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I needed better information about clinical trial options

I needed better information about clinical trial options

Matthew Fogarty has spent almost five years regularly travelling to the other side of the world to collect the handful of pills that keep his blood cancer at bay.

Matthew Fogarty
Matthew Fogarty at his home in Perth

After running out of proven, effective treatment options in Australia for his rare type of leukaemia, the 56-year-old stumbled across a clinical trial in America recruiting people to test a drug called ibrutinib, which wasn’t available in Australia at the time.

The father-of-three applied for entry to the trial and was accepted.

Nearly half a decade later, he has spent more than $100,000 of his own money travelling from his home in Perth to Washington DC every 12 weeks to pick up his next dose of the life-saving medicine.

“It’s been a miracle drug for me and may well have saved my life,” he said.

“I believe I’m the only person in the world with this type of blood cancer who has achieved complete remission on ibrutinib.”

Matt taking his first dose of his 'miracle drug', ibrutinib
Matt taking his first dose of his ‘miracle drug’, ibrutinib

“I hope other people like me have an opportunity to try this drug as soon as possible.”

Matt says he had access to the treatment options of his choice after he was diagnosed in 2004, but each time was unable to achieve full remission.

He felt his only option left was to try ibrutinib via Australia’s compassionate access program.

However, his application was declined because “there wasn’t enough evidence to prove ibrutinib could successfully treat this type of blood cancer”.

He added: “I’m disappointed no one thought to tell me about the clinical trial in the US, or even suggest I look.

I discovered it myself on Google and contacted the trial doctors myself.

Surely, I could have been given better information about clinical trial options at that time.

“The financial and psychological impact of the relentless international travel has been substantial, and I’m very fortunate to have had the support I needed from my family to get me through it. I realise not everyone is as lucky as I am.

“If there were more clinical trials here in Australia, it would open up access for many more people and potentially make a huge difference to their quality of life.”

Support Australians to survive blood cancer with simple stem cell donation

Support Australians to survive blood cancer with simple stem cell donation

Saturday September 19, 2020

The Leukaemia Foundation is calling for Australians to mark World Marrow Donor Day by signing up to donate their stem cells in a show of support for 600 Australians living with blood cancer whose lives depend on an allogeneic stem cell transplant every year.

Every 31 minutes, someone in Australia is diagnosed with blood cancer, and for many, a blood stem cell transplant from a complete stranger is their only hope of surviving their diagnosis. But thanks to a simple test, the chance for anyone to save the life of an Australian living with this disease couldn’t be easier.

Last year, the Australian Donor Registry launched a ‘Strength to Give’ campaign, to encourage young people aged 18-35 from a diverse group of ethnic backgrounds to register to become an Australian stem cell donor by using a simple cheek swab to check whether their tissue type matches with someone in need of stem cells or bone marrow.

As the successful campaign reignites once more, the Leukaemia Foundation is again joining forces with the Registry to boost donor numbers, with the latest push aiming to secure a further 6000 Australians to step forward and swab a cheek in a bid to add their name to the registry and save a life.

More than 70% of Australians living with a blood cancer requiring a stem cell transplant must look outside their own family to find a donor, leaving them reliant on Australians to be registered to donate, and looking to the Australian Donor Registry to source a suitable match.

But with less than 5 per cent of registered donors considered ideal, the Registry often can’t meet these needs, forcing a search for potential donors overseas for this vital treatment option. Sadly, in cases where the patient is or identifies as being an Indigenous Australian or hails from a community underrepresented in international registries, a suitable donor can’t be found.

Leukaemia Foundation Acting CEO Alex Struthers said World Marrow Donor Day was not only a chance to celebrate and thank blood stem cell donors worldwide, but also to draw awareness to the reality that access – or no access – to donated stem cells acts as a crucial factor determining survival for hundreds of Australians fighting blood cancer.

“The Leukaemia Foundation is focused on breaking down barriers to ensure all Australians affected by blood cancer have access to the best treatment, information and supportive care, because we know these barriers impact survival,” she said.

“It is simple – the more registered Australian stem cell donors there are, the greater the chance of survival for Australians living with blood cancer, and the closer we all step to seeing zero lives lost to blood cancer by 2035.”

The Australian Donor Registry is especially interested in registering particular members of the community. Younger donors result in better outcomes for patients, so 18-35 year olds are encouraged to register to increase chances of finding the best possible match. Additionally, young men are also considered particularly important donors – as they often weigh more, they literally have more to give. Ethnic diversity is also important as patients are more likely to find a match with a donor from the same ethnic background.

To register to become a stem cell donor, 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.

For more information on stem cell transplants, visit https://www.leukaemia.org.au/disease-information/transplants/ or visit the Leukaemia Foundation’s Blood Cancer Information YouTube Channel.

END

What is a Blood Stem Cell Transplant?

  • Blood stem cell transplant is also known as 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?

END

You stepped up for Jack and his family in their darkest hour

You stepped up for Jack and his family in their darkest hour

Jack Mcilvar in May 2020

Stem cells are primitive cells likened to ‘baby’ cells, yet to decide what they want to be when they grow up. They turn into all the different blood cells, including the cells of our immune system.

But people with blood cancer or related blood disorders often need their stem cells replaced because of their disease or toxic treatments like chemotherapy.

Most stem cells donated to Australians actually come from overseas. So, what happens when unprecedented travel restrictions during a pandemic strangle the vital supply of stem cells?

Jack Mcilvar was 22 years old when he was diagnosed with a dangerous blood disorder called aplastic anaemia. He needed a stem cell transplant this year to save his life.

His father and carer, James, recalls how his son had battled aplastic anaemia for many months, spending weeks in intensive care and coming close to death. But there was light at the end of the tunnel: a stem cell donor had been found in Europe and Jack was finally well enough for a transplant.

His new live cells were prepared for a trip to Australia, to be accompanied by a necessary human courier. Meanwhile, Jack’s doctors in Adelaide began the normal process of destroying what was left of his immune system ahead of the transplant.

But then COVID-19 began to spread. Borders closed, couriers could no longer travel, transplants were deferred. Jack’s life-giving cells remained thousands of kilometres away.

“We just couldn’t believe our luck,” James recalled.

“Our son had no immune system left and was now one of the most vulnerable people in the world.

We’d got through so much and were at last ready for a transplant, but now there was a global pandemic.

“Doctors had to stop treatment because his stem cells were no longer guaranteed to arrive.

“Our family was in complete turmoil. Who could we reach out to? It was a feeling of utter helplessness.”

Then a chance encounter in hospital. One of our team, visiting other families with blood cancer, overheard James in the patient lounge and offered to help.

Jack’s stem cells did make it through.

“We’re still not sure how it happened but Jack’s transplant arrived, we think on one of the last flights in carrying cells,” James explained.  “We were lucky. It was such an incredible relief to us.”

Jack Mcilvar after his transplant

After weeks of difficult recovery following his transplant, and against all the odds, we’re thrilled to report Jack is now on the verge of going home. Thank you so much for being there for families like Jack’s during the coronavirus pandemic.

There are lots of challenges ahead but with Jack and thousands of others like him catalysing our efforts, we’re ready to take them on together.

Life’s good for Michael thanks to Ibrutinib

Life’s good for Michael thanks to Ibrutinib

Michael Van Ewik

For a couple of years Michael van Ewijk had been seeing his GP for sporadic “anaemia trouble” and this came to a head during a freelance job for National Parks NSW.

Michael, a commercial photographer and keen bushwalker, had headed off on a “hard bushwalk”, which he’d done several times before, with a big pack and cameras.

A short way in, he was struck with incredible fatigue.

“I collapsed, sat and waited 20 minutes before I could get up and walk a bit further,” said Michael, and the same thing happened again and again.

“Stupidly, I kept going and finished the walk.”

Blood cancer diagnosis

Afterwards, Michael saw his GP and blood tests resulted in a “very strange reading”. More blood tests initially indicated a blood cancer called myeloma, then a more uncommon type of blood cancer called Waldenstrom’s macroglobulinaemia (WM). He’d never heard of either condition.

“When my GP, a long-term friend, told me, I grinned and said, ‘oh yeah, what’s that?’.

“His face was pretty grim when he explained ‘that’s why I don’t like having friends as patients: you’ve got cancer’.

“Then the penny dropped. I got a bit shocked and of course I went online and scared the hell out of myself.”

Bone marrow biopsy

Michael saw a haematologist, a bone marrow biopsy confirmed he had WM, and over the next six years while on ‘watch and wait’ his life carried on as normal but with “periods of fatigue”.

He had a “healthy lifestyle”, his diet was “good”, he wasn’t overweight, and he was “reasonably fit”. He continued cycling most days, as he had done for the previous 25 years, and made a couple of trips back to the Netherlands, his country of birth.

While his health was stable, Michael also continued to travel each year to Ethiopia in his voluntary role with the charity, Eyes For Africa, that provided cataract operations to the poor living in remote parts of the country.

“Gradually things deteriorated and at the end of 2011 my haematologist said let’s do some chemotherapy,” said Michael.

He tried to ride his bike during his six rounds of CDR chemotherapy – cyclophosphamide, dexamethasone and rituximab – which he completed in February 2012. And the following month, he went on a “mammoth” three-day ride with his son, covering 580km from Brisbane to the Darling Downs and back.

Immune thrombocytopenia

But later that year, Michael’s immunoglobulin M (IgM) level started rising again and he ran the risk of stroke or heart failure due to a thickening of his blood. When his haematologist suggested a course of fludarabine plus rituximab, he hesitated.

“It’s a very strong, toxic chemo that can damage the bone marrow,” said Michael, who sought a second opinion before going ahead with the treatment in September 2013.

“I had one treatment and three weeks later, half an hour into the next round, I went into anaphylactic shock.”

Needless to say, Michael didn’t keep going with this protocol. He had developed immune thrombocytopenia.

After waking one night with blood covering his pillow, Michael was admitted to hospital. His platelet count was zero and it took three weeks and a massive dose of steroids to get his platelets back to a safe level. He described this incident as “the worst experience I’d ever had”.

“But the one round of fludarabine did knock the IgM down and I got some breathing space,” he said.

Next, Michael tried bortezomib (Velcade®) but that also dropped his platelet count to a dangerously low level.

Clinical trial

“I’d been to several conferences and heard [Professor] Judith Trotman speak and wanted a second opinion. It was fortuitous that I saw her just as the ibrutinib trial was starting.”

Michael wasn’t eligible for the two arms of the trial that included rituximab as he had already had that treatment, so he went on a third arm for the trial drug on its own.

And he ‘hasn’t looked back’ since he started taking three ibrutinib* tablets (Imbruvica®) each morning.

When he went on the ‘ibrutinib only’ arm of iNNOVATE – a Phase III international clinical trial – he was the first Australian to have this new treatment as a monotherapy, and it’s been lifesaving.

“My life is normal now,” said Michael, 69, of Milton in regional NSW.

“It’s a pill for life. I’m still on the trial and it still works!” said Michael whose immunoglobulin M (IgM) level is sitting just over 3mg/dl (milligrams per decilitre).

It was 25mg/dl when he was diagnosed with Waldenström’s macroglobulinaemia (WM) in May 2005.

Now, even though the iNNOVATE trial has closed, he still takes those three tablets every morning.

“My only side-effects include mild diarrhoea, which I hardly ever get now and it’s not difficult to deal with. I bleed more easily and get bruising under the skin and sometimes my long-distance vision is affected,” he said.

Life with cancer

“Life hasn’t changed really. Life’s pretty good,” said Michael about having WM.

“I had a marriage breakdown and have a lovely partner now – Elizabeth.  We’ve been together four years and do a lot of travelling.

“One thing has changed – I’ve basically given up alcohol. I used to have a good cellar of red wine but decided alcohol is maybe not the best thing for me, so I sold off my wine.”

He’s also cut back on sugary foods but can’t give up dark chocolate.

“I’ve realised I’m lucky because I’ve got this incurable cancer and it hasn’t really affected my life.

“I can do everything I normally want to do, and I’m sure I’m fitter than most guys 20 years younger than me. I’m not trying to skite, but I ride with blokes younger than me and I can keep up with them.

“Most of the time, I’m not even thinking I’ve got this cancer. In the early days, yes, but not now. I don’t anguish or stress about it at all.”

Pharmaceutical Benefits Scheme

Being on a trial means Michael’s script for ibrutinib is guaranteed on an ongoing basis for as long as it is effective and until the drug is listed on the Pharmaceutical Benefits Scheme.

“The pharmaceutical company [Janssen] is about to put in a submission [to the PBAC],” said Michael.

“It should be on the PBS. It really does work for people with this cancer [WM].

“Ibrutinib has saved my life and my quality of life is just great. I’d be struggling without it.”

September is Blood Cancer Awareness Month, helping to raise awareness of every blood cancerLearn more.

*Ibrutinib was recommended for registration for CLL/SLL by the Therapeutic Goods Administration (TGA) on 20 April 2015. In November 2016, a new indication for Waldenström’s macroglobulinaemia was added, and the CLL/SLL indication modified.

“Thank you for bringing us together”

“Thank you for bringing us together”

Paul at his wedding

A blood cancer diagnosis can be a lonely, isolating time. Our supporters help people going through blood cancer to make connections, talk with others going through the same struggle and build their confidence to take on treatment.

Paul ‘Burt’ Burfield struggled through months of rib and back pain in the lead up to his diagnosis with an incurable blood cancer in early 2018.

“I had a bit of a rollercoaster diagnosis, at one point being told I had lung cancer and two years to live,” remembers Burt. “But in the end, they found out it was blood cancer and I would need a stem cell transplant to survive.”

While Burt and Kelly were given all the medical facts, they were still keen to chat with others who had been through a transplant themselves.

The Burfields connected with Brendan and Roxanne Hodda, who had experienced their own transplant journey when Brendan was diagnosed with leukaemia. The Hodda family also stayed in free-of-charge accommodation during Brendan’s treatment thanks to our generous supporters.

Burt and Kelly on their wedding day
Burt and Kelly on their wedding day with Roxanne as celebrant.

“They really put our minds at ease, answering all the big questions, telling us what to expect and running us through the whole process,” said Burt.

“They were more on our level and could give us insight into all those moments when your doctors or nurses aren’t there. When we were at home and having a bad day – I could just ring them up. Roxy would tell me ‘no, this is totally normal, this is exactly where he needs to be.’ It was so reassuring.”

“Throughout the whole thing Roxy and Brendan have been there – we can’t thank everyone enough for their support and for bringing us together, it’s been invaluable.”

Burt and Kelly travelled to Brisbane for the transplant earlier this year. Their stay in the city was a little easier with access to free Leukaemia Foundation accommodation.

Burt passed through the transplant with flying colours and was back home three weeks later.

Already engaged, it was during Burt’s treatment that Kelly decided to start planning for their wedding.

“And who better to marry us than Roxy? She was already a celebrant, knows exactly what it took for Burt to be here and how special it is that we can all share this together.”

Burt and Kelly were married by Roxanne on 7 June 2019 starting their new life as Mr and Mrs Burfield.

Letter from Roxanne to Burt and Kelly
Letter from Roxanne to Burt and Kelly

Thank you to our supporters for connecting these two families together – you’ve helped build a lifelong friendship and now, happy marriage! This support helps families like these find comfort and knowledge through special connections with their blood cancer peers.

This story was shared for our Lifeblood newsletter and features here as part of Blood Cancer Awareness Month 2019 and World Marrow Donor Day.

Making sure someone’s always there

Making sure someone’s always there

Rhys Marshall during treatment

The generosity of our supporters means every person diagnosed with a blood cancer is given a helping hand and friendly face to help them through this turbulent time.

Diagnosed with a blood cancer a day before his 24th birthday, Rhys Marshall was faced with a world of uncertainty. Luckily, Rhys was put in contact with Leukaemia Foundation Blood Cancer Support Coordinator, Amber to help him navigate through his blood cancer journey.

Here Rhys takes you through the many ways Amber supported him – all made possible by our generous supporters.

“My blood cancer coordinator, Amber, is Wonder Woman to me.”

Blood Cancer Support Coordinator Amber

Rhys could learn about and understand his blood cancer…

“Honestly, I had never heard of lymphoma before. I’m fairly curious and like to know what’s happening in my body and what the treatment is trying to achieve. When I got diagnosed, Amber provided all the Leukaemia Foundation info booklets and always made the time to talk to me through the information and answer my questions.”

Rhys’ partner, Allanah, was supported through the mental battles…

“My partner, Allanah, had stayed so strong throughout the treatment, but when I relapsed she started to struggle mentally. Amber made the trip to our hometown and called in to have a chat about everything. I know Allanah took some comfort in learning what she was feeling was normal. After that, she felt so much better.”

Rhys had a clean and safe home so he could recover quicker…

“When I had to have my first transplant in another city, I was dreading having to organize accommodation for me and my family. I was so grateful to be provided an amazing unit – completely free of charge. It was extremely clean and fit for purpose, it had everything I needed for my recovery. As the transplant involved wiping out my immune system, it was imperative that I stayed in a clean, isolated environment. Some of the nurses said they felt that having such a place to stay, was the reason my recovery was shortened from the normal five weeks to just three.”

I have another transplant coming up that I will have to travel interstate for. Amber has already been in contact with the Leukaemia Foundation staff there to make sure I’m marked as a priority for a unit – I couldn’t be more grateful!”

Rhys had the confidence to take on treatment…

“When I found out I needed another transplant, this time from a foreign donor – I got really worried about all the terrible side effects that can happen. I called Amber and told her how stressed I was, that I didn’t know if I should even do it. She told me; “You know the doctors wouldn’t have recommended it if they didn’t think you needed it…I really think you should give it a go but let me give you all the information to make sure you make the best decision for you.”

 Rhys’ bills were covered so he could focus on his health…

“One of the best things was the Leukaemia Foundation offering to cover all our phone, electrical and utility bills while I was getting treatment. The value of that type of support cannot be understated – it’s the last thing you want to think about when you’re trying to focus on getting better.”

Rhys Marshall post treatment

Thank you to our generous supporters for being there for Rhys through every step of his blood cancer journey. While Amber is Wonder Woman to Rhys, our supporters are superheroes too for making this all possible! 

Daniela is back on her feet after blood cancer

Daniela is back on her feet after blood cancer

Can you imagine this – you’ve just moved to a foreign country, without your support network of family and friends.

Suddenly, a blood cancer diagnosis. Treatment is urgent.

This is exactly what Daniela Kohutova faced. She was just 24 and had recently immigrated to Australia from Slovakia before she was diagnosed with a rare and aggressive form of blood cancer called lymphoma.

Daniela
Daniela enjoying time outdoors

Daniela was working in a Brisbane restaurant and studying English when she started having lower back pain and head spins.

When her blood tests came back, Daniela had almost no white blood cells, red blood cells or platelets.

She was diagnosed with lymphoma, a general term for cancers that develop in the lymphatic system, which is made up of a vast network of vessels (similar to blood vessels) that branch out into all the tissues of the body.

Daniela went through seven months of treatment and spent most of that time in hospital, going home only for a few days between cycles of intensive chemotherapy.

“Back in Slovakia, I was a biology teacher. I’d studied the human body and thought I knew about everything. Then I came to hospital and realised everybody hears about chemo, but nobody knows what it is,” said Daniela.

“The side-effects and what it does to you, that’s a completely different story.”

Coping with treatment

This is where your support, and the support of so many bighearted Australians like you, comes in.

Daniela was helped during her treatment by a visit from a Leukaemia Foundation blood cancer support coordinator while she was in hospital.

“I was helped out with some bills and also was able to attend a support group,” said Daniela.

Daniela was also amongst the first group of people to benefit from the Fit to Thrive exercise program, a free 12-week exercise program helping patients of all ages cope with treatment and get back to normal life, faster.

Daniela’s remission continues and she is so grateful for the support she received.

Conquering aplastic anaemia and lymphoma

“I wish I’d known laughter really is the best medicine”

Luci during her transplant – “I wanted to have fun with it…so I added the crown.”
Luci during her transplant – “I wanted to have fun with it…so I added the crown.”

Luci Sheppard was a healthy 28-year-old living the life over in the UK when she was suddenly “struck weak at the knee’s” by a blood disorder leading to a second blood cancer diagnosis.

“I was travelling, going on new adventures and excited for everything ahead of me,” remembers Luci.

“Then I just started to feel seriously unwell… I had a heap of bruises; my period was beyond heavy and I was struggling to walk without stopping.

“While it seemed out of nowhere, in the lead up I did have nose, gum and ear bleeds but I just didn’t think anything of it.”

After numerous trips to the GP Luci was finally admitted to hospital and immediately attached to blood bags.

“After a month of countless transfusions, biopsies and scary conversations I received my diagnosis – I had aplastic anaemia.”

Luci in hospital
Luci in hospital a few days before her lymphoma diagnosis

Aplastic anaemia is a rare disorder in which the bone marrow fails to produce enough blood cells. This happens because the normal blood forming cells (stem cells) are replaced by abnormal fat cells.

Although aplastic anaemia is not a malignant disease (cancer) it can be very serious, especially if the bone marrow is severely affected and there are very few blood cells left in circulation.

Luci returned to Australia to start her treatment with Anti-Thymocyte Globulin (ATG) therapy.

ATG works by killing specific cells in your immune system called T-lymphocytes — the cells that are attacking bone marrow stem cells in aplastic anaemia.

This allows an aplastic anaemia patient’s bone marrow to rebuild its supply of bone marrow stem cells, causing blood counts to go up.

“I spent two weeks in St Vincent’s Hospital with lovely people – the doctors and nurses were amazing,” said Luci. “But it was tough, the steroids made me irrational, irritable and not the loveliest person to be around.”

After two years, when Luci was 30 years old, it was deemed the ATG therapy had failed and she would need to undergo the dreaded bone marrow transplant

“Along with chemo and every drug ender the sun, and of course, IVF to preserve my fertility,” said Luci.

“The transplant worked, but not without more rounds of chemo and a further diagnosis of lymphoma.

“I didn’t look or feel like myself, it was horrid. I had gained 25kgs, my long-term relationship had diminished, I lost my hair, slept all day and was vomiting constantly.

“Mentally, I wasn’t myself either and it was hard to watch those who loved me be worried all the time.

“They would spend their days coming in and out of the hospital to take care of me, but I was so out of it I couldn’t even watch TV.

Luci having a lung test
Luci now has lung tests every year

“Still, it could’ve been worse – I was one of the lucky ones.”

Luci’s advice to others going through a diagnosis; trust your gut more, prepare your body and mind for a tough fight and laughter is the best medicine.

“I wish I’d pushed back more when the GP’s or emergency department who turned me away,” explains Luci. “I was often back three days later and then admitted for something serious.”

“I wish I’d known how badly the drugs would affect my body, both mentally and physically.

“Finally, I wished I’d known that laughter really is the best medicine, then I could’ve told others what I needed. It really does help to have silly jokes when you are down.”

Now at 34 years old, Luci is getting back to living her life to the fullest.

“I still have monthly blood transfusions and lung check-ups every year, but I now have a job in communications and my long blonde hair has grown back,” said Luci.

Luci in Mexico
Luci in Mexico in 2018 when she was finally well enough to do some more travel

“Not that that stopped me – I didn’t miss any of my best friend’s weddings and rocked the bald head as maid of honour by my sister’s side.”

Luci greatly appreciated the support of the Leukaemia Foundation throughout her treatment and has now committed to helping others going through the same journey.

“I did admin work at the Leukemia Foundation offices when I wasn’t well enough to work elsewhere,” said Luci. “I’ve volunteered for both World’s Greatest Shave and Light the Night for years.

“I was also interviewed by the ABC when I was not long past chemo to demonstrate life after a transplant.

“I love to get involved, it’s very important to show others you can get through it and try to raise funds for such an important cause.’

Luci interviewed by the ABC about life after a transplant
Luci interviewed by the ABC about life after a transplant

Luci’s hope for the future is that there will find a cure and treatment will be far less invasive

“The tubes, the transfusions, the veins, the injections, it’s a lot, but we get through it. I hope if a cure is not on the horizon then at least we can work for better treatments for patients,” said Luci.

Third trimester blood cancer diagnosis rocks young family

Third trimester blood cancer diagnosis rocks young family

Jocelyn Raunjak with her three daughters, Rebecca, Samantha and Michelle in the hospital
Jocelyn Raunjak with her three daughters, Rebecca, Samantha and Michelle.

Andrew and Jocelyn Raunjak were preparing for the arrival of their third baby when their world was turned upside-down by a rare blood cancer affecting less than 100 Aussies each year.

The couple hail from Goulburn, a regional town in New South Wales, about an hour north-east of Canberra.

Jocelyn with partner Andrew in Jocelyn's hospital room
Jocelyn and Andrew.

Life was busy raising their young family and both working full time; Andrew, a constable in the local police force and Jocelyn working as a full-time retail manager for Woolworths.

At 36 weeks into her pregnancy, 39-year-old Jocelyn began experiencing severe fatigue and Andrew discovered dark bruising on her back, stomach and legs.

“At our fortnightly check-up, we mentioned the bruising to the mid-wives who requested the obstetrician to examine Joce. She immediately sent us down to pathology to get some blood tests,” explained Andrew.

“Within an hour we got a call saying we needed to get to the hospital ASAP and to bring an overnight bag.”

Upon arrival at Goulburn Hospital the couple were told there were irregularities in Jocelyn’s blood, and they would need to head to Canberra Hospital.

“We were checked into the maternity ward and within half an hour they came in and told us Jocelyn had APML,” said Andrew.

“I said, ‘what’s that?’ and they told us it was a form of leukaemia. I couldn’t believe it. We were completely shocked”.

Acute promyelocytic leukaemia (APML) is a rare blood cancer where immature abnormal neutrophils (a type of white blood cell) known as promyelocytes accumulate in the bone marrow. These immature cells are unable to mature and function like healthy cells. 

The next day Jocelyn went in for a caesarean under general anaesthetic.

“I was in the waiting room, out of my mind with worry. They were in surgery for two hours and I was told there was a chance neither would survive the operation,” Andrew said.

But Jocelyn came through the surgery, losing just under a litre of blood, much lower than anticipated considering her blood cancer had left her with an extremely low platelet count of 32 (normally 150-400).

“Our healthy baby girl, Samantha, was born on the 14 March, at three and a half weeks before her due date,” said Andrew.

“They tested the placenta for APML immediately, but the results came back clear. Samantha’s blood was also tested for the disease immediately after the birth, which also came back clear. A follow up test in May showed that Samantha has no trace of the disease.”

Treatment begins…

Jocelyn feeds baby Samantha a bottle
Jocelyn and baby Samantha.

Jocelyn started the standard treatment for APML immediately: chemotherapy and arsenic trioxide.

Within a day she started to experience an onslaught of life-threatening side-effects including kidney failure, severe mouth ulcers and internal bleeding.

“Once I was called to come to the hospital in the middle of the night because she had started bleeding heavily due to the mouth ulcers,” Andrew added.

“It took an hour for doctors to control the bleeding”.

Over the course of the following three days, Jocelyn developed dizziness, doubled vision followed by blurred vision. She became incoherent in her verbal communication and could not write in any form, to be understood.

“The next day she fell unconscious and wouldn’t wake up. She had to be rushed to intensive care and put on life support,” said Andrew.

Jocelyn was in a coma for 11 days in order to stabilise her condition. Whilst on life support, she developed seizure-like events and swelling on the brain.

“Shortly after waking up from the coma, Jocelyn was still bleeding internally,” said Andrew.

“Doctors rushed her to theater for two separate procedures to stop the bleeding from three ulcers that were located in her intestines. Thankfully the medical staff were able to get on top of it.”

Jocelyn on life support in the ICU
Jocelyn on life support in the ICU.

She fought for her life in hospital for eight weeks, but she made it through the first phase of her treatment and was discharged on 13 May 2020, exactly 2 months from being admitted into hospital.

A home-away-from-home

During the eight-week ordeal, with help from his mother-in-law and father-in-law, Andrew was caring for their three children, including Samantha’s older sisters, Michelle, five, and three-year-old Rebecca.

Forced to rush to an unfamiliar city for life-saving treatment, the family have been provided a home-away-from-home at the Leukaemia Foundation’s John James Patient Accommodation Village in Canberra for the duration of Jocelyn’s treatment.

The John James Foundation proudly funded construction of the Village, a cost of more than $7 million, on land provided by the ACT Government. The village was opened in 2016 and has provided a safe haven for many families during treatment.

“I knew of the Leukaemia Foundation but really didn’t understand the range of services they offer.

“It’s just unbelievable we can stay in this accommodation at no cost, with staff on site to make sure we have everything we need.

“I just don’t know what we would’ve done if we hadn’t had that support. I certainly wouldn’t have coped.

Jocelyne walking out of the hospital on discharge day, being cheered on by hospital staff
Jocelyn being discharged from hospital.

Reflecting on the past couple of months

“Jocelyn is obviously still very emotional about the whole thing. Due to being cytotoxic from the treatment, she couldn’t breast feed, which was really upsetting.

“The COVID-19 outbreak is making it even more difficult as we couldn’t have any visitors.”

Andrew has been home-schooling his older children because of the COVID-19 lockdown and says the girls have found the past couple of months unsettling.

Jocelyn's daughters doing schoolwork at the accommodation centre
Michelle and Rebecca were home-schooled at John James Village.

“During the night they were crying their hearts out because they couldn’t see their mum at all,” said Andrew. “They often weren’t allowed in the hospital as there was a strict one-visitor rule.”

Jocelyn now has the next phase of her treatment ahead of her, which she will undergo as an out-patient keeping a base at the Leukaemia Foundation’s John James Village Accommodation Village in Canberra.

The family are thankful for the support they have been shown through the toughest of times.

“We have a long road ahead of us but are just feeling incredibly grateful we have everyone behind us and Jocelyn is on the path to recovery.”

Decisions from the March PBAC meeting for CLL/SLL

Decisions from the March PBAC meeting for CLL/SLL

Acalabrutinib (Calquence®) will be added to the therapy arsenal for CLL and SLL after receiving a positive recommendation by the Pharmaceutical Benefits Advisory Committee (PBAC) at its March 2020 meeting.

Two treatments for SLL and/or CLL were considered at the meeting for listing on the Pharmaceutical Benefits Scheme (PBS). Venetoclax (Venclexta®) was given a first-time decision not to recommend in a particular indication and acalabrutinib received a positive recommendation.

Acalabrutinib was recommended for the treatment of patients with relapsed or refractory CLL/SLL who are not suitable for treatment or retreatment with a purine analogue (also known as second line treatment of CLL/SLL). The PBAC considered that acalabrutinib may provide a different toxicity profile compared to ibrutinib for some patients.

In its decision not to recommend venetoclax in combination with obinutuzumab for the first-line treatment of CLL patients with coexisting conditions and who are unsuitable for fludarabine-based chemoimmunotherapy, the PBAC accepted that venetoclax + obinutuzumab was clinically superior to current first-line therapy for CLL in delaying progression. However, the cost effectiveness ratio and financial estimates needed to be reviewed.

When the PBAC meets again, in July 2020, it will consider new submissions for acalabrutinib for CLL/SLL patients with a 17p deletion, and a resubmission for venetoclax in combination with obinutuzumab for patients with CLL.

In submissions to the PBAC in February 2020, in support of the availability of new treatment options for this blood cancer, the Leukaemia Foundation included consumer comments, sourced from our disease-specific community groups on Facebook. Australia’s patient population for these yet-to-be-listed therapies is small and we received two consumer responses in relation to acalabrutinib and venetoclax.

The Leukaemia Foundation also contacted the pharmaceutical sponsors who made the submissions, AstraZeneca (acalabrutinib) and AbbVie (venetoclax), for information to help inform our consumer comments. This included details about the target patient population/subgroup, current treatment pathways, how the medicine works, its efficacy relative to other medicines available to treat CLL/SLL, how the medicine is administered, side-effects and their management, and quality of life impacts.

In the Leukaemia Foundation’s submissions, CEO, Bill Petch, urged the PBAC to recommend the treatments be listed on the PBS for eligible patients, “given the high unmet needs of people living with CLL who are unable to tolerate the current standard of care”.

“People want choices,” he said.

“They want access to a range of treatments to help them fight the disease with fewer side-effects, to help them not only to survive but also to live well, and to provide them with greater options for remission and ultimately improved quality of life.

“Our priority is to ensure all Australians living with blood cancer have timely access to the best therapies and treatments available, to improve time spent in remission, survival and quality of life,” said Mr Petch.

Acalabrutinib for r/r CLL or SLL

AstraZeneca sought a listing of acalabrutinib for people with r/r CLL or SLL who were unsuitable for treatment with a purine analogue (e.g. fludarabine) and who have had a least one prior therapy for CLL/SLL.

Based on summary information on the ASCEND clinical trial, use of acalabrutinib versus current standard of care demonstrated a statistically significant reduction in the risk of death or disease progression for patients – including those with high risk features such as 17p deletion, 11q deletion, TP53 mutation, and unmutated IGHV. The usual dose (of acalabrutinib) is a capsule taken twice daily and which can be taken from home, which is convenient for patients and their families.

Bruce Wood, from South Australia, who is living with CLL provided the following input to the PBAC for its consideration of this submission:

I have been taking acalabrutinib for 6 weeks now via a clinical trial at Flinders Medical Centre for CLL. 

My white cell count is rapidly decreasing and my spleen has reduced from 21cm below my lower rib to a normal size. It is a very effective drug with minimal side effects. 

“If it was available to the general public as frontline treatment for CLL it would make a huge improvement to current treatment regimes,” said Bruce.

Venetoclax/obinutuzumab combination as a first-line treatment

AbbVie had requested a streamlined listing of venetoclax in combination with obinutuzumab as first-line treatment for people with CLL with coexisting conditions and who are unsuitable for fludarabine-based chemotherapy such as FCR (fludarabine, cyclophosphamide and rituximab). The venetoclax/obinutuzumab regimen is administered orally, on a daily basis, and can be taken at home after an initial five-week treatment phase where the patient is closely monitored.

Patients who aren’t eligible for intensive chemoimmunotherapy, such as FCR, are currently treated with obinutuzumab in combination with chlorambucil.

Based on summary clinical trial information, AbbVie believes venetoclax in combination with obinutuzumab to be superior to the current standard of care (obintuzumab combined with chlorambucil) for these patients.

A Victorian patient with CLL responded to our request for input on this submission, saying they would be prescribed venetoclax combined with obinutuzumab when they started treatment.