an individual’s immune system to fight off viral and bacterial infections.

She hopes this analysis will help identify new immune markers that can be used to guide and monitor optimal dosing and duration of immunoglobulin therapy. This approach will identify high-risk individuals who may benefit from ongoing treatment and those who are at lower risk and can come off treatment sooner.

“We know that people with blood cancers are at increased risk of infection,” explained Dr Chai.

“As clinicians, we often administer antibiotics and antibody replacement therapy to reduce this risk. A lot of what we do requires more up-to-date information.

“My project goals are to reduce this knowledge gap and ensure that the therapy we provide is not only effective, but safe and sustainable for the future.”

While she enjoys treating patients working as a clinician and pathologist, being able to learn and delve more deeply into the field of research and contribute to better understanding blood cancers is very important to Dr Chai.

“The main thing I want to achieve with my research is to produce findings that make a significant impact in delivering individualised therapy – sustainable therapy that is able to support improved quality of life for people living with blood cancer,” she said.

“The beautiful thing about research is the unpredictability of each day.  

“It can range from reviewing patients in hospitals, examining samples in the laboratory, teleconferencing with other researchers across the world, learning and discussing new concepts in biostatistics and epidemiology with other students at university, or learning more effective ways of performing literature searches from the librarian.

“Each new day brings new learnings, challenges and skills.”

Dr Chai is most excited by sharing and presenting her research findings to her peers.

“We do this virtually now, and we will do this in person again soon,” she said, during the COVID-19 restrictions.

“It is a great feeling to find out that your research is supported and respected by your peers.

“I thank the Leukaemia Foundation, HSANZ and everyone who has made this funding possible for giving me this opportunity.”

I was a new mum with blood cancer

I was a new mum with blood cancer

Sarah Fazulla and her young daughter Blair
Sarah Fazulla with her daughter, Blair

Mother’s Day will be extra special this year for young mum Sarah Fazulla.

This year’s will be 27-year-old Sarah’s second Mother’s Day – but the first she’ll be celebrating cancer free.

Last year, as she held her beautiful first baby, Blair, she didn’t know she had blood cancer.

Just weeks later, she was hundreds of kilometres from her home in Broken Hill, NSW, taking her own first steps on what was to be a long road of life-saving treatment in Adelaide after being given the double diagnosis of acute lymphoblastic leukaemia and lymphoma. Both are dangerous types of blood cancer.

“At first I refused to get on the plane. I had a little baby. I was still breastfeeding. I couldn’t just up and leave. It required some planning. I had lots of other things going on at the time,” Sarah said.

Sarah didn’t want to be apart from Blair – and luckily her mum, Pauline, was there to help.

Becoming a carer

Pauline shares a smile with her granddaughter, Blair
Pauline shares a smile with her granddaughter, Blair

Pauline left her 15-year-old son at home and her business in the hands of her husband and took on the care of her baby granddaughter, while helping Sarah through her treatment.

For the past 12 months the family has been able to stay with the Leukaemia Foundation as Sarah spent weeks in hospital. Every day, Pauline bought Blair to see Sarah so they could spend as much time together as possible – not knowing what the future would bring.

“When Sarah was diagnosed I was very much overwhelmed,” Pauline said. “But I felt I had to hold it all together for her because she not only had herself to think of, but also Blair.

“I was extremely worried we might lose her. It was very hard.

“I never really thought twice about dropping everything to come with her. She is my girl, and she was going through so much at the time. She needed me.

“During the first block of treatment Sarah was in hospital for 38 days. I had Blair the whole time. Luckily she was a fantastic baby and she would eat and sleep so well in the hospital, and Sarah loved having Blair there.

“I’m sure it helped Sarah with her treatment. It kept her positive and hopeful.”

Feeling lonely during cancer

Pauline said at the end of the day there was time for a quick meal, bottles and bed before it would start all over again the next day.

Pauline added: “It was extremely lonely at that time, never really knowing what was going to happen.

“I was lucky I didn’t really have much time to think about it, as I was too busy looking after a baby, running into the hospital to be with Sarah as I didn’t want her to be on her own, and I knew she wanted to be with Blair.

“When we moved into the Leukaemia Foundation accommodation, it was overwhelming to think I wasn’t going to have to worry about the cost of staying in Adelaide for an extended period. I was really relieved.

“Word’s cannot express how I felt. It took a lot of worry off my mind.

“There is a wonderful community here. We support each other and the staff are the best. I don’t know what we would have done without the Leukaemia Foundation.”

Stem cell transplant for blood cancer

Sarah’s treatment was long and difficult. At times she was having three doses of chemotherapy in one day, as well as lumbar punctures – with the treatment being injected directly into her spine to kill off any hidden leukaemic cells.

There were many debilitating twists and turns in Sarah’s treatment, and eventually it led her to a stem cell transplant.

In May 2020, Sarah reached day 91 of 100 post-transplant, only days away from going home after almost 12 months in treatment.

Mum Pauline was by Sarah’s side every step of the way, keeping baby Blair by her side so Sarah was able to continue to be a mum, too.

“I am looking forward to being a mum properly. I’ve lost so many days and nights where I was unwell and couldn’t do normal mum things,” Sarah said.

“I appreciate all the little things now – it’s all the little things I look forward to.”

Sarah, Blair and Pauline
Sarah, Blair and Pauline (L-R) have been treading a difficult path together for a year but the end to Sarah’s blood cancer treatment is finally in sight.

Leukaemia Foundation invests $2.8m in innovative lymphoma research

Leukaemia Foundation invests $2.8m in innovative lymphoma research

Better understanding and treatment of lymphoma is the focus of eight new research projects that are part of the Leukaemia Foundation’s National Research Program over 2019-2022.

This $2.82 million investment into lymphoma research at some of Australia’s leading research centres is aimed at better understanding the biology of lymphoma, using genomics to inform prognosis and therapy decisions, preventing and treating infection, and includes a genomics and other trials to improve outcomes.

Strategic Ecosystem Research Partnerships (SERP)

Of the Leukaemia Foundation’s nine current Strategic Ecosystem Research Partnership projects, two are focused on lymphoma.

Professor Maher Gandhi
Professor Maher Gandhi

Follicular lymphoma (FL) is the most common subtype of slow growing (indolent) lymphomas, making up 20-30% of non-Hodgkin lymphomasProfessor Maher Gandhi, at the Mater Research Institute (Brisbane), is Establishing a new prognostic score for follicular lymphoma to rationalise therapeutic decision-making and improve patient outcomes. There are two stages of FL – early stage, which is potentially curable, and advanced stage, which is incurable and where current therapy is designed to control symptoms and disease burden. There is no way to predict if a person will respond to treatment or not. The aim of this project is to develop a combined immuno-clinical-genetic prognostic score to help predict which patients are high-risk and may benefit from more aggressive treatment, and which patients are at lower risk and whose treatment can be scaled back to minimise drug-related toxic side-effects. Read more about this project which runs until January 2021.

Dr Steven Lane at his desk
Dr Steven Lane
Hamish Scott
Professor Hamish Scott

The second lymphoma SERP project is a new blood cancer genomics clinical trial which will be headed by Professor Steven Lane at the Queensland Institute of Medical Research (Brisbane) and Professor Hamish Scott, University of South Australia, SA Genomics (Adelaide). Many patients with high-risk blood cancers relapse or fail to respond to therapy, and the outcomes for these patients are poor. The Blood Cancer Genomics Clinical Trial is a precision medicine pilot study using genomic screening to identify mutations in the cancer cell DNA; allowing for genetically directed targeted therapy for these high-risk patients who have failed therapy. This trial is in the final stages of development and is expected to start recruiting late-2020/early-2021.

Translational Research Program (TRP)

The Translational Research Program is an initiative that aims to take new and innovative research out of the research laboratory and helps move it into the clinic. The Leukaemia Foundation has partnered with the Leukemia & Lymphoma Society (U.S.) and Snowdome Foundation to co-fund these grants. One of the five current TRP projects is for lymphoma, which is the most commonly diagnosed blood cancer in Australia.

Ricky Johnstone
Professor Ricky Johnstone

The title of Professor Ricky Johnstone’s research at the Peter MacCallum Cancer Centre (Melbourne) is Targeting deregulated epigenetic mechanisms in B-cell lymphomas. One-third of all patients newly diagnosed with non-Hodgkin lymphoma has a diffuse large B-cell lymphoma (DLBCL). As conventional chemo-immunotherapy has a poor outcome for 40% of these patients who either do not respond to the treatment or relapse, there is an urgent need to better understand the biology of DLBCL. Greater knowledge would help to define new clinical biomarkers, design personalised therapies and improve clinical outcomes for these patients.​ DLBCL is characterised by profound alterations in the epigenome; a group of chemical modifications in the DNA and histones that regulate gene expression independently of the DNA sequence. Between now and the end of Prof. Johnstone’s three-year research project, in July 2022, his lab is examining agents that target this alteration of the epigenome, to determine if pre-treatment sensitises DLBCB cells to subsequent chemotherapy. The institutions that are collaborating on this project are Monash University (Melbourne), and in the United States, Weill Cornell Medicine (New York), University of Miami (Florida) and Jackson Laboratory Cancer Centre (Maine). Read more about the search for biomarkers and better treatments for B-cell lymphomas.

PhD scholarships

The Leukaemia Foundation is helping the brightest medical and science graduates pursue a research career in blood cancer by collaborating with the Haematology Society of Australia and New Zealand (HSANZ) to co-fund PhD scholarships.

Over the last two years we have been proud to award six scholarships through our PhD Scholarship Program and five of them involve lymphoma.

Dr Wei Jiang
Dr Wei Jiang

Dr Wei Jiang, of the Westmead Cellular Therapies Group (Sydney), is one of our current PhD Scholarship recipients. Through her project, Clinical safety and efficacy of T-cell immunotherapies for infection and malignancy, Dr Jiang will participate in two clinical trials which could have a significant clinical benefit for patients who take part. One of the trials involves harnessing the power of a new type of engineered immune cell, called CAR-T (chimeric antigen receptor T-cells) and the other trial is looking at the use of pathogen-specific ‘smart’ T-cells in the treatment of resistant viral infections in patients who have had stem cell transplants.

Elizabeth Lieschke
Elizabeth Lieschke

At the Walter and Eliza Hall Institute of Medical Research (Melbourne), Elizabeth Lieschke is investigating the mechanism by which tumour suppressor gene, p53, prevents the development of leukaemia, lymphoma and other cancers; and the processes by which activation of p53 kills malignant cells. The aim of this study is to understand why some blood cancer cells die, while other cancer cells undergo cell cycle arrest/cell senescence and therefore are more likely to relapse following cancer therapy. Ms Lieschke and her team hope to identify biomarkers that will help predict the nature of the response of cancer cells to drugs that activate p53, leading to therapies that will be more personalised and targeted. Mutations in p53 occur frequently in blood cancers that relapse following therapy and for these patients the prognosis is extremely poor. A deeper understanding of the impact of mutations in p53 will inform the design of new therapies that are desperately needed to improve the prognosis for these blood cancer patients. They could act downstream of p53 and efficiently kill mutant p53-expressing blood cancers. Read more about unlocking the key to understanding cell death.

Khai Li Chai
Dr Khai Li Chai

Dr Khai Li Chai of Monash University (Melbourne) is one of our current PhD Scholarship recipients. Her project title is Immunoglobulin therapy to prevent and treat infections in patients with blood cancers: who, why, when and how? Patients with non-Hodgkin lymphoma and other blood cancers who have had an allogeneic stem cell transplant frequently develop a condition called hypogammaglobulinaemia due to their disease or its treatment. In people with this condition, the body doesn’t produce enough antibodies which can result in serious and/or recurrent infection. It is a significant cause of mortality or morbidity in these patients. Immunoglobulin replacement therapy is often administered to these patients but there are substantial variations in recommendations and practise internationally, and there is no clearly defined standard of care. This project will evaluate current practise and clinical outcomes of immunoglobulin treatment and investigate how detailed patient immune profiles can be used to guide and monitor optimal dosing and duration of immunoglobulin therapy.

Julian Lindsay
Julian Lindsay

Julian Lindsay is a bone marrow transplant pharmacist and his research project, Antifungal management optimisation in haematological malignancy and haematopoietic stem cell transplantation, is aimed at preventing infections in people with blood cancer and those undergoing bone marrow transplants. These patients have highly suppressed immune systems due to having chemotherapy and the transplantation techniques used to achieve better cure rates. Based at the Fred Hutchinson Cancer Research Center in Seattle (U.S.), Julian will address critical knowledge gaps related to specific patient risk factors for developing infections such as cytomegalovirus, Epstein-Barr virus and invasive fungal infections, and investigate the optimisation of antimicrobial therapies to prevent infections and improve the survival of these patients.

Dr Karthik Nath
Dr Karthik Nath

Dr Karthik Nath is a haematologist undertaking his PhD at the Mater Research Institute (Brisbane). His research seeks to develop a deeper understanding of the biology of follicular lymphoma (FL) and to use this to predict an individual’s response to treatment using evolving genetic and molecular laboratory technologies. Dr Nath plans to incorporate these elements at the point of diagnosis in FL as a practical way to improve diagnostic techniques and treatment approaches with real-world applicability. The second part of this research titled, Integrating immunity and genetics into follicular lymphoma to establish a prognostic score fit for the modern era will use precision medicine to treat patients with FL by applying patient-specific immunological, molecular and genetic markers in prognostication. The aim being to improve patient outcomes through individualised treatment approaches. Read more about better understanding and improving treatments for FL.

Unlocking the key to understanding cell death 

Unlocking the key to understanding cell death 

Elizabeth Lieschke
Elizabeth Lieschke

Elizabeth Lieschke hopes to influence the future treatment of lymphoma through her research project, Investigating the contributions of cell cycle arrest, cell senescence and cell death in p53 mediated tumour suppression.

Elizabeth was awarded a PhD scholarship from the Leukaemia Foundation and the Haematology Society of Australia and New Zealand (HSANZ) in 2019 and is investigating how mutations in a tumour suppressor protein, known as p53, contribute to the development of lymphoma.

“I hope my research will influence cancer treatment in years to come and contribute to improving the lives of cancer patients. That would be the biggest reward,” said Elizabeth.

Her work is based around understanding how the tumour suppressor protein, p53, functions to stop the growth of cancer cells and her findings could influence how leukaemias and lymphomas are treated in the future.

Scientists have studied p53 for decades, but our understanding of this very important protein is still incomplete. What is known is that p53 has a very important role; it prevents or suppresses the capacity of cells to become cancerous, which is why it is called a tumour suppressor protein. Mutations in p53 have been frequently observed in blood cancers and other cancers. These mutations in p53 prevent it from doing its normal tumour suppressor function and are thought to play an important role in the development and growth of lymphomas.

“We know that once p53 is activated, a cell can follow a number of different paths. The cell can either die or pause its growth and go into a sleep-like state. We want to understand what causes some cells to die while others stay alive but stop growing,” said Elizabeth.

“To study this, we are using a number of models of normal cells and blood cancers, to examine what happens to them after p53 is activated. We will then look for other changes in the cells that could explain why some die and others stay alive.”

Elizabeth, whose parents both work in medical research, has already assisted in developing insights into lymphoma by contributing to several ongoing projects in the laboratory. Her PhD research project is the next step in her scientific career.

“So far, it has been a lot of tool validation and setting up long-term experiments,” said Elizabeth.

“We look forward to sharing some results soon, but it’s much too early at this stage.”

“I’d love to say a big thank you to the Leukaemia Foundation and Bridgestone Australia for making  this funding possible.

“It is wonderful that these scholarships are available to support the next generation of scientists. I feel honoured to be awarded this scholarship and look forward to sharing the research findings it has funded.”