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National blood cancer taskforce meets

National blood cancer taskforce meets

Monday September 30, 2019

The Leukaemia Foundation established the Blood Cancer Taskforce with the support of the Federal Government to develop Australia’s first National Strategic Action Plan for Blood Cancer.

Co-chaired by Bill Petch (CEO, Leukaemia Foundation) and Professor John Seymour AM (Director, Department of Haematology, Peter MacCallum Cancer Centre and the Royal Melbourne Hospital), the Taskforce unites Australia’s leading haematologists, researchers, patients and members of the blood cancer ecosystem for the first time. Their role is to provide a blueprint to help tackle the key issues facing the blood cancer community today and into the future.

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

They met for the first time on 30 September 2019, giving them the opportunity to discuss and agree on how they will achieve the publication and distribution of the National Strategic Action Plan for Blood Cancer Plan by June 2020.

The first step will see the formation of Working Groups led by members of the Taskforce to focus on key priorities identified in the State of the Nation: Blood Cancer in Australia report. These Working Groups will engage in consultation with key blood cancer stakeholders, review existing services, programs and literature, and commence the early stages of drafting the National Strategic Action Plan for Blood Cancer.

The members of the first National Blood Cancer Taskforce are:

  • Professor Sanchia Aranda AM
    CEO
    Cancer Council Australia
  • Dr Sharon Avery
    Haematologist
    Cairns Base Hospital
  • Dr John Bashford
    Director of Research
    Icon Group & PCPA
  • A/Professor Kate Burbury
    Consultant Haematologist;
    Deputy Chief Medical Officer
    Peter MacCallum Cancer Centre
  • Dr Joe Collins
    Representative
    Lions Club International
  • Dr Michael Dickinson
    Haematologist and Disease Group Lead Aggressive Lymphoma (Peter MacCallum)
    Lymphoma Australia, Chair Medical Subcommittee
  • Dr Chris Fraser
    Chair Executive Council
    ANZCHOG
  • Professor Maher Gandhi
    CEO and Director of Clinical Research
    Mater Research
  • Professor David Gottlieb
    Program Director BMT, Head Cell Therapies
    Westmead Hospital
  • Barbie Hartigan
    Advocate
    Leukaemia Foundation Patient Support
  • Professor Tim Hughes
    Cancer Theme Leader
    SAHMRI
  • Dr Paul Jackson
    General Manager Knowledge Management
    Cancer Australia
  • Professor David Joske
    Chairperson
    Solaris Cancer Care
  • Melanie Kelly
    Director
    Insight Economics
  • Dr Rishi Kotecha
    Consultant Paediatric Oncologist & Clinical Haematologist
    Perth Children’s Hospital; ANZCHOG
  • A/Professor Steven Lane
    Head of Cancer Program
    QIMR Berghofer
  • Professor Paula Marlton
    Head of Leukaemia; Deputy Director Haematology
    Princess Alexandra Hospital
  • Dr Robert Menz
    SA&NT Council member
    RACGP
  • A/Professor Peter Mollee
    Director
    Australasian Leukaemia & Lymphoma Group
  • Carmel O’Kane
    Cancer Nurse Practitioner; Vice President & Director Professional Practice
    Cancer Nurses Society of Australia
  • Bill Petch
    CEO
    Leukaemia Foundation
  • Professor Miles Prince AM
    Director of Molecular Oncology and Cancer Immunology Epworth
    Snowdome Foundation; Myeloma Australia, Epworth Hospital
  • Professor Andrew Roberts
    Laboratory Head; Joint Leader, Cancer Research and Treatments Theme
    Walter and Eliza Hall Institute
  • Professor John Seymour AM
    Director: Department of Haematology
    Peter MacCallum Cancer Centre & Royal Melbourne Hospital
  • Deborah Sims
    Patient and advocate
    Blood Cancer Survivor
  • Dr Delaine Smith
    CEO
    Australasian Leukaemia & Lymphoma Group
  • Elizabeth de Somer
    CEO
    Medicines Australia
  • Dr Meg Wall
    Unit Head, Genetics and Molecular Pathology
    Monash Pathology; Haematology Society of Australia & New Zealand
  • Dr Will Stevenson
    Haematologist
    Royal North Shore Hospital; Haematology Society of Australia & New Zealand
  • Richard Vines
    Chairman
    Rare Cancers Australia

Leukaemia Foundation supports latest Pharmaceutical Benefits Scheme (PBS) listings for blood cancer patients

Leukaemia Foundation supports latest Pharmaceutical Benefits Scheme (PBS) listings for blood cancer patients

The Leukaemia Foundation has welcomed news Australians living with Philadelphia chromosome B-cell precursor acute lymphocytic leukaemia (B-ALL) will now have access to treatment options blinatumumab (Blincyto®) and inotuzumab ozogamicin (Besponsa®) through the Pharmaceuticals Benefits Scheme (PBS) effective October 1, 2019.

Leukaemia Foundation CEO Bill Petch joined Federal Minister for Health, The Hon. Greg Hunt MP and industry leaders today at the Northern Cancer Institute in Sydney for the announcement.

Mr Petch said the extended listing gives Australians living with relapsed or refractory B-ALL access to vital precision medicine and front-line treatment to fight their disease.

“This is an important announcement for people living with B-ALL, which is an acute and incredibly aggressive form of blood cancer. These PBS listings means there are more options available for B-ALL patients, so it is welcomed by the blood cancer community” he said.

“Today is also an important day for the blood cancer community as the National Blood Cancer Taskforce will meet for the first time this afternoon in Sydney.” Mr Petch said.

In response to the Leukaemia Foundation’s State of the Nation: Blood Cancer in Australia report1 release earlier this month, the Federal Minister for Health, The Hon. Greg Hunt MP announced the development of a national Blood Cancer Taskforce and charged the Leukaemia Foundation with delivering Australia’s first National Strategic Action Plan for Blood Cancer.

The Blood Cancer Taskforce unites Australia’s leading hematologists, researchers, patients and members of the blood cancer ecosystem for the first time to work with the Leukaemia Foundation to develop the National Strategic Action Plan, which will provide the blueprint to help tackle the key issues facing the blood cancer community today and into the future.

Mr Petch said the formation of the Taskforce and development of the National Strategic Action Plan together mark a major milestone for the blood cancer community and will set the national agenda around blood cancer for many years to come.

The Leukaemia Foundation provides free practical, emotional and educational support to Australians diagnosed with a blood cancer including B-ALL. The Leukaemia Foundation produces a series of disease specific newsletters including ALL News, and invites all Australians living with the disease to subscribe for ongoing information here.

“Leukaemia took me to the edge and brought me back”

“Leukaemia took me to the edge and brought me back”

Shane Dawe was diagnosed with a blood cancer called acute myeloid leukaemia (AML). The following are all Shane’s words, shared with the Leukaemia Foundation to help raise awareness of blood cancer during September’s Blood Cancer Awareness Month 2019.

In November of 2018, I presented to emergency in Gladstone with a sinus infection that just wouldn’t go away – even with antibiotics from my GP.

Just under 3 hours later I was on a Royal Flying Doctors’ Service flight to Brisbane where it was confirmed I had AML. I didn’t even know what leukaemia was.

Shane Dawe and partnerFor the next week I was poked and prodded constantly to get my exact makeup of my AML. During this time, I made the mistake of Googling my cancer. I wish I had never done this, as for months after I lived each day expecting not to wake up the next morning.

For 8 months I was either in hospital or at the Leukaemia Foundation village. The first week of chemo didn’t work and my hopes sank. The second week was a stronger treatment and I got into remission.

“Woohoo! It’s over!” … Nope.

The best hope of staying in remission was a Bone Marrow Transplant. While waiting for a donor to be found I had four rounds of consolidation chemo, then I received the news that there was no donor anywhere in the world that matched my rare tissue type.

The lady in the picture with me was my only chance. My Sister was a 50/50 related match and I prepared for a haplo transplant. Twice a day for four days I had Total Body Radiation treatment, then three days of the most hard core chemo I had so far – this was the hardest part of my treatment. It took me to the edge and then brought me back.

I was weak, sick and mentally scarred but I survived. I had to wait for 100 days to see if it worked and hopefully return home with my family.

In July 2019 we left Brisbane and finally headed home.

My fiancé was my carer during the whole ordeal and I would not have survived without her. My boys were strong and we are all now back to school and work. I’m getting stronger every week. There are hurdles along the way but I’m slowly getting back to my old self.

I’m on fortnightly blood tests and specialist appointments and I’m seeing a psychologist to help with my fears and trauma I endured.

If not for the doctors and nurses at the RBWH and the Leukaemia Foundation and all their help, I would not be here today. I’m 45, have an amazing family and look forward to after 14 years, finally getting married in March. Leukaemia gives you that kick in the ass you need to stop putting things off!

“I have two healthy sons living full lives”

“I have two healthy sons living full lives”

Koreen’s sons were diagnosed with a blood cancer called leukaemia. The following are Koreen’s words, shared with the Leukaemia Foundation to help raise awareness of blood cancer during September’s Blood Cancer Awareness Month 2019.

I have two sons who were diagnosed with acute lymphoblastic leukaemia (ALL).

My eldest son was two-and-half years old when diagnosed.

Koreen's sonsIt was a very stressful time as I had a four-week-old baby, too, and I was trying to cater for his needs as well as the needs of my eldest.

My eldest did not go into remission as per normal, “slow responder”, so he was bumped to the high risk category [with] very high-dose chemotherapy.

Eventually he responded and, thankfully, a bone marrow transplant was not needed.

Fast track two years, life was back to normal and things were all going well when my baby (who was now three-and-a-half years old) was also diagnosed with ALL.

Thankfully he responded well and was just standard risk but, not to be outdone, he had an anaphylactic reaction to one of the chemo drugs.

Two years later his treatment too came to the end just in time for him to start school.

I now have two very healthy young adult men, 22 years old and a 20-year-old, living full lives. The eldest just graduated from university, studying paramedicine, and is joining the Army as a commando.

My youngest son is joining the Navy. He has had many delays due to medical history but hopefully he is nearly there.

The first doctor told me it was eczema

The first doctor told me it was eczema

Samantha has lived with skin lymphoma since 2012
Samantha has lived with skin lymphoma since 2012

Samantha Mitchell shares her experience living with cutaneous lymphoma, a rare and specific type of non-Hodgkin lymphoma (NHL) where the disease manifests predominantly in the skin.

The following are all Samantha’s words, shared with the Leukaemia Foundation to help raise awareness of blood cancer during September’s Blood Cancer Awareness Month  2019. You can share your story, too, by clicking here.

When were you diagnosed and how did this come about?

I was diagnosed with a type of skin (medical term ‘cutaneous’) lymphoma called Mycosis Fungoides in 2012 after having symptoms for approximately 2 years prior.  I initially started with a lesion on the trunk of my body which slowly spread over time.  Initially, I thought I was having a reaction to something so I started changing washing powders and anything else I thought may have contributed to it.

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

This process went on for about a year as it started off very small and slowly started to spread but I wasn’t too worried about it as it did not affect me in any other way.  I had a career change and became a paramedic in 2011 and got married in 2012.  It was then that I decided to see a doctor to see what could be causing it because at this stage the lesions started to appear on my arms and legs.

I went to a doctor who told me I had eczema, but I walked out of there saying it was wrong and I know my body – it wasn’t that. A couple of weeks later I went to another doctor and asked for a second opinion, telling him what the previous doctor has told me and that I had disagreed. He had a look and referred me to a specialist, a dermatologist which I had to wait eight months to see.

In November 2012, I went in to get my results after having a biopsy of a lesion. Feeling a little nervous but I wasn’t sure what as I’m an optimist. When I went in the specialist was typing away and looked at me and said I had Mycosis Fungoides (MF) then kept typing. After a minute he looked at me again and said do you know what that is and I said ‘no’, he replied with cancer and then kept typing.

Water starting to well in my eyes as I started to think the worst when he saw this, he passed me a box of tissues. He then wrote down the name of it and told me to go home and google it to find out about it.

He then told me that I would need to do phototherapy (use of ultraviolet light to treat skin, also referred to as UVB or UVA) and wanted to take photos of the lesions on my body for research.

How did you react to the diagnosis?

I was shocked as I did not expect that diagnosis at all and upset when I left as I wasn’t told anything about the diagnosis and was left to research it for myself. My husband was very surprised when I told him and speechless. Both my daughters were very young, only four and six years old so I did not tell them at that stage. It was only later in life, as I got older and started asking questions that I explained what I had.

What treatment did you receive?

After my diagnosis, I did phototherapy (UVB) three times a week at the hospital for three years with six monthly blood tests.

What/who has provided encouragement and inspiration to keep going on your journey with lymphoma? 

Reading other people’s journeys of MF has helped me understand that there can be remission for a period of time and that it can be managed effectively. I have also found Cutaneous Lymphoma to be of help with information. The best information/education resource I have come across is a YouTube webinar by Cutaneous Lymphoma Org.

Where are you at now in terms of your illness?

After three years of UVB treatment and steroid creams, the lesions started to disappear, and I was only left with a few small ones.  My family and I moved to Hervey Bay, Queensland and when we were there, I found that no one did phototherapy.  I saw a specialist at Sunshine Coast who had phototherapy but the distance to get there was a round trip of six hours.

My specialist wrote a letter for me to purchase my own home UVB machine, so I purchased a hand-held machine as they are not cheap.  I used this for a while until it got to the stage that I had so many and they were getting bigger that the hand held was not enough.  So, I ended up purchasing a bigger one that was the size of a laptop.  I am still using this now, but I find that it is not as effective as standing in a booth for the size my lesions.

My lesions then got infected and I was on antibiotics for a few months, at one stage they were so sore and moist from infection that I couldn’t even sit at work and had to kneel on the floor.  My work pants would stick to my legs from the moisture of my infections.

After several courses of antibiotics and six weeks of three sessions per week of UVB and UVA, the lesions started to clear though I am still trying to clear several on the tops of my legs.  Unfortunately, due to the distance of travel to have the UVA and UVB I could only take six weeks of three days a week off work and I am now only treating myself at home and driving once a fortnight to the specialist to get an extra power dose of UVB and UVA.

I have found the UVA to be really effective and has assisted with the lesions clearing quicker than if I had only used UVB.

How has your experience with lymphoma changed you? 

Sometimes I feel selfish if I start to get frustrated with it all but then I think of others who are in a worse position and all things that have to go through then it puts everything back into perspective for me. I feel grateful for my health that I have now and think that it could have been worse.

What practical issues were the most difficult after your diagnosis, and how did you deal with these?

Finding the time during work hours to have treatment has been challenging as well as now not having anywhere close to use professional phototherapy. I manage this with using small home units which helps to a degree but definitely has not been as effective as a booth or having UVA regularly.

I have written a letter to the health minister in regard to having a phototherapy unit at the Hervey Bay Hospital as I have come across a lot of other people with eczema and other skin issues who would also benefit. I have not had a response as yet, but I will not give up trying.

Describe the support you have received and how it has helped?

My family have been very supportive, and my husband gives me a gentle push to continue using my phototherapy. There are times when I get tired of the constant treatment three times a week and just don’t want to do it.

Sometimes I have to have a break from it for a couple of months because it can really get to you. You have to schedule in the time to do it and it is a constant for the rest of your life.

Tell us about your favourite interests, hobbies and what you are passionate about? 

I love keeping fit, I ran two half marathons this year and completed the 55km Oxfam Trail Walk in June this year. Prior to this I had only been walking and very short runs to keep fit. I have started mixed aerial which is trick on a hanging hoop and silk. This has been challenging to me but I’m loving it. My family and I often go camping as we love the outdoors and it really helps me to relax. I am passionate about helping people and motivating them to improve themselves and live life to their fullest.

What do you aspire to or hope to achieve in life?

I would love to help spread awareness of Cutaneous Lymphoma as it is a rare disease and I have found out not many people are aware of the disease.

I would love to share my experiences and help spread the word of educational resources to assist others who have the disease so they can gain more of an understanding. I have found that even experts in the field don’t have all the answers and the more that we can share the better.

Do you have any special advice for others who are struggling to cope with a diagnosis of blood cancer?

Take one day at a time and I have found gratitude, I am thankful for everything I have right now.

“I was ready to end it all”

“I was ready to end it all”

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

I was a 28 year old female who was having trouble breathing. Repeated trips to the doctor left me with an asthma diagnosis. I was a nanny to a hematologist and after I told her my symptoms she asked me to get a second opinion.

I went to a chest specialist who did an x-ray, and this found that my lungs were covered. He thought I had pneumonia, so I was put on steriods for 2 weeks.

Jenny
Initially doctors thought Jenny had pneumonia

Another x-ray showed the mass hadn’t moved, so I had a broncoscopy and doctor said it looked like cancer. I had a needle biopsy which was inconclusive, so they had to put me under a general anesthetic and do a full biopsy.

I was admitted into hospital for 10 days and it was busy – discussing chemotherapy, radiation. i was to have 6 rounds of in-hospital chemo, then over 30 rounds of radiation. My hair fell out and I had the worst mouth ulcers.

After all that, I had a stem cell transplant which resulted in a month in hospital, and the worst gastro and vomiting. I was ready to end it all.

I was classified as being in remission for three months when the pain and fevers started again. I had relapsed.

I was told there was a new drug called mabthera which was maybe going to give me a 50% chance of living. If it doesn’t work I was told I would be dead by Christmas. Mabthera was $26 000 and the mater public offered to pay for it. Apart from lowering my blood pressure, the drug had no side effects.

I was told I wouldn’t have kids but now have 13 year old twins. I have been in remission 22 years. Although my health is a bit average, I am grateful to the doctors and nurses for not giving up on me.

I had non-hodgkin lymphoma. The tumor was 14.4cms when they found it. I didn’t smoke or do drugs and I hardly drank and used to run to keep fit.

It just shows that cancer can hit anyone.

Chronic myeloid leukaemia to affect five times as many Australians and take three times as many lives by 2035

Chronic myeloid leukaemia to affect five times as many Australians and take three times as many lives by 2035

Friday September 20 2019
A recent report released by the Leukaemia Foundation has found more than five times as many Australians will be diagnosed with chronic myeloid leukaemia come 2035, and the number of Australians losing their life to the rare blood cancer will more than triple.

The report shows around 380 Australians will be diagnosed with CML this year, but that figure is set to grow significantly in the next 15 years, with more than 2130 Australians expected to be diagnosed with the disease annually come 2035.

Sadly, while 126 people will lose their life to CML in 2019, the report also shows that more than 450 people will lose their fight to the disease in 2035.

Sunday 22 September marks World Chronic Myeloid Leukaemia Day (World CML Day) and the Leukaemia Foundation is casting the spotlight on the staggering new findings of the State of the Nation: Blood Cancer in Australia Report [1]Open this document with ReadSpeaker docReader.

Chronic Myeloid Leukaemia is a type of cancer affecting the blood and bone marrow which develops gradually in early stages and progresses slowly over weeks or months.

The report identified that most people are usually diagnosed with CML when it is in its chronic phase and as a result, treatment is very effective for these patients. However, CML also has the ability to rapidly progress and enter the accelerated phase and eventually the blast phase, in which CML transforms into a disease resembling the more deadly acute myeloid leukaemia (AML) or acute lymphoblastic leukaemia (ALL).

Leukaemia Foundation CEO Bill Petch said the State of the Nation: Blood Cancer in Australia report highlighted the need for Australia to make itself a more attractive clinical trial location and to partner in international research efforts to improve treatment options for CML patients once they enter the blast phase.

“The report found that linking Australian patients into global research initiatives has the potential to accelerate research outcomes while also enabling Australians with blood cancer to access novel therapies,” he said.

“There are currently no available drug therapies for CML patients in Australia once they have entered the final phase of their disease, however we know trials are underway overseas to test the use of a particular drugs to treat these patients.

“What this report tells us is that overcoming barriers to Australia’s participation in these types of trials is essential for new discovery and enabling Australian patients access to these kinds of novel therapies.”

The report shows that less than 20 per cent of Australians living with blood cancer today have participated in a clinical trial, and only 1 in 5 who want to enroll in a clinical trial have access to one.

“Blood cancer is at the forefront of new, precision medicines which have helped improve treatment pathways and survival rates, but we can do better by improving access to clinical trials and new therapies for people living with CML and other blood cancers,” he said.

“The report shows us that we can steer toward a future where no Australian will die from CML.”

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

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

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

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

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

Find more information about CML here and register for the Leukaemia Foundation’s disease specific newsletter CML News here.

  • END –

What is Chronic Myeloid Leukaemia?

  • CML is a type of cancer affecting the blood and bone marrow which develops gradually in early stages and progresses slowly over weeks or months.
  • Most patients are usually diagnosed with CML when it is in its chronic phase and as a result, treatment is very effective for these patients.
  • Over time, CML has been transformed from a life-threatening disease to a manageable chronic condition for most patients involving daily oral drug therapy.
  • CML occurs when the bone marrow produces too many white blood cells which gradually crowd the bone marrow and interfere with normal blood cell production. These cells, also known as leukaemia blasts, also spill out of the bone marrow and circulate around the body in the bloodstream.
  • Because they are not fully mature, the cells are unable to work properly to fight infections.
  • Over time, a shortage of red cells and platelets can cause anaemia, bleeding and bruising.
  • CML has three phases: chronic phase, accelerated phase and blast phase.
  • The chronic phase involves blood counts remaining relatively stable and the proportion of the blast cells in the bone marrow and blood being low. This phase can often last more than five years, and can exceed 10-15 years. Most patients are usually diagnosed with CML when it is in its chronic phase and as a result, treatment is very effective for most patients.
  • The accelerated phase involves CML changing from a relatively stable disease into a more rapidly progressing one, and a proportion of blast cells may start to increase in bone marrow and circulating blood.
  • The blast phase transforms CML into a rapidly progressing disease, involving a dramatic increase in the number of blast cells in the bone marrow and blood. In about two thirds of cases, CML transforms into a disease resembling acute myeloid leukaemia, or – for the remainder of cases – acute lymphoblastic leukaemia.
  • CML can occur at any age but it is more common in adults over the age of 40, who account for nearly 70 per cent of all cases. CML occurs more frequently in men than women and is rarely diagnosed in children.

Signs and symptoms of Chronic Myeloid Leukaemia:

  • Often there aren’t any symptoms in the early stages of CML, and the disease is picked up through a routine blood test.
  • As the disease progresses, symptoms include:
    • Aneamia, which causes persistent tiredness, dizziness, paleness or shortness of breath when physically active (due to a lack of red blood cells)
    • Increased or unexplained bleeding or bruising (due to a very low platelet count)
    • Frequent or repeated infections and slow healing (due to a lack of normal white blood cells)
    • Pain or discomfort under the ribs on the left side (due to an enlarged spleen)
    • Excessive sweating or unintentional weight loss
  • Some of these symptoms are present in viral infections and other illnesses. However it is important to see your doctor for closer examination if you have unusual symptoms or symptoms that persist much longer than expected.

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

  • The number of Australians diagnosed with CML each year will jump from 382 in 2019 to 2133 in 2035.
  • 217 men and 165 women will be diagnosed with CML in 2019. These numbers are expected to grow to 1279 men and 854 women by 2035.
  • It is expected 453 Australians will lose their life to CML in 2035 – compared to 126 Australians expected to lose their life to the disease in 2019.
  • Currently, the five-year-survival rate for CML is 83%
  • CML is one of more than 40 unique leukaemias existing today. Out of the projected 275,000 Australians who will be living with blood cancer by 2035, leukaemias will account for 10,884 cases.

Swab a cheek to save a life, this World Marrow Donor Day

Swab a cheek to save a life, this World Marrow Donor Day

Every year, more than 600 Australians living with blood cancer will need an allogeneic stem cell transplant to survive.

To access that life-saving treatment, some patients will find a stem cell donor within their own family. However, 70 per cent rely on a complete stranger to donate their cells through the Australian Donor Registry.

Currently, the Australian Donor Registry is unable to meet the needs of Australian patients requiring a stem cell transplant with less than 5 per cent of registered Australian donors considered ideal. This means most Australian patients needing a transplant have to look for an overseas donor to be able to receive their vital treatment.

In some cases, patients who have indigenous heritage or are from communities not well represented in international registries, a suitable donor cannot be found.

On the eve of World Marrow Donor Day, the Leukaemia Foundation has joined forces with the Australian Donor Registry to raise awareness of the importance of stem cell donors and to encourage Aussies to help others by ‘swabbing a cheek to save a life’.

Leukaemia Foundation CEO Bill Petch urged all Australians to step up and support the new initiative to help save lives.

“For over 40 years our priority has been to ensure access to treatments, information and supportive care for all Australians affected by blood cancer. We know that if there are more Australian stem cell donors, more people will have the chance to survive their blood cancer,” Mr Petch said.

The Australian Donor Registry has launched a new campaign, Strength to Give, to encourage 5000 young Australian men aged between 18-30 from a diverse group of ethnic backgrounds to register to be a stem cell donor to help meet the growing demand.

Australian Donor Registry CEO Lisa Smith said the organisation was focused on supporting fellow Australians in their time of need and to secure 5000 new Australian stem cell donors would be an incredible start.

“While we welcome all new donors, the reality is younger male donors result in better outcomes for patients and increase their chances of finding the best possible match. Young men make particularly important donors as they often weigh more and therefore literally have more to give,” Ms Smith said.

To register, simply visit https://lf.strengthtogive.org.au/ and register your details and a swab test will be sent to you. Once this is returned, you will be placed on the Australian Bone Marrow Donor Registry.

The Leukaemia Foundation’s recently released State of the Nation: Blood Cancer in Australia report confirmed that every day 41 Australians are diagnosed with blood cancer including leukaemia, lymphoma, myeloma and other blood disorders. Many of these patients will require a blood stem cell transplant from a stranger to be able to conquer their blood cancer.

– END –

What is a Blood Stem Cell Transplant?

A blood stem cell transplant is also known as a bone marrow transplant. This treatment may be recommended for people with blood cancers such as leukaemia, myeloma or lymphoma.

A stem cell transplant replaces blood-forming cells in your bone marrow (including cancer cells) that have been destroyed by chemotherapy or radiation therapy with healthy stem cells. These cells then develop into new bone marrow and produce healthy blood cells.

A blood stem cell transplant can use a patient’s own stem cells (autologous transplantation) or stem cells from a donor (allogeneic transplantation). This can be a complex decision that will depend on several factors, such as your age, the type of cancer you have, the health of your existing bone marrow and your overall health, and any previous chemotherapy treatments.

Who is the Australian Donor Registry?

The Australian Donor Registry is an independent charity, part-funded by the Australian Government to provide hospitals with the ability to search for matching stem cells from unrelated volunteer donors from Australia and around the world.

The chances of finding a match for Australians in need depends on the characteristics of the donors. To find the best possible match, patients need donors from an ethnic background similar to their own. Some Australians will find a matching donor in countries like the UK, US or Europe; for others, a matching donor will only be found in Australia. For more information, please visit https://www.abmdr.org.au/

How do I donate my stem cells?

Cherryl meditates to reduce stress and for her healing

Cherryl meditates to reduce stress and for her healing

Cherryl and her dog, Marley
Cherryl and her dog, Marley

Meditation has “improved my quality of life” says Cherryl Phelps who meditates every day – sometimes two, even three times a day.

“It puts me in a more relaxed state of mind and has definitely improved my stress level,” said Cherryl, 65, of Lismore in northern NSW, who was diagnosed with a blood cancer called myeloma in August 2015.’

Myeloma is a treatable but incurable blood cancer.

Six months later, after lots of different treatments, she had an autologous stem cell transplant (SCT) and it was “a big hurdle to get over and get well after”.

“I looked and felt like an old lady when I came home from hospital,” said Cherryl.

“When I meditate, I specifically concentrate on my healing; it’s not just to relax. It’s to have the mindfulness of my healing.

“Before my diagnosis, I was breaking bones. I had a broken foot, three broken ribs and three broken vertebrae in my back, so I can’t stand or sit for too long,” said Cherryl, so she tends to lie down when she meditates.

Emotional impact of blood cancer

“I let my body sink, just sink, like you’re sinking into this really soft, cotton wool mattress, and you just want to stay there, you’re so light.

“It’s just a really light feeling that you have. Some thoughts do come and go, but mainly it’s just concentrating on something. I try and see a white light when I meditate, and I direct that white light through my body for healing.

“That’s basically what I do,” said Cherryl.

And she recommends meditating “to everybody, because this [having a blood cancer] is a really stressful time, and a very emotional time, especially after a SCT”.

“And when you come home, your family is so good to you, but they don’t understand what you’re actually going through emotionally, and I found that really hard.

“But meditation does help a lot with everything, whether you are sick or well.”

“My husband and I had a marriage breakup and that was more stressful than being diagnosed with cancer,” said Cherryl. “

“My dog, Marley, was my saviour at the time and I love him to bits.”

Healing the mind and body

Several weeks after getting home, following her transplant, Cherryl went to a seminar presented by Dr Ian Gawler in Melbourne, where her youngest son lives.

“He said, ‘Mum, I’ll get the tickets and I’ll take you’, so we both went and that was the start of learning how to meditate,” Cherryl explained.

“I had tried to meditate before, but I couldn’t get the gist of it and I just couldn’t relax enough to feel what I should have been feeling.

“It’s all about the mind – it’s mind/body healing and that’s what I’m mainly focused on.”

No evidence of myeloma

Cherryl has been in remission [no evidence of myeloma] since March this year. She continues to see her haematologist monthly, to have her paraprotein and bloods checked, and to see how she’s going.

“I know I have myeloma*, but I don’t think about having it. I don’t think of myself as being sick – it’s not in my mind,” said Cherryl.

“I feel great, I feel normal, except when my back gets cranky. That’s the only time I start to think about it [myeloma] but I don’t focus on it.

“Life is just the here and the now, one day at a time.

“Whether you’re sick or well we only have today, tomorrow is not promised.”

This story features as part of Blood Cancer Awareness Month 2019, helping to raise awareness of every blood cancer.

Deyan’s last option

Deyan’s last option

Deyan Cashmere and family
Deyan (far left) with his family

When Deyan Cashmere relapsed from blood cancer in February, following a stem cell transplant, his only option was to go to the U.S. for potentially life-saving immunotherapy, at a cost of nearly $1.5 million.

Even though CAR T-cell therapy was approved by the TGA in Australia last December, it is still several months away from being made available to people like Deyan, who’d had an allogeneic transplant from a matched unrelated donor.

And he couldn’t wait that long.

So, in March, Deyan, aged just 20, travelled to Seattle with his parents, Kelly and Bruce Cashmere, to have the procedure where his T-cells are harvested, re-engineered, grown up in large numbers, and given back to him.

It was his first overseas trip.

Blood cancer diagnosis

In the lead up to his blood cancer diagnosis in March last year, and during the series of different treatments he’s since had in Sydney in a bid to gain remission, Deyan has had a tough time.

And in those 12 months, he only got to go home once, when he spent three days at his parent’s wheat property at Hillstone, 680km west of Sydney.

When Deyan was 19, and just months away from completing his welding apprenticeship, he started feeling unusually tired and lethargic. He lost weight rapidly and the bones in his hips and legs ached.

“He’d come home to help with the harvest in November 2017 and felt a bit off,” said Kelly.

“He went to the doctors numerous times and not once did they take a blood test, even though he asked for it,” said Kelly, describing the months that followed, when he was working on another farm.

Then, on March 11 last year, Deyan was rushed to hospital with severe appendicitis.

“They took some blood and found he had leukaemia as well! He had no white blood cells whatsoever,” said his mum, Kelly.

“When they took out his appendix, they didn’t think he was going to make it through the operation because he was so badly infected, and he also had a stroke while he was under the knife.”

That night Deyan was flown to Sydney. He had sepsis “all through his body” and it was “touch and go for the next five days”. He still has a stoma from another operation 10 days later when his bowel burst.

Chemotherapy

It took two months to get Deyan’s infections under control and it was too risky to treat his blood cancer, a type called acute lymphoblastic leukaemia (ALL), so he didn’t start chemotherapy until May.

The first round knocked his ALL down to 70% blasts. But a second, different chemo saw an increase, to 80% blasts. It was the third chemo that got him into remission.

This was followed by three days of full body radiation before his stem cell transplant in October 2018. His donor – one of three potential donors in Australia – lived in Queensland and was a 10 out of 10 match.

Cancer relapse

But six weeks later, the cancer was back in his bloodstream at 0.001% and within another three weeks, it was back up to 100%. Deyan had relapsed. That was on February 4 this year.

“He was told there was nothing else they could do for him and that he had three to six months to live without any further treatment,” said Kelly.

During Deyan’s transplant, she’d read a news article about CAR T-cell therapy in America, which she discussed with his haematologist in October.

“She said ‘yes, we’re looking into that, in about January, if he relapses’. She had a fair idea he was going to relapse,” said Kelly.

The week after Deyan’s relapse, the Cashmeres looked into access to CAR T-cell therapy and fundraising, to pay for it.

“I wrote a letter to Greg Hunt [the Health Minister] in Canberra to say what had happened and that we needed assistance,” said Kelly.

“His secretary sent through a Medical Treatment Overseas Program application. I filled it out and sent it in and we got approved. “

The Medical Treatment Overseas Program provides financial assistance for Australians with a life-threatening medical condition to receive proven life-saving medical treatment overseas where effective treatment is not available in Australia.

“It’s wonderful to have this opportunity. It’s taken the weight off our shoulders,” Kelly explained.

“We would have had to mortgage the farm, and were ready for that,” she said.

“$1 million is a lot of money and we don’t have to worry now about how we pay that back when Deyan gets home.”

In addition to the treatment cost, the Commonwealth government is paying for Deyan and Kelly’s return flights, passports, visas and taxi fares to and from the airport.

One of Deyan’s two sisters, Jenny, set up ‘Deyan’s dash to the USA’ GoFundMe campaign which raised $76,000 in a month.

Kelly said this money would pay for Bruce’s airfares, and accommodation and living expenses for the three of them in Seattle during Deyan’s 12-week CAR T-cell treatment. And to help when they return to Australia. Deyan will spend another three months in Sydney being monitored and having follow-up treatment.

“Whatever is left, we will donate to the Leukaemia Foundation, which has been very generous,” said Kelly.

CAR T-cell therapy

On Friday night, March 1, the Cashmeres received word of Deyan’s eligibility for government funding.

“Deyan’s spirits have picked up since they gave him that option,” said Kelly.

“He’s probably the best he’s ever been in the last 12 months, even though he’s full of cancer.

“He took his diagnosis hard at the start, but he’s willing to keep going. He’s not given up yet.

“He’s looking forward to it [CAR T-cell therapy] actually. He just wants to get over there and get it done,” said Kelly.

Deyan was about to leave for Seattle but his departure was delayed based on the results of his latest bone marrow biopsy. His response to three doses of inotuzumab ozogamicin “to get him overseas” was better than expected.

“It worked too well and knocked out all his cells,” said Kelly.

Deyan needed to have transfusions every couple of days over the following week or two until he was ready to travel.

Extra support

In Sydney, the Leukaemia Foundation provided the Cashmeres with accommodation at Waverton, six kilometres from the hospital where Deyan had appointments, blood transfusions and treatment, mostly as an outpatient.

“If we hadn’t had this free accommodation, it would have been even harder on us,” Kelly said.

“It’s made a huge difference. It’s saved us a lot of money. They’re great little units.”

Kelly said she had adapted well to living in Sydney.

“I’ve had some rough spots, especially when Deyan had his transplant. He was very sick and in a lot of pain all the time. But I got over that hurdle and everything’s been going alright.

“When I get bad news, it hits me for a little while, but I get over it pretty quickly. You just have to keep going.”