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“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.”

World Lymphoma Awareness Day Webinar

World Lymphoma Awareness Day Webinar

As part of World Lymphoma Awareness Day on 15 September we’re aiming to increase awareness for lymphoma, celebrate breakthroughs in treatment and acknowledge what still needs to be done.

We’re proud to bring you a free, webinar series featuring lymphoma expert Dr Glenn Kennedy and lymphoma survivor Julie Allen.

Speakers

Dr Glenn Kennedy – Executive Director of Cancer Services at the Royal Brisbane and Women’s Hospital. Presenting on CAR-T cell therapy including an overview of CAR-T and its relevance to lymphoma patient population. View Glenn’s presentation.

Ms Julie Allen – Physiotherapist and lymphoma survivor. Presenting on patient perspective and exercise as treatment for lymphoma patients. View Julie’s presentation.

Both of these presentations will be pre-recorded and are available now for viewing on our YouTube channel

Heartfelt thanks to our partners for supporting Blood Cancer Awareness Month’s patient information and education:

AbbVie logo

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.”

“I wasn’t told anything about my diagnosis”

“I wasn’t told anything about my diagnosis”

Samantha and husband Anthony on the beach
Samantha Mitchell and her husband, Anthony on the beach at Hervey Bay

Having cutaneous lymphoma hasn’t limited Samantha Mitchell’s adventurous lifestyle.

Along with phototherapy treatment and lobbying for better access to new therapies, the 46-year-old trains and competes in half marathons and goes camping with her family.

Samantha lives at Hervey Bay (Queensland) with her husband, Anthony and their two daughters, Taylah, 11, and Jordi, 13, and she’s passionate about the great outdoors.

Her journey with cutaneous T-cell lymphoma (CTCL) began in 2010 (when the family lived in Darwin) as a small lesion on the trunk of her body, but it took two years for Samantha to get a diagnosis.

Samantha with her daughters, Jordi and Taylah, on the beach
Samantha with her daughters, Jordi, left, and Taylah

Initially, thinking she was “having a reaction to something”, Samantha, started changing her washing powder and anything else she thought may be the cause. But over the following year, the lesion slowly started to spread.

“I wasn’t too worried… as it did not affect me in any other way,” said Samantha.

In 2011, she had a career change, becoming a paramedic, and by the time she and Anthony married in 2012, the lesions had spread to her arms and legs.

Getting a diagnosis

An example of an infected skin lesion from Samantha’s CTCL
An example of an infected skin lesion from Samantha’s CTCL

When Samantha went to a doctor and was told she had eczema, she didn’t agree.

“I know my body, it wasn’t that,” she said.

Two weeks later, Samantha saw another doctor for a second opinion and was referred to a dermatologist, but she had to wait eight months for an appointment.

She felt a little nervous when she went to discuss the results from a biopsy, in November 2012, “but I wasn’t sure why, as I’m an optimist”.

“When I went in, he [the dermatologist] was typing away. He looked at me, said I had mycosis fungoides**, then kept typing,” explained Samantha.

A minute passed before he looked at her again and asked, “do you know what that is?”.

“I said ‘no’. He replied with ‘cancer’ and kept typing.

“Water welled in my eyes as I started to think the worst. When he saw this, he passed me a box of tissues, wrote down the name [ mycosis fungoides ], and told me to go home and Google it to find out more.

“Then he told me that I would need to do phototherapy and wanted to take photos of the lesions on my body for research.”

After this shock diagnosis of CTCL Stage II mycosis fungoides (MF), Samantha felt confused and upset, having been offered little to no comfort, and left to research the blood cancer herself. When she told her husband, he was speechless, and they decided not to tell their daughters, aged four and six at the time.

“It was only later on in life, as they got older and started asking questions that I explained what I had,” said Samantha.

Phototherapy (UVB) treatment

She began having phototherapy (UVB) treatment three times a week at a Darwin hospital along with blood tests every six months.

“After three years of UVB treatment and steroid creams, the lesions started to disappear and I was left with only a few small ones,” she said.

When Samantha and her family moved to Hervey Bay, in 2015, she found it difficult to access treatment as phototherapy wasn’t available there.

“I saw a specialist at the Sunshine Coast who had phototherapy but the distance to get there was a round trip of six hours,” she said.

Her specialist recommended Samantha buy her own hand-held UVB machine to use herself at home, and it wasn’t cheap. She used this three times a week for a while, but due to the number of lesions she had, and spending up to 1-2 hours for each session, and as the lesions increased in size, her hand-held machine “wasn’t enough”.

“I ended up purchasing a bigger machine; the size of a laptop,” said Samantha.

“I am still using this now but find it’s not as effective as standing in a booth [like the one used in hospital].”

Dealing with infection

In 2018, Samantha had a lesion on her arm which became infected and changed to a growing deep wound.

After going to a GP every two days for different types of wound dressings and changes and taking antibiotics for several months, the doctor advised there was nothing else he could do, advising her to see a dermatologist.

“After seeing my specialist, a swab was taken and I was prescribed antibiotics for staphylococcus aureus which then healed the wound,” explained Samantha.

“At this time, I was unaware that the most common infection of MF is staphylococcus aureus bacterium.”

At one point, in 2019, she was prescribed further courses of antibiotics for a few months after the lesions on her legs became infected.

“I was also prescribed Neotigason, a retinoid for oral treatment which assisted with healing and clearing a lot of the rashes,” she said.

“I took the oral medication for eight months until the side-effects became too much. Then I came off them from advice of my specialist.

“Though I am continually treating the back of my legs, most of the rashes have cleared from my trunk and arms after taking the oral medication and completing a for six-week course of ultraviolet light (three times a week) in the booth at Maroochydore [on the Sunshine Coast].”

“They were so sore, I couldn’t even sit at work and had to kneel on the floor,” said Samantha.

“And my work pants would stick to my legs from the moisture of my infections.”

Combining home treatment with specialist appointments

Now, Samantha combines home treatment with fortnightly visits to the specialist at Maroochydore for a powerful dose of UVB and UVA.

“I have found the UVA to be really effective,” she said.

“It has cleared the lesions quicker than if I had only used UVB.

“Steroid creams and moisturiser also help me manage the lesions.”

Working to improve accessibility 

Samantha hopes to see accessibility to treatment improve for others like her, and in May 2019 she contacted the Queensland Health Minister regarding the installation of a phototherapy unit at the Hervey Bay hospital.

“I have come across a lot of people with other skin issues who would also benefit,” she said.

“I received a response in September 2019 from the Health Minister advising that Wide Bay Health Service does not currently have specialists, support or training in place for provision of treatments such as phototherapy.

“Since then I have spoken to a GP from a Hervey Bay skin clinic who is looking into purchasing a machine for his clinic. I have followed up with the clinic since then but am still awaiting a response. I will continue to follow up.”

Samantha also is open to taking part in a clinical trial for a new therapy for the treatment of cutaneous lymphoma, to improve understanding of the disease and to help more people access the right treatment for them.

Leukaemia Foundation support

“I received a great information pack from Leukaemia Foundation. It gave a very clear explanation of diseases and staging and assistance that is available for people living with blood disorders,” said Samantha.

“I also received a call from a lovely lady from the Leukaemia Foundation who provided useful information in regard to obtaining patient travel subsidy through the patient travel subsidy scheme (PTSS) which I was unaware of.”

Advice to others living with blood cancer

Samantha reminds others who are living with blood cancer to “take one day at a time”.

“There are times when I get tired and I just don’t want to do it,” said Samantha.

The constant cycle of treatment is draining, but her family’s support and a gentle push from her husband keeps Samantha going.

“I have found gratitude and I am thankful for everything I have right now,” she said.

“My family and I often go camping, we love the outdoors, and it helps me to relax.”

Fitness also has helped Samantha live life to the fullest. Last year (2019), Samantha run in two half marathons and completed the 55km Oxfam trail walk in June.

Samantha holding a half marathon medal after finishing the race
Samantha after completing the half marathon in the 2019 Rainbow Beach Trail Festival

“I was preparing to run in the Hervey Bay Bay Break this year but decided to stay low and healthy until coronavirus is clear, as I work at our local hospital as a physiotherapy assistant,” said Samantha.

“Instead I am keeping myself healthy and busy by building retaining walls at my new block where we are building our new home.

“I have also started mixed aerial – tricks on a hanging hoop and silk. This has been challenging for me, but I am loving it.”

Hearing about the journeys of other people with skin lymphoma has been helpful, and YouTube has been an invaluable resource for Samantha. That’s where she found the Cutaneous Lymphoma Foundation’s Patient Education Forum.

Samantha hanging from some aerial yoga ropes
Mixed aerial is Samantha’s latest challenge

Now Samantha hopes to make life easier for those living with cutaneous lymphoma.

“I would love to share my experiences and help spread word of educational resources to assist others who have the disease,” she said.

“I have found that even experts in the field don’t have all the answers and the more that we can share, the better.”

*  Cutaneous lymphoma is a rare subtype of non-Hodgkin lymphoma (NHL) that starts in the skin. It is not classified as a skin cancer because the cancer cells originate in white blood cells called lymphocytes, whereas skin cancers develop from other non-lymphoid cells.

**   Mycosis Fungoides (MF) is the most common form of cutaneous T-cell lymphoma (CTCL). MF can look like other common skin conditions like eczema or psoriasis and might be present for years or even decades because it is diagnosed, progressing over many years, often decades.

 

Blood cancer doesn’t stop: John-Michael’s story

Blood cancer doesn’t stop: John-Michael’s story

Belinda and John-Michael Barrie stand outside in a garden, smiling
Belinda and John-Michael Barrie

John-Michael has been living without an effective immune system since his bone marrow transplant to treat his blood cancer nearly a decade ago.

Although he’s now blood cancer-free, he still needs monthly treatment to have a fighting chance against infections. That makes John-Michael one of the more vulnerable members of the Australian community during the COVID-19 outbreak.

He shares with you the ways he’s protecting himself and his wish that people will prioritise their health and hygiene long after the coronavirus has run its course.

It’s taken a global pandemic for people to get a taste of my everyday.

Immunosuppression

The body’s immune system normally makes enough antibodies to fight germs that cause infections. But if you have an immune deficiency, like me, your body can’t make enough of them. I’m at greater risk for infections that could make me very sick.

I’m still immunosuppressed after my bone marrow transplant in 2011. Unfortunately, things haven’t gone well since then and I need a blood product every month that’s a general immune booster, giving me some semblance of an immune system.

Adjusting to the environment

I’m not really going out at all right now. When I do go anywhere it’s only to trusted places. I considered going into the Leukaemia Foundation facilities recently a low risk activity. I know everyone at the Leukaemia Foundation is acutely aware of the need to be hygienic and healthy when interacting with people living with blood cancer.

A safe haven

The year after the transplant, my wife, Belinda, and I bought an acre in a rural area called Lockrose which has proven to be a godsend during this time. We bought it with the view of giving myself a quiet place to recover. We can easily lock the doors and isolate ourselves here. It’s providing the haven I need.

Telehealth and hospital visits

I was in hospital for an unrelated fever a couple of weeks ago and then had follow up appointments yesterday, which were done over telehealth. I just had to go into Toowoomba hospital to have a blood test done beforehand. We were able to go up late in the day, just before closing, when there wasn’t really anyone around.

It’s about adjusting my plans to account for what’s going on and ensuring I pick my times wisely to avoid crowds. There were checkpoints up at the hospital but there wasn’t any staff or patients around because it was a very quiet time of day.

Accessing treatment

I’ve got my monthly treatment soon, which is still going ahead at this stage. It’s three hours of treatment in outpatients and the drug is administered intravenously.

I’m a little concerned about being exposed to something in the general hospital but know the cancer department will be on alert more than usual. I feel safe there. Much the same as at the Leukaemia Foundation; the medical staff are acutely aware of the need to be healthy and hygienic for people with compromised immune systems.

I’ve often said in the event of an airborne crisis I’m going to get myself into Ward 5C, the oncology ward at the Royal Brisbane Hospital. I’ll just wait out quarantine in there because they’re properly set up and even have their own air supply!

Please, stay home

I’m urging everyone to keep up with the self-isolation. If you think you’re an infection risk please stay at home. But, also, don’t go overboard with the panic; try to carry on with life as much as you can while being conscious coronavirus is out there, and you need to behave accordingly. Wash your hands, blow your nose, cover your cough – all those good things your parents taught you. And look out for each other.

Hygiene and cleanliness

I do find it interesting to see all the sudden interest in washing hands and coughing into sleeves.  It’s a little bit sad it’s taken a global pandemic for people to start to be concerned. My great personal wish is that when this has run its course, people still maintain that high level of personal hygiene and cleanliness that coronavirus has forced on them.

John-Michael and Belinda’s lasting gift

Since his diagnosis, John-Michael and his wife, Belinda, have a keen interest improving outcomes for people living with blood cancer.

For them, leaving a gift in their Will is the perfect way to be part of something bigger and make a positive difference in the fight against blood cancer.

Click here to watch their gift in Will story and how you too can make sure people living with blood cancer are always well supported, especially during a crisis like COVID-19.

#yourstorycounts

Share your story of living with blood cancer in the COVID-19 crisis.

Tell us how the outbreak has impacted your every-day life and how the Australian community can best support you through this uncertain time.

Also share your message of support for other blood cancer families and advice for keeping safe during the outbreak.

We may then share on this page for our blood cancer community.

Email storyhub@www.leukaemia.org.au with your story.

Access to CAR-T therapy will now be available to Lymphoma patients

Access to CAR-T therapy will now be available to Lymphoma patients

Tuesday 28 January, 2018

The Leukaemia Foundation has welcomed today’s announcement by Federal Health Minister Greg Hunt to expand access to the innovative CAR T-cell treatment Kymriah to some patients battling some particular forms of lymphoma.

Access to the ground-breaking treatment will now be available to between 200 and 250 additional patients living with the blood cancers diffuse large B cell lymphoma, transformed follicular lymphoma and primary mediastinal B cell lymphoma each year.

Today’s announcement follows the positive recommendation from the Medical Services Advisory Committee.

Leukaemia Foundation CEO Bill Petch said the announcement was another strong step forwards to giving more Australians living with blood cancer better access to the best and most innovative new treatments available.

“This treatment has been available to patients in many other countries for some time, and the Leukaemia Foundation is pleased that today, adult Australians with particular types of lymphoma will have the same access.

“With the number of Australians facing a blood cancer diagnosis continuing to rise, the Leukaemia Foundation looks forward to CAR-T therapy and other similarly innovative therapies being made available to more Australian patients in the future.”

The therapy was approved in Australia for paediatric patients living with forms of acute lymphoblastic leukaemia (ALL) only last year.

The Minister also today announced Melbourne’s Peter MacCallum Cancer Centre will become an Australian hub and global centre for manufacturing Kymriah, supporting Australian patients to receive treatment in Australia.

Mr Petch said ensuring equal access to new treatments was a crucial key to conquering blood cancer, and Australian manufacturing of this treatment represented further progress towards this goal.

“To have this innovative treatment manufactured locally in Melbourne at the same facility where it will be used to treat patients improves its accessibility and represents a significant leap in Australia’s support for CAR-T therapy broadly,” he said.

The Leukaemia Foundation has strongly advocated for CAR-T therapy to be publicly subsidised in Australia and has committed to supporting patients with free emotional and practical support including accommodation close to the treatment centre for the full duration of the treatment period.

“We want to make sure that all eligible Australians have equal access to this procedure, whether they live in a metropolitan city or rural town, anywhere in Australia,” Mr Petch said.

CAR-T therapy involves harvesting a patient’s T-cells – a type of immune cell – and genetically engineering them to attack and destroy cancerous cells. The cells are then reintroduced into the body’s blood stream, where they search, and kill, cancerous B-cells.

“Patients who will access this treatment who have relapsed may have no other option and it therefore presents a better chance of survival.”

Without government funding, the treatment costs more than $500,000 for each patient.

The Leukaemia Foundation recently announced the release of a first of its kind, State of the Nation: Blood Cancer in Australia report which recognised CAR-T cell therapy as just one example of the innovation taking place in the treatment of blood cancers.

Among recommendations in the game-changing report was the need to give all Australians better access to the best treatments available. With the support of the Federal Government, 30 of Australia’s blood cancer leaders have formed the country’s first Blood Cancer Taskforce which is now working on the first National Strategic Action Plan for Blood Cancers.

“The Leukaemia Foundation is proud and privileged to stand with Australia’s remarkable blood cancer community to make sure everyone has access to the best care, to accelerate research delivering rapid advancements and to empower people with blood cancer to live well,” Mr Petch said.

“We’re not going to stop until together we have cured and conquered one of Australia’s most prevalent and deadly cancers.”

The Leukaemia Foundation is also working towards a new goal to see zero lives lost to blood cancer by 2035.

Find out more about the State of the Nation: Blood Cancer in Australia report and the Blood Cancer Taskforce.

Subscribe to receive the Leukaemia Foundation’s news and updates here.