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I took control after becoming adrift in the system

I took control after becoming adrift in the system

The long wait for a diagnosis took its toll on Bronwyn Bisley, but her biggest challenges lay ahead as the information she desperately needed dried up.

Bronwyn Bisley with brother, Cameron who was a huge support during her treatment
Bronwyn with brother, Cameron who was a huge support during her treatment.

After feeling run-down and noticing swelling in her neck, the mother-of-three visited her doctor where a CT scan seemed to show Bronwyn had breast cancer.

It was an opinion that set in motion a significant series of events: a referral to an oncologist, more appointments and scans, biopsies and, eventually, surgery.

But breast cancer was eventually ruled out and Bronwyn was instead referred to a haematologist 200km away in Melbourne.

Bronwyn said: “Finally, about three months after my first CT scan scare, my blood cancer diagnosis arrived – by Skype.

The haematologist said I would need chemotherapy, six months leave from work and she asked if I had questions. I had absolutely no idea what to ask.

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

Bronwyn was unsure about what lay ahead. She faced “distressing” chemotherapy sessions and debilitating side effects, felt like she didn’t have enough information or support, and had to wait two months between seeing her haematologist.

Overwhelmed, Bronwyn took the frightening decision to press pause on her life-saving treatment.

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

Bronwyn with her children, Maggie, Miles and Grace
Bronwyn with her children, Maggie, Miles and Grace.

Bronwyn decided to take control. She dedicated time to get the information she needed. She spoke to experts and friends and eventually travelled to Melbourne, two hours from her hometown, to meet another haematologist.

Feeling empowered and supported, it wasn’t long before Bronwyn was back having more individualised treatment in a way that better managed her side effects.

The information she gathered also saw her make positive changes to her lifestyle that helped her recovery.

The 50-year-old from regional Victoria, now back at work, said: “I never experienced those horrendous symptoms or side effects again. I was more informed, and everything became a lot better.

“It would make a huge difference if everyone with blood cancer was given the information, ideas, connections and support they needed right from the get-go.”

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:

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New research breakthroughs

New research breakthroughs

Researchers such Dr Siok Tey are dedicated to driving rapid advancements in treatments, discovering new therapies, and launching innovative clinical trials.

Dr Siok Tey
Dr Siok Tey in the lab

Dr Tey is a leading Australian expert in bone marrow transplantation and cancer immunotherapy.

“I fell into research by accident; towards the end of my specialist training, I had a teenage patient with very problematic Hodgkin lymphoma,” said Dr Tey.

“Seeing how patients were struggling through the chemotherapy or radiotherapy treatment is what inspired me to enter the field of immunotherapy, where the immune system is used to kill cancer cells instead.

“I wanted to help make this promising field a therapeutic reality for our patients.”

“I was very fortunate the Leukaemia Foundation awarded me a PhD scholarship, enabling me to focus on my research training and develop my career as an academic clinician.”

Dr Tey is a senior research fellow at the QIMR Berghofer Medical Research Institute and a practising clinical haematologist at the Royal Brisbane and Women’s Hospital (RBWH).

Dr Tey’s current research focus is bone marrow transplantation and immunotherapy.

“Bone marrow transplantation is a type of immunotherapy where the transplanted donor cells are very good at killing leukaemia cells.

“Unfortunately, these cells can also damage other organs, causing graft-versus-host disease (GVHD).”

Dr Tey is currently part of part of a nationwide collaboration formed to tackle GVHD and improve bone marrow transplant outcomes.

Leukaemia Foundation has contributed $1million over five years to this effort which will have a huge impact for transplant recipients.

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Providing a home full of heart

Providing a home full of heart

Photo of the Nield family, sitting together in a large field
The Nield family at their farm on the Eyre Peninsula

The Nield family were overwhelmed by the kind and thoughtful care provided by the Leukaemia Foundation while seven-year-old son, Rocco, battled Hodgkin lymphoma (HL).

A farming and fishing fanatic, Rocco’s life on the Nield’s family farm was a-buzz with the best days spent out on the header reaping wheat with Dad. Always full of energy and never showing any signs of being unwell, the family were rocked by Rocco’s first HL diagnosis three years ago.

Our son Rocco’s 6th birthday we will never forget. My husband Joel and I sat stunned watching him in his hospital bed. Just the day before they put a port under his skin so they could easily administer the chemotherapy drugs; he was still sore from this. ‘Chemotherapy for your 6th birthday’ I thought to myself. The hospital staff came into his room and sang him ‘Happy Birthday’. It all seemed so surreal. I knew this was a day we would always reflect on.

–Emma Nield, mum of lymphoma-survivor Rocco

“At football one weekend a friend pointed out Rocco’s chin looked slightly bigger on one side,” explains Emma, Rocco’s mum. “This lump on his throat started growing rapidly and Rocco was diagnosed with HL in the following weeks.

Rocco Nield playing outside
Seven-year-old son Rocco bravely battled Hodgkins lymphoma

The growth was able to be removed completely and life went on for the family with Rocco being closely monitored.Devastatingly, late last year the cancer returned and the family had to leave their home so Rocco could receive life-saving treatment in a capital city.

“We were told we would need to be in Adelaide, six hours drive from our home, for four months while Rocco had chemotherapy.”

Emma wasn’t having much luck finding a suitable place to stay when she came across the Leukaemia Foundation online, offering accommodation for families going through a blood cancer diagnosis.

Rocco Nield in the hospital after chemo
Rocco on his last day of chemo

They were provided with a three-bedroom unit at the Bridgestone Australia Leukaemia Foundation Village, perfect for the family, with younger sisters, Capri, 5, and Maisie, 2 in tow.
“We were provided with such a beautiful unit just a short 10-minute drive from the hospital, making life so much easier,” said Emma.

“The village is gated so we felt safe and my parents could also stay to help look after the girls while Rocco, my husband Joel and I went back and forth to the hospital.

“I was breastfeeding our baby and really needed my girls to be with us, it would’ve been so horrible for all of us to be separated during that time.”

One of Emma’s main concerns was keeping the kids occupied while staying at the village as they were used to having the run of the farm.

“But the village had a lovely playground, a playroom, library and gym to keep our young kids entertained,” said Emma.

“We were also able to use their office space for tutoring for Rocco and the staff often integrated us into office activities.

Rocco planting veggies outside the accommodation centre
Rocco planted vegetables at the unit for the next family to enjoy

“We had Halloween with the staff and helped them decorate their Christmas tree  – they were just so wonderful throughout our entire stay and made us feel at home.”
The family also appreciated the village staff’s understanding of Rocco’s change in behaviour due to aggressive treatment.

“Steroid treatment, many anaesthetics and chemotherapy sometimes changed our happy boy into aggressive and violent,” explains Emma.

“The staff never made us feel bad about this, they gave us all the time we needed in the village and supported us whenever they could.

“We also loved meeting the other families in the village who were a great source of comfort, support and friendship in what would’ve been an otherwise isolating time.”

The Nields were able to return home just before Christmas with the family recently receiving the news that Rocco is cancer-free and in remission.
“Rocco is doing really well now, free of his cancer and back at school,” said Emma. “He will continue to have checkups every three months in Adelaide.”

“The Leukaemia Foundation has also provided information about lymphoma including a book for children that we were able to share with Rocco’s school to understand what he’s been through.

“We will be forever grateful for the amazing support and real friendship we were shown in the village – we couldn’t have made it through without it.”

Nield family at their farm
The Nield family at their farm on the Eyre Peninsular

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.”

Bronwyn advocated for when and where she was treated

Bronwyn advocated for when and where she was treated

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

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

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

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

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

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

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

Her long journey to being diagnosed

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Bronwyn’s treatment experiences and decisions

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Support from the Leukaemia Foundation

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

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

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

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

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

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

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

“To me they were life-changing events.

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

Getting on with life after treatment

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

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

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

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

How lymphoma has changed Bronwyn

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

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

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

Bronwyn’s advice

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

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

 

Make Blood Cancer Visible

Make Blood Cancer Visible

Pharmaceutical company Janssen are hoping to Make Blood Cancer Visible.

Make blood cancer visible book coverTo support patients and their families, this campaign asked people impacted by blood cancer to help make themselves visible either by sharing images or personal stories of their journey with blood cancer.

These have been gathered into the Make Blood Cancer Visible Patient Perspectives bookOpen this document with ReadSpeaker docReader – a beautiful collection of stories shared by Australians who have faced blood cancer. The Leukaemia Foundation is proud to have been involved with the production of this book, which is filled with our facts and statistics, along with stories of people who have used our services.

Click hereOpen this document with ReadSpeaker docReader to download the book.

Lymphoma has made me value my life

Lymphoma has made me value my life


Kristy Pyle was diagnosed with a blood cancer called lymphoma. The following are all Kristy’s words, shared with the Leukaemia Foundation to help raise awareness of blood cancer during September’s Blood Cancer Awareness Month 2019. 

I was 29 with a 3 year old daughter when I found a lump the size of an egg in my neck. That was a Saturday. On the Monday I went to the doctor, he booked me in for tests – which revealed I had cancer.

I went to see an Oncologist and began Chemo treatment within two weeks. He revealed I had Stage 2 Hodgkin Lymphoma.

Kristy Pyle on the beach

We had to travel to Albury every second Tuesday which was a 3 hour round trip. It was tough and made me very very sick for the remainder of the week, I would come good the next week then back for the next treatment on the following Tuesday, I had 8 rounds of chemo!

I then began radiation treatment. I had it each day for 19 days, so once again a 3 hour round trip each day!

It was a lot of travelling but it was important to me to keep things as normal as possible for my 3 year old daughter.

Now 11 years on I am cancer free. I still have yearly check ups which I don’t mind going too as it gives me piece of mind that I am still ok.

Having cancer has made me really value my life, I don’t take things for granted, I tell those I love that I love them all the time. I always tell people to be aware of their bodies, check themselves for any changes and as scary as it is to get checked quickly.

Having cancer is scary but I am thankful everyday that I got better.

My Oncologist Dr Richard Eek from Border Medical Oncology is my hero – he saved my life and I will be forever grateful to him.

World Awareness Day for Australia’s most common blood cancer

World Awareness Day for Australia’s most common blood cancer

Sunday 15 September, 2019

A recent report released by the Leukaemia Foundation has revealed the true size and impact of the blood cancer lymphoma in Australia is far greater than was previously known. 

The report shows currently around 6500 Australians will be diagnosed every year with a lymphoma making it Australia’s most common blood cancer. Sadly, 1600 Australians will lose their life to the disease.

The report also reveals that by 2035, these rates will almost triple. By then, 17,000 Australians are expected to be diagnosed with lymphoma, and more than 5000 will lose their fight with the disease.

Sunday, September 15 is World Lymphoma Awareness Day and the Leukaemia Foundation is highlighting the staggering new findings of the State of the Nation: Blood Cancer in Australia Report, which reveal lymphoma’s currently account for around 40 percent of all blood cancer diagnosis, and around 30 per cent of all blood cancer related deaths.

There are two main types of lymphoma – Hodgkins lymphoma (HL) and the far more common non-Hodgkins lymphoma (NHL) which can be broken into more than 30 unique sub-types.

Leukaemia Foundation CEO Bill Petch said while survival rates for lymphoma had improved significantly – as high as 87 per cent for some types of lymphomas – lives could be saved by accelerating research and improving access to the best possible treatments for all Australians.

“Blood cancer is at the forefront of new, precision medicines which have helped improve treatment pathways and survival rates, but we can do better,” Mr Petch said.

“The report shows us that we can steer toward a future where no Australian will die from lymphoma,” Mr Petch said.

The Leukaemia Foundation has set a bold new goal to achieve zero lives lost to blood cancer, including lymphoma, by 2035.

“To achieve this, we need to collaborate to ensure every Australian has access to the right information, the best treatments and services, and the latest trials, tests and diagnostic tools that will not only help them to survive, but also to live well.”

The first of its kind, State of the Nation: Blood Cancer in Australia Report was released on September 1 to launch Blood Cancer Awareness month, and led Federal Health Minister Greg Hunt to announce Australia’s first Blood Cancer Taskforce to develop a National Action Plan to help tackle the key issues facing the blood cancer community today, and into the future.

“The formation of the Taskforce and the development of a National Action Plan mark a major milestone for the blood cancer community and will set the national agenda around blood cancer for many years to come.”

The new Blood Cancer Taskforce will meet for the first time on September 30.

For more information about lymphoma, and to register for the Leukaemia Foundation’s disease specific newsletter Lymphoma News, go to https://www.leukaemia.org.au/disease-information/lymphomas/

What is Lymphoma? 

  • Lymphoma is the general term for cancers that develop in the lymphatic system. The lymphatic system is made up of a vast network of vessels (similar to blood vessels) that branch out into all the tissues of the body.
  • These vessels contain lymph, a colourless watery fluid that carries lymphocytes, which are specialized white blood cells that fight infection.
  • There are two types of lymphocytes, B-lymphocytes and T-lymphocytes (also called B-cells and T-cells). These cells protect us by making antibodies and destroying harmful microorganisms such as bacteria and viruses.
  • Lymphoma originates in developing B-lymphocytes and T-lymphocytes, which have undergone a malignant change. This means that they multiply without any proper order, forming tumours which are collections of cancer cells. These tumours cause swelling in the lymph nodes and other parts of the body.
  • Over time, malignant lymphocytes (called lymphoma cells) crowd out normal lymphocytes and eventually the immune system becomes weakened and can no longer function properly.

The Leukaemia Foundation’s State of the Nation: Blood Cancer in Australia Report shows:

  • Today, Lymphoma accounts for 40 per cent of all blood cancer diagnosis each year and is the most commonly diagnosed blood cancer in Australia today. Non-Hodgkin lymphoma (NHL) (37 per cent) is much more common than Hodgkin Lymphoma (HL) (5 per cent)
  • In Australia it’s more common to be diagnosed with a lymphoma than with leukaemia
  • There are more than 50 different sub types of lymphoma
  • Currently, the five-year survival rate for all NHLs combined is 74 per cent. For HL the five-year survival rate is 87 per cent
  • The number of Australians diagnosed with lymphoma each year will jump from 6400 today to more than 17,000 by 2035
  • Out of the projected 275,000 Australians who will be living with blood cancer by 2035, lymphomas will account for 158,000
  • It’s expected 64,140 Australians with lymphoma will die between 2019 and 2035

View the full State of the Nation: Blood Cancer in Australia Report here.