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Leukaemia Foundation invests in innovative MDS research 

Leukaemia Foundation invests in innovative MDS research 

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

This $940,000 investment into MDS research at some of Australia’s leading research centres is aimed at understanding the genetic changes that drive disease progress, developing genetic testing, preventing infection, investigating better treatment options, and providing access to new treatments through clinical trials.

Strategic Ecosystem Research Partnerships (SERP)

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

Dr Steven Lane at his desk
Dr Steven Lane

Understanding the pathways that regulate transformation of normal stem cells to MDS and leukaemia is the title of  Professor Steven Lane’s project at the Queensland Institute of Medical Research (Brisbane). Prof. Lane is seeking to understand the genetic changes that occur as normal cells progress to become MDS and then to become leukaemia. He also is examining the mechanism of action of azacitidine (Vidaza®), the only PBS-funded therapy for MDS. On this project, Prof. Lane’s lab is working with collaborators in Germany, at the National Center for Tumour Diseases (Heidelberg) and the German Cancer Research Center (Heidelberg), and Professor Andrew Perkins’ group at Monash University (Melbourne).

Precision medicine is an approach to patient care that allows doctors to select treatments based on a patient’s genetic profile and has the potential to transform the delivery of healthcare today and into the future.  Genetic and genomic testing, also known as genomics, is the pathway to precision medicine. However, the widespread use of genomics as the standard of care in clinical practise is not yet a reality for blood cancer patients.

Anna Brown in the lab
Dr Anna Brown

Dr Anna Brown at the SA Genomics Health Alliance, Haematological Malignancies Node, University of South Australia (Adelaide), is developing state-of-the art genomic testing which can be used to diagnose blood cancer and monitor disease progression as well as helping the clinical team in treatment selection. Twelve months into this project, Dr Brown and her team have developed, tested and put into clinical practise a single tube genomic test  which can identify mutations in more than 40 clinically relevant genes in MPN, MDS, Primary and Secondary AML, atypical CML, chronic neutrophilic leukaemia, mastocytosis, CMML and JMML. In the next few months this test will be expanded to identify more than 60 genes and in myeloma. Read more on Dr Brown’s research that is due to be completed in November 2020.

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 MDS, which is one of the most common blood cancers among the elderly, and which has few treatment options.

Dr Ashwin Unnikrishnan
Dr Ashwin Unnikrishnan

While the drug, azacitidine is the best available treatment for people with MDS, more than half of those who receive the treatment don’t respond. As well, a significant number of MDS patients who do respond to azacitidine will eventually relapse, which highlights a need to develop more effective and durable therapies. At the University of NSW (Sydney) Dr Ashwin Unnikrishnan is investigating molecular mechanisms within MDS cells affected by azacitidine, as a means to developing new treatment options for MDS. His project title is Beyond azacitidine: investigating new therapeutic strategies for the treatment of MDS and he is collaborating with St Vincent’s Hospital (Melbourne) and Technical University of Denmark. Read more about Dr Unnikrishnan’s research.

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 one of them focuses on allogeneic stem cell transplants, the most common type of transplant for people living with MDS.

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.

Trials Enabling Program (TEP)

In an Australian first, the Leukaemia Foundation has established a Trials Enabling Program in partnership with the Australasian Leukaemia & Lymphoma Group (ALLG). The aim of this initiative is to help people with blood cancer access the latest therapies by bringing international clinical trials to Australia.

Associate Professor Andrew Wei in the lab
Associate Professor Andrew Wei

Associate Professor Andrew Wei is principal investigator for the AMLM24 trial for newly diagnosed AML and those with MDS (FLT3 mutation). It is a multi-centred trial run out of Monash University (Melbourne), in collaboration with the ALLG.  Most clinical trials are for people who have relapsed or no longer respond to available treatments, but this trial is looking at a new treatment regimen as a frontline treatment at diagnosis. The AMLM24 trial is co-funded by HOVON (the Haemo Oncology Foundation for Adults in the Netherlands) and AMLSG (the Acute Myeloid Leukaemia Study Group, Germany).

Professor Ulrich Steidl describes research as “a team sport”

Professor Ulrich Steidl describes research as “a team sport”

Dr Ulrich Steidl
Ulrich Steidl is an experimental haematologist who specialises in MDS and AML research

The Professor of Cell Biology and of Medicine (Oncology) at Albert Einstein College of Medicine, and associate chair for translational research in oncology at Montefiore Health System (New York) spoke to MDS News at the International Society of Experimental Hematology (ISEH) conference in Brisbane in 2019. His presentation was on Understanding and Targeting the Stem Cell Origins of Myeloid Malignancies.

What does an experimental haematologist do exactly?

The treatments applied to patients in the clinic involve a decade-long process of research and development. An experimental haematologist does all the work that happens pre-clinically; the experimental work that ultimately leads to something that helps develop therapies. This is everything that goes on before and including clinical Phase I, II or III trials – the clinical testing. It also includes the study of normal blood and bone marrow and normal blood cell formation and generation, and how blood cells function, which is a very important part of that research. This basic biology is an extremely important starting point for the study and understanding of diseases.

“If you don’t know what’s normal, you can’t understand what is going wrong.”

Tell us about your background

I trained as a physician scientist. At medical school I quickly realised just medical school was not what I wanted to do. I wanted science training and education, so simultaneously pursued a PhD in a leukaemia lab. For my clinical training, I picked medical haemato-oncology, but found the clinical care of patients, especially with leukaemia, incredibly frustrating because the cure rates of many of the diseases I am now researching in the lab are very low, especially MDS and AML. You see the patients; you want to do the best. You do the therapy, you develop personal relationships with the patients, but ultimately you see 90% of your patients die. You realise you are just delaying the inevitable in most cases. After a few years, I decided I wanted to make a more fundamental difference and I knew where the real improvements were coming from. I had to focus on research and that is what I am doing now – laboratory research and translational research on devastating diseases like MDS and AML.

What is your overall objective?

Ultimately, to improve patient outcomes, that is still the goal. But there are many steps and I see a high value also in generating and contributing to the fundamental knowledge, biological knowledge, and understanding of diseases that enables others (colleagues and the field in general) to do better research, to think about things differently and to help other researchers to succeed. Research is a matrix-type endeavour. You do your own thing, but you are in this network and meetings like this (ISEH, Brisbane, August 2019) are a great example. You hear what everybody else is doing, you read [scientific] papers, the data, and this constantly changes how you think about a problem. It is a huge team effort. I contribute my little piece to this mosaic. Maybe other people make the big discoveries or have a great idea that ultimately leads to a breakthrough. Of course, we all want to be the one that makes the next big step, but we all are moving together as a field and everybody makes little additions here and there. Then hopefully, for one of us, this all will lead to a big leap at some point.

“This is a team sport. There is no doubt about it.”

What’s new in your research?

We have been very interested in the stem cell origin of diseases like MDS and AML for a long time. If you go back 15 years, the field had a rather simplistic view of cancer, and it was not fully recognised what the contribution of different subpopulations in a tumour are. Around 2005, people started to realise there are differences between the cells, and that in a complex process like cancer one of the biological requirements is that multiple events can accumulate and lead to tumour formation. It basically requires cell types to have a sufficient lifespan to actually accumulate multiple steps of transformation. In simplistic terms, if you take a skin cell that is shed off every day, essentially, if something bad happens to that cell, a day later that is irrelevant because that cell has fallen off and cannot acquire another event. But if bad things happen in stem cells, which have a very long lifespan and are around for decades in the human body, these cells have the biological ability to accumulate multiple aberrations. That is a concept that we, and others, started to pursue many years ago.

In the last few years, we have made significant advances in our understanding of the stem cells in MDS and AML. Technological advances allow us to isolate these stem cells better and to analyse them better through molecular biological methods. We’ve made a lot of progress pinpointing the problems at the stem cell level that cause the production of bulk tumour cells that are ultimately diagnosed in the clinic, and that cause all the symptoms. We are now much closer to a causative treatment approach, where we get to the root of the problem rather than dealing with the symptoms and with late-stage consequences of the disease-driving events.

Some of these discoveries have led to new therapeutic approaches that we hope will lead to a more lasting disease control. A good analogy is… if you have a weed and you can use a lawnmower to cut it back, that works for a few days, but it grows back. Unless you get to the root of the problem, you will never truly get rid of the weed. Using that metaphor, we are now much closer to the root of the problem, which I think is at the stem cell level. We are now better able to understand what is wrong and we’ve reached the point where we can begin to interfere with that in a targeted manner and to develop targeted therapies for some of the abnormal pathways that we and others have discovered in these abnormal stem cells. Some of those have reached early-phase clinical trial status, so we will see in the next five to 10 years how and whether some of these approaches will pan out.

How do targeted approaches work?

These targeted therapy approaches won’t necessarily fully replace chemotherapy and that is something that is very important to understand. Bulk tumour cells cause a lot of the clinical symptoms patients deal with and is why they initially show up in the clinic or doctor’s office and are diagnosed. You must get rid of those cells just to alleviate acute symptoms, then stem cell targeting hopefully will lead to lasting control of the disease. Chemotherapy is actually very good at eradicating or eliminating the bulk tumour, but the problem in MDS and AML is that it is a very transient success. Most patients will respond very well to chemotherapy, but only for a few weeks or months, then the disease grows back. Ultimately, a combination approach would mean initial chemotherapy supplemented with a targeted therapy, to keep the stem cell compartment in check. In an ideal world, we would love to just give targeted therapy and not do all the chemotherapy with all the bad side-effects. Chemotherapy is good in the short-term but has lots of dangerous and problematic long-term consequences because it is genotoxic. This means it induces additional mutations in other cells, including these long-lived stem cells, on top of the mutations that are already there because of the cancer. We would love to reduce chemotherapy as much as humanly possible, to the bare minimum required, even get rid of it entirely, but that really may be a long-term goal for AML and MDS in particular.

Ulrich Steidl at a computer with a colleague
Ulrich Steidl: “What you get out of experiments is almost always more complicated than you thought”.

What is your lab working on?

We are an academic lab with about 15 researchers – a 50/50 mix of post docs and graduate students and a few research technicians. We have been very active in target identification and we collaborate with other academic groups or companies that have drugs that are active against the targets we identify. One is a cell-surface target our lab discovered in MDS and AML stem cells, called IL1RAP, and which other groups have validated. We publish our results, so everybody has access, and there is significant interest. Several companies and academic groups are developing immunotherapy approaches now against IL1RAP. These range from antibodies, and T-cell engagers, to CAR-T cells, and we will see some in the clinic soon. We discovered another target in MDS and AML stem cells; an endogenous inhibitor of p53, which is one of the key tumour suppressor genes in human cancer. That molecule, called MDMX, is frequently overabundant in MDS and AML stem cells. After making this finding, we collaborated with a company that developed a new therapeutic, called a stapled peptide, which is now being tested in a clinical trial. This modified biologic is an MDMX inhibitor, so it acts against the target we discovered.

What happens in your lab day-to-day?

Molecularly, we are very interested in transcription, which is still an understudied area in disease-focused, translational cancer research. There are genes that encode the information that cells, and the body, need to produce proteins, and the genes are the same in every cell. Transcription factors are the molecules that regulate gene activity – decide which gene is switched on and off, and which genes are used to make RNA (and then ultimately translated into a protein). Transcription factors are very hard to target therapeutically but we know they are very important biologically as activators and suppressors of genes. And they are key biological components of the transformation process in cancer. Our lab focuses on abnormal transcription, to understand it better, and we have made considerable progress in the therapeutic targeting of transcription factors, which five to 10 years ago were considered ‘un-drug-able’. Now, more and more people believe many of them are actually ‘drug-able’. The targeting of aberrant transcription, as opposed to targeting more general epigenetic regulators or kinases, is something we have a huge focus on. We want to add something that not everybody else is already doing.

We spend a lot of time doing experiments to test an idea and a lot of thinking and planning is involved to come up with a waterproof plan to either prove or disprove a so-called hypothesis. We have an idea that this or that could be relevant for the function of leukaemia cells. Then we come up with an actual experiment to test that idea, based on what we must do to either prove our idea is right, or wrong. What model do we need? Do we need a cell line, and do we need cells from a patient, or do we need cells from a mouse model system, or a combination of all? Experiments are hands-on work that is very labour intensive and once you have done the experiment you get the data and interpret it. The reality is that what you get out of experiments is almost always more complicated than you thought. We sit down, scratch our heads and try to make sense of what came out of an experiment. Then the next experiment we do is to further clarify or refine it or make the next step.

There are other things beyond the research to do, as a lab head. You make sure the results are disseminated; publish papers, go through a peer review process and get funding. And when we have success stories, we go out there and say, “look, we have done things that are helpful for the patients and the scientific community”. Then we have a new idea and a new plan, so we also spend a lot of time writing and proposing these ideas and convincing other people they are worth being funded, so we can actually do them. That is particularly time-consuming, and I spent a lot of time on that rather than in the wet-lab.

What is the overall aim of your research and why focus on MDS and AML?

It is to improve our understanding of the development of MDS and AML and to ultimately use those insights to develop more effective targeted therapeutics. Blood cancer was attractive to me for a variety of reasons. From my clinical experience, MDS and AML are really devastating diseases with cure rates below 15% in the majority of patients. There is a real need and that has always motivated me from the get-go. The other reason is the accessibility of specimens and samples, so it is relatively easy to study because you need blood or you need bone marrow, but you don’t need complicated surgery to remove a tumour. And because of that, blood cancer and/or experimental haematology in general, has always been one step ahead of other tumour entities in science. Blood is a very well-defined organ in terms of where the stem cells are, where they come from and how do they differentiate [become different]. So, you have a very good baseline, which is not necessarily as good in other organs, to then compare to what is going wrong in leukaemia. I felt, therefore, the study of blood is a more exact, precise science, and has better possibilities to make fundamentally important advances then starting to study tumours of other organs. There are many examples of discoveries, initially made in blood and in leukaemias, that are then looked at in other organ systems and then they find similar things.

“Experimental haematology has always had a spear-heading kind of function in all cancer research.” 

Have you any advice for people undergoing or recovering from treatment?

It is very important not to believe every piece of information you have access to on the internet or from other sources. For a variety of reasons, some information is just plain wrong, and it is very difficult sometimes to see what’s a solid source and what’s not. And, some of information you find in the literature is outdated because it’s based on research done five or 10 years ago. It is important to connect with the experts; people who know what is going on right now and who can give the best advice of what possibilities there are to move forward, and what the newest clinical trials are, especially for MDS and leukaemia. You need to see specialists who really know what is going on. There is a lot of research progress so even something that wasn’t available last year may be in a new trial this year, and a new experimental drug may be worth trying. That is just very important, and you only know about this if you work with the actual specialists and the best doctors that are available. There are logistical challenges, because even if you have the trials, they are often available in the big centres, and in a country like Australia, and in parts of the U.S. as well, the distances are very big. It is sometimes challenging to get state-of-the-art care if you have a very complicated and rare disease like MDS and AML.

What is your holy grail – the one thing you would like to achieve in your career?

I would love to see some of the things I have described [above] come to fruition. I would be the happiest man in the world even if there was just one subset of patients or subset of leukaemia that we could cure, and where my lab contributed a piece of knowledge that helped make that possible. That would be extremely great to see. Of course, we want to cure cancer in general, but it is not realistic in the short term. That’s a big vision. The problem right now is, MDS and AML are fairly rare diseases. You can’t screen the entire population to look for abnormal stem cells, just to fish out four or five from 100,000 that may be at a particular risk. But we are getting to a point where, with markers like clonal haematopoiesis, if we understand a little bit more about what makes them progress, we could do targeted screenings in subpopulations that we think are at risk. We may get to that point, with our increased understanding, in the next five or 10 years. I also would really love to prevent MDS and AML altogether. It is possible in principle, to detect the stem cells from which the blood cancer is coming from early, and when that is happening, to intervene pre-emptively. There are other cancers where breakthroughs have come from prevention – e.g. cervical carcinoma and certain types of colon cancer, and a few others. We must get to a point of early detection and then ideally, prevention. There is good data to support that concept and approach in MDS and AML now, so I am really hopeful.

Haemo-globetrotter Bryan has blood tranfusions on his travels

Haemo-globetrotter Bryan has blood tranfusions on his travels

Bryan and Winona Mitchell visiting a winery in Croatia
Bryan and Winona Mitchell visiting a winery in Croatia

When veteran traveller Bryan Mitchell, 74, journeys from country to country, he gets treatment for his MDS along the way… that is until COVID-19 put a stop to his travels.  

His last overseas transfusions were in Marseille and Paris during a six-week trip to France last September which he described as “very good and very expensive”. 

“If you can afford a holiday overseas you can afford the medication” he said.

Since his diagnosis with MDS, he hasn’t let his fortnightly blood transfusions stop him from travelling the world with his wife of 38 years, Winona. It just requires some extra planning.

“I need to ensure that I have enough blood in my body to get me from A to B,” said the Shepparton (Victoria) resident.

Bryan sitting in a boat, with the Murray cod caught on a fishing trip at Lake Mulwala
Bryan with the Murray cod caught on a fishing trip at Lake Mulwala

The couple has three adult children and four grandchildren and has tackled Bryan’s illness for a third of the time they have been together.

“Until the age of 55, I was in excellent health. I was still playing cricket and participating in long-distance running and down-hill skiing.”

But his heart health was faltering. Bryan developed angina, had stents put in and then bypass surgery in 2005.

“My life changed from that time.”

In 2007, a routine blood test prompted the beginning of what Bryan felt was a “long-term downturn in health”.

He was initially diagnosed with MDS which he said, “was something I had never heard of”.

Bryan’s condition is now categorised as an MDS-type chronic myelomonocytic leukaemia (CMML); a rare blood cancer that has characteristics of both MDS and myeloproliferative neoplasms (MPN).

Until this diagnosis, he had been “active and enjoying life” and, impressively, Bryan didn’t retire from the Public Service until 2014, aged 68, when he was quick to take up contract work.

“I was flippant to begin with. I went to see a respected oncologist in Melbourne who fully explained the illness. At the time, it seemed to have no impact on my life.

“However, my coexistent ischaemic heart disease is impacted if my haemoglobin drops too low (80-85),” Bryan explained.

“Recently, I have been as low as 74 and once I was 55 which was pretty scary.”

Having been transfusion-dependent since 2011, he currently has two to three units of transfused blood every two weeks.

“There is no treatment available to me other than blood transfusions, and deferasirox [Jadenu®, an iron overload medication] to help regulate my iron levels,” said Bryan, and this ongoing regimen is a frustrating reality for him.

Winona and Bryan on the Champs Elysees during their trip to Paris in 2019
Winona and Bryan on the Champs Elysees during their trip to Paris in 2019

“MDS and ever-increasing iron levels have a significant impact, and anaemia is also a real problem,” he said.

“I have overcome heart disease and two strokes, one of which left me blind in my right eye.

“I am a true one-eyed Magpies’ supporter,” joked Bryan, but his struggles don’t stop there.

“As a result of a carcinoma, I have had plastic surgery to repair a crater in my scalp that wouldn’t heal.

“During the four operations I have had on my head, infection has caused many problems and MDS has had a big impact with my body’s ability to fight the infection,” he said.

“The last six months have been quite an adventure, but we’re getting there.”

But Bryan’s dreams along with encouragement from his family and friends have inspired him to continue his MDS journey.

“As well as my ambition to see the world and a desire to see my grandchildren grow up,” he added.

And these motivations have seen Bryan accomplish many feats.

“Three years ago, we decided to realise a dream and travel to India. We organised a two-week small group tour of three major areas, including the Taj Mahal,” said Bryan.

“I am so glad we did. Many travellers would not attempt a trip to India.

“We love to travel overseas but I need blood every two weeks. In 2018, we went on a three-week cruise through the Baltic counties. To achieve this, we needed to organise a blood transfusion somewhere,” Bryan explained.

“We found that at the major hospital in Stockholm [Sweden]. I was able to have two units of blood, enough to enable us to finish our holiday.

“There is a charge, but it’s worth it.”

Beside the Ganges in India which Bryan described as “one of life’s most amazing places” to visit
Beside the Ganges in India which Bryan described as “one of life’s most amazing places” to visit

Years ago, the pair had met an old veteran on a cruise from Turkey to Amsterdam. The man, in his 80s, had been escorted to a hospital when they stopped in Vienna, to receive a blood transfusion.

“We had thought that was pretty good, but then we forgot about it. Now, here we are, doing the same thing,” said Bryan.

The amount of travelling Bryan does is impressive, blood cancer or not.

In 2020, the couple had planned four trips, but Bryan’s doctor said ‘no’ to him going on a family holiday to Bali with Winona and their daughter in late-January.

“They went without me as I was susceptible to infection.”

Then their Mekong River cruise in March was cancelled as the COVID-19 pandemic intensified.

“We have one planned to Portugal and Spain in July. We won’t be going, that won’t happen. And later, in August, Canada and there’s a real prospect that won’t happen either.

“Winona is my rock,” said Bryan about the help his wife provides so he stays on top of his medical regimen.

Bryan explained how, through all her own struggles, Winona has stayed strong and continues to make chasing their dreams possible.

“With the assistance of Mr Google and my wife’s persistence, we were able to organise transfusions at major hospitals in Marseille and Paris last year. The hospitals were modern and clean and English was spoken. Payment was upfront, and there was a 24-hour aftercare service.

“Some of the procedures are different, but don’t be alarmed, the lunches are great,” joked Bryan.

He has few regrets, except one – not participating in a new clinical trial, but hefty expenses and extensive travel due to living in a regional area made the trial seem inaccessible.

“I would jump at the opportunity now,” he said.

A regular at the oncology unit in Shepparton, Bryan feels that being surrounded by a support system, including others living with MDS, has made all the difference.

“The staff there are fantastic. They make attending so much easier, and happy. I admire their sense of humour and professionalism,” said Bryan.

Despite desperate struggles with severe anaemia and angina, Bryan still considers himself lucky.

“At least I know that if I get into trouble, I can get blood from someone like you,” said Brian when he spoke to MDS News.

“I see people in much worse situations than me. It makes me feel very humbled.”

Bryan wants to see MDS better understood as an illness.

“I’ve got close friends, one of 25 years and one of 40 years, who don’t understand,” he said.

“At times, I look terrific to my friends and family, but feel terrible. That is the nature of the beast.”

“I’ve gone from being as fit as a Mallee bull to nowhere near that person.”

Travel gives Bryan “something to really look forward to” but he also understands that “eventually the travelling will have to stop”.

Although physical activity is limited by his condition, Bryan keeps himself busy with many hobbies and he continues to play lawn bowls.

One of Bryan’s award-winning photographs of a tree
One of Bryan’s award-winning photographs

“I am also into photography and gardening; the environment is very important to me,” said Bryan. He has taken lots of travel shots over the years, and last year he won seven photography awards at the Shepparton Agricultural Show.

To others living with blood cancer, Bryan says, “enjoy what you can and do not be put off. Look for alternatives to help you achieve your dreams”.

Through everything, he assures others, “you can do it”.

Some of his friends tell him he pushes the boundaries too much, but he knows better.

“It can be done… just be positive and sensible.”

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.

Lisa’s early pregnancy symptoms turned out to be AML

Lisa’s early pregnancy symptoms turned out to be AML

Lisa and Family
Lisa and her family

One of the hardest things Lisa Christie has done is to stop breastfeeding her eight-month son, Jackson, after being diagnosed with AML in late-2015 so she could start treatment immediately.

Three months later, on Jackson’s first birthday, she had a life-saving stem cell transplant, and now she’s back at work as a registered nurse and life is “pretty much back to normal”.

Four years ago, Lisa was on maternity leave, when she and husband, Anthony, were shocked to find out she was pregnant again.

“In retrospect, the symptoms I thought were from pregnancy – night sweats, bleeding gums, weight loss and fatigue – were all signs of leukaemia,” said Lisa, 33, of Melbourne.

“We were excited about the prospect of another baby and I went to the GP to get regular pregnancy bloods done.”

The lead-up to Lisa’s AML diagnosis

It was December, “a hectic time for everyone, and I was busy Christmas shopping”, said Lisa. And as fate would have it, Lisa’s mobile had stopped working just as her doctor’s reception was trying to get hold of her.

“In the end, my GP resorted to calling my husband, to drag me in to get my blood results.

“I saw a lovely doctor who I hadn’t met before. My neutrophils were 0.1, which I knew was pretty bad. He didn’t want to panic me but instructed me to go straight to hospital.”

To make matters worse, Lisa, who was about seven weeks pregnant, was miscarrying.

She spent the night of December 17 in an isolation room at the hospital, which she also knew “was bad”, and the next day was transferred to the haematology ward of another hospital, for “the first of many bone marrow biopsies”.

“I had 45% blasts in my bone marrow,” said Lisa, and hours later, a scan showed her pregnancy wasn’t viable “thank goodness”.

“Needless to say, that was a horrible 24 hours! Anthony and I were shocked and very emotional,” she said.

“I still remember sitting in the family room, talking to the nurse unit manager of the haematology ward. It was so strange…  because I work at the same hospital and was friends with nurses who were seeing me at my most vulnerable.”

On December 19, Lisa had a D&C* in the morning and a PICC line inserted that afternoon.

“My family came over from Shepparton that day. My parents and sisters were obviously devastated. They tried to hold it together around me, but I have never seen my dad cry that much.

“I think that was the hardest, seeing my two sisters and my parents,” said Lisa.

“Anthony and Jackson were there constantly. I was breastfeeding still up until the admission.”

Starting treatment

The next day she got the diagnosis of AML with trisomy 6 – a rare chromosomal abnormality, and two days later, she had her first round of chemotherapy (HIDAC3).

“Jackson’s first Christmas and my 30th birthday were a blur of sleeping, blood and platelet transfusions and diarrhoea!” said Lisa.

In early-January, she was told she needed a stem cell transplant (SCT).

“I wasn’t happy about this. At the time, I was really scared, but later I realised it was the best treatment for me and I needed to trust the experts.

“I looked up the protocol on the hospital portal, which I shouldn’t have… the doctors told me off for doing that,” said Lisa with a laugh.

“I soon realised all the data was based on older people, not someone in their 30s.

“My sisters were tested to see if they could donate their stem cells to me, but unfortunately they weren’t a match. So began the search for an unrelated matched donor, and I stayed in isolation for a month!”

At the end of January, Lisa was admitted for the first cycle of consolidation chemo – little-ICE, and after a week she was discharged.

“The doctors thought my bone marrow was starting to recover but unfortunately this wasn’t the case.”

A routine bone marrow biopsy showed Lisa’s neutrophils, haemoglobin and platelets were dangerously low.

“I was readmitted, which I was devastated about. I just wanted to spend more time with Jackson.

“They [Lisa’s medical team] realised then that they needed to find a donor quickly. My marrow was struggling. I was given two units of blood as my Hb was 77, and the following day it had decreased to 75.”

Jackson and Lisa playing the piano together in January 2016.
Jackson and Lisa playing the piano together in January 2016.

Lisa’s stem cell transplant

On March 8, Lisa has a Hickman line inserted in preparation for her SCT, she had G-CSF** to keep all her counts up and went home.

“More importantly, they found an unrelated male donor in Melbourne!” said Lisa, who was admitted on March 13 to begin her pre-SCT chemo and to top up her platelets and haemoglobin.

“The 21st of March was a huge day for us. Jackson’s 1st birthday and my stem cell transplant day!”

Lisa is “going really well” now.

“I am three years post-transplant and feeling great,” she said.

“I was lucky enough to not suffer any graft versus host disease and I see my haematologist every six months.”

 

Lisa, Anthony and Jackson holidaying on the Gold Coast, July 2018.
Lisa, Anthony and Jackson holidaying on the Gold Coast, July 2018.

 

Returning to work

“I have returned to work three days a week, while still looking after Jackson.

“Mentally I was terrified of returning to work, and I think having all my treatment at the same hospital where I work didn’t help. But I’ve been back for more than two years and have well and truly settled in.

“I’m not as physically fit as I was before my diagnosis and I get tired easily, but I try to push through.

“I definitely don’t go out and drink as much as I used to, but that may have something to do with being a mum!

“I find I’m more paranoid then I used to be. If I lose weight, I automatically think the worst. If I get a temperature, I automatically think the worst, but I am getting better at rationalising things now.

“Emotionally, physically, mentally and spiritually, becoming infertile after treatment has affected me the most,” said Lisa.

“And practically, it was so hard to be apart from Jackson,” said Lisa about her diagnosis and suddenly having to give up breastfeeding.

“I think it was tougher on my husband, who had to look after Jackson full time… with the help of his parents and my parents.

“I didn’t seek support, my family and friends just offered it,” said Lisa, who didn’t access any of the Leukaemia Foundation’s support services.

“Fortunately, we have not needed to.

“My friends tried to visit whenever I would let them. My parents and sisters travelled over an hour to visit every week. On my breaks from hospital, Jackson and I would stay with my parents in the country, and my in-laws were amazing, helping wherever they could.

“When I was improving and needing to attend hospital appointments, my friends babysat Jackson for me while Anthony was working.”

“Tough love” and other practical advice

Talking about other ways people have helped, Lisa said she received some “tough love” from a nurse when she was having a down day.

“She said, ‘the patients that get up and move always do better than the ones that stay in bed all day’, and this stuck with me the whole time I was sick. There wasn’t one day I didn’t have a shower or walk around the ward.

“I remember when I was scared to go back to work, my work friends said, ‘it will be hard the first week, and then you will be old news’ because at the time, I was worried about how people would react to seeing me back at work. I now know I had nothing to worry about.

“Do NOT say, ‘when are you having another baby?’ to anyone, let alone someone who has had chemotherapy, and ‘you’ve lost weight’ is not a good thing to say to someone who has had cancer!

What has helped Lisa 

Lisa’s advice is, “stay positive” and “read other people’s inspirational blogs”.

“There are so many positive cancer stories on Instagram

and the internet,” she said.

“I found reading other patients’ blogs really helpful. I draw inspiration from other people’s life stories.

“Everyone has their struggles. I think people like Turia Pitt [severe burns survivor] and Brittany Crosby [diagnosed with Stage III ovarian cancer] are amazing.

“To go through obstacles in life and come out stronger women is something to aim for.

“During treatment my husband and family made me get up and walk every day. They held my hand when I was upset and let me rest when I needed to. I honestly couldn’t have done it without them.

Lisa with Jackson on the beach at Torquay, January 2019.
Lisa with Jackson on the beach at Torquay, January 2019.

Lisa’s aspirations

“I hope to be a great mum to Jackson and see him grow into a gorgeous, caring and strong man.

“I hope to increase my hours in my nursing job and continue to help each and every one of my patients.”

And right now, Lisa is looking forward to “ just living life and spending time with my gorgeous family”.

“We can’t have any more children naturally, due to premature ovarian failure,” said Lisa.

“My sister has donated eggs to us. Unfortunately, the first IVF transfer this year [2019] ended in miscarriage, but we are hoping the next embryo transfer will be our baby.

“We are very grateful for my health, and that we had Jackson before I was sick.”

In early-2019, Lisa Christie recorded her experience of having a stem cell (SCT) transplant for a friend who had a close family member who was going to have a SCT. She has shared those details here.

* Dilatation and curettage. 

** Granulocyte-colony stimulating factor – a glycoprotein that stimulates the bone marrow to produce granulocytes and stem cells and release them into the bloodstream.

 

Blood cancer doesn’t stop: Shelley’s story

Blood cancer doesn’t stop: Shelley’s story

Shelley Garvey with her family
Shelley with her children, Jett and Jayda-Star, and husband, Jason.

For Shelley, life facing COVID-19 is in some ways “business as usual”, but in other ways, means changing the way she and her family go about their daily life.

At one hundred and ten days post stem cell transplant, Shelley is navigating a ‘new normal’ type of life as she adjusts to living back in the Bridgestone Australia Leukaemia Foundation Village in Adelaide with her husband and carer, Jason. Her two children, Jett and Jayda-Star, have been mainly living back in the Riverland over 250km away, under the care of Shelley’s sister.

We caught up with Shelley to learn more about how she is feeling.

Before COVID-19

Shelley Garvey in hospital
Shelley receiving treatment

We have been down here in Adelaide for nine and half months now, so a lot longer than we originally thought.

When I found out I had leukaemia, it just completely flipped our world. I was asked by my local GP in Loxton to go to the Royal Adelaide Hospital for further tests. When the registrar came to see me, he told us it was leukaemia and that I wouldn’t be going anywhere for a month.  We were in complete shock.

Dealing with anxiety

I’m at 110 days post-transplant and I’m still immunosuppressed. I’ve also found out that my cytomegalovirus (CMV) has returned. This is a common infection after a stem cell transplant presenting like a mild flu, but can be serious for someone with no immune system.

COVID-19 coming along has been intense.  It brings up all my anxiety and nervousness.  I’m in the four percent of vulnerable people because I’m immunosuppressed and have no vaccinations. Adding coronavirus on top of this makes me even more susceptible. This is what I’ve explained to family and friends, so they can be understanding.

Finding a trusted source of COVID-19 information

I’m making sure I get information from a reputable source, as there is that much information going around.  Speak to your doctor if needs be.  I look at the Leukaemia Foundation website to find my information and updates, rather than watching TV and reading newspapers, because I think the Leukaemia Foundation is a trusted source. I just thought, go to someone who you can trust, who knows what they are talking about.

Shelley giving the camera the thumbs up, wearing a surgical mask
Shelley is used to having to ‘mask up’ to protect herself

Changing the way appointments are done

My doctor’s appointments have become phone consults.  I do know some people who have been having nurses come out to them to prevent them from having to go anywhere.

I’ve found a quiet medical centre to have my bloods taken.  I sit in the car and they call me when they are ready. But it’s still nerve-wracking putting yourself out there to a place of possible exposure.

Self-isolation

I guess for us (people with blood cancer), we are used to being in self-isolation. This is what we do, this is how we live.  Everything they are trying to educate the public about is everything I have been doing for the last nine and half months.  Washing hands, masking up, reducing who I see, not seeing people who are unwell.

So it’s business as usual for us.  Just do the right thing so we can get through this.

A pause on integrating back

A few months ago, I was getting really down. I felt like I was by myself and the world was revolving around me with everyone getting on with their lives.  Meanwhile, my world had stopped.

After the stem cell transplant, I was recovering and starting to do little things. I’d started to go to the supermarket with Jason for a little shop, because for me, that was special!  It was normal and I felt like I was integrating back into life.  And then COVID-19 has come along and there goes my integrating.  I feel like suddenly, I’ve gone back to being by myself, with the world revolving around me.

Slowing down and finding calm

In a way however, it’s nice too.  I’m using time to reconnect with family and friends over facetime as the world slows down.

I’m writing in my gratitude journal, because finding a few things that you are grateful for every day can really change your mindset.  I’ve also got my vision journal, where I’m putting together all my plans for my garden at home.

If I’m having a bad day, I use meditation. Or I watch a good comedy, something light and carefree!

A village of support

Staying at the Bridgestone Australia Leukaemia Foundation Village during this time has been amazing.  We feel so safe and secure here. It’s a real community and from my experience here, it’s just full of love and kindness. The positivity, considering everything that is going on, is great. We need somewhere safe and calm to heal.

How to show support for Australians with blood cancer during COVID-19

I know that everyone is dealing with it in their own way and for some, humour is the best medicine. But just please be mindful of who you are sending funny COVID-19 memes and jokes to, because for some of us, it’s not a joke.

For some of us, we’re trying to avoid the constant talk of coronavirus. Talk to us about life…there are other things we can talk about.

And do the right thing. Wash your hands, cough into your elbow, stay home, self-isolate.

Doing things like that is how you can support us.

We’re vulnerable right now, both in body and in mind, so please take that into account.

And check in, have a chat, but let’s not focus on the negatives all the time.

#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 your story with our blood cancer community.

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

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.

 

Thank you for staying home this Easter from Australia’s blood cancer community

Thank you for staying home this Easter from Australia’s blood cancer community

Friday, 10 April 2020

Leading national blood cancer organisation the Leukaemia Foundation is thanking Australians for following the recommended guidelines to stay home this Easter Weekend as it struggles to continue supporting some of the nation’s most vulnerable people in the changing COVID-19 environment.

CEO Bill Petch said people living with blood cancer are faced with the constant challenge of a compromised immune system, and coming into contact with COVID-19 could be tragic.

“Social isolation is not a new concept to Australians living with blood cancer – it is something many of them are forced to do every day to ensure their health and safety. However, COVID-19 has added a new layer of concern for these Australians who are highly vulnerable to infection,” he said.

“We want to thank every Australian who is staying home and practicing social distancing and, in doing so, playing their part to keep safe the many children, adults and older Australians living with a blood cancer and helping to ease their anxieties during this unnerving time.

“Please keep up the great work this weekend, because we know that these measures are not only working towards flattening the curve, but also saving lives in our blood cancer community.”

Mr Petch said the Leukaemia Foundation was also now facing mounting pressure as it works to pave a way forward in light of the pandemic’s impact on the organisation.

The Leukaemia Foundation is preparing for a shortfall in fundraising this year, with a number of community fundraising events being compromised or cancelled due to COVID-19, and the organisation is now working hard to continue offering vital support in a COVID-19 environment and beyond.

“Blood cancer doesn’t stop – even during a pandemic – and our concern is not only for the safety of our community today, but how we will continue to address the needs of more Australians being diagnosed with blood cancer in the future,” Mr Petch said.

“In this changing environment, we are now facing a need to look for more sustainable and relevant options to deliver our vital services for all Australians living with blood cancer, regardless of where they live.

“With 110,000 Australians already living with blood cancer and another 41 Australians diagnosed with the disease every day, the numbers are not in our favour when it comes to stretching our services to support all those in need.

“This week alone, we have had a spike in enquiries from Australians living with blood cancer wanting support and information on accessing their treatment, managing their infection risk and overall emotional support in this distressing time.

“We recognise that every Australian has been affected by the impacts of COVID-19 and we appreciate how difficult the last few weeks and months have been.

“The reality is our organisation is relying now more than ever on the generosity of Australians to help give people living with blood cancer someone to turn to, a place to call home during treatment and access to the best possible care, and we deeply appreciate any support through this time to continue this important work.”

To help support Australians living with blood cancer and ensure they continue to be able to access the support and information they need during the COVID-19 pandemic, the Leukaemia Foundation has launched an Emergency Appeal. For more information visit www.leukaemia.org.au to donate or learn more.

“We know that the number of Australians diagnosed with blood cancer is on the rise and we know that we need to prepare for the demand on our services to reach an all-time high sooner rather than later. But with the generous support of our national community, together we can meet this demand, and together we can see zero lives lost to blood cancer by 2035,” Mr Petch said.

Tips for staying well in mind and body during coronavirus

Tips for staying well in mind and body during coronavirus

Self-isolation, social distancing, home quarantine – we’re all adjusting to new words and a new normal as this health pandemic sweeps the globe. However, for many people with a blood cancer, these practices are often second nature as they manage everyday life with compromised immune systems.

We all react differently to stressful situations. As a person living with or beyond blood cancer, you might be experiencing feelings of isolation, uncertainty and anxiety. As a caregiver, you might be feeling overwhelmed with navigating your loved one’s care while looking after your own needs. And as a family member, you might be feeling unsure of how you can help. This is all understandable, and you’re not alone.

The Leukemia Foundation is here to help. We encourage people living with or beyond blood cancer, caregivers and families to get in touch with us on 1800 620 420 (8.30am to 5pm Monday to Friday) or info@www.leukaemia.org.au.

14 ways to looking after your health and wellbeing

These are a few things you can do when experiencing isolation, uncertainty and anxiety as well helping you to feel your best.

1. Contact your cancer team if you’re concerned

Treating teams are already putting new processes in place to keep you and the staff safe. Knowing what they’re doing may be reassuring.

2. Take breaks from the media

Watching, reading, or listening to the news and social media about the pandemic constantly can be upsetting. Perhaps choose just once-a-day to check in on the news and remember to stick to trusted sources to avoid misinformation.

3. You don’t have to put on a brave face

This situation can be stressful and acknowledging that is okay. Most people find uncertainty difficult and it can be useful to think about ways you’ve handled stress in the past, such as through meditation or talking to someone.

4. Do some calming exercises

Meditation, yoga, relaxation exercises, whatever works for you! Headspace has free meditation resources at headspace.com/meditation/guided-meditation.

You could try the APPLE technique:

Acknowledge. Notice and acknowledge the uncertainty as it comes to mind.

Pause. Don’t react as you normally do, don’t react at all. Pause and breathe.

Pull back. Tell yourself this is just the worry talking, it is only a thought or feeling. Thoughts are not statements or facts.

Let go. Let go of the thought or feeling. Imagine them floating away in a bubble or cloud.

Explore. Explore the present moment, because right now, in this moment, all is well. Notice your breathing and the ground beneath you. What can you see, hear, smell and touch – right now. Then shift your attention to what you need to do, or were doing, or do something else mindfully with your full attention.

5. Practice good hygiene

There is no evidence to show that people with blood cancer are at a greater risk of catching the virus, but because of your diagnosis there may be a greater risk of getting sicker if you do get it. Be extra vigilant with recommended precautions such as hand washing, not touching your face, staying at home and cleaning your home routinely.

6. Eat well

Good nutrition can support a healthy immune system. Follow a healthy menu that incorporates a variety of vegetables and fruits, whole grains, lean protein, and healthy fats. Eat small, frequent meals throughout the day to stay energised and ensure your body is getting enough calories, proteins, and nutrients.

7. Get enough sleep

Make sure you’re getting good, quality sleep if you can. Adults should aim to get seven hours or more every night. If you have trouble sleeping, try a few simple tips like going to bed at the same time each night, avoiding large meals before bed and if you need rest, keep naps to 30 minutes or less. If you’re concerned speak to your healthcare team.

8. Exercise regularly

Regular exercise can help support your immune system and promote good heart health. Aim for 150 minutes of moderate activity or 75 minutes of vigorous activity a week. Depending on your age, where you are in your treatment, and your present state of fitness, you might need to modify exercise routines, but spending some time moving and being active is great for physical and mental health.

9. Stay in touch

Use video calling tools such as FaceTime, Zoom, Facebook Messenger or Skype to communicate. Call friends and family as often as possible and let them know how you’re feeling so they can offer the support you need.

10. Enjoy calming activities

Cozy up with a good book, start an arts-and-crafts project or listen to music. Try streaming services, board games or online games for more entertainment.

11. Express yourself

Putting pen to paper, blogging, capturing videos or scrapbooking and journaling can help with how you’re feeling.

12. Get organised

If you’re working from home, create a dedicated space for work and break up tasks into bite-sized pieces.

13. Ask for help and accept help when it is offered

Ask someone to pick up groceries or medications for you. If you’re a caregiver, find support here.

14. Your GP is there to help

Your primary care team plays a vital role in managing many aspects of your overall health and wellbeing. If you feel you need any advice or guidance relating to your general health and wellbeing (including your mental health) please speak with your GP as there may be specific recommendations or referrals they can make.

 

Last updated on April 8th, 2020

Developed by the Leukaemia Foundation in consultation with people living with a blood cancer, Leukaemia Foundation support staff, haematology nursing staff and/or Australian clinical haematologists. This content is provided for information purposes only and we urge you to always seek advice from a registered health care professional for diagnosis, treatment and answers to your medical questions, including the suitability of a particular therapy, service, product or treatment in your circumstances. The Leukaemia Foundation shall not bear any liability for any person relying on the materials contained on this website.