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Leukaemia Foundation supports Health Minister in PBS announcement for dasatinib

Leukaemia Foundation supports Health Minister in PBS announcement for dasatinib

Australians who are newly diagnosed with an aggressive leukaemia will now have access to the drug dasatinib following an announcement by Federal Health Minister Greg Hunt this week.

Dasatinib, a drug that is used in the treatment of several types of leukaemia, will now be available to patients who are newly diagnosed with Philadelphia chromosome positive (Ph+) Acute Lymphoblastic Leukaemia (ALL).

The drug was previously PBS listed, but only for patients with relapsed or refractory forms of the disease – or patients newly diagnosed with (Ph+) Chronic Myeloid Leukaemia (CML).

Leukaemia Foundation CEO Bill Petch said the extended listing gives Australians living with Ph+ ALL access to an important precision medicine and front-line treatment to fight their disease.

ALL is a disease of the blood and bone marrow characterised by an overproduction of immature white blood cells. ALL can occur at any age but is more common in young children aged 0-14 years, who represent 60 percent of all cases. It is the most common type of childhood leukaemia and is the most common childhood cancer.

“ALL like many blood cancers, is an incredibly aggressive disease and survival rates decrease with age. Today, most children can be cured of the disease, but in adults cure rates are more variable.

“We hope that access to new treatments like dasatinib as a front-line treatment will improve survival rates,” Mr Petch said.

“Australians living with all blood cancers want timely and affordable access to the best possible drug to treat their specific disease,” Mr Petch said.

“We are encouraged by the Government’s commitment to list all medicines on the PBS that receive a positive recommendation from the Pharmaceutical Benefits Advisory Committee (PBAC).”

Max’s story: living well with mantle cell lymphoma

Max’s story: living well with mantle cell lymphoma

Max was 61 and leading an active life – cycling, swimming and running – when he was diagnosed with mantle cell lymphoma (MCL). He was in remission for nine years after having chemotherapy and stem cells. When he relapsed, his only option was oral targeted therapy, which he’s been on since 2017.

Now Max is back on his bike and exercising three times a week. His message is simple “Enjoy family, enjoy life and appreciate everyday.” Max stays positive and whilst there might be ups and downs, he is living well and enjoying a great quality of life.

The Leukaemia Foundation is there to support people, like Max, with blood cancer and help them navigate that journey.

Remember, discussing treatment options for MCL with your haematologist is important to ensure you are on a treatment plan that works best for you. If you’re starting a new treatment plan it’s important to find a way that works for you to build a habit and stay compliant with treatment protocols – a diary, checklist, time of day – all help to keep you on track.

Connect with our support team

Fill in your details below and one of our Blood Cancer Support Coordinators will contact you within the next five (5) business days to discuss the services and support available to you. If you have an urgent request, please contact us on 1800 620 420.

Joint funding partnership bolsters Australian blood cancer research

Joint funding partnership bolsters Australian blood cancer research

Australian research will benefit from a new partnership between US-based The Leukemia & Lymphoma Society (LLS) and two Australian organisations, Snowdome Foundation and Leukaemia Foundation.

The Snowdome Foundation and Leukaemia Foundation have joined forces with America’s The Leukemia & Lymphoma Society (LLS) to fund four blood cancer research projects with Australian researchers through the LLS Translational Research Program. LLS funds new and innovative research that shows high promise for translating basic biomedical knowledge to clinical application.

Leukaemia Foundation CEO Bill Petch said the partnership is a fantastic opportunity for the three organisations to unite to support leading Australian blood cancer researchers with the potential to have a global impact.

“This collaboration is a great example of three organisations coming together to support the most innovative blood cancer research with the potential not only to improve treatment and outcomes for Australian patients, but for people living with blood cancer around the world. By partnering together, we are able to raise more funds to increase the depth of research we are able to fund,” said Petch.

The Translational Research Program is an LLS initiative, however this is the first time two Australian organisations have partnered with LLS to bring funding to Australian researchers.

Petch added, “The partnership is proud to announce the 2018/19 grant recipients that sees four Australian researchers each receive grants worth US$600,000 to extend vital blood cancer research programs across myeloma, lymphoma and leukaemia.”

The grant recipients are; Dr. Ricky Johnstone, University of Melbourne, Dr. Stephen Nutt, Walter and Eliza Hall Institute and Dr. Ashwin Unnikrishnan, UNSW Sydney, who each will receive a three-year grant. Australian blood cancer researcher, Dr. Charles Mullighan, currently working at the renowned St Jude’s Children’s Research Hospital in Memphis, USA, is the fourth grant beneficiary.

Chief Scientific Officer of The Leukemia & Lymphoma Society Lee Greenberger, Ph.D. said the collaboration was very promising and has great potential to benefit patients with blood cancer worldwide.

“The Leukemia & Lymphoma Society is delighted to collaborate with Snowdome Foundation and the Leukaemia Foundation to support these accomplished Australian investigators,” said Greenberger.

“Australia has a strong history of pioneering breakthroughs, from basic discoveries to the clinic, including breakthroughs such as venetoclax, which now has wide application for multiple blood cancers. The diversity of expertise in this current outstanding group of grantees is representative of the significant contributions Australians have made in advancing treatments for cancer patients.”

Snowdome CEO Miriam Dexter said the partnership allowed for increased funding to Australian blood cancer projects.

“Snowdome is passionate about funding Australian blood cancer researchers. We recognise the talent pool of researchers in Australia however there is a real need to increase blood cancer funding,” Dexter said. “The partnership between The Leukemia & Lymphoma Society, Snowdome Foundation and the Leukaemia Foundation allows for increased funding, greater reach and ultimately more blood cancer research to be conducted. It will continue for another year with several research program grants in 2019/20. We look forward to another year of inspiring research proposals.”

Once again there are multiple grants available in 2019/20, with Letters of Interest closing on August 31st.  For further information, please visit https://www.lls.org/research/translational-research-program.

The Leukemia & Lymphoma Society-Snowdome Foundation-Leukaemia Foundation Translational Research Program 2018-19 recipients and their respective research proposals are:

Dr. Ricky Johnstone (University of Melbourne) Dr. Johnstone aims to advance novel precision medicine therapies for diffuse large B-cell lymphoma (DLBCL), the most common form of non-Hodgkin lymphoma. He is testing therapies that inhibit a gene called TET2 that is often mutated in blood cancers, including DLBCL. TET2 plays a role in a mechanism called epigenetics, which switches genes on and off. When these epigenetic changes activate or inactivate genes improperly it allows cancer cells to proliferate.

Dr. Stephen Nutt (Walter & Eliza Hall Institute) Multiple myeloma (MM) is a cancer characterised by overgrowth of a white blood cell called plasma cells that form in the bone marrow. This aberrant growth depends on a regulatory protein called IRF4. Dr. Nutt will employ a novel approach to identify and test drugs that can inhibit IRF4 and block the growth of MM cells.

Dr. Ashwin Unnikrishnan (UNSW Sydney) The drug azacitidine is currently the best available treatment for myelodysplastic syndrome (MDS), yet the majority of patients do not respond to the drug, and others eventually suffer relapse. Dr. Unnikrishnan will investigate mechanisms by which azacitidine inhibits MDS cells and identify cellular pathways and features that are modulated by azacitidine treatment. This study will provide insight into why some patients do not respond and lay the groundwork for development of alternative therapeutic strategies.

Dr. Charles Mullighan (St. Jude Children’s Research Hospital) Acute lymphoblastic leukemia (ALL) remains a leading cause of childhood cancer death, and one type of this disease, Philadelphia-like ALL (Ph-like ALL), has an extremely poor outcome. A common feature of Ph-like ALL is the aberrant function of a particular gene named CRLF2. Dr. Mullighan will develop two novel therapeutic approaches to counteract the CRLF2-related defects in cancer cells.

We couldn’t have got through the past year without you

We couldn’t have got through the past year without you

A blood cancer diagnosis at any age is a devastating blow, but for young adults, often in the peak of their lives, the impact can be even greater.

Looking back on the past 12 months many people will think of certain milestones; birthdays, Christmas, maybe an overseas trip, starting a new job or even buying a first home.

Dan, his fiance Nat and their dogs Murphy and Millie
Dan, his fiance Nat and their dogs Murphy and Millie

But for Dan Hartley those milestones will look little different; day of diagnosis, first round of chemo, stem cell transplant, all-clear day, going home day.

Dan (28), from Launceston, Tasmania, experienced over three months of chronic pain and fatigue leading up to a shocking leukaemia diagnosis.

“My whole body was aching, I couldn’t sleep, had night sweats with all my muscles, lungs and everything aching,” remembers Dan.

“I even decided to give up my carpentry job, thinking that was causing it all and when I first went to the doctor they originally thought I had rheumatoid arthritis.”

As things worsened Dan’s fiancé and partner of nine years, Nat became increasingly concerned.

“I’m a nurse as well, so seeing Dan in that type of pain for weeks was really hard,” said Nat. “He was just so symptomatic, it was obvious there was something seriously wrong,”

After numerous trips to the GP without any answers, Dan was sent to emergency in September 2018 to undergo further tests.

“I was in the hospital for two weeks speaking to a million different doctors but no one could get to bottom of it,” said Dan.

“They eventually got me in to see a rheumatologist and from there, things moved really quickly.

“They did a heap of tests; MRI’s, CT and bone scans and the very next day I finally got my diagnosis; I had leukaemia.”

Dan was diagnosed with B-cell acute lymphoblastic leukaemia (ALL) with the Philadelphia chromosome. Although this chromosome accelerates the growth of the cancer, it also makes it easier to target and treat.

“I started chemotherapy straight away at Launceston Hospital,” said Dan. “That first cycle was definitely the worst as they just wanted to attack it and get on top of it all, but I handled the second pretty well.”

During this time, Dan and Nat were put in contact with the Leukaemia Foundation in Launceston.

“The support was absolutely invaluable to us and we couldn’t have got through all this without the Leukaemia Foundation,” said Dan.

“It was great to have someone to speak to about it all and have an idea of what to expect.

“They offered to cover our power, water and phone bills and if Nat had to work, the Leukaemia Foundation would organise someone to take me to appointments.

“It took such a burden off in that tough time and we even got a Leukaemia Foundation hamper at Christmas time packed full of awesome stuff.”

At the end of his second cycle of chemotherapy, Dan was flown to Melbourne to start preparations for an allogeneic stem cell transplant.

“It was all very overwhelming, meeting with the specialists, getting the blood tests, being faced with all the terminology – that was definitely my worst day,” said Dan.

“We flew over at 10 o’clock that morning and didn’t get home until 9 o’clock that night. I just went into my bedroom and broke down for about an hour.”

Having to leave behind their two beloved dachshunds, Murphy and Millie as well as a half-renovated house, Dan and Nat travelled to Melbourne in early February 2019.

“Dan was lucky as both his twin brother and his older sister were a match,” explains Nat. “But they like to have a little difference with the cells, so his sister was chosen as his donor.”

“In preparation, I received a total body of radiation for about four days, three times a day,” said Dan. “I also received a chest boost and a testicular boost of radiation as I had a bit of localised cancer there.”

“So my sister flew over at the end of February and we did the transplant – everything went really well.”

Dan and Nat were referred onto the Leukaemia Foundation team in Melbourne to assist with accommodation and further support during the transplant.

“They covered the cost for a unit nearby while we waited for the Leukaemia Foundation accommodation to become available,” said Dan.

“After about a month we were able to move across to the self-contained units which was just fantastic,” said Nat.

“Our families have been so supportive, with Dan’s parents moving back to Launceston from Melbourne a week after we received his diagnosis. Everyone has really chipped in looking after our house and dogs for us.

“Our nieces and nephews drew a heap of pictures and was sending Dan videos – it keeps our spirits high throughout those hard times.”

Dan and Nat found connecting with others going through the same journey invaluable throughout the treatment.

“Back in Tassie we met another young couple who was also going through the same thing,” said Nat.

“They were also a nurse and a carpenter which was funny – It’s great to talk with someone who understands completely because speaking with people who haven’t been through cancer, there’s a lot of explaining and you get really tired of it.

“You don’t need to talk about the cancer all the time either and it’s not awkward at all, you can just speak about normal everyday things.

“We’re now best mates and are so thankful we have had them throughout this whole process.”

Dan and Nat also attended a support group session at the Leukaemia Foundation in Melbourne, speaking to other young adults and their carers about living with blood cancer.

“Many of the others there were just starting their treatment and I think we’re quite grateful to listen to our story,” said Dan.

“One of the guys partners was quite worried and she thought she was alone throughout it all, so it was good to talk it out and reassure her there are others she can connect with and relate to.”

A Leukaemia Foundation support co-ordinator has been helping Dan with his post-treatment plans since he won’t be able to return to his physically-demanding carpentry work.

“She’s been helping me out, giving me advice on some study options and looking at a few university courses,” said Dan. “We’re thinking project management or OH&S, so I can use my 10 years’ experience working in the construction industry.”

Dan has now completed his 100-day recovery from the transplant and the couple were able to return home to Launceston in early June.

“I’ll still be seeing the doctor frequently back home in Tassie for the first couple of months and be back and forth from Melbourne to do blood tests, bone marrow biopsies and get immunisations again,” said Dan.

“But we are just loving being back home, catching up with all our friends and family and of course spending as much time as possible with Murphy and Millie.”

“We’d also love to do some travelling and to live our lives a bit more doing whatever we want…just getting back to normal life,” adds Nat.

Talking myelodysplastic syndrome with Dr Melita Kenealy

Talking myelodysplastic syndrome with Dr Melita Kenealy

Dr Melita Kenealy covered the basics of myelodysplastic syndrome (MDS), current treatments and living with the disease when she spoke at the Leukaemia Foundation’s Blood Cancer Conference (Melbourne, October 2018).

A consultant haematologist at Cabrini Hospital (Melbourne), Dr Kenealy has an active research interest in MDS and runs Australia-wide clinical trials looking to pioneer new and improved treatments.

At the conference, she spoke about azacitidine (Vidaza®), the first treatment available through the Pharmaceutical Benefits Scheme in Australia for high-risk MDS, and the potential of targeted therapies in the future.

“We’re learning a lot about the bone marrow in MDS and different faults that can happen in some of the genes and chromosomes that cause the disease,” said Dr Kenealy.

“That means we can start to develop targeted treatments for those specific abnormalities.

“At the moment we’re learning about these gene faults and a few drugs are coming out on clinical trials and gradually becoming available that will be relevant for some sub-types of MDS.”

She said MDS was a difficult disease to understand and highlighted the importance of people learning about their disease.

“The Leukaemia Foundation has a great website,” said Dr Kenealy.

She talked about blood transfusions for people with anaemia or low red blood cell counts and the most common question patients ask her is: “at what blood level or haemoglobin level should I have a transfusion?”.

“There’s really no one answer,” Dr Kenealy said, “because it’s an individualised decision that depends on how people feel and what other medical conditions they may have.”

That depends on how people feel and what other medical conditions they may have.”

To listen to the audio of Dr Melita Kenealy’s entire presentation, click here.

Wayne’s story: living well with chronic lymphocytic leukaemia

Wayne’s story: living well with chronic lymphocytic leukaemia

In May 2007, Wayne was diagnosed with chronic lymphocytic leukaemia CLL at the age of 55. It was a shock, but for him life carried on more or less as normal as his haematologist put him on ‘watch and wait’.

It wasn’t until three years later that he was told he would need to undergo his first chemo treatment which successfully kept him in remission until mid-2016 when he was given a choice. He could go through chemo again or try a new oral therapy – Wayne chose the oral therapy method and has been able to get on with life and feels like he did 20 years ago.

His advice for someone in relapse with CLL is check with their treating specialist and ask for options.

The Leukaemia Foundation is there to support people, like Wayne, with blood cancer and help them navigate that journey.

Remember, discussing treatment options for CLL with your haematologist is important to ensure you are on a treatment plan that works best for you. If you’re starting a new treatment plan it’s important to find a way that works for you to build a habit and stay compliant with treatment protocols – a diary, checklist, time of day – all help to keep you on track.

Connect with our support team

Fill in your details below and one of our Blood Cancer Support Coordinators will contact you within the next five (5) business days to discuss the services and support available to you. If you have an urgent request, please contact us on 1800 620 420.