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Geoff feels blessed to be on a trial and never wastes a day

Geoff feels blessed to be on a trial and never wastes a day

Geoff and Cathy
Cathy and Geoff Cashman off to have coffee with friends – their last trip in the MG before selling it after 45 years as Geoff can no longer drive.

Geoff Cashman was training for the Whitehaven Beach Ocean Swim in the Whitsundays when he was diagnosed with mantle cell lymphoma (MCL) in November 2015, at the age of 70.

At first, he felt he had overdone things physically, having put in a few days of training in the Airlie Beach Lagoon.

“I was feeling very tired, almost exhausted,” said Geoff, 73, of Adelaide.

He and wife, Cathy, who have a boat and go sailing every year, were aboard their catamaran on the Great Barrier Reef, on their return voyage from Cairns in North Queensland.

Geoff went to see a GP who found a lump on his neck. After a blood test pointed to cancer, he flew to the Gold Coast for further tests, which confirmed he had stage IV MCL.

“When it sunk in that this cancer was terminal, that there were no cures, only drugs to prolong my life, I felt confused, shocked and numb at first,” he said.

“Then I felt angry and a bit depressed. It felt like a giant kick in the guts. I had always been very fit and generally healthy,” said Geoff, who had spent a lot of time sailing, swimming, bike riding and running, prior to his diagnosis.

“While Cathy was very shocked and upset, she was extremely supportive and asked all the important questions of the specialists, when I was still in a state of shock.”

R-CHOP chemotherapy

The Cashmans returned to Adelaide, Geoff saw a haematologist, and he was treated with 10 rounds of R-CHOP, in three-weekly cycles.

“Unfortunately, after finishing this treatment, the MCL got worse with the tumours growing larger,” said Geoff.

His haematologist referred him to Dr Constantine Tam who was heading an investigator-led clinical trial in Melbourne. The Phase III trial was for a combination of two targeted drugs – ibrutinib and venetoclax (also known as ABT-199) – which were expected to have a synergistic effect.

“I went to Melbourne for an interview and tests and was blessed to be subsequently accepted on to the four-year trial, in August 2018,” said Geoff.

Geoff on a boat
Geoff aboard his catamaran. After 10 years cruising the Queensland coast during the winter months, “this might be the last year”.

Being on the trial involves taking the two oral drugs in tablet form daily, flying to Melbourne each month for blood tests and a check-up, and having a cat scan every three months.

“So far, so good,” said Geoff.

“The latest scan, in May 2019, indicates the situation has stabilised and I am now regarded as being in remission.

“People help me, but I believe you have to help yourself.

“It does help to have a very strong and supportive wife who is also particularly patient with my many shortcomings!

“Cathy is my major supporter, keeping me going with the treatment which at times is exhausting and debilitating,” said Geoff, referring to the side-effects of the trial drugs. His main issues are chronic fatigue, nausea and diarrhoea.

“The side-effects are a bummer, but no pain no gain.

“Without the drugs, I’ve been told by the doctors that my health would deteriorate rapidly.”

Cancer-related fatigue

Although Geoff was “reasonably thin” before his diagnosis, he has since lost some weight, mainly muscle.

“I have lost my appetite and struggle to keep weight on and as a result I am significantly weaker and have a lot less energy, with constant fatigue,” he explained.

“This has curtailed my physical activities significantly and I am not able to compete in sailing competitions, triathlons and swimming events as I did before the cancer.

“I now spend a significant amount of time reading books, watching sport and having long coffee sessions with friends.”

Cathy said Geoff was blessed with many friends – “old school chums, work mates, sailors, swimmers, cyclists and triathletes who would walk over hot coals for him”.

“Most people didn’t believe Geoff would get cancer, with his healthy lifestyle, diet and stress-free attitude,” said Cathy.

“Chemo hair loss helped people accept his diagnosis. And his current super skinny appearance has made people bring cakes to coffee, to fatten him up!”

Staying positive after cancer

Geoff said he has trouble concentrating and focusing, so no longer drives and recently he had to sell his beloved MG sports car.

“Emotionally, I feel I am a lot more tolerant towards people with health issues,” said Geoff. “Mentally, I sometimes lack clarity of thought and my memory can be terrible, but I don’t worry because there is no point.

“Spiritually, I find walking on the beach in the morning uplifting.

“I have done some meditation and find it very helpful to remain calm and have a positive attitude.

“I know I have only got a limited time and I feel it is important to just get on with my life, to be happy and enjoy each day, and not to sweat the small stuff,” said Geoff, who was looking forward to his pea and ham soup for tea.

He eats simple foods to minimise nausea, sees friends, fixes “stuff” on the boat, sits in the sun and takes up opportunities to help others less fortunate than him.

“I never waste a day but then I never have.

“Life is precious. Enjoy every day and don’t let cancer drugs, doctors, or anyone claim your soul and destroy your love of life.

“I am lucky enough to have been sailing up in north Queensland for the past 10 years. Although I am limited as a result of my cancer, in long voyages, I am still enjoying pottering around the Gold Coast and Moreton Bay,” said Geoff.

This is where the Cashmans were when they spoke to Lymphoma News. They are due back in Adelaide in late-November.

“This might be the last year. It’s getting hard to manage the boat,” said Geoff.

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

Feeling the physical, emotional and financial effects

Feeling the physical, emotional and financial effects

Belinda and John-Michael Barrie stand outside in a garden, smiling
Belinda and John stayed in a Leukaemia Foundation accommodation centre for six months during John’s treatment.

Since being diagnosed with blood cancer, John-Michael Barrie and his wife, Belinda, have felt not only the physical effects of this disease, but also the emotional and financial effects.

When John and Belinda married in 2008 they had no idea how their future would unfold.

Two years later, John felt a lump on his chest and after investigation was diagnosed with a blood cancer called lymphoma.

The couple had just bought a house in Brisbane and they were forced to sell it when John began treatment and Belinda became his full-time carer.

John had an autologous stem cell transplant but it was unsuccessful and he relapsed.

Without a home they stayed at a Leukaemia Foundation accommodation centre for six months, which Belinda described as ”saving us from financial ruin”.

“While we were staying at the house a Christmas hamper from the Leukaemia Foundation was delivered that allowed us to have a lovely Christmas day with our family at a time when funds were very short,” Belinda said.

“It is these beautiful gestures of support that made us feel like we were not going through this terrible time alone.”

Stem cell donor

Soon after a compatible stem cell donor for John was found and he travelled to and from the Royal Brisbane and Women’s Hospital with Belinda to embark on another stem cell transplant.

During that time John was able to access his life insurance through the terminal illness component, and the couple was able to buy a house in the rural town of Lockrose in the Lockyer Valley.

Belinda said the chemotherapy and two stem cell transplants were absolutely gruelling and there were times that she nearly lost John, but he got through it.

Graft Versus Host Disease

While John is now lymphoma free, he has developed chronic Graft Versus Host Disease (GVHD) in the form of severe scleroderma, which has no cure.

“We had hoped that our lives would be back to some kind of normal but the GVHD has meant John’s health is far from good,” Belinda said.

“Throughout all of this we have been so grateful for emotional and financial support from the Leukaemia Foundation. I don’t know what we would have done without it.

“The impact of being diagnosed with a blood cancer is not only physically felt by the patient but it also affects finances, and the health and emotional well-being of the carer.”

The couple wanted to find a way of saying thank you and so they organised a gift in their Will.

“Updating our Wills gave us the perfect opportunity to include a gift to the Leukaemia Foundation. It was a great way of ensuring other patients in the future will have access to the same support we’ve had,” Belinda said.

“The financial impact of us not being able to work meant it was impossible for us to support the Foundation financially – so a gift in Will was the perfect solution.”

In remission after seeking second opinion

In remission after seeking second opinion

Carole Bartlett at work in a lab
Carole initially had minor symptoms before being diagnosed with amyloidosis.

Carole Bartlett chose not to ‘watch and wait’, as suggested by a renal specialist in hometown Perth, after being diagnosed “very early” with a blood disease.

“I was very nervous about waiting,” said Carole, 64, a research assistant at the University of Western Australia (UWA).

So she travelled across Australia for further tests and advice that suggested having a stem cell transplant as soon as possible.

Her symptoms were minor – changes in her hair and nails, feeling more tired than normal, some weakness in her arms, and losing a bit of weight – “not something I’d go to the doctor for on their own”.

Carole’s diagnosis took eight months and began when her GP noticed changes to her cholesterol and albumin from regular blood tests taken to monitor menopause. When urine tests showed Carole’s protein was higher than normal, she was referred to a renal specialist who did a free light-chain test.

“It came back positive for paraprotein, then a kidney biopsy showed amyloid in the kidneys,” said Carole.

Bone marrow biopsy

Next, she saw a haematologist and had a bone marrow biopsy. A clone of cells producing excess levels of lambda free light-chains confirmed a rare blood disease called AL amyloidosis.

“It’s important to know what kind of amyloid you are dealing with and I’d been picked up pretty early which is unusual,” said Carole.

“Being in medical research, I wanted to find out as much as possible about the disease, and I have access to research journals and scientific papers, which I delved into.

“Initially, I was shocked. A lot of articles said prognosis was very poor but the more I read, I realised… that’s not the case for everybody. There are people who are picked up earlier, and the message – ‘early diagnosis and early treatment resulted in the best outcomes’ – came out again and again.

“This reassured me, but at the same time my renal physician was saying we’d just watch and wait and see what my protein levels did.

“I’d been handed back to the renal physician for treatment and it seemed he was waiting for my kidneys to get significantly worse before doing anything.

“He talked about eventually going on to chemotherapy but I couldn’t see the point of waiting and didn’t have a lot of confidence in this approach,” said Carole, and she was concerned about having a blood disease but not being treated by a haematologist.

“After my diagnosis, I contacted the Leukaemia Foundation and was put in touch with a patient advocate in Brisbane who specialised in support for people with this disease.

“She became my life jacket, keeping my head above the water. She was always at the end of the phone line, gave me family counselling, information and perspective. In fact, she completely changed my life.

“She also put me in touch with my local Leukaemia Foundation office and another patient in Perth who I started meeting up with for coffee and a chat. He was very supportive in terms of telling me what he’d been through.

“The most important thing to me was to make a decision about treatment,” said Carole, who was becoming increasingly concerned as her monthly renal tests showed her kidney function was dropping.

“Things were getting worse but no treatment was being instigated.

“A problem with amyloidosis is that it is a rare disease and not all doctors are up to speed with current developments. Getting to see the right people is very important.

“I knew there was a specialist amyloidosis clinic at the Princess Alexandra Hospital in Brisbane and asked my GP for a referral to go there for a second opinion,” she said.

Amyloidosis tests

In November, she made the trip to Brisbane. More tests confirmed her diagnosis and she saw three different amyloidosis specialists.

“They said they would get me straight on a stem cell transplant regimen because I was young enough, healthy enough and that was the best option for me. I felt empowered by that,” said Carole.

Back in Perth, she set the wheels in motion. She got a referral to a haematologist she’d heard was running a clinical trial for an amyloidosis treatment, and contacted him personally, asking his advice and opinions.

“He agreed I should get treatment as soon as possible and felt I was a good candidate for a SCT. The trial was not my best option as it was randomised; with only a 50% chance of getting the new drug combination.”

Starting chemotherapy

On Boxing Day 2011, Carole started chemotherapy – three rounds of cyclophosphamide, dexamethasone and thalidomide over nine weeks. After a break, her stem cells were harvested and she had an autologous stem cell transplant on 15 April 2012.

Her husband, Peter, took charge of the home environment and cooking, drawing up a menu of sterile meals for when she was neutropenic.

“We were anal about cleanliness, knowing the main problem was infection post transplant. We changed sheets, towels and pajamas and wiped down surfaces with alcohol, initially every day.

“I remained infection-free, so it was worth it,” said Carole.

Returning to work after treatment

She returned to work in July 2012, has since “got better and better”.

“It took a while for the free light-chain levels to come down and they are now in the normal range. My kidney function has improved over the years, but is still not quite normal,” said Carole.

Her life though is back to normal.

“I really enjoy my work, being with friends, getting out and walking, cooking, photography and spending time with my family.”

She has three grown children, recently became a grandmother and hopes to retire at the end of next year.

Amyloidosis story

Having amyloidosis has changed Carole’s outlook on life.

“I’m really grateful to be where I am. Even when things are a bit tough, I’m grateful to be here to experience them. It could have been a very different story.

“I look at the positive side of any situation and I don’t like to waste time. I appreciate that time is short, so you have to make the most of every day.”

‘Total blinking shock’ of leukaemia

‘Total blinking shock’ of leukaemia

Les Sprague at Lake Eyre after finishing his blood cancer treatment
Les Sprague at Lake Eyre after finishing his blood cancer treatment

It was during a Saturday afternoon snooze when Les Sprague, 71, got a phone call and the “total blinking shock” of being told he could have leukaemia.

He had been only weeks away from heading off to Vietnam with his wife, Paula, when he was overcome with a feeling of “absolute tiredness”. He had nosebleeds, hot flushes and was losing weight as well.

“I felt pretty exhausted the whole time and couldn’t understand why,” said Les, a visual artist, now aged 75.

“Obviously I couldn’t go to Vietnam. I had to do something.”

Thinking it was a passing virus Les had a blood test on a Friday.

Leukaemia diagnosis

“To my horror, a pathologist rang from Melbourne the next afternoon while I was lying down.

“He said ‘you’ve got some very low blood counts and better get to the emergency department. It looks like you’ve got leukaemia.

“‘Get an ambulance, you can’t drive’, he said, in case I had an accident because any sort of bleeding could be dangerous,” explained Les, who lives on a small farm on the edge of the forest at Enfield, near Ballarat (VIC).

“I drove. It was only 25km. I was terribly upset and when I rang my wife who was coming home from a work event, I could hardly even breathe the word ‘leukaemia’ because I knew what leukaemia was.”

Les spent that night in hospital at Ballarat and the next day was transferred by ambulance to a Melbourne hospital. After a range of diagnostic and stress tests, he was told ‘if we don’t do anything, you’ve got a life expectancy of two to three weeks!’.

“The haematologist also said, ‘let’s hope and pray you’ve got inversion 16’, which meant nothing to me at the time. It’s a chromosomal thing, which means you respond to a certain cytotoxic drug and that’s a good thing, and miraculously that’s what I had,” said Les.

“Those first hours and days were totally disorientating and de-stabilising. There was shock and also the understanding that my death would mean the tragic loss of the relationship between my wife and I.”

Dealing with treatment

Paula immediately took time off work as a teacher to be with Les “for as long as it took” which turned out to be four months, and the Spragues remained in Melbourne while Les had four cycles of intensive treatment.

“As we lived way up in the provinces, we were hardly likely to go back and forwards to Melbourne every day,” said Les.

“Paula was put in touch with the Leukaemia Foundation and they quickly found a unit and made that available to us for the entire time of my treatment.

“It was a haven. Paula would go home at the end of each day and just collapse. It was very unsettling for her to have me with such a debilitating disease so suddenly,” he said.

“The unit was comfortable, close, and I was able to go there between cycles of chemotherapy, to recover before going back to hospital.”

Despite his fitness, and being told he had the body of a 60-65 year old, Les was too old to have a stem cell transplant. So his haematologist advised that Les was to get ‘the strongest dose without actually killing him’.

“And it worked,” said Les.

“The first treatment nearly killed me and was terribly painful – it was touch and go.”

Les believes he survived acute myeloid leukaemia by finding out everything he could about his blood cancer and not “feeling like a victim”.

“I saw people lying in hospital passively copping whatever was going to be given to them, and we didn’t do that. We got ourselves in a position where we could be active members of the team treating this thing.

“I made sure I knew the names of all the nurses, the registrars, the cleaners, everyone who had anything to do with us and that made it easier for them to see me not just as a patient but as a person,” said Les.

During his second cycle of chemotherapy, Les got a serious infection. Initially thought to be a haemorrhoid, it turned out to be an infection in his blood, from his bowel, because his immune system had failed.

“It was my insistence and Paula’s that they properly diagnose this and I think that turned the corner for me and helped save my life. I had to have surgery to fix it.

“I was as weak as a kitten during treatment but luckily I keep pretty fit and that was important, but there were days when I thought, nah, I’m not going to get through this,” said Les.

Life after cancer

He finished his treatment and went home in July 2014.

“I’ve had no more chemo or anything since then. Just close surveillance,” said Les, who has got on with his life, continuing his work as an artist along with the “millions of jobs that have to be done even on a small farm”.

“The Leukaemia Foundation was so good to us,” said Les.

“I thought it would be good to do something for them and to raise awareness of what the Leukaemia Foundation does for people, particularly in regional Australia, to make their treatment more palatable or easier.

“I’m an artist and people like art. We decided to say ‘thank you’ in a way that meant something to us.”

Les held a sell-out exhibition of his drawings, paintings, etchings and photographs, predominantly of the outback and covering his work over 30 years. He also published a calendar, with help from a team of enthusiastic supporters, and the Spragues donated a generous percentage of sales from both to the Leukaemia Foundation.

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

Talking humanity in healthcare with David Joske

Talking humanity in healthcare with David Joske

Professor David Joske
Professor David Joske

As significant progress was made in blood cancer research, Professor David Joske became concerned a decreasing focus on the ‘patient experience’ meant the humanity in healthcare was being left behind.

Dr Joske has dedicated 20 years to humanising the treatment journey for Australians with blood cancer.

It began with his observation as a young consultant in the mid-90s at Sir Charles Gairdner Hospital (Perth) that “we were making a meal of this business of managing people with cancer”.

“I witnessed a lot of distress with delays with appointments and poor communication,” he said.

“My colleagues and those in nursing felt we were getting less and less time with our patients. We couldn’t express that we cared for them… we tended to make people feel they were on a production line.

“I have pretty much dedicated my whole professional life since then to trying to find ways to improve the cancer journey.”

A chance comment from a patient in 1998 prompted Dr Joske to challenge the status quo; to embrace a more personal, open-minded approach to care.

“A lot of my patients were trying complementary and alternative therapies but felt they couldn’t discuss them with their medical team,” explained Dr Joske.

“This wasn’t acceptable and created a barrier between me and my patients. I needed to become a doctor who showed an open mind on this.”

Reading up on an area traditionally rejected by modern medicine, Dr Joske found more evidence than he expected in the field of complementary therapies.

Not complementary medicines (herbs and supplements) which Dr Joske believes are “best avoided in mainstream treatment” but diet, stress and exercise, which he said are “terribly important”.

Developing a new approach to mainstream care

The chance came to develop and introduce a new approach to mainstream care with the opening in 2001 of the Cancer Support Centre at Sir Charles Gairdner Hospital with:

  • A quiet meeting place where volunteers from all walks of life assist with patient queries.
  • Information and resources for patients on support services, like those provided by the Leukaemia Foundation.
  • A range of safe and supervised complementary therapies, “that major medicine had rejected for thousands of years”, including acupuncture, yoga, music therapy, massage, reflexology, aromatherapy, Qigong, craniological massage and hands-off massage techniques.

The therapies were not only offered to patients, the effects were measured because there was a lot of push back and scepticism.

“The best answer was to gather as much evidence as possible,” said Dr Joske.

“Even the most sceptical general practitioners will respond to good quality evidence if you can provide it.”

There is a huge demand for these complimentary services. The centre sees 100-150 people each week and as it grew and research progressed, it became Solaris Cancer Care in 2006, then the Cancer Support Association with an off-health campus facility where the focus is on survivorship initiatives.

Traditional treatments remain essential

While Dr Joske is a big advocate for complementary therapies, he acknowledges that traditional treatments like chemotherapy are an essential part of a patient’s treatment journey.

“I regard chemotherapy, which is still the main part of most people’s initial treatment, as an investment, like a bank loan,” he said.

“It’s a long-term investment and you make the investment in terms of the short-term costs; feeling crappy, needles, drips, blood tests, and all the visits to hospital.

“But the return on investment can be life itself… so the short-term all-in cost on the immune system is well worth it.”

Dr Joske said the key to surviving and thriving through a diagnosis is the patient realising they have the right to manage their cancer in a way that is best for them.

Lifestyle management of cancer

“As I’ve matured as a consultant with the grey hair, I’ve come to see this topic as the lifestyle management of your cancer. I talk to people under my care with a very open mind on what they want to try,” said Dr Joske.

“We’re going to improve cure and remission rates, but there’s always that personal experience: the worst day of your life where you’re told you have cancer.

“You have to get your head around your life changing forever, then come up with how you’re going to manage your situation.”

The right exercise prescription

Dr Joske’s most important advice is to exercise.

“In the bad old days we told cancer patients when they felt tired during treatment, they needed to rest. Turns out that was not good advice,” he said.

“Then we went through a phase of telling people to go on walks. Turned out that wasn’t going to cut the mustard either.

“What’s needed is some resistance exercise as well, because cancer drugs and steroids tend to dissolve muscle and the only way to get muscle back or to maintain it is to use it,” explained Dr Joske.

“I’ve had patients several years out from their chemotherapy who still feel exhausted. Then, when you give them the right exercise prescription with some light weights and a gym program, within 4-6 weeks they start feeling like their old selves again.”

Watch the below video of Professor David Joske’s presentation on Humanity in Healthcare at the Leukaemia Foundation’s National Blood Cancer Conference (Melbourne, September 2018):

The mind/body connection in healing

The mind/body connection in healing

Fourteen years ago, when Dr Louella Crawford was being treated for Stage III breast cancer, she had a “full frontal” realisation – the mind plays an enormous role in your health.

She started to meditate, to have massages, and embarked on more study – enrolling in an arts degree majoring in philosophy of the mind and an advanced diploma in holistic counselling and psychotherapy.

Dr Louella Crawford
Dr Louella Crawford

“Fascinated by how the mind is involved in health, I began reading widely on everything I could get my hands on to do with psychology, the role of religion in health, spirituality, quantum physics, physics, quantum biology, neurobiology, neuroplasticity, neuroscience, psychoneuroimmunology, and epigenetics,” said Dr Crawford.

“Medicine is very objective. It’s about fixing things that can be measured and observed and is pharmacologically focused.

“Few doctors have the time to really inquire about what’s happening more broadly in a patient’s life… how is it for you, what is happening at home, what’s going on? And by and large they don’t recognise that stress, or more importantly how one deals with the vagaries of being human and having human experiences – good or bad – affects health. That is changing, but very slowly.

“I was looking for a bridge that spoke the language of science (medicine) and the wonderful and complex story of a person’s inner life… for want of a better word, ‘The Spirit’,” said Dr Crawford.

Evidence-based studies on the benefits of meditation

“Some interested scientists and doctors decided there was something to meditation but realised no one would take an eastern spiritual practice seriously unless there were some tangible studies.”

According to Dr Crawford, there are now thousands of “good studies” on the effects of meditation on all kinds of people, from beginner meditators to Buddhist monks and nuns. Using fMRI machines that look at functional brain anatomy, and EEGs (electroencephalography), measuring brain waves, they have found definitively that meditation changes the brain.

“What these studies show is that meditation, and as little as 10 minutes a day for three weeks, actually changes a lot of parameters physiologically including the way your brain functions1,” she said.

Meditation has been proven to reduce depression and anxiety, and increase empathy, compassion and meaning in life. It increases the depth of grey matter and changes brain waves, increasing coherence. It also increases high-level thinking and the capacity to focus.

“We all have cancer from time to time; cancer cells rise up and fall away. They disappear because our immune system is functioning well,” said Dr Crawford.

Meditation boosts your immune system

“I think what is interesting and important for people who have a cancer, is that meditation actually changes your immune system and been found to increase the number of natural T-killer cells (a type of white blood cell) and one of their functions is to mop up metastatic cancer.

“Meditation also reduces inflammation and there’s a lot of science indicating inflammation is possibly the underlying pathogenesis (development) of many illnesses including cancer, Alzheimer’s and heart disease.

“Meditation also reduces pulse rate and blood pressure, and a small but good study of Afro-Americans practising transcendental meditation showed it reduced the incidence of heart attack and stroke by 30%.

“So here we have a practice that is not only free, it has no side-effects, and as a medication, it does an enormous amount of good,” said Dr Crawford.

“If meditation was a drug, you’d have pharmaceutical companies falling over each other trying to get it to market.”

Stress reduces and meditation increases telomerase levels

In 2009, Tasmanian-born Elizabeth Blackburn won a Nobel Prize for discovering an enzyme, called telomerase, that repairs the telomeres2 on the ends of DNA. As we age, our telomeres shorten.

Prof. Blackburn teamed up with psychiatrist, Elissa Epel, who had a theory that stress might have a role in reducing the level of telomerase. Together, they designed a study showing that stress actually did reduce the level of telomerase, which Dr Crawford described as “paradigm changing”.

“Not content with this, they then decided to see if reducing stress via meditation actually increased telomerase levels. They looked at two groups of people – those who meditated and those who didn’t,” said Dr Crawford.

“The results were stunning. Not only did meditation increase telomerase levels, it also reduced neuroticism (the propensity to worry constantly), increased mindfulness (living in the present moment; a very spiritual attribute) and increased one’s sense of meaning in life. Meaning4 can be the simplest moment or action in life; something that gives a person a reason to go on despite the most terrible circumstances.

“What was even more extraordinary was that the increased levels of telomerase were purely and directly related to an increased sense of meaning in life. In other words, having a sense of meaning in life increases the repair of our DNA.

“To me this is an absolutely extraordinary and significant study3 that directly links the qualitative spiritual value of our inner world with our objective measurable physiology.

“How wonderful would it be to combine and marry treatment of our measurable physical problems with understanding and caring for our amazing complex inner worlds? The best of everything… that’s the way forward. It’s not an either/or thing,” said Dr Crawford.

Positive psychology, resilience and spontaneous remission

More than 20 years ago, in the U.S., Marc Barasch and Caryle Hirschberg5, were fascinated by the concept of spontaneous remission from cancer; when someone outlives a dire cancer diagnosis by many, many years or completely recovers.

Their study on spontaneous remission found a series of human qualities, including resilience, termed ‘hardiness’ in 1979 by Suzanne Kobasa, one of the first people to look at positive psychology. These qualities enabled people to respond appropriately and cope under stress.

They had a sense of control about how they responded to a situation (different to being a control freak); they lived wholehearted lives (they had spiritual qualities like gratitude, forgiveness, living in the present moment, a sense of awe); they had a sense of meaning in life, and they had a sense of not feeling alone… in other words, they felt connected to something, be it friends, family, animals, the divine, or even nature.

“What I find fascinating,” said Dr Crawford, “is the huge crossover here between the study of positive psychology and resilience, and what they found in spontaneous remission in cancer”.

Dr Crawford now works as a GP concentrating on mind/body medicine through the practise of ‘process work’6 – a form of psychotherapy that sprang from Carl Jung’s work and believes the mind and body are not separate, but simply different sides of the same coin.

“The more I practise, the more I absolutely know this to be true… the mind and the body are completely in sync. Obviously, it’s also what you eat, whether you exercise and what genetic predispositions you have.

Epigenetics and our DNA

“I focus on trying to speak the language of science and there is now an overwhelming number of studies in the area of psychoneuroimmunology that joins up psychology, the immune system and neurology, as well as epigenetics that says genes aren’t the only things that determine people’s health.

“Bruce Lipton7, one of the pioneers of epigenetics, says our beliefs, thoughts and feelings are entwined and affect the expression of our DNA.

“Epigenetics teaches that the DNA is like a set of architect’s plans that needs a builder to decide which parts of the plans to implement. This is incredibly empowering, to think that we may have some input or control over the expression of our DNA,” said Dr Crawford.

“Epigenetics is a burgeoning field that needs to be incorporated into medicine. It explains and looks at how we interact with our environment on every level, including nutrition, exercise, thoughts, beliefs and feelings, and how these affect the expression of our DNA.

“Nothing is the complete answer… it’s a very broad collection of a whole lot of things.

“In my practice, I advise people to meditate, but you’ve got to do the work on the stuff that you bring with you, and we’ve all got it – baggage.

“I have lots of anecdotes about people who changed how they viewed the world and how they existed within the world and environment, and it made a dramatic difference to both their psychological wellbeing and health.

Louella’s personal experience with cancer

“For me, it took the drama of being diagnosed with cancer before I thought – what’s going on here?

“I felt very grief-stricken on a whole series of levels. I’d get in the shower every morning because it was the only place I could cry without upsetting my children and husband.

“I was lucky. Friends gave me interesting books such as The Tibetan Book of Living and Dying8 and intriguing books on the mysteries of quantum physics. These stimulated my interest in areas of thought I never knew existed and began my quest into understanding the mysteries of our minds.

Finding peace enables healing

“However, it’s those hidden emotions – sadness, grief, anger, powerlessness, etc., and their expression that is the beginning of what is not an easy journey, but one that is so important to take… to find the peace that, at the end of the day, is all any of us wants. It is my belief that it is this peace that also allows our physical body to function and heal as best it can.

“I began to listen to myself and to my intuition, and to do what did and didn’t feel right for me. I learnt to say “no”. This is not being selfish, as we so often think – it’s about self-care.

“Before cancer, I always did what other people wanted me to do. I was completely disconnected to my own inner world and never listened to what I wanted or what I felt.

“I went into my healing space, and if people rang me and said, ‘can I come and visit you?’, I’d think to myself, I don’t have to say ‘yes’ to this, so I could say ‘no’ without guilt. And it was like – oh my god, this is so fabulous. I’d never realised you could say ‘no’ and it felt so good.

“Of course, this was my journey. Everyone has a different path to travel but whatever it is, it’s important.

“The difference between me now, and 14 years ago, is the awareness I have about my mind.

“In my practice, I teach three things that you need:

1. Awareness about how you exist in the world (this is where my practise as a psychotherapist is enormously helpful)

2. A will to want to change, and

3. You’ve got to practise it.

“Practise is what changes your brain and your physiology.

“In my view, how we exist within and respond to our world and environment, and how we incorporate every aspect of our mental and physical worlds, including our genetic makeup, nutrition and exercise, is what determines our health.

“And that is what science is starting to tell us. This is a truly holistic approach to living a long, healthy and happy life.”

Here are some mindful meditations – simple guided exercises – for people with cancer.

Local legacy to help fund blood cancer researchers of tomorrow

Local legacy to help fund blood cancer researchers of tomorrow

A generous legacy by the family of a Cleveland local will help the Leukaemia Foundation support the next generation of Australian blood cancer researchers.

Cor Frederik (10.9.1927 – 25.9.2017) was businessman, scholar, author, investor, art collector and company director with a flourishing accounting practice in Cleveland, a sea-side suburb of Brisbane. Father to six children, Cor was a strong, giving man with an altruistic heart. He believed in giving back to the community and the power of education – values he instilled in his children.

Cor lost his wife of 15 years, Pauline to blood cancer at just 33 – leaving him to raise five young children between the ages of 3-14 years old. In 2006 he established the Frederiks Foundation, and when he passed away in 2017 his children came together to honour his lifelong ethos to give generously to those less fortunate.

The family has dedicated $530,000 to the Leukaemia Foundation’s Research Endowment to support PhD Scholarships for some of Australia’s brightest blood cancer minds.

Leukaemia Foundation CEO Bill Petch said this is an extraordinary investment in the future of blood cancer research in Australia. “It will give early career researchers the encouragement, resources and networks to generate new ideas and approaches for tackling blood cancers,” he said.

These scholarships will be delivered in partnership with the Haematology Society of Australia and New Zealand (HSANZ) – the peak body for haematology researchers and medical professionals. The HSANZ PhD scholarship program is part of the Leukaemia Foundation’s $50 million National Research Program.

Cor’s son Paul Frederiks said his father would be proud to see the money invested so wisely for a cause so close to the heart of his family.

“Dad was incredibly hardworking and never stopped learning– he worked and studied right up until his death. He truly believed in the power of education, and we wanted to honour that with this gift,” Paul said.

“Losing our mother to blood cancer at such a young age had a profound impact on all of us kids – it changed so much in our lives then and definitely influenced how we grew up and who we became.

“Donating to the Leukaemia Foundation is ensuring our mum’s legacy, and supporting the training and education of blood cancer researchers is ensuring our dad’s.

“If the advances in research we have seen in the last 30 years were around when mum was diagnosed, maybe she would be with us, or maybe she would have lived longer.

“I think dad would have been very proud of our decision to support this worthy cause.”

To find out more about supporting the Leukaemia Foundation’s National Research Program 1800 500 088 or email supporters@www.leukaemia.org.au.

Leukaemia Foundation to support award for world leading haematologists

Leukaemia Foundation to support award for world leading haematologists

Two world leaders in haematology will receive awards supported by the Leukaemia Foundation at this year’s International Society of Experimental Haematology Honorific (ISEH) meeting this week.

Dr David Scadden and Dr David Traver will be presented at ISEH’s Annual Scientific Meeting to be held in Brisbane from August 22-25, where the world’s leading experts will gather to explore the latest advancements in haematological research and medicines.

“Dr Scadden will receive the Donald Metcalf Award. This prestigious award was established 20 years ago in honor of Professor Donald Metcalf, the Australian medical researcher regarded as ‘the father of modern hematology’ for his pioneering work on the control of blood cell formation,” Leukaemia Foundation CEO Bill Petch said.

Dr Scadden’s fundamental contributions in hematology and stem cell biology comes from his work in defining the adult hematopoietic stem cells (HSCs) regulatory niche within the bone marrow microenvironment, and its relevance to the onset and treatment of blood cancers.

Dr Scadden holds several positions in the wider academic haematology community and is a Professor of Medicine at Harvard Medical School and a Professor of Stem Cell and Regenerative Biology at Harvard University.

Mr Petch said Dr Scadden was a world-leading pioneer of haematological science and his work had paved the way for stem cell research and blood cancers across the globe.

“Dr Scadden’s group demonstrated that disturbances in the bone marrow microenvironment could drive the emergence of myeloid leukaemia, and more recently, that the leukaemic cells themselves continually reshape the niche to support their survival and expansion,” Mr Petch said.

“Understanding how myeloid leukaemia cells survive and grow within the stem cell niche will help inform the development of treatments to target these cells.”

Fellow award recipient, Dr David Traver, who is a professor of Cellular and Molecular Medicine and Cell Developmental Biology at the University of California, will be awarded the McCulloch and Till Award, which recognises early- to-mid-career scientists who have made a substantial impact in the field of haematology.

Dr Traver’s laboratory group identified several key regulatory factors that control the specification and production of HSCs (Haematopoietic Stem Cells), helping to provide answers to many long-standing questions about how HSCs generate.

Mr Petch said the awards recognised the contributions both scientists had made to advancements in haematological medicines.

“It’s an honor to be able to recognise the work of these world leading researchers whose careers have been dedicated to helping pioneer breakthroughs into blood cancers.

Dr Scadden will give the opening address – the Donald Metcalf Award Lecture – at the ISEH conference on August 22 and Dr Traver will close the conference with the McCulloch & Till Award Lecture: Decoding the molecular cues that regulate HSC specification on August 25.

Many Australian clinicians and researchers are presenting at the meeting in Brisbane, including Professor Andrew Roberts, Prof. Mark Dawson, Assoc. Prof. Steven Lane, Assoc. Prof. Andrew Wei, Assoc. Prof. Carl Walkley, Assoc. Prof. Louise Purton, and Dr Gemma Kelly.

Million-dollar investment into incurable blood cancer announced as Light the Night launches this week

Million-dollar investment into incurable blood cancer announced as Light the Night launches this week

The Leukaemia Foundation will unveil a million-dollar investment into Strategic Ecosystem Research Partnership (SERP) grants which will use new state-of-the-art immunotherapy techniques, new drug design and molecular technology to understand the mechanisms of relapse and continue to drive rapid advancements in treatments for the incurable blood cancer, myeloma.

The new funding announcement comes as the Leukaemia Foundation opens registrations for this year’s Light the Night. More than 35,000 Australians affected by blood cancer will come together at Light the Night events across the country to support each other, shining a light on the impact of the disease in Australia.

Myeloma, also known as multiple myeloma, affects more than 140,000 people worldwide each year. Over 2000 Australians will be diagnosed with myeloma in 2019, and it accounts for 20% of all blood cancer related deaths.

In recent years, a large number of new drugs have been developed to treat myeloma, which has seen patients living longer without evidence of disease. Unfortunately, despite these improvements, essentially all myeloma patients will eventually stop responding to therapy and will experience relapse.

Leukaemia Foundation CEO Bill Petch said the Leukaemia Foundation was committed to changing these statistics.

“We are committed to helping to further improve treatments and survivability of myeloma and all blood cancers. With funds raised through events like Light the Night, we will continue to invest in the most innovative research projects with the strongest potential.”

“Continued investment in these projects and these researchers is the key to ensure advancements are funded and are able to reach their full potential to improve the lives of people living with this disease, not just in Australia but across the world,” Mr Petch said.

Myeloma is a cancer of the plasma cells. Plasma cells are mature lymphocytes (a type of white blood cell) that help fight infection by producing special proteins known as antibodies or immunoglobulins. Immunoglobulins (Ig) are produced by plasma cells in response to bacteria, viruses and other harmful substances found in the body.

Myeloma develops when plasma cells undergo a cancerous or malignant change and become myeloma cells. These myeloma cells multiply without any proper order and accumulate in the bone marrow in different parts of the skeleton I.e. spine, skull, pelvis, ribcage.

Myeloma is just one of many blood cancers. To show your support and continue to raise funds for ground-breaking research such as the SERP grants, please register your interest at www.lightthenight.org.au.

“Blood cancer doesn’t discriminate. It affects men, women, children and adults across every town and region in Australia. Attending Light the Night is an opportunity for communities to come together, show their support and make a significant difference,” Mr Petch said.

The SERP grants are the latest investment from the Leukaemia Foundation’s National Research Program which has seen more than $50 million invested into blood cancer research since 2002. The Leukaemia Foundation SERP grant recipients are:

Professor Andrew Zannetino (SAHMRI), Professor Peter Croucher (Garvin Institute of Medical Research) and Professor Mark Smyth (QIMR) – ($600,000 over 3 years) 

Professor Andrew Zannettino Interim Executive Dean and Professor of Experimental Haematology in the Faculty of Health and Medical Sciences at the University of Adelaide and head of the Myeloma Research Laboratory, based at the South Australian Health and Medical Research Institute (SAHMRI).

Professor Peter Croucher Head of the Osteoporosis and Bone Program and now leads the Division of Bone Biology, The Garvan Institute of Medical Research, New South Wales.

Professor Mark Smyth Senior Scientist and Immunology Coordinator (QIMR Berghofer Medical Research Institute, Queensland) 

The work being undertaken by Professors Zannettino, Croucher and Smyth focuses on why myeloma patients’ relapse. Their studies have identified a population of myeloma cancer cells that appear to be dormant or in a “sleep like” state, which are hidden away or ‘buried’ within the bone marrow. These dormant cells persist following therapy and can be reactivated or ‘woken-up’ to grow at a later stage, leading to disease relapse. To cure myeloma, it is therefore essential to kill these rare, therapy-resistant dormant cells.

This research will identify new markers of myeloma cancer cell dormancy that will be used to specify which types of treatments are likely to have the most favorable clinical outcomes for myeloma patients and using new state of the art immunotherapy techniques develop a treatment that can target and kill these dormant cells.

Associate Professor Daniel Gray (WEHI) – ($150,000 over 2 years) 

Joint Head of the Immunology Division at The Walter and Eliza Hall Institute

Associate Professor Gray and his team are using a new technology, called mass cytometry, to study how blood cancers develop resistance to therapy. This innovative approach allows researchers to analyse millions of individual cancer cells from a single drop of blood in unprecedented depth.

By analysing samples obtained from patients before, during and after therapy, they can begin to identify the various ways that different blood cancers resist treatment that drives relapse. Asc Prof Gray and this team will also extend this analysis to acute lymphoblastic leukaemia with the aim to understand how cells resist treatment in order to design better treatments for these patients.

Associate Professor Jake Shortt – (Monash Haemotology) – ($285,000 over 2 years) 

Associate Professor Jake Shortt is the Head of Haematology Research at the School of Clinical Sciences and clinical lead at Monash Haematology for leukaemia and myelodysplasia

Myeloma is a cancer of the plasma cell – a cell which normally functions as a protein factory to generate antibodies for the immune system. This feature seems to make myeloma particularly vulnerable to treatments that disrupt protein processing and regulation within the cell. Indeed, the two most active and frequently used myeloma treatments Velcade and. Revlimid – work in this way. Asc Prof Shortt has been able to identify a new target within the Myeloma cells which when treated with a new small ‘drug like’ molecule kills myeloma cells in a completely new way.  Preliminary tests have shown this new drug is even effective on myeloma cells that are resistant to existing treatments.   This project will now further develop this new small ‘drug like’ molecule to accelerate progression to human trials.

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About Light the Night 

This October, more than 35,000 people will gather to walk at Light the Night events across the country. Carrying lanterns in symbolic colours of blue, white and gold, family, friends, colleagues and neighbours will come together for an evening and a reflective walk to support all Australians impacted by blood cancer. Lantern holders can also help raise vital funds to support families living with blood cancer and towards investment into life-changing blood cancer research.

Lanterns are raised high in a moving ceremony to pay tribute to those facing their own blood cancer journey and to remember loved ones lost, creating a glowing sea of support. Together, the crowd then carries their lanterns along a reflective walk to Light the Night. It’s an empowering, beautiful and supportive event that brings family and friends together to reflect, remember and show their support. For more information, please visit https://lightthenight.org.au/.

CAR-T therapy now accessible in Victoria for young Australians with acute lymphoblastic leukaemia at no cost

CAR-T therapy now accessible in Victoria for young Australians with acute lymphoblastic leukaemia at no cost

The Leukaemia Foundation has welcomed the announcement by Federal Health Minister Greg Hunt and Victorian Minister for Health Jenny Mikakos to collaborate and co-fund CAR-T therapy in Victoria. The treatment will be available immediately and at no cost for 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 announcement confirms that tisagenlecleucel, formerly CTL019, (Kymriah®) CAR-T therapy will be available at the Royal Children’s Hospital and the Peter MacCallum Cancer Centre for Victorian patients and for interstate patients who travel to Melbourne to receive the treatment.

Leukaemia Foundation CEO Bill Petch said: “We applaud the collaboration between Federal and State governments to ensure this innovative treatment is available in Victoria at no cost to patients.”

It is our priority to ensure all Australians living with a blood cancer have support and equal access to the innovative treatment they need to improve their quality of life and ultimately survive their blood cancer.”

The Leukaemia Foundation will support all paediatric and young adult patients accessing this CAR-T therapy. This includes practical support such as accommodation and support services in Melbourne as well as emotional support for ALL patients and their families.

“We want to make sure that all Australians have equal access to this procedure, whether they live in a metropolitan city or rural town, anywhere in Australia. We remain committed to encouraging and supporting fast access to innovative treatment for all Australians living with blood cancer,” Mr Petch said.

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

Results from previous clinical trials in children and young adults with relapsed or refractory ALL show an 82% remission rate within 3 months and a 62% relapse-free survival after 2 years of the treatment.

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

Acute lymphoblastic leukaemia (ALL) is a type of cancer that affects the blood and bone marrow. It is characterised by an overproduction of immature white blood cells, called lymphoblasts or leukaemic blasts. ALL is the most common type of childhood leukaemia, and the most common childhood cancer.

The Leukaemia Foundation provides free practical and emotional support to Australians diagnosed with a blood cancer including ALL. The Leukaemia Foundation produces a series of disease specific newsletters and invites all Australians living with blood cancer to subscribe for ongoing information here or call 1800 620 420.

For more information and to coordinate an interview with Leukaemia Foundation CEO Bill Petch please contact media@www.leukaemia.org.au.

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