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

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

Tuesday 28 January, 2018

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Blood Cancer Taskforce member receives Order of Australia

Blood Cancer Taskforce member receives Order of Australia

Saturday 25 January 2020

The Leukaemia Foundation is today congratulating Blood Cancer Taskforce member Dr Joe Collins who has been appointed as a Member to the Order of Australia in the 2020 Australia Day Honours.

Dr Collins, a survivor of blood cancer himself, has been recognised for his significant service to the community through charitable initiatives, exceptional leadership and advocacy in childhood cancer.

Dr Collins is currently the Chairman of the Lions Kids Cancer Genome Project at the Garvan Institute of Medical Research and Chairman of the Steven Walter Children’s Cancer Foundation. He has held many leadership positions in some of Australia’s most influential childhood cancer associations, including being the Founding Chairman of the Australian Lions Childhood Cancer Research Foundation.

In 2019, Dr Collins joined Australia’s Blood Cancer Taskforce, which includes 30 of Australia’s leading blood cancer experts and stakeholders, to deliver the country’s first National Strategic Action Plan for Blood Cancer, working towards a goal of zero lives lost to blood cancer by 2035.

Leukaemia Foundation CEO Bill Petch said the Australia Day Honour for Dr Joe Collins was recognition for many years of tireless dedication towards a better future for those battling cancer.

“Dr Collins is a true hero of childhood cancer in Australia and has dedicated his life to helping Australians fight this disease. We are privileged to have him as part of the Blood Cancer Taskforce to help us deliver this plan which provides a blueprint to help tackle key issues facing the blood cancer community,” Mr Petch said.

The Taskforce was established in September 2019 with the support of Federal Health Minister Greg Hunt and followed the release of the first-of-its-kind State of the Nation: Blood Cancer in Australia report which identified the true size, scale and impact of blood cancer today and into the future.

Find out more about the Report and the Leukaemia Foundation’s response My Life Counts, a summary of key findings, statistics and recommendations for reducing the impact of blood cancer in Australia.

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

Leukaemia Foundation amongst Australia’s most reputable charities

Leukaemia Foundation amongst Australia’s most reputable charities

The Leukaemia Foundation is proud to again be voted among Australia’s most trusted charities in the annual Reputation Institute’s Charity Reputation Index.

Up one place from 2018, the Leukaemia Foundation is now listed at Number 18 of the 40 charities listed in the Australian Charity Reputation Index (RepTrak®) which surveys Australian’s to measure the overall reputation of the country’s largest charities.

The annual index uses a scoring system that includes measures of trust, admiration, respect and overall esteem, and also considers a further range of dimensions such as services, innovation, workplace, citizenship, governance, leadership and cost management. It also looks at opinion change, communication, supportive behaviours and news awareness.

According to the Australian Charity Reputation Index, 1 in 5 people said their opinion of the Leukaemia Foundation had improved over the past 12 months, citing research, effective use of funds and the possibility of finding a cure as reasons for the sentiment.

Leukaemia Foundation CEO Bill Petch said the Leukaemia Foundation was proud to be listed among such a prestigious group of charities.

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

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

“We place the needs of people living with blood cancer at the centre of everything we do, and we are honoured that Australians are recognising our work in this way.”

Mr Petch said the past three years have been significant for the Leukaemia Foundation, seeing the organisation integrate from a state-based structure to one national federated body. While continuing to offer all Australians living with blood cancer every possible pathway to support, the integration has also seen the Leukaemia Foundation prepare for a future where the number of Australians living with blood cancer faces an unprecedented rise.

“Last year the Leukaemia Foundation released a first-of-its-kind Blood Cancer in Australia Report, and in conjunction with the Federal Government developed the first National Blood Cancer Taskforce,” he said.

The Blood Cancer in Australia Report shows that the number of Australians living with blood cancer was much higher than was previously known. It revealed there are now 110,000 Australians living with a form of blood cancer, and projected that number would rise to 275,000 by 2035.

“That report not only revealed the true size, scale and impact of blood cancer in Australia today, but outlined an agenda for change which will drive down both the personal and economic toll blood cancer is set to have on our country.”

“It showed it was time for a national collaborative response and we are honoured to lead the national blood cancer taskforce including the brightest haematologists, researchers, patients and members of the blood cancer ecosystem to develop a National Strategic Action Plan to help tackle the key issues facing the blood cancer community today and into the future.”

– ENDS –

About the Charity RepTrak®

The Charity RepTrak® is produced each year by the Reputation Institute, which also produces the annual Company RepTrak®, Country RepTrak® and City RepTrak®. Charity RepTrak® collates insight directly from consumers and does not rely on any information provided by the organisations being studied. The list of 40 charities studied in the Charity RepTrak® is compiled by the Reputation Institute using data published by The Australian Charities and Not-for-profits Commission (ACNC) the independent national regulator of charities. Several criteria are used to select charities such as total revenue, familiarity and geographic operations. In addition to collating overall reputation, the Charity RepTrak® also measures how Australians feel about each of the 40 charities according to seven parameters; Services, Innovation, Workplace, Citizenship, Governance, Leadership and Cost Management. The Charity Reputation Index surveys Australian Adults aged 18 and older using an online panel, with results weighted to ensure they represent appropriate gender and age groups nationally.

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

A bone marrow transplant saved Judi’s life after a shock diagnosis

A bone marrow transplant saved Judi’s life after a shock diagnosis

Since her life-saving bone marrow transplant, Judi Haidley has travelled extensively across Australia and overseas, including to Petra in Jordan in 2006.
Since her life-saving bone marrow transplant, Judi Haidley has travelled extensively across Australia and overseas, including to Petra in Jordan in 2006.

Back in 1993, the only person who could save Judi Haidley’s life was her second cousin, Sandra Veitch, who gave Judi, now 48, a second chance at life.

“My story began at 20 years of age. I was enjoying the simple pleasures in life, employed at the Warwick Daily News, playing sport, good friends and a great family,” said Judi.

Then, Judi found herself experiencing extreme and unexplained fatigue.

“I would come home for lunch and lie on the lounge, exhausted,” explained Judi.

“Mum said I looked very pale, suggesting I could be anaemic and should have a blood test.”

Judi put her symptoms down to playing too much sport and not getting enough sleep but eventually she had to go to the doctor with “terrible stomach cramps”.

Her doctor, thinking it may be endometriosis, gave Judi a blood test form and advised she have the tests after Christmas. It was December 23, 1991 but Judi decided to have the tests right away and she certainly wasn’t expecting bad news.

“How wrong I was,” said Judi, who got a message at work the next day that her mother was on her way to pick her up, to take her to the doctor.

“I still didn’t think anything could be wrong with me. I thought something had happened to my dad or brother,” she said.

Judi will never forget the moment the doctor called them both into the surgery, sat them down, and said, “there’s no easy way to tell you, Judi… you have a serious illness, leukaemia”.

“There was silence. My thoughts were of total disbelief,” said Judi.

“I knew it was serious, but what did this mean? What was going to happen, why did I have it, how did I get it? All these questions swamped me.

“We gathered as a family and went straight to Brisbane for treatment,” said Judi, who spent Christmas in hospital. Her diagnosis was chronic myeloid leukaemia (CML).

The following months were a whirlwind of “weekly blood tests, fortnightly visits to Brisbane, changes in medication to slow progress of the CML and make it easier to return to a normal way of life”.

“My white blood cells had failed to mature properly. Their normal range is 4000-11,000 but mine had multiplied to 250,000 and had overpowered the normal cells in the bloodstream.”

Judi was told by her doctor in Brisbane that a bone marrow transplant would be the best treatment for her, and her family would be checked as possible bone marrow donors.

“From day one, Mum asked questions, researched and sent money to the Red Cross to search overseas to find me a donor.”

In September 1992, Judi was to celebrate her 21st birthday but the party her brother, Cameron, and his wife, Lyndal were organising had to be postponed three times. She was admitted to hospital as there was concern her CML had progressed to the acute stage, but thankfully, she had glandular fever.

It was in mid-1993 that the Royal Brisbane Hospital transplant doctor, Dr Simon Durrant decided on the most suitable donor for Judi, and it turned out to be her second cousin, Sandra, who had already been listed on the Australian Bone Marrow Registry.

Judi Haidley with her bone marrow donor and second cousin, Sandra Veitch (behind), after finally coming home from the transplant back in 1993.
Judi Haidley with her bone marrow donor and second cousin, Sandra Veitch (behind), after finally coming home from the transplant back in 1993.

“Sandra was not fully compatible but was the closest match and the only person in the whole world who could save my life,” said Judi.

Sandra took time off from work to have her bone marrow harvested from her hip and breast bones, and she travelled from Warwick to Brisbane to donate platelets “which I believe was a huge boost in my recovery” said Judi.

“She never even hesitated and every time I see her, I say ‘thank-you’!”

The date was set for the transplant – September 30 – and Judi went into hospital on September 21 – the day after her birthday, which she shares with her mum.

Judi’s parents, Don and Heather drove her to hospital to have a Hickman line inserted, and as her mum was staying on in Brisbane there was concern about where she would stay.

“When the Leukaemia Foundation rang and said a one-bedroom unit was available at Herston, close to the hospital, it was wonderful news,” said Judi.

“It meant Mum had people around her who were in the same position and understood what she was going through, and I knew she was safe. That was a great comfort for me.”

During the bone marrow transplant, Judi spent five weeks in an isolation room.

“The only visitors allowed in the room were my family,” said Judi.

“My nephew, Heath, who was two, had to talk to me through the glass door in case of infection.

“I had chemotherapy and full-body radiation and during the following weeks, I had everything from a burst blood vessel in my eye to all the side-effects including vomiting, diarrhoea, fluid on the lungs, jaundice, mouth ulcers, hair loss and a chest infection.

Judi also developed graft-versus-host disease – an unpleasant rash all over her body which “was terribly itchy” and reduced her to tears at times.

“I had no sense of smell or taste and didn’t feel like eating until Mum made me some spaghetti. From then on Mum made my dinner each night.”

Judi spoke highly of the dedicated work, care and knowledge that the doctors, nurses and staff at the hospital provided to patients who were “going through one of the most frightening times of their lives”.

Judi Haidley and her transplant physician, Dr Simon Durrant, at a reunion held at the Royal Brisbane Hospital in 2015.
Judi Haidley and her transplant physician, Dr Simon Durrant, at a reunion held at the Royal Brisbane Hospital in 2015.

Eventually, Judi was released from her isolation room and admitted to the outer wards. And later, she was allowed to stay with her mother at Herston, and she made daily visits to the hospital.

Judi was anxious the day they left Herston which had been “home” for five months and her security. Home in Warwick was two hours away in case of any emergency.

The following year Judi also stayed at the Leukaemia Foundation’s ESA Village and over the years she has had hospital stays, including another Christmas, in 1994.

“There are no wise words to tell a person how to cope with cancer. A positive attitude, a will to live, a supportive family, trust in the doctors and nursing staff, and the support from the Leukaemia Foundation,” she said.

“The Foundation offers so much support to patients and their families during times of great illness and great uncertainty.”

Judi’s overall outlook is one of optimism and gratitude.

“Family is very important to me and I have a wonderful group of friends,” said Judi, who still lives at Warwick where she works full-time, plays tennis and enjoys photography.

“I have a love of owning British cars including an MGB, Mini K, Mini LS and a Mini Moke.

“And I have travelled all over Australia and have visited many countries overseas,” said Judi whose extensive travels have included the UK, Ireland and Europe, Turkey, Jordan, Borneo and Canada.

“Sadly, I was unable to have children of my own, but I have three nephews who I gave a lot of my time during their childhood years.

“Now they are all grown up with families of their own. They help me with the cars when they have time and still call me Aunty Judi,” she said.

“I still have yearly check-ups. This gives me a peace of mind that all is okay. I still get concerned with my health if something isn’t quite right and I know my limitations.

“Today, I take one day at a time and look forward to the days ahead,” said Judi.

Preventing different forms of resistance to AML would “make a massive difference”

Preventing different forms of resistance to AML would “make a massive difference”

Professor Mark Dawson thinks a patient’s interest in research is not in understanding the detail of how experiments are done or what methods are being used, but “the big picture”.

Mark Dawson in the lab with a colleague
Professor Mark Dawson, Group Leader and consultant haematologist at
Peter MacCallum Cancer Centre (Melbourne)

They want to know “what is the big question that you are trying to answer?” and “why will that be important to me or my friends or family who suffer from cancer?” said Prof. Dawson, a Leukaemia Foundation Research Fellowship recipient.

Researchers are engaging consumers – patients or other people who understand the patient journey – early in the research process, “to understand what we are going to do and how this will be of benefit to those with these diseases”.

“These are people with a clear understanding of what this journey is, the highs and lows. Being told you are in remission, or that you have relapsed and what happens next.

“Trying to understand why it came back and was there something they could have done to prevent it coming back,” said Prof. Dawson, Group Leader and consultant haematologist at Peter MacCallum Cancer Centre (Melbourne).

“All these questions are critical.

“We currently give the same two treatments [for AML] as we have done for the last 40 years,” said Prof. Dawson.

“It cures about 25% of patients overall – less in older adults, more in younger adults.

“You could say, ‘well, that treatment is not very good’. But the other way to look at it is… we get up to 80% of patients into a complete remission.

“The problem is, that is not sustained. It [AML] comes back. And, even though you can’t see it or detect it, doesn’t mean it’s gone.

Remission is the first step to cure

“That is a concept that, for a lay person to understand, is very difficult. The way I describe how AML is treated, to patients in my clinic, is that ‘remission is the first step to cure’.

“But remission, sadly, does not equal cure. And cure is only measured with time, and we know most patients with AML relapse within the first two years.

“Of the 80% of people who go into remission, only less than half, probably only 40% of them actually ultimately get cured.”

Prof. Dawson’s research focus is on the other 60%.

“If we can change that in some way, then what a massive difference that makes,” he said.

“From a consumer’s perspective, this is the important question and answering this question could potentially change the way we deal with this disease.

Searching for new strategies to prevent resistance

“Our aim is to identify future therapeutic strategies to prevent these different forms of resistance.”

A prevailing concept Prof. Dawson thinks needs to be challenged, is that when cancers come back, they come back because they develop new mutations.

“I think cancers are lucky, but I’m not sure they’re that lucky that in a short period of time – a year or two – they develop the exact right mutation to become resistant to your treatment.

“Some of these mutations exist in a patient for decades before they actually manifest as leukaemia. The fact that that leukaemia cell would suddenly, miraculously develop the right mutation to come back, I think is pretty unclear if that’s really what’s driving it.”

Prof. Dawson’s lab is to trying to understand a more dynamic process; that cells can change their gene expression in minutes to hours.

“If you were to take a cell and expose it to any kind of pressure, such as low oxygen, low nutrients, a drug… it’ll change its gene expression program almost immediately, to try and adapt to that,” Prof. Dawson explained.

Changes in gene expression and relapse

“And what we have underappreciated for a long time is how important these changes in gene expression are in bringing about the relapse that we get from AML.

“This research, which will take several years, really wants to look at single cell resolution, to identify the major principles of this adaptive process and uncover how much of this is driven by genetic adaption (getting new mutations) and how much of this is non-genetic (driven by changes in gene expression).

“We will collect leukaemia cells at the time a person presents [at diagnosis] and we will characterise them in a really granular way, to understand – what are the mutations that this cell has? And what is the gene expression program these cells have at the time they present.

“Then, we’ll do the same thing at a time when they are in complete remission, even if we find one or two or 10 cells that still remain, to understand the properties of those cells and how they differed from before this cancer saw chemotherapy.

“Sadly, we know that ultimately, in quite a lot of these patients, the cancer comes back.

“When their cancer comes back, again we will ask – what is it in their cancer that came back. How does this differ to what the cancer started as? And is there something in this journey that we could learn, to stop it from coming back.

“Could we have done something at the time when you were in remission, with only residual disease, and can we do something [in the future] to stop the adaptive process?”

This process has already been modelled and Prof. Dawson said the results suggest relapse is not driven by new mutations and is driven by an adaptive process where the cancer adapts to this pressure by changing the way it expresses genes to enable fitness during therapy.

“That adaptive process requires epigenetic* machinery and, potentially, using epigenetic drugs at the time of that adaption, to change the outcome of the ultimate disease” said Prof. Dawson.

“What we did was model how resistance to an epigenetic drug develops and the results were published in Nature Communications in July last year [2019].

“What we don’t know is whether the principles we found in the resistance process to the epigenetic drug applies to other types of therapies or is this peculiar to an epigenetic drug. That’s why we need to now look at this in humans,” he said.

*  Professor Dawson describes epigenetics as “the study of the processes that go into place to change the way our DNA is accessed. Our DNA is accessed for three major purposes – to replicate itself, to repair itself, and to express the genes that are contained in it. This is a highly dynamic process”.

The difference a Senior Research Fellowship made

The Leukaemia Foundation awarded Professor Mark Dawson with a five-year Senior Research Fellowship, from 2013-2017, with annual funding of $200,000.

His research project title was Understanding how abnormal regulation of DNA contributes to leukaemia and his research was to understand the role epigenetic regulators play in the initiation of cancer and the maintenance of cancer, then how therapies can be used to alter the natural history of some of these cancers.

“The first thing to say is how grateful I am to the Leukaemia Foundation for that scholarship,” said Prof. Dawson.

“It played a critical role in me deciding to come back to Australia*.

“It provided the financial security to expand the research I was about to do, to build a research team, and ask some of the questions that we have answered over the last five years”.

At the time Prof. Dawson was conducting his research at the University of Cambridge (UK) where he was supported by a Wellcome Trust Beit Fellowship. 

Lisa Christie shares her stem cell transplant experience

Lisa Christie shares her stem cell transplant experience

Lisa Christie shares her experience of having a stem cell transplant in 2016, following her diagnosis with AML just before Christmas the previous year.

20 December 2015: I had my first two units of blood. I also got the diagnosis of acute myeloid leukaemia with trisomy 6.

21 December 2015: I started my first round of chemo (HIDAC3). Went pretty well, didn’t really have any symptoms yet. I had a fair bit of nausea and diarrhoea over Christmas though. It was an emotional time for me, because it was Jackson’s first Christmas and my 30th birthday on New Year’s Eve. I had lots of visitors which did help, but all I was doing was sleeping and walking around in a bubble.

Lisa, her partner and young son in the hospita;
Stem cell transplant day and Jackson’s first birthday. Huge, emotional day!

29 December 2015: I had my first bad temperature. Started IV antibiotics for strep… continued on the IV antis, kept having temps on and off. My sister also shaved all my hair off, it was falling out anyway.

4 January 2016: I had my first bad allergic reaction to Stemetil. It was horrible! It was this uncontrollable neck flexion and blurred vision… really scary!

At around this time Professor Grigg (or the Silver Fox as my sister called him haha!) had explained to me that I needed a stem cell transplant. I was not happy about this. Later on I realised it was the best treatment for me. But at the time I was really scared. I looked up the protocol on the hospital portal (which I shouldn’t have). The doctors told me off for doing that. Lol. I soon realised all the data was based on older people, not someone in their 30s. Anyway, both my sisters got tested to see if they could donate their stem cells to me, unfortunately they were not a match. So began the search for an unrelated donor.

11 January 2016: Day 23 post starting the HIDAC and my neutrophils were finally increasing! 0.1.

18 January 2016: My neutrophils were 0.5 and I was allowed to go home for a few days! A month after starting chemo.

27 January 2016: Readmitted for first cycle of consolidation little-ICE chemo.

2 February 2016: Discharged, seemed like a really short admission compared to the first one! But the chemo really hit my bone marrow, the doctors would soon find out.

8 February 2016: Back in for neutropenia. Had more temps, so more IV antis started. Lots of blood and platelets transfused during this admission. I also had really bad bottom pain! That was actually my worst side-effect of my whole stay in hospital. I didn’t vomit once, just constant diarrhoea! It does get better as soon as your counts start rising.

16 February 2016: DISCHARGED!

26 February 2016: Came in for a routine bone marrow biopsy, which showed I had really low neuts, Hb and platelets so had to get readmitted, which I was very annoyed about. They realised they needed to find a donor pretty quickly then. I was given two units of blood for a Hb of 77 and the following day it had actually decreased to 75! So, my marrow was struggling. In the meantime, I had more blood and platelets transfused and started the pre-transplant tests… gated pool study, chest CT, respiratory function test, a million blood tests, counselling, dental X-ray.

8 March 2016: Hickman line was inserted in preparation for stem cell transplantation and they discharged me home on a special injection (G-CSF) to keep all my counts up. They had more importantly found an unrelated male donor in Melbourne!

13 March 2016: Admitted to D8, pre-stem cell transplant (SCT).

14 March 2016: Started pre-SCT chemo.  The first one was fludarabine. I also had a couple of bags of platelets and one unit of blood.

16 March 2016: Diarrhoea started, but still no vomiting.

18 March 2016: Had thymoglobulin (helps reduce graft versus host disease) and melphalan (chemo) transfused.

20 March 2016: Cyclosporine commenced (anti-rejection drug).

21 March 2016: Finally, the day of the SCT (which is also our son’s 1st birthday!) so we had a little party for him in the morning… in the bubble. And then later that night I was given pre-meds (maxalon and promethazine.) I had a little reaction to the maxalon, which caused agitation. I remember pacing the room but feeling drowsy from the promethazine at the same time. The actual stem cell transfusion was just like any other transfusion… I didn’t feel anything.

22 March 2016: Was feeling pretty good. Just put on some extra fluid, which is normal… I had a little bit of Lasix to get the fluid off. Had a couple more units of blood.

23 March 2016: Sleeping A LOT but still having a shower every day and walking around the bubble. Not eating much at all. On IV antibiotics.

27 March 2016: Still having ongoing chemotherapy (methotrexate) after sucking on ice. Sucking on ice really helps stop mouth sores!

28 March 2016: Started TPN** today because I couldn’t eat or drink much. More because I was so tired. I only had mild nausea, but nothing too bad. Not much else happened after the SCT. Had bloods and platelets transfused nearly daily. Remained on the TPN because I didn’t feel like eating or drinking much. The cyclosporine was also a constant transfusion. I also stayed on IV antis most of the time. My biggest problem was still bottom pain, it was so annoying! But at least I wasn’t vomiting. I showered every day and walked around the bubble. I wish I was watching Netflix, but I didn’t really know how it worked at that stage. So I was reading and watching daytime TV.

A lot of other patients I saw were on fentanyl patient-controlled analgesia (PCA) for mouth pain. I was lucky enough to not have many ulcers, so I didn’t require that. But don’t hesitate to ask for a PCA if you have pain. Keep up the mouth washes as often as you can!

5 April 2016: Donor cells started to engraft! 0.1 neutrophils.

9 April 2016: Discharged home!

On discharge, I was on loads of drugs, but they gradually start decreasing so don’t worry. I was also having ongoing diarrhoea but that also started getting better as the drugs got weaned off. I went to day oncology as an outpatient Mon/Wed/Fri for a few weeks.

24 May 2016: My Hickman line was removed and we started getting back to normal life. We did spend a lot of time in Shepparton at my Mum’s house, just to help out with Jackson. Anthony was also working so it was boring at home.

So, in summary, the actual SCT wasn’t as bad as I thought. I was just super tired and couldn’t eat or drink much. I didn’t really get any bad temps with it either. I think my first round of chemo was harder to deal with to be honest. Just keep walking, showering and try and stay positive. Suck on ice before chemo and keep up rinsing your mouth. My transplant was three years ago now, so I’m sure they have improved on everything by now!

A Hickman line is a central venous catheter.

** Total parenteral nutrition (TPN) supplies all daily nutritional requirements.

Cipla generic imatinib benefits Leukaemia Foundation

Cipla generic imatinib benefits Leukaemia Foundation

In Australia, approximately 3000 people with CML diagnosis are on imatinib treatment and almost 30% of them take a generic imatinib.

If they were to choose one particular brand of generic imatinib, they also would make a significant donation to the Leukaemia Foundation’s research program each time they filled their prescription.

For Benefit Medicines (FBM) – Australia’s first ‘for-benefit’ pharmaceutical company – was established under a social enterprise model, with the sole purpose of distributing 100% of profits to patient support and medical research in Australia.

FBM directors, Barry Frost, left, and John Hurley.
FBM directors, Barry Frost, left, and John Hurley.

FBM distributes an imatinib generic drug – Cipla Imatinib Adult. This medicine, approved by the Therapeutic Goods Administration for use in Australia, is required to meet the same strict regulations as applied to the original brand (Glivec®), with regard to quality, safety and effectiveness.

Cipla is one of eight different brands of generic imatinib, which together make up 30% of scripts. The remainder is Glivec.

In a partnership with FBM, the Leukaemia Foundation is poised to benefit from the sales of Cipla Imatinib. 

Since late-2017, FBM Foundation has supported the Leukaemia Foundation through a partnership agreement where 100% of profits from sales of their brand of imatinib (Cipla Imatinib Adult) will go to the Leukaemia Foundation.

For each script of Cipla Imatinib, once FBM’s costs are covered, the Leukaemia Foundation will receive all profits, which will be directed to further research based on the Leukaemia Foundation’s research funding policy.

Cipla Imatinib is available on prescription from doctors and for dispensing through pharmacies. It is listed on the Pharmaceutical Benefits Scheme and is the same cost to people with CML as other current CML imatinib medications.

Therapeutic Goods Administration (TGA) has today approved the use of the first CAR-T therapy in Australia

Therapeutic Goods Administration (TGA) has today approved the use of the first CAR-T therapy in Australia

Thursday 18 January 2020
Therapeutic Goods Administration (TGA) has today approved the use of the first CAR-T therapy in Australia.

A revolutionary cancer therapy that supercharges a patient’s immune cells to hunt and destroy cancer cells has been approved for use in Australia, ushering in a new era in medicine.

The TGA has approved Kymriah® (tisagenlecleucel, formerly CTL019) CAR-T therapy for use in paediatric and young adult patients up to 25 years of age with B-cell precursor acute lymphoblastic leukaemia (ALL) that is refractory, in relapse post-transplant, or in second or later relapse.

The therapy is also approved for the treatment of adult patients with relapsed or refractory diffuse large B cell lymphoma (DLBCL) after two or more lines of systemic therapy. Publicly-subsidised access through the Medicare Benefits Schedule (MBS) has not yet occurred.

CAR-T therapy involves extracting a patient’s own beleaguered immune cells and genetically re-engineering them before infusing them back into the body. The single-shot “living drug” has generated enormous excitement in the medical world.

Results from the ELIANA CAR-T cell clinical triali in children and young adult patients with relapsed or refractory ALL show an 82% remission rate within 3 months and a 62% relapse-free survival after 2 years.

While for some patients, CAR-T therapy will lead to a cure, other patients will relapse meaning the therapy will be used as the mechanism to lead to remission to enable a stem cell transplant as the next line treatment option.

The CAR-T therapy will be available at three treatment centres in Australia, including Royal Prince Alfred Hospital in Sydney, and Peter MacCallum Cancer Centre and Royal Melbourne Children’s Hospital in Melbourne. Patients are required to privately pay for the treatment which is estimated at around $598,000 in costs for the therapy alone.

Leukaemia Foundation CEO Bill Petch applauds the TGA approval and confirmed this is a step closer to ensure Australians living with blood cancer have equal and affordable access to the latest cutting-edge treatments, as soon as possible.

“We know targeted therapy; precision medicines and immunotherapies are leading the way in blood cancer treatments and we are committed to driving development in this area. Mr Bill Petch said. 

Federal Health Minister Greg Hunt said the Government’s goal is to make Australia one of the global treatment centres for CAR-T therapy.

He said he was working closely with State and Territory ministers to provide access to patients through the public system as soon as possible. 

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

“Whether you live in a metropolitan city or a rural town, access to new therapies will be a critical component and it’s our priority to ensure all Australians living with a blood cancer have support and equal access to the treatment they need.” Mr Bill Petch said.

Acute lymphoblastic leukaemia (ALL) is a type of cancer that affects the blood and bone marrow. ALL is characterised by an overproduction of immature white blood cells, called lymphoblasts or leukaemic blasts. More than 300 adults and children are diagnosed with ALL each year in Australia.

DLBCL is an aggressive type of non-Hodgkin lymphoma that develops from the B-cells in the lymphatic system. It is the most common subtype of non-Hodgkin lymphoma accounting for 30%-40% of all cases in Australia, which equates to around 1500 people newly diagnosed each year.

The Leukaemia Foundation provides free practical and emotional support to Australian’s diagnosed with a blood cancer including ALL and DLBCL.


Supporting Australians living with blood cancer affected by the bushfire crisis

Supporting Australians living with blood cancer affected by the bushfire crisis

The Leukaemia Foundation’s CEO Bill Petch has acknowledged the immediate and ongoing impact the recent bushfire events will continue to have on people living with a blood cancer across the country.

“Our hearts go out to all Australians directly or indirectly impacted by these devastating fires. The loss and trauma experienced by this tragic disaster is simply unfathomable and nothing short of heartbreaking,” he said.

“Our sympathies are with the thousands of Australian families who have felt the full force of the sheer devastation and havoc unleashed by these fires. Our utmost gratitude is with those who are working courageously and tirelessly on the frontline of this ongoing battle, and to those in our national community who have given generously in a show of support for all involved in this crisis, we sincerely thank you.

“For those of us fortunate enough to not have been personally impacted by the fires where we live, it can be incredibly difficult to comprehend what any Australian caught up in this crisis has experienced in recent weeks and months.

“It is harder again to imagine what people battling a blood cancer in these fire-ravaged areas must be experiencing.”

Mr Petch said he recognised the uncertainty and stress likely being felt by Australians living with blood cancer who may be facing disruption to their treatment regime or care plan or who could have been cut off from their local support or clinical services due to the change in conditions.

“The impact of these fires will only compound the challenges already faced by regional and rural patients and families when it comes to accessing treatment and services,” he said.

Mr Petch said the Leukaemia Foundation’s full suite of support services were available to patients impacted by the fires, including accommodation while undergoing treatment, transport to medical appointments, emotional support, education and information around blood cancer, and other practical and financial support services.

“Our team members are reaching out to Australians who we are aware of who are living with blood cancer in affected areas to ensure their safety and that they are receiving the care they need, and our telephone lines are open. We urge all blood cancer patients and their families who have concerns or questions to contact us for support,” he said.

“We understand that blood cancer doesn’t stop for fires. We appreciate that there will be people who need our support and we wish to remind them that we are here to help.”

Mr Petch said the number of Australians being diagnosed with a blood cancer and the demand on Leukaemia Foundation services hadn’t slowed in light of recent events.

“Just like bushfires, blood cancer doesn’t discriminate. It can develop in anyone, of any age, at anytime, anywhere – and the reality is that for every day that these fires have ravaged our country, 41 Australians have been diagnosed with a blood cancer,” he said.

Whether you or someone you know is affected by blood cancer and needs support, we encourage everyone to please call us on 1800 620 420 and speak with your local Blood Cancer Support Coordinator.

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Asciminib – the biggest breakthrough yet in CML treatment

Asciminib – the biggest breakthrough yet in CML treatment

A next-generation treatment for CML, asciminib, is the biggest breakthrough in CML treatment this century, according to Professor Timothy Hughes.

Lisa McNeil, who was diagnosed with CML in late-2001 aged 30, went on the asciminib trial in mid-2015. She is still on the trial and describes her experience with this drug as “a lot better than the old TKIs”.
Lisa McNeil, who was diagnosed with CML in late-2001 aged 30, went on the asciminib trial in mid-2015. She is still on the trial and describes her experience with this drug as “a lot better than the old TKIs”.

He spearheaded development and testing of the new treatment and is lead author of the results of an international study, published in the New England Journal of Medicine, in December 2019.

Asciminib is a new tyrosine kinase inhibitor (TKI) that is well tolerated and does not have the serious side-effects of the original TKI, imatinib. In the 1990s, imatinib changed CML from a death sentence to a disease that could be managed and meant many patients lived into old age.

While imatinib and subsequent TKIs approved for use in Australia are very effective at improving survival, they also frequently cause serious side-effects because they are not well targeted. In addition to attacking leukaemic cells, they also damage healthy cells which can result in vomiting, diarrhoea and muscle pain.

Professor Hughes said asciminib selectively blocks the mutant kinase present in the leukaemic cells and an international clinical trial involving researchers in Adelaide has demonstrated the safety and efficacy of asciminib.

“This trial of 150 patients showed asciminib is highly effective, even in patients who’d failed to respond to several other TKIs,” said Prof. Hughes about the Phase I dose-escalation study.

“Equally as important, it’s well tolerated by patients and appears to have significantly less long-term ill-effects compared to current treatments.”

While more than 4000 Australians currently live with CML, by 2040 CML is estimated to become the most common form of leukaemia, due to the increasingly high survival rate. This has resulted from TKI treatment.

Lisa McNeil, who was diagnosed with CML in late-2001 aged 30, went on the asciminib trial in mid-2015. She is still on the trial and describes her experience with this drug as “a lot better than the old TKIs”.