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Jane’s survived a second cancer diagnosis while on watch and wait

Jane’s survived a second cancer diagnosis while on watch and wait

All Jane Blakeley knew about leukaemia – at the beginning, when she got the shock diagnosis of having a precursor to CLL – was that “people who have leukaemia die”.

“That was my understanding,” said Jane, 60, of Wilton, south west of Sydney.

And that’s why she didn’t tell anyone for a long time. She thought most people would think, ‘oh, God, you’re going to die’.

Jane Blakeley with her two Jack Russells
Jane Blakeley with her two Jack Russells

“It was only as I found out more information over a few years that I started to tell people,” she explained.

“I didn’t know leukaemia was a blood cancer and didn’t realise there were so many different types of leukaemia.

“And then the haematologist said, ‘if you’re going to get leukaemia, this is the one to get’.”

The call that changed everything

Jane’s cancer journey began in 2012, when she got a call from her GP one afternoon while babysitting. She’d had a full blood test to keep an eye on her cholesterol and blood sugars, etc.

“We need you to come in and talk to the doctor,” she was told, “we’ve picked up something in your bloods”.

“It was an absolute shock,” said Jane, who is married and has step children and grandchildren.

“So off I go. They said they’d been monitoring it [her B-cell count] for a while, and it had gone up enough to think it could go into CLL.

“From there it was off to the haematologist. I had monoclonal B-cell lymphocytosis*, a precursor to CLL.

“It was just monitored and eventually it crossed over to CLL in early-2013.”

Again, that was a shock for Jane, and equally for her husband, David.

“I had no symptoms, nothing. I’ve never had any symptoms. If it wasn’t for the blood tests, I would still not know about it probably, except for what else has happened.”

Jane and David at Uluru
Jane and David at Uluru in July 2019: “we travel a lot together”

Coming to terms with having CLL and finding out more

“At first, it was really, really scary… you’re waiting for something to happen to you.

“In the early days, if I got an ache or a pain or was particularly tired, I’d think, is this because of the CLL? It took me a good few years to get my head round it.

“I contacted the Leukemia Foundation to try and find out a bit more, because I’d just Googled stuff, as you do.

“I must admit the Leukemia Foundation was unbelievable. The more information I got, the better I felt about the situation.”

“They sent me all sorts of information,” said Jane, and she’s saved all of it in a file, which includes back copies of CLL News.

“They got me involved with a support group, then I went to a conference they had, and then another blood cancer conference.

“Over the years I’ve kept going to the support group meetings,” said Jane, initially at Liverpool Hospital (Sydney) and now at Bowral, which is closer.

“I think they’re good. You get to know people.

“At first, it was a great help to hear other people who had CLL, their experiences. And now I’ve been going long enough that I can help other people.

“You learn from others. You pick up how they deal with things, and you can talk about how you deal with things.

“And the more people I met, the more information I found out, the happier I’ve been.

“Knowledge is power and the more knowledge I had – about the research being done, the breakthroughs and the success with treatment – the better I felt about it.

“By the time I might need treatment, there might be a cure.

“I was told… a third of people [with a CLL diagnosis] will need treatment straight away, a third will need treatment at some stage, and a third will never need treatment.”

Jane and David in Europe
Jane and her husband, David, went to Europe for Christmas 2018 after she completed breast cancer treatment

Going from watch and worry to not worrying anymore

Seven years have passed, and Jane hasn’t had any treatment for CLL.

“It was diagnosed early and its progress is slow,” she said.

“My haematologist says… the way I’m going, its progress over the last seven years and looking at the markers in my blood, it will be a long, long time before I need treatment.”

So how does her CLL diagnosis affect Jane now?

“It doesn’t,” she said. “Not now.”

“At first, it was very hard to get my head around. But the more I found out, the more comfortable I felt.

“It used to be watch and worry, but I don’t worry about it anymore.

“I try to live more mindfully; doing things I’d like to do, rather than what I have to do. You realise that life is short.

“But I’ve had breast cancer as well, and that’s had a greater impact on me than the CLL diagnosis.”

Jane’s second cancer diagnosis

Two years ago, a mammogram detected breast cancer.

“That rocked me more than anything did, because that was immediate and needed to be dealt with straight away. Whereas with the CLL, I knew it was a long-term thing,” said Jane.

“I was diagnosed with breast cancer in late-January 2018. When I saw my haematologist the next month for my yearly check-up, I’d already had one operation.

“He said, ‘don’t worry about your CLL. You just do what you need to do to treat the breast cancer’, and he kept in contact with my oncologist.”

It’s 18 months since Jane finished her breast cancer treatment, which knocked her around, and it’s only been in the last couple of months that she’s felt herself again.

“It never quite leaves you because of ongoing medication, but I don’t live every day worrying about it,” said Jane.

“I just get on with things. I’m that sort of person.

“But I had trouble coming to terms with the breast cancer after it was all finished,” said Jane, who found herself waiting and wondering… what’s next?

“I had counselling for that, and that made a huge difference.”

The psychologist she saw treated people who’d had cancer.

“The aim was to try and focus on the good things and not on the ‘what might happen’.

Jane with her patchwork quilt
“I love sewing and have so many unfinished projects, I need to live until I’m about 500 to get them all done,” says Jane Blakeley working on her patchwork

Getting on with life and living with CLL

“Now I’m stuck at home, I love it,” said Jane about self-isolating during COVID-19.

“I get to do more of the things I want to do. I sew. That’s my happy place. And I meditate a lot and go for walks with my two Jack Russells [terriers].”

“I only see the haematologist once a year and he’s happy with progress so far. He’s always been very positive.

“He looks across all my bloods, says ‘this is a bit high, but that’s perfect, come back in another year and stay healthy’, and that’s about it.

“At the moment [during the COVID-19 pandemic] he says, ‘be careful to stay away from sick people’ because my immune system is still compromised.

“And I have to be proactive. If I get sick, I have to act on it straight away.

“His opinion is that there’s no need for any treatment at this time. And my understanding is that if they treat CLL too early, the side-effects are worse than the treatment.

“And having had chemotherapy, I can understand why they say that.”

Interestingly, the chemo Jane had for breast cancer also had a favourable effect on her CLL.

“It’s funny, the chemo actually knocked the CLL on its head,” said Jane.

“When I had to see my haematologist in March last year, he said there was no detection of CLL in my blood at all!”

“When I asked, does that mean I don’t have it anymore, he said, ‘no, but it’s not detectable in your blood at the moment’.

“But when I saw him in March this year, they could detect it again. It’s starting to creep up a bit.”

However, Jane says, “I’m in a good place with it now”.

“I have a wonderfully supportive and loving husband, and a great brother and sister who help put things into perspective. Extended family and close friends help as well.

“I try to stay positive, do things that I like doing, and try and be as healthy as I can.”

“I eat well, but I like red wine and sometimes drink more of that than I should. But at the end of the day, life’s short. I exercise and I’m an active person. I walk primarily, around where I live which is a beautiful semi-rural area.

“I’m lucky, we travel a lot. We’ve got a motorhome and travel overseas a fair bit. I always appreciate being able to travel,” said Jane.

But this year, their Easter trip to the South Coast, and the holiday they planned to Alaska and Canada in July, were both cancelled.

Jane’s advice to others on watch and wait

“For anyone at a similar stage to me, I’ve said, go to the Leukemia Foundation because they’re so good at providing information, try and look after yourself to the best of your ability, and eat as well as you can. Try to stay healthy, in other words.

“I’ve found by concentrating on things I enjoy, there’s not as much time in your head for the other stuff.

“The important thing is, you have to get on with life.”

* Monoclonal B-cell lymphocytosis (MBL) is an asymptomatic precursor condition for chronic lymphocytic leukemia (CLL). It is defined by the presence of small clones of aberrant B-cells in the peripheral blood, with a total B-cell count below the threshold for diagnosis of CLL.

PBAC/PBS update on CLL/SLL therapies

PBAC/PBS update on CLL/SLL therapies

Here are updates on three novel therapies for the treatment of CLL and SLL.

Acalabrutinib as a first-line treatment

Acalabrutinib (Calquence®) has been available on the Pharmaceutical Benefits Scheme (PBS) for CLL and SLL since September 1 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).

Acalabrutinib: available on the PBS for relapsed/refractory CLL

At the July 2020 meeting of the Pharmaceutical Benefits Advisory Committee (PBAC), the decision was made not to list acalabrutinib for the first-line treatment of patients with CLL/SLL who are considered unsuitable for treatment with a purine analogue, either as a monotherapy or in combination with obinutuzumab (Gazyva®). The same decision also was applied for the first-line treatment of patients with CLL/SLL who harbour a 17p deletion.

Ibrutinib as a tablet for more dose flexibility

This month’s PBAC meeting considered a minor submission by Janssen requesting that ibrutinib (Imbruvica®) tablets have the same listing conditions as already applies to ibrutinib capsules. The Leukaemia Foundation took this opportunity to provide the PBAC with feedback sought from consumers via its disease-specific Facebook pages on their experiences with ibrutinib.

These responses about side effects and improvements to quality of life were as follows:

  • A CLL patient, when treated with obinutuzumab, had experienced lethargy. Following relapse, this patient was placed on ibrutinib and saw a dramatic improvement in energy levels and did not experience any side effects. The patient said, “my energy level has been restored and I am happier in myself”.
  • Another CLL patient who said it was likely that they would need to be placed on ibrutinib in the near future expressed concern that without subsidy they would not be able to afford the medication.
  • A SLL patient who manages a SLL-specific online support group noted that those eligible for ibrutinib praised its effectiveness on improving quality of life. This person further stated that, “by having ibrutinib added to the PBS, my potential for my quality of life to drastically improve in an affordable manner means that not only is my life extended, but the time I have with my wife and kids is too.”
  • Another patient who has been taking ibrutinib for eight months noted that they had not experienced any negative side effects and believed it had improved their blood test results.

The Leukaemia Foundation understands from information provided that ibrutinib capsules are currently available in a single dosage (140 mg), whereas the proposed tablets would be available in four different dosage strengths: 420 mg and 560 mg that would provide patients with a more convenient dosing regimen that reduces the pill burden, from three capsules daily to one tablet daily and which also may improve adherence; and 140 mg and 280 mg to allow for dose adjustments that may be required by patients to manage any adverse effects, improve tolerability, and/or be used when patients are receiving concomitant CYP3A inhibitors.

Venetoclax as a first-line therapy for CLL

On 1 March last year, venetoclax (Venclexta®) was listed on the PBS for CLL patients who have relapsed or are refractory to at least one prior therapy and who are unsuitable for treatment or retreatment with a purine analogue.

Another outcome from the PBAC’s July meeting this year was a positive recommendation for the PBS listing of venetoclax, and scheduling is expected by the end of the year. This listing is for venetoclax in combination with obinutuzumab for first-line treatment of patients with CLL who have coexisting conditions and are unsuitable for fludarabine-based chemoimmunotherapy.

The PBAC was satisfied that venetoclax plus obintuzumab provides, for some patients, an improvement in efficacy over current first-line CLL therapies in delaying progression.

Deborah’s one of the first Aussies to have CAR T-cell therapy for CLL

Deborah’s one of the first Aussies to have CAR T-cell therapy for CLL

Deborah Sims and children
In February 2019, when Deborah Sims and her children participated in the announcement that venetoclax would be listed on the PBS

Deborah Sims, one of the first Australians to have CAR T-cell therapy for CLL, was back at work within a month of having the new form of immunotherapy in hometown Melbourne.

And now, the mother of three is officially ‘a genetically modified human being’ after having an infusion of her own re-engineered T-cells in September to treat her aggressive CLL.

Diagnosed at 38, Deborah, now aged 47, had failed chemo (FCR), failed a novel therapy (venetoclax [Venclexta®], and was on her second novel therapy (ibrutinib [Imbruvica®) when she went on an international CAR T-cell therapy trial.

CLL News 2016“I’m at Day… at 37,” said Deborah when she spoke to CLL News in late-October.

“I’ve lost track of how many days because I’m not even counting anymore, because my life’s back to normal.”

This is the story of how Deborah got on that trial, due largely to her own self-advocacy efforts.

But first, read about Deborah’s diagnosis and early treatment, including a monthly commute to the UK on a venetoclax/obinutuzumab (Gazyva®) trial.

The previous time CLL News spoke to Deborah was in 2016, a year she describes as “all a bit of a blur from permanent jet lag”.

When her appointments stretched out to being three-monthly, in 2017, this “took a bit of pressure off” for her.

“I would fly to London, mainly to get the drug, three months’ supply. I’d get a blood test, see my consultant, then fly home,” said Deborah.

“Then, in 2018, I was told the trial was ending; they’d got the data they needed.”

At her last appointment in London in April 2018, she was given two months’ supply.

The drug’s manufacturer, AbbVie, then granted Deborah compassionate access to venetoclax in Australia… right at the time when the drug stopped working for her.

When she went to the Peter McCallum Cancer Centre in Melbourne to pick up her venetoclax, she had a blood test.

“That test showed I was no longer MRD negative; they found some CLL,” said Deborah.

She was devastated by this finding.

Deborah Sims with her children at Light the Night
Deborah with her three children at Light the Night at Melbourne’s Federation Square in 2018

“I was really sad because I was the beacon of hope for this disease.

“Venetoclax is an amazing drug and I’d had so little side effects from it. I was truly grateful it had given me a four-year remission and had beaten my disease down in a way chemo had never achieved.

“I’d had a completely normal life for four years on that drug, with the exception of having to fly to the UK so much to get it.”

On March 1 last year, ventoclax became available through the Pharmaceutical Benefits Scheme (PBS) for Australians with relapsed/refractory CLL.

“I was delighted to help with the campaign to get it listed on the PBS. My children and I were with Health Minister Greg Hunt the day it was listed,” said Deborah.

“It’s so important that patients can get this treatment. I still think it is the most powerful drug we have in our arsenal (apart from CAR T-cell therapy),” said Deborah.

“I’d like to see venetoclax/obinutuzumab front line.”

“And I’d really like to see the end of FCR*, which is chemotherapy, except for people with the right [genetic] markers to respond well to it, which is a very small proportion of CLL patients.

“I was one of the earliest people on venetoclax,” said Deborah, but some people had been on it since the first trial in 2011.

“Unfortunately, because of all the patient journalism I’ve ended up doing, when I went to an international conference for CLL in November 2017 in New York and saw Dr Mary Ann Anderson presenting her research, I discovered that resistance [to venetoclax] was developing in some of the early patients.”

Read an interview with Dr Mary Ann Anderson about the development of venetoclax in Australia

Deborah stayed on venetoclax for four years because she didn’t have any side effects and it wasn’t known what would happen if she stopped it.

“But the standard of care now is that you’re on venetoclax for two years,” explained Deborah.

Deborah Sims and her children at Brighton Beach
The family together at Brighton Beach in 2019

“There’s a theory that because I stayed on drug for four years, maybe that’s why the resistance developed. Other people haven’t relapsed after the two years, and those who have relapsed have actually responded again to the drug when they’ve had it [again, after a break].

“I don’t want people to hear my story and go, ‘Oh, but I’m going to relapse’, because that’s not the case.

“I have very aggressive disease. I was already relapsed and refractory when I started it.

“I got one of the deepest remissions they’d seen on this treatment, and I got no detectable disease in the bone marrow for two years on it.

“Dr Piers Blombery and Dr Mary Ann Anderson have identified a gene that has developed in patients while they’ve been on venetoclax that has made their disease resistant to it.

“Basically, ventoclax turns off a pathway, and CLL is so smart it finds a way around that pathway to start growing again in some patients with aggressive disease.”

Deborah’s relapse and what happened next

When venetoclax stopped working for Deborah, she had a “very slow relapse”.

“We’re talking a tiny amount of disease. They were finding it at the molecular level, but knowing my disease doesn’t stay molecular very long–it really takes off–they were trying to find out how quickly it was progressing before deciding to switch treatments, because I had done so well on venetoclax,” said Deborah.

In February 2019, the decision was made for Deborah to try four cycles of rituximab (MabThera®), as an experiment, to see if that would help the venetoclax hold the line a bit longer.

“It wasn’t going to be a cure for me, but I was really running out of options as to what we’d do next.

“It gave me two months where the disease was knocked back a bit, but it was pretty unpleasant.

“It was the third time, I’d had a monoclonal antibody and I think I was starting to develop resistance to that. I struggled with a lot of pain. I’d had a nice easy ride on venetoclax and it was quite a shock having a treatment that was hurting me and causing all these side effects,” said Deborah.

“By August the CLL was really coming back and I was planning to go to the American Society of Hematology (ASH) conference in Orlando in the U.S. that December,” said Deborah who has been going to the European Hematology Association meetings, the International Workshop on CLL, and to ASH each year.

“I interview doctors from a patient perspective about scientific research and clinical trials, and tailor that information for Australians,” Deborah explained.

“The way I see it is… patients don’t have to read scientific papers, but they need to be aware of what science is doing because at some stage, especially with CLL, they are going to need the latest treatment.”

Joining the Blood Cancer Taskforce

Motivated by the lack of a standard of care practice for CLL and her annoyance at people not being referred on to clinical trials, Deborah accepted an invitation to join the Federal government’s Blood Cancer Taskforce in September 2019.

During a flight to Canberra to attend a Taskforce meeting, she sat next to Dr Michael Dickinson, a haematologist who specialised in aggressive lymphoma, who asked how she was going.

“I said I’d relapsed on venetoclax and all I really had left was a BTK inhibitor, that I could get ibrutinib on the PBS, but I’d much prefer acalabrutinib, and zanubrutinib was in trials, and we’re discussing which one to put me on,” she said.

He asked if she knew of the CAR T-cell trial** that was opening soon at the Peter MacCallum Cancer Centre and explained that, to qualify, trial participants had to have been on ibrutinib for six months. Deborah knew about this one-off treatment. She had met people who’d had the new form of immunotherapy in America and whose disease had not relapsed.

Then, in early-December last year, Deborah set off once again to the ASH conference in the U.S.

“I did all these interviews with CAR T experts including with Professor Tanya Siddiqi of the City of Hope National Medical Centre (California) and decided if I couldn’t get to the Peter Mac [trial] I would go to the City of Hope and have my CAR T-cell product there, although that was going to cost a million dollars, so I wasn’t sure how I was going to do that.”

Deborah doesn’t know why, but the decision was made to take her off venetoclax the week before she went to ASH.

“So I get to America and my disease is going off.

“My neck is suddenly swollen. I’ve got lymph nodes under my armpits. I’m actually panicking because I was not expecting to get bulky disease immediately,” she said.

“It’s not something you see when you come off venetoclax, so my disease obviously decided it’d had enough.

“But luckily I’m with every great haematologist in the world and I’m interviewing them.”

“I said to [Professor] Miles Prince, ‘before we do the interview, can you just feel my neck, tell me what you think?’, and he’s like, ‘you’ve definitely got some lymphadenopathy but I don’t know what your neck was like before, I’m not the person to ask’.

“Basically, I got 40 opinions at this conference,” said Deborah.

When she returned to Australia, she spoke to her lead haematologist, Professor Con Tam, and although he wasn’t sure if she’d get on the CAR T-cell trial in Australia, he put her on ibrutinib in January this year.

“I didn’t tolerate it as well as I had venetoclax. I had quite a lot of side effects–joint pain, bruising–but it worked, and my disease started going back into remission.

“We got to June and, in the meantime, COVID happened and the CAR T-cell therapy trial had been put on hold.

“I asked about the CAR-T trial and Con checked with Michael.

“It had reopened, and Con said, ‘let’s get you on it’, so screening [a bone marrow biopsy, CT scan, ECG, and bloods] was booked for the day after I’d been on ibrutinib for six months!

“And the way the trial works is that they do the leukapheresis [the T-cell harvest] before you even know if you’re on the trial.”

It’s a three-hour process that involved “a massive needle” and an anti-blood clotting drug that made Deborah vomit.

“I thought… I’ve got stable disease, I could have had years of ibrutinib, what am I doing?

“Anyway, it just happened really quickly.”

Deborah’s T-cells were sent to America to be re-engineered, but there was a hold-up due to COVID, and she waited seven weeks for them to be returned.

This meant she needed another round of screening to provide a new baseline for the trial.

“It showed very little detectable disease and the CT scan was clear. I was very well,” said Deborah who at the time was having “major second thoughts”.

“I could not get my head around what I was doing.”

Deborah Sims and Michael Dickinson in hospital
Deborah with Dr Michael Dickinson when he visited her in hospital after her CAR T-cell therapy procedure

The anguish of having CAR T-cell therapy while well and healthy

“A private counsellor helped me reason that this was about long-term survival, rather than waiting for another drug to fail, then running out of treatment options, or having a bone marrow transplant as salvage therapy, which was the last thing I wanted to have.

“My mental anguish was about the decision to do something which could have killed me.

“Even though the doctors said, ‘you’ll be fine, you’ve got little disease, we’re not expecting you to have side effects, I’ve lost two friends within hours of having their CAR-T transfusion.

“They were very much like me, patient advocates campaigning for the best treatment, and they got those treatments first.”

On top of this, Deborah was getting a CAR T-cell product that was new.

“Anything new is scary, and you don’t really want to be the first patient having something. But equally, this was such an amazing opportunity for me. My disease was in its best state ever to have this. My doctors were confident it would work, and if it didn’t work, that it wouldn’t harm me.

“With CAR-T, it really does either work, or it doesn’t. And if it doesn’t, there’s a risk of mortality,” said Deborah.

Deborah Sims being monitored in hospital
Being closely monitored when Deborah was in hospital after having her CAR T-cell infusion

“I’m on an international CAR-T patients Facebook group. There’s 2000 of us on it and every day you’re hearing great news from someone, then devastating news from someone else. It’s that black and white.

“What scared me was that first month after infusion; what I was going to go through? I was very scared about how sick I might get.

“It was the first time in 10 years of having this disease that I’ve done an advanced care directive and sorted my will out. I prepared everything in case I died.

“So mentally, to go into something where you really thought you might die, when you’re well, was incredibly difficult.

“I’ve always been a pioneer. I genuinely think it’s the bravest thing I’ve ever done, but I was worried that it was also the most reckless. I was very scared that I wasn’t being brave as much as reckless with my good health.

“But I’ve spent years making sure I’ve had the best doctors and I’ve trusted them. That’s always been my mantra to patients; find doctors you trust.”

Once Deborah’s cells had been re-engineered, she decided to go ahead with the procedure.

“This is a $600,000 treatment and I was getting it free, and a lot of people had gone to a lot of effort to make sure I got it.”

Three days after her T-cells arrived back in Australia, Deborah had three days of lympho-depleting chemotherapy, just enough to wipe out her immune system. After having the weekend to recover, Deborah went to the apheresis ward on a Tuesday.

“A nurse infused a vial of my engineered T-cells and that was it. It was so weird.”

“This was a really expensive, amazing product and thousands of people had been involved in getting it into me and this senior nurse just infused it, then did a flush, and that’s it.

“Then I spent three days just watching Netflix, and writing, and reading, and nothing at all happened to me,” said Deborah, and she went home on the Friday.

She was told that Day 11 was when they could expect to see some activity.

“But because I have CLL and very little disease they weren’t expecting much of a reaction and they certainly weren’t expecting something called cytokine release syndrome, which causes fever and can become serious.

“They know how to manage it better now, than when my friends died.”

On Day 10 Deborah started getting a “massive amount of pain” in her bones, “like someone was giving me a bone marrow biopsy all over my body”. The pain worsened, she started getting a fever and started shaking. When the fever spiked, she spent the night of Day 11 in the high dependency ward at Royal Melbourne Hospital and on Day 12 she was pleased to see the haematologist was Dr Mary Ann Anderson who until then she had admired but never met, and she was transferred back to the Peter Mac.

“She was pretty sure I had cytokine release syndrome,” said Deborah.

“They said I might have had more disease than they thought.”

Mild pain continued for another week.

“I swear I could feel the CAR T-cells going around my body mopping up the CLL cells.”

Con Tam, Carly Burgess and Deborah Sims
Deborah Sims, centre, with Professor Con Tam and her trials nurse, Carley Burgess

“I’d get a pain suddenly in my armpit, which was where my lymph nodes would always grow the most, and hang around there for the day, then it went up to my jaw, on to the lymph nodes in my face, and the back of neck, which was sore for a few hours.

“It was like going around, just cleaning out everything. It was incredibly exciting.”

Deborah doesn’t think CAR T-cell therapy should be a salvage or last-ditch treatment.

“I think if you’re as well as you can be going into it, the outcomes are better. That’s what I’ve found talking to CAR T-cell therapy doctors. Tanya Siddiqi, in particular, wants to see it become second line treatment.

“Patients like me put themselves on the line, not for unselfish reasons, but we’re the ones that are going to make it a lot easier for the patients in a few years’ time, like with me now saying, ‘I went around the world to get venetoclax and obinutuzumab’.

“There are so many really good trials out there that are better than standard of care and patients really need to ask their doctors about them.

“It’s really up to everyone to say, ‘are there any new treatments I should be aware of? Is there a clinical trial, even if it’s not in my state?’.”

You can read Deborah Sims blog, abtandme.

* Fludarabine, cyclophosphamide, rituximab

** An international trial, with four sites in the U.S. and one in Australia (at the Peter MacCallum Cancer Centre). The trial has three arms, for CLL, DLBCL, and ALL.

Deborah Sims and children
Before Deborah has her CAR T-cell treatment, at home with Cameron, Natasha and Marlowe



Expert Series Q&A: with Dr Mary Ann Anderson

Expert Series Q&A: with Dr Mary Ann Anderson

Mary Ann Anderson
Dr Mary Ann Anderson: “The thing that gets me up in the morning is finding new and better ways to help people.”

This story was first published in CLL News June 2018 

At the Leukaemia Foundation-hosted New Directions in Leukaemia Research (NDLR) conference in Brisbane in March 2018, Dr Mary Ann Anderson, a clinician scientist at the Walter & Eliza Hall Institute of Medical Research (Melbourne), shared a story about the development of venetoclax (Venclexta®). It involved research by thousands of people over 30 years resulting in a paradigm shift in the treatment of CLL that is “tangibly changing people’s lives”.

How did you become interested in blood cancer research?

What struck me as a haematology registrar was – we have great treatments and can cure some people but there are many diseases where patients don’t have good outcomes. I found it particularly challenging when we didn’t have therapies for people and couldn’t help them. The natural next step in my career was working to get better treatments for those people. The only way to do that is through research, so I went into a PhD. I’ve been extremely fortunate to be involved in the development of a new drug that has helped a lot of people and I’ve fulfilled my career goal doing that. Sadly, we still have unmet areas of need that means I’ll be employed for some time in the search for better treatments.

What was your presentation at NDLR about?

I shared a wonderful story about the development of a new drug called venetoclax (formerly known as ABT-199) that I’ve only been involved in for the last seven years but which started in 1984 when a protein called BCL2 was discovered. Over the 80s and 90s, BCL2 was shown to be pivotal in driving cell survival, keeping cancer cells alive inappropriately, making cancers develop and being insensitive to chemotherapy. Researchers at WEHI, in collaboration with AbbVie and Genentech, developed a molecule that selectively binds to the abnormal BCL2 protein to take out its function. I started my PhD in 2011 and together with Professor John Seymour and Professor Andrew Roberts at Peter Mac and Royal Melbourne we gave venetoclax to the first three patients in the world. We knew within hours that this drug worked. They all had dramatic and rapid clinical responses.

Describe your role in the discovery process.

I started my PhD six months before we dosed the first patient. In the laboratory, I tested CLL cells against venetoclax and they died very sensitively, suggesting the drug may be effective. I also looked at how the cancer cells were dying and found evidence this was a result of BCL2 being inhibited by the venetoclax. That’s what we call an ‘on-target’ effect. Then we gave it to a person and saw almost instantaneously that it was working. As well, using translational cells taken from these trial patients prior to dosing, then 8 and 24 hours after dosing, we could see the cells were dying via apoptosis (through the inhibition of BCL2), so we recapitulated in the lab what we were seeing in the clinic and vice versa.

How did you feel when you saw the ventoclax response in the lab?

It’s important you don’t get carried away. To me it’s… ‘ok, it works in the lab, that’s great; will it work in people?’ It was only when we gave it to the first few people, and saw their white cell counts falling from 40 to 2 in a matter of eight hours, that I allowed myself to think – ‘wow, we really might be on to something here’. I was really lucky, it was only a matter of six months from seeing it work in the lab to actually seeing it work in a person. There was also a lot of work at AbbVie to test its safety and a lot of other work by colleagues to underpin the safety of the drug.

What was your involvement in the first venetoclax studies?

Looking after patients was my main role in the early phase studies where safety is the primary consideration and end-point. Patients must be monitored really closely and often have other health issues as well. It was day-to-day medical work, made richer by the fact I was taking cells from my patients and looking at how they died in the lab in response to this drug. I’d see the patient and look at their cells in the lab, then see the patient again the next day. For me the two really played off each other, so I was hopefully better informed about my patients and how they might respond by my laboratory work, but at the same time I was being driven to do my laboratory work by seeing the patients and how well they were responding. These patients voluntarily agreed to donate their cells for research purposes. Without many patients over decades donating their cells so we could study them in the lab, we would not have these drugs. That’s something that should never be underplayed, the importance of patients altruistically donating their samples for science that has given us these new discoveries.

What was the outcome of that first venetoclax trial?

It was a very successful Phase I clinical trial. In contrast to most Phase I studies, we showed venetoclax works in about 80% of CLL patients and we can get rid of all evidence of disease in 20% of them. The way we think about CLL is radically changing as a result of this new therapy. We no longer just want to control the disease. For the first time people are wondering if we can cure CLL with tablets rather than going on to allogeneic transplant. The main side-effect we identified was that all three of the first patients who received this drug developed a complication called tumour lysis syndrome (TLS) – where cancer cells are destroyed too quickly. While you never want to see complications, for a first-in-human trial, this was both worrying and extremely exciting, and an incredibly powerful indicator that the drug was working too well. We’ve got protocols to manage the risk of TLS now and it is rarely seen.

What’s happened since?

Many patients relapse after about two years on venetoclax as a monotherapy. In the next suite of trials we combined venetoclax with monoclonal antibodies such as rituximab or obinatuzumab, or with other novel agents such as ibrutinib. Patients on combination therapy achieve deeper responses. Rather than a partial response, they’re achieving a complete response, and instead of just achieving a complete response, they’re actually clearing all evidence of disease; a state we term minimal residual disease (MRD) negative. These deeper responses correlate with longer periods before patients relapse. In some patients, we can actually stop treatment and some have enjoyed prolonged periods without treatment, where the disease has not come back. It’s starting to remind us of what happened with CML*. It’s very early days, we don’t yet have strong evidence that it’s safe or the right thing to do, but it’s something we’re starting to explore in our clinical trials.

What other areas of research are you are working on?

In the lab I’m trying to identify which patients are more likely to have good responses and also those who are more likely to have bad responses. We are doing a series of molecular tests to see if there’s a way we can prospectively identify the patients who aren’t going to do as well, and selectively target those patients for more intensive therapy. I’m also interested in trying to understand why resistance develops so we can look at targeting it more effectively. We don’t yet have a good biomarker (a laboratory test that predicts for a poor outcome) so another approach is looking at the micro-environment. CLL can sit in the bone marrow, lymph nodes and blood. There’s strong evidence that CLL in a lymph node is protected from death by any agent due to its environment. The stroma (tissue) and blood vessels help to keep the CLL cells alive and sustain them. When we look at CLL cells on an artificial stroma, in an artificial micro-environment, they are resistant to death by venetoclax. Early evidence from my colleagues suggests you can overcome this effect of the microenvironment niche by combining venetoclax with ibrutinib.

What aspect of this research excites you the most?

The thing that gets me up in the morning is finding new and better ways to help people. A few years ago I’d have to say – “I have nothing for you”. Now I’m saying to more and more of my patients – “I actually have something that can help you, a new drug, with good evidence that your disease will respond”.

What is the role of clinical trials?

They are essential and have different roles in different patient groups. When patients get to a point where there aren’t any conventional therapies, then a Phase I trial is particularly attractive. They are always ethically approved, based on evidence the drug is likely to be safe and effective. That doesn’t mean they will be and sadly sometimes they’re not. But we offer Phase I studies to people who have no other options and occasionally we find a venetoclax and we give people a prolonged period of disease-free survival. We always hope the next venetoclax is around the corner. To people asking if they should go on a clinical trial, I say: “it may help you and we really genuinely hope it does but if it doesn’t help you it will help people down the line”. Knowing a drug by itself doesn’t work is still valuable information, so we don’t use it on other people going forward. For patients on a trial, there are elements of ‘there is something in it for me’ because they might get a drug that will work, as well as altruism because they’re helping science and those people who come after them. It’s often easier to sell larger Phase II and III studies to patients where the drug has good safety evidence and a signal of efficacy. But as a basic scientist I find Phase I studies the most inspiring. They’re the ones where people are in the most need and that are bringing the next big thing to our attention.

What is the next big thing?

I think it’s going to be combinations. We’re already doing trials of combination therapies – monoclonal antibodies with novel agents, dual novel agent therapies, and potentially the holy trinity, as John Seymour puts it – two novel agents and a monoclonal antibody, or potentially down the track, even combining chemo-immunotherapy with novel agents. That’s where I think we’ll end up, with these very deep responses and potentially options of cure. There are always new drugs in the pipeline and it remains to be seen how they all fit together. A challenge is integrating evidence from lots of different trials, to find out where in a patient’s journey we should use these agents. They’ve been used traditionally in the relapsed/refractory setting but maybe they’ll be more effective in the frontline setting.

Venetoclax – a 30-year story

1984: BCL2 protein discovered

2011: First patient dosed with venetoclax

2016: Venetoclax FDA-approved in the U.S.

2017: Venetoclax TGA-approved in Australia

1 March 2019: Venetoclax listed on the PBS in combination with rituximab for relapsed/refractory CLL

“It’s decades and decades of work by very many clever and very intelligent people – chemists, structural biologists, basic science biologists, translational scientists and clinicians,” said Dr Anderson.

“It’s work at places like the WEHI and by industry like Abbvie and Genetech and in academic research hospitals like Peter Mac and Royal Melbourne.

“It’s a body of work that’s taken thousands of people, in a rich variety of backgrounds, to come to fruition.”

* Treatment-free remission is possible for many people with CML.

“Mummy’s magic medicine” has made Deborah better

“Mummy’s magic medicine” has made Deborah better

This story was first published in CLL News May 2016

The hardest thing Deborah Sims has ever done was kiss her three young children goodbye last August [2015] and move to London – hopeful of getting on a clinical trial.

“I didn’t know if I’d come back,” said Deborah from Melbourne last month [March 2016], during her first trip home to Australia since starting the trial in November [2015].

Deborah Sims and her children
In September 2015, before getting on the venetoclax trial, Deborah Sims with her children, Cameron, Natasha and Malowe, in the Hampton Court Palace gardens, London

The Phase I trial for a combination of venetoclax (Venclexta®, formerly known as ABT-199)] and obinutuzumab was considered a chance of a cure for the aggressive form of CLL/SLL she was diagnosed with in December 2011.

Back then, just days before Christmas, when Deborah took her two-year old daughter to the doctor, it was happenstance that her GP asked about her health.

She’d seen a different GP about a lump in her neck earlier that year. When she got the “all clear” for an ultrasound and blood test, Deborah got on with her busy life, forgetting about the follow-up due six weeks later.

“When my GP said, ‘I see you came in six months ago, is the lump still there?’ I said ‘yes and there are a few more too’. She examined me, gave me a hug, and asked if I had private health insurance.”

Then she told Deborah to go directly to an appointment with a haematologist. The next day she had a lymph node biopsy and the following week was told she had CLL, which is rare in someone her age. She was 38 at the time.

“It came totally out of the blue and I had the worst Christmas of my life, said Deborah. “I mourned myself for two weeks and went into my shell.”

Deborah went on ‘watch and wait’ and, expecting to have lots of time to think about treatment options, began her own in-depth research into CLL while continuing to work full-time.

“I’m a journalist and I needed information. I joined forums, subscribed to medical journals, and was referred to a number of specialists for second opinions.

“It was highly likely I’d need a stem cell transplant (SCT) at some stage in the future.

Deborah Sims and nurse Sam
Deborah and nurse Sam during her first night on the venetoclax and obinutuzumab trial

“My youngest sister is a perfect match, so I knew early that I had that option. But the more you know about stem cell transplants, the less you want one. I’m doing everything I can to avoid having one,” said Deborah, then aged 42.

“I’m always doing a risk assessment to give myself the best chance of being here to care for my children.”

This included paying for a genetic test that is not the standard of care in early diagnosis.

“I wanted to know how bad my markers were, and I have the type of CLL* you don’t want to have.”

One of her three consulting specialists talked about clinical trials and some of the drugs in the pipeline, in particular ibrutinib and ABT-199 (venetoclax).

“I did everything I could to avoid chemo and even looked at importing bendamustine from Germany.

“By October 2012 I was really sick and very tired. I couldn’t schedule afternoon meetings at work,” said Deborah.

In January 2013 she started the FCR chemo regimen.

“From the first day, I wished I’d had it (FCR) earlier. I had no side-effects apart from a sudden feeling of wellness and I responded really well.”

Three months later, even though Deborah still had a trace of residual CLL in her bone marrow it was suggested that she stop FCR after three (of six) cycles, to avoid the extra toxicity from continuing the treatment.

She returned to watch and wait, with three-monthly bone marrow biopsies, but at six months it was evident she was relapsing and her specialist talked about when she’d have a transplant.

“I was so well, and in mid-2014 was doing more research into clinical trials,” said Deborah, whose relapse was very slow.

Her appointments were extended to six months, but by her next appointment, in December 2014, she was starting to feel sick, the lumps had returned and she was losing weight.

A transplant was earmarked for early-2015 and Deborah had her hair cut short in preparation, but she needed more treatment to reduce the bulky disease prior to the SCT.

Motivated by wealthy businessman, Ron Walker’s success with Keytruda® in treating his melanoma, Deborah dipped into her superannuation fund to attend a patient conference on CLL clinical trials in the U.S. in April last year [2015]. While there she had a consultation with Professor Thomas Kipps, an international CLL expert.

“He said ‘you should not have a transplant. We are on the verge of a cure. We just have to work out what the best drug is. You need something to buy yourself some time’.”

The next day, at the conference, it was fortuitous that one of the guest speakers, Dr John Gribben from the UK, sat next to Deborah. They chatted and he told her about a clinical trial in London that would be the best possible treatment for her at that stage.

It was with ABT-199 [venetoclax], which ironically was developed in Melbourne. The only way Deborah could access ABT-199 in Australia was through a Phase III randomised trial that meant a 50% chance of getting the new drug, as the other arm of the trial was chemo.

“I’d already had chemo, so I couldn’t take that risk,” said Deborah.

She asked one of her Australian specialists – “if you were me, what would you do?” and he answered – “I’d get on a plane to London”.

“It knocked me that the best trial was 10,000 miles away,” said Deborah, who used her super again to go the UK. She had previously lived in London for 10 years, and had friends there, but getting on the trial was not for the faint-hearted.

“I had to be sick enough to go on the trial, well enough to tolerate a Phase I trial, I had to go back to work there, get a national health scheme number, and a referral to Barts (St Bartholomew’s Hospital). There was a lot of paperwork and no guarantee I’d get on the trial,” Deborah explained.

“There were only 40 places in the world for this trial – two at Barts and none in Australia which was very frustrating.

“According to my risk assessment, this could buy me a long remission and possibly a cure,” said Deborah.

She went back to work at the BBC as a freelance reporter and started writing a blog:

“When I heard the great news I was on the trial, I was so excited, it felt like I’d won the lottery.”

The first six weeks of the trial were “full on” with lots of monitoring and blood tests as the dose of ABT-199 was gradually increased until she reached the full daily dose (four tablets) in January. The obinutuzumab was given in monthly infusions that finished after six months (in April).

She has had no side-effects from the combination treatment and a CT scan in February showed she was in partial remission.

“My blood work is completely fantastic. I’m working again and going out. It’s given me my life back again.”

Deborah’s children, Cameron, 11, Marlowe, nine, and Natasha, six, and her husband, Robert, arrived in London for nine weeks in November to coincide with her starting what they call ‘mummy’s magic medicine’.

“They left at the end of January and by mid-February I wasn’t coping.”

Since January, Deborah has only needed to go to Barts one day a month. The length of the trial is three years and to stay on the trial Deborah is committed to her monthly appointment in London.

“When I get to no detectable disease I can go off the treatment although I may need to stay on ABT-199 on an ongoing basis.”

In February, she came home to Australia for three weeks. She returned to London in mid-March and is still working for the BBC. She has another flight home booked in April and while she’s here, she’ll have a bone marrow test to see if she has achieved complete remission after six months on the trial.

“I’m hoping it will show there’s very little disease left and that I’ll stay on ABT-199. I’m loathed to come off the drug. It could be the Glivec** of CLL.”

While on the trial, ABT-199 is free, but Deborah’s treatment odyssey has cost her $400,000 in lost income, flights, accommodation and living expenses. She has applied to have the drug dispensed in Australia.

* stage IV CLL, unmutated with del 6q, which is associated with more rapid disease progression.

** a daily tablet used to treat people with CML.

Expert Series interview with Professor Constantine Tam on CLL–now and into the future

Expert Series interview with Professor Constantine Tam on CLL–now and into the future

Professor Constantine (Con) Tam is a Melbourne-based expert in CLL and low-grade lymphoma whose sights are focused on curing these blood cancers. He is Clinical Lead for CLL and Low-Grade Lymphoma at Peter MacCallum Cancer Centre/Royal Melbourne Hospital and Professor of Haematology at the University of Melbourne where he teaches and supervises PhD students. Prof. Tam is the global lead for the novel BTK inhibitor, zanubrutinib, and he completed the world’s first study combining ibrutinib and venetoclax. Born in Hong Kong, he came to Australia as an 11-year-old and after completing his undergraduate degree, trained in medicine and haematology and worked at St Vincent’s, Peter Mac and Alfred hospitals before heading overseas for a two-year CLL fellowship at the MD Anderson Cancer Center in Texas (U.S.).

The latest news on CLL research are the small molecules–the BTK and BCL-2 inhibitors–and there’s a resurgence of interest in CAR T-cell therapy in CLL, says Prof. Con Tam.

Professor Constantine Tam
Professor Constantine Tam: while yet to be proven, CAR T-cell therapy “probably gave the best chance of giving someone a cure in the long term”

“There are now many studies to show that we can combine BTK and BCL-2 [inhibitors], and those combinations are tolerable and get very deep responses,” he said.

“The most recent clinical trials have shown that these drugs, as either monotherapy or in combination with an antibody, are better than standard chemotherapy.

“But I think the next generation of trials will look at whether the combinations of both a BCL-2 and a BTK inhibitor will be even better than single agents.”

He is referring to ibrutinib (Imbruvica®) and the newer generation BTK inhibitors, zanubrutinib (BGB-3111) and acalabarutinib (Calquence®), which have all been studied in combination with the BCL-2 inhibitor, venetoclax (Venclexta®).

“Adding venetoclax to the regimen gives the advantage of patients potentially being able to come off these drugs.

“At the moment, you go on the BTK inhibitor and you’re pretty much stuck on it forever, because you never clear minimal residual disease (MRD),” explained Dr Tam.

“Whereas in combination with venetoclax, it seems most people can be cleared of MRD and can potentially stop taking both drugs; take a drug holiday.

“That’s quite an exciting prospect… being able to take tablets for a fixed duration–12 to 24 months of therapy–that will clear MRD. Then, just like after having chemotherapy, having a break.

“And CLL being CLL, we anticipate that the majority will eventually relapse and will be retreated. Hopefully, it will be years before that will happen.”

CAR T-cell therapy for CLL

Dr Tam said, “the other exciting thing” is the resurgence now of interest in CAR T-cells in CLL”.

CLL was one of the first diseases to respond to CAR T-cells in early trials.

“The first major report from the University of Pennsylvania was in fact in CLL, where three patients were successfully treated with CAR T-cells, and to my knowledge they remain cured.

“The attention has shifted since then to diffuse large B-cell lymphoma [DLBCL] and ALL [acute lymphoblastic leukaemia] because they’re more urgent diseases.”

Another reason is that in CLL patients, the quality of the CAR T-cells is not as good as in DLBCL and ALL patients, due to both the CLL itself and the cumulative effects of previous therapy.

“Often the CAR T-cells don’t work as well in CLL because the T-cells are less fit,” explained Dr Tam.

Ibrutinib has been used to improve the quality of the T-cells before they are collected for CAR T-cell therapy, and Dr Tam said it was time CAR T-cell therapy was used “in a more intelligent manner” to treat CLL; not as a “Hail Mary manoeuvre” when all other treatment options had stopped working and when a patient had a lot of CLL onboard.

“Under those circumstances, CAR T-cells are probably not expected to work well,” he said.

But if, for example, for patients in stable remission on ibrutinib, the T-cells are a lot more fit and there is a lot less CLL onboard to be treated, and CAR-T cells may be applied as a ‘curative’ procedure to achieve MRD clearance and terminate the need for indefinite ibrutinib therapy.

“You might be able to provide someone with a permanent cure to consolidate a good response to some other therapy,” said Dr Tam.

In other words, use CAR T-cell therapy more effectively by using it as an earlier line of treatment.

“If trials, like the one Deb’s [Deborah Sims] on are able to show that people can get off indefinite ibrutinib therapy with CAR T-cells, then this might be quite worthwhile because CAR T-cells are expensive–$500,000 for the procedure–but that’s only about three years’ of having ibrutinib, in terms of costs,” said Dr Tam.

“And if you can have CAR T-cells, and no longer need ibrutinib, you are saving money in the long-term for the government.

“Also, ibrutinib doesn’t last forever, so you are circumventing the problem of future ibrutinib resistance and the side effects that may be associated with ibrutinib.

“These drugs are so expensive. CAR T-cell therapy is an expensive procedure and so are the drugs CLL patients are on [like ibrutinib and venetoclax].

“It may work out that this [CAR T-cell therapy] is a worthwhile thing, for both quality of life reasons and economic reasons,” he said.

The availability of CAR T-cell therapy

Dr Tam pointed out, however, that CAR T-cells for CLL are currently only available on a clinical trial.

“No government anywhere in the world has approved the use of CAR T-cells in CLL.”

Access to this immunotherapy for CLL patients depends on the nature of the trials that are open and what sort of CLL patients those trials are looking to enrol.

“In the past, they have enrolled patients with active CLL who had failed other therapy, and those trials have not resulted in such good outcomes, because these patients, like I said, had poor T-cells anyway, and quite a lot of disease to be treated,” said Dr Tam.

“The newest generation of trials is looking to consolidate an incomplete ibrutinib response, to try and convert someone who has got residual disease on ibrutinib to someone who is MRD negative.

“These trials are moving in the right direction; they’re using CAR T-cells as consolidation and as an earlier line of therapy, not necessarily frontline, but as an earlier line of therapy. I think this is an intelligent way to use this technology.”

Dr Tam said the reason CLL was not an approved indication for CAR T-cell therapy was because it was not yet proven.

“We know using CAR T-cells in just any old-fashioned CLL doesn’t produce such great response rates. They are far lower than in DLBCL and ALL, and cures are probably achieved in less than one in five people with CLL.

“That’s probably because we’re using the CAR T-cells in the wrong way. So, until we’ve proven that the CAR T-cells can be used in a more effective way, in different settings, through clinical trials, the government is not going to approve CAR T-cells for CLL.”

Dr Constatine Tam
Constantine Tam, in 2007, with a poster when he was a Fellow at MD Anderson

CLL diagnosis and treatment

Dr Tam said CLL was the most common leukaemia in the western world, with about 1000 new cases of CLL diagnosed in Australia each year.

On average half these patients would go on watch and wait and never require treatment in their lifetime. For them the disease doesn’t worsen or cause problems.

“The best thing to do is to just watch very carefully, to get a feel for the pace of the disease for the individual patients, and to wait for a better treatment to come along,” he said.

For those whose disease progresses and needs to be treated, he said access to prognostic panels that helped to define very precisely the subtype of a person’s CLL was important.

“All our patients undergo a FISH¹ study, an IgVH² mutation study, and next-generation sequencing³ to identify gene mutations, so we know which patients are not suitable for chemotherapy.

“These are patients who have p53 deletions and mutations, and we stream those patients towards clinical trials on novel therapies.

“We also know which patients are really suitable for chemotherapy. For example, there is a small subset of patients with a 13q deletion, and more importantly, a mutated IgHV status, that get FCR chemotherapy and will be cured of CLL in the long-term.

“Then we have a big group of patients where the disease is not curable with chemotherapy but who potentially may respond to chemotherapy; they’re not chemo-resistant but they’re not curable [with this treatment].

“We tend to favour putting these treatment-naïve patients on clinical trials that compare chemotherapy with a combination of novel agents, such as a BTK inhibitor and a BCL-2 inhibitor.

“For patients who have relapsed after chemotherapy, often we’ll put them on either an ibrutinib- based regimen or a venetoclax-based regimen, depending on patient preferences and the logistics of a situation.

“Ibrutinib is very easy to start, but you’re stuck on it pretty much forever, and you have to put up with the low-grade side effects forever, versus venetoclax, which is trickier to start because of tumour lysis⁵ risk, but tends to have a limited duration; in the frontline it’s 12 months, and in the relapsed setting it’s 24 months.

“It’s a question of whether you put in the work right from the start and you’ve got a difficult tumour lysis monitoring period, for a chance at a fixed duration of therapy, or whether you take the easy option, which has got less work to do in the start but treatment needs to be continued indefinitely.”

Dr Tam said CAR T-cell therapy, which is not proven and is just a principle “probably gave the best chance of giving someone a cure in the long term.”

What’s next on the treatment horizon?

Next generation “reversible” BTK inhibitors are coming online and “they are all looking quite active”, said Dr Tam.

“At the moment, all the BTK inhibitors (ibrutinib, acalabrutinib, zanubrutinib) bond to the same site on the BTK enzyme, so once you get a resistant mutation at the site where the drugs bind, you’re resistant to all the current BTK inhibitors.

“But the next generation drugs, like ARQ-531 and LOXO-305, don’t bind to that site and they bond differently.

“They look quite active in patients who have failed ibrutinib. They’re also looking quite active in themselves, and they might start to come to the frontline or may end up being used ahead of ibrutinib, if the clinical trials show that they are more effective and/or better tolerated than ibrutinib.”

“And there are new versions of venetoclax coming. It’s very hard to improve on this really good class, but we’re now starting to get new drugs within that class that overcome some of the problems with the previous class, and include drugs that are 10 times more potent than venetoclax.

The importance of clinical trial participation

Dr Tam said clinical trials were “very worthwhile” to go on for several reasons.

“From a patient point of view, when you go on a clinical trial, you’re usually seeing an expert who’s got a particular area of interest and these doctors are highly skilled in that particular disease.

“Some are early-phase trials which have a single arm, and others are randomised trials.

“Now in randomised trials, the control arm–the arm we’re comparing against–is chosen carefully as the most active treatment in that disease. So you can be assured when you go on a trial you’re getting the best available treatment anywhere in the world for your disease. Or, you might get a treatment that is even better than standard of care, on the experimental arm.

“So I think, from a selfish point of view, patients get very good medical care when they join clinical trials.

“The other thing about being on a clinical trial is that you are monitored very closely, so you get better than the usual monitoring, as well as access to new drugs that are potentially five to 10 years ahead of the time.”

But there are drawbacks and you have to be prepared to accept uncertainty, Dr Tam said.

“There’s no guarantee that the new drug on the experimental arm is better. The experts think it is, but we do the clinical trial to help us to determine whether that’s true or not.

“And sometimes you have to travel, because all the scans and blood tests need to be done at the hospital where the trial is based. That may be an issue for patients who live in the countryside and where standard therapy may be easier for them.

“The last thing about clinical trials that I often describe to my patients is an altruistic view. It is the “warm and fuzzy” feeling that by helping us do the research, you’re helping advance the cause of medicine in general.

“By participating in a trial, you’re helping us understand the disease better, you’re helping us develop the next generation of treatments, and you may be the reason why the next generation of patients gets even better therapy.

“People on a clinical trial not only get treatment that might benefit them, they were contributing to the body of knowledge that may benefit many generations in the future.”

“All the new exciting treatment we’ve got at the moment, which is doing a better job in controlling leukaemia than we’ve ever done before, with less side effects, have all occurred because previous patients volunteered their time and their trust by going on a clinical trial 10 years ago.

“There are many clinical trials and the most exciting ones are comparing chemotherapy, which is still the frontline standard of care, against combinations of new agents. Hopefully, in five years these will show that new drugs and new drug combinations would do a better job of treating CLL frontline than chemotherapy.

“And that might effectively end chemotherapy as we know it.”

That’s Dr Tam’s holy grail; to develop a permanent natural, meaning nonchemotherapy, solution with treating CLL. To work out a way that the immune system not just controls but is a cure for CLL for all patients.

“That is an achievement I would be extremely proud of. It’s probably 10 years away. I might be out of a job!”

¹ Fluorescence in situ hybridization (FISH) analysis is the single most common cytogenetic abnormality in patients with CLL.

² The immunoglobulin variable region heavy chain (IgVH) gene encodes antibodies that function in the immune response.

³ Next generation sequencing (NGS), massively parallel or deep sequencing, are related terms that describe a DNA sequencing technology which has revolutionised genomic research.

⁴ FCR regimen is a combination of fludarabine, cyclophosphamide, and rituximab .

⁵ Tumour lysis syndrome can occur as a complication during the treatment of cancer, where large amounts of tumour cells are killed off (lysed) at the same time by the treatment, releasing their contents into the bloodstream.

Self-care and honesty vital for dads living with blood cancer

Self-care and honesty vital for dads living with blood cancer

This Father’s Day, and every day, we’re celebrating brave Aussie dads like Bill Kuluris, who are living with a blood cancer while also being a key provider and rock for their families.

Bill Kuluris with family
The Kuluris family (L-R): Lord Toby, Katie, Belinda, Bill, Madeline and Lady Lucy

Father of two, Bill has been living with a blood cancer called chronic lymphocytic leukaemia (CLL) since 2016.

“I remember it clearly; I had gone to see my doctor as I do every year for my annual check-up.

“This was just prior to my wife, Belinda heading on her annual overseas trip and I thought nothing of it until her return when I received a text message from my doctor to come in,” remembers the 51-year-old.

“I had an appointment shortly after where he broke the news to me that I had CLL.

“It was a fair shock; I’d obviously heard of leukaemia but hadn’t heard much about the chronic type.”

Bill called Belinda to meet at a local café straight after the appointment to process the diagnosis; “I was obviously still in shock, but Belinda was straight onto it making sure I was ok.”

Telling the kids

Breaking the news to their young daughters, Madeleine, now 20 and Katie, now 16 was even tougher on the couple.

“That was probably the hardest thing, they were both just 16 and 13-years-old at the time and we had only just lost my own father to prostate cancer,” said Bill.

“I remember that day very clearly – we sat them around the kitchen bench and just told them, ‘Dad’s got leukaemia, it’s a type of blood cancer’.”

“Their facial expressions changed completely, and we had to back-track quickly saying how it was entirely manageable and we were only really telling them to keep them in the loop.

“Kids will often be the first to pick things up when something is wrong, so we wanted to make sure we were honest with them and they knew before the rest of our family and friends.”

Anxious for answers

Living in a small rural town called Moama in southern New South Wales, Bill was facing a six month wait to get reviewed by a specialist.

Anxious for answers, Bill instead sought a referral to a CLL specialist in his old hometown of Geelong, Victoria where he had worked as a nurse.

“Thanks to Belinda, I got in within a couple weeks and I actually knew the specialist from when I worked in the hospital,” explained Bill. “We have a really wonderful and comfortable relationship,”

“He walked me through how people living with CLL can still lead very full and happy lives and more times than not you will die from something other than the blood cancer.

“I was put on ‘watch and wait’ as my cancer is stable for the moment and I will just continue to have six-monthly check-ups and blood tests down at Geelong to monitor my levels.”

Accessing support

While life goes on for Bill, the burden of living with a chronic blood cancer can still weigh heavy at times and he has accessed support through the Leukaemia Foundation.

“As nurses, my wife and I are always telling our own patients the importance of accessing help should they need it and the many wonderful services that are available,” said Bill.

“I took my own advice just after my diagnosis and rang the Leukemia Foundation where I was put on to my own Blood Cancer Support Coordinator.

“That’s really helped me along the way to find my feet and feel comfortable with the fact that I could be living with this disease for the rest of my life.

“I think I would’ve been completely lost without that additional support and guidance.

“I obviously have amazing support from my friends and family but the Leukaemia Foundation staff have that specialised understanding of the disease and that neutral voice that can help keep you grounded.

“I’ve also attended Leukaemia Foundation support groups at Shepparton in Victoria and another small town close to Moama called Echuca.

“It’s great to talk to others going through the same thing and connect on how everyone is managing their blood cancer.”

Hosting Light the Night

Bill has also hosted the Moama-Echuca Light the Night event for the past few years, enjoying the chance to give back to the blood cancer community.

“The whole family gets involved, my daughters’ school help to get volunteers and with the fundraising,” said Bill.

“They have a whole bunch of friends come along on the day and help me in the lead up.

“It’s also a fantastic way to get the community together. Belinda and I previously managed a hotel in Moama so we have great contacts and networks to get the fundraising going.

“It’s held right on the river there that marks the border of New South Wales and Victoria.

“The lantern ceremony is always really special, and we all walk over the bridge and then back again acknowledging those conquering blood cancer in not just one, but two states.”

Due to the COVID-19 pandemic, the family will be taking part in Light the Night at home this year.

“We will be participating ‘COVID-19 style’, most likely at home around our fire pit and hopefully we can have some family and friends around.”

“Belinda has also put in a great effort making a number of face masks during August for our Light Night fundraising this year,” said Bill.

“They were all sold out in a day and we asked people buying the masks to donate to our Light the Night fundraising page.”

Advice for other dads

Bill is now firmly focused on the future, keeping an eye on his health to be there for his family and he encourages other dads to do the same.

“I know for many blokes, health and going to the doctor can often become a last priority,” said Bill.

“Who knows what could’ve happened if I hadn’t made that annual check-up, I would still be living in ignorance and not managing my blood cancer.

“You need to think of your family first and foremost and make sure you’re healthy for them.”




“Trev is still looking after me” says Pauline

“Trev is still looking after me” says Pauline

Trevor and Pauline with their dog
Pauline and Trevor with their beloved dog, Harry: “We loved him so much. He was so special to us.”

Had Pauline Vedelago been told, 3½ years ago, that she would no longer have her husband, dog, house, job, or live in Bundaberg, she would have said, “are you crazy?”.

“My life was so different 3½ years ago,” said Pauline, 58, who is retired, volunteers two days a week, and writes to her late husband every night, telling him about her day.

While there are many blood cancer success stories, unfortunately there also are stories where treatment is unsuccessful, the disease mutates, and in the end, devastatingly, there are no further options.

Sadly, this happened to Pauline’s husband of 31 years, Trevor Boyd, a teacher-librarian whose prognosis was “pretty good” when diagnosed with non-Hodgkin lymphoma (NHL) in May 2017, aged 55.

Over the next 2½ years, the couple, went back and forth from their home in Bundaberg to Brisbane, for tests and treatment.

Pauline and Trevor in hospital
Pauline with Trevor in January 2018 after his admission to hospital for his stem cell transplant

Trevor’s determination to beat blood cancer

When Trevor didn’t respond to his first or second lines of chemotherapy, he had an autologous stem cell transplant in January 2018, which his haematologist said gave him the best chance of a long-term good outcome.

After six weeks in Brisbane for the transplant, and being told that Trevor looked to be “in the clear”, they went home, but not for long, because an infection in Trevor’s Hickman line turned out to be serious.

“It was called mycobacterium fortuitum, which always made me laugh because I thought it doesn’t feel very fortunate,” said Pauline, so back they went to Brisbane for another month for round-the-clock intravenous antibiotics.

Finally, the couple returned home and glimpsed normal life again – camping together, catching up with friends, exercising regularly, and Pauline started her social work again, part-time.

“Life was starting to look good,” she said.

Trevor was in remission and he went back to work for the last six weeks of the 2018 school year.

“Trev led a very quiet life, very similar to what people do now, really, socially isolating. Any friends who were coming over, we’d make sure they were all well and kept their social distance,” said Pauline.

This year, when coronavirus started, Pauline said it felt really familiar: “This is what we used to do all the time. It felt like history repeating itself”.

Towards the end of 2018, Trevor started to feel unwell. He had fevers and fatigue and assumed it was a virus he’d picked up from the school kids, but after a month, when he didn’t get better, his GP suggested another round of scans.

Pauline and Trevor after Trevs knee surgery
The Boyds, in January 2017, after Trevor had knee surgery and just months before his diagnosis

Another relapse and two different diagnoses

On his 57th birthday, on December 29, he got the news. He had a mass on his lung and within days the Boyds were back in Brisbane. Trevor was diagnosed with a different blood cancer – chronic lymphocytic leukaemia – and started a new regimen of chemo. Soon, however, scans showed that it wasn’t working.

Miraculously, a new drug (venetoclax) had been listed on the Pharmaceutical Benefits Scheme that week, which Trevor started immediately, combined with another immunotherapy, not yet approved in Australia, and which cost the couple “several thousand dollars”.

Then, genetic studies revealed that Trevor had “a really bad mutation, c-myc, which doesn’t have a good prognosis”. An allogeneic stem cell transplant was his only option. Disappointingly, none of his three sisters was a match, and he was running out of time to find a matched unrelated donor.

Next, he was told he actually had Richter’s transformation; a disease that looks like NHL but is “something much worse” because it constantly mutates, and CAR T-cell therapy in the U.S. would give him the best chance of survival, providing he was accepted on to a clinical trial in Seattle.

“If we got the okay, we had to go right away, and have a spare half a million dollars!” explained Pauline. But first they needed passports, urgently, at $500 each.

“Mine had expired and Trev hadn’t had one for 20 years.”

They also were in the middle of selling their home in Bundaberg.

Trevor and Pauline in Adelaide
Trevor and Pauline holidaying in Adelaide

“We just thought, ‘oh well, we can do that’. We’d borrow money from everyone and anyone, get our super, and pay people back.

“That’s the kind of pressure you’re under. I thought I was going to go mad. I could barely cope,” explained Pauline.

“When we had the relapse in January 2019, I couldn’t cope… I had a real little meltdown.

“Trev was really tough, and he was stoic all the way through, but I started to fall apart.

“I got myself together, went to counselling, went to my GP, started antidepressants… because I’m a social worker; I know what you’re supposed to do to look after yourself.

“I thought, all right, I have to be like Trev, to be strong. We just have to keep going.”

Leukaemia Foundation support

Pauline had been in contact with the Leukaemia Foundation and one of our blood cancer support coordinators, Sheila Deuchars.

“Sheila was great. She put us in touch with some Australians who were over there [in the U.S.] at the time doing the same thing and we had been in contact with them.”

But, at the last minute, Trevor was told he wasn’t eligible for the American trial because his disease was mutating.

“That was so disappointing, but we were still hopeful,” said Pauline.

“Trev was writing to professors all over America to see what trials were coming up that targeted the CD20 mutation.”

Then, another miracle, a clinical trial was starting… in Brisbane! Trevor just had to have all the tests and tick all the boxes, which he did. He was eligible, and the trial paid for their travel and accommodation expenses.

“Fantastic, we could fly to Brisbane instead of driving or taking the train,” said Pauline.

Trevor started the trial in August [2019] but, after six weeks, he’d had “absolutely no response”.

“That’s when we had the big conversation with the specialist,” said Pauline.

“He said, ‘we’ve thrown everything at it… you might as well go home and make your end-of-life preparations’ blahdy blah, but there was still one option, ‘we could try high dose chemo as a last resort. Go home and think about it’.

“I knew Trev was never going to give up. He was going to keep fighting. That’s the way he had to go.

“He still was feeling pretty well, still working around the house and gardening.”

Pauline said her worst fear was that Trevor would go to 4W, the hospital ward for people on high-dose chemo, and be transferred to 4A, the palliative care ward.

“For three years, on and off, I’d look at that ward. My sister who died of cancer in 2013 had been in that ward,” she said.

When Pauline suggested they go on the Ghan, “something we’ve always wanted to do”, his response was ‘no, I can’t go on a holiday. I won’t enjoy it if I’m not fighting for my life’.

“I said to him, ‘of course, I’ll support you, whatever you decide’.”

Trevor started high dose chemo in September [2019] and had radiation as well.

“It was pretty awful, just one nightmare after the other, in October, November, until early-December when it didn’t work,” said Pauline.

“Trev was in hospital all that time. I just wanted to be with him, I didn’t want to be anywhere else.

“We were so grateful for the Leukaemia Foundation. I took up Sheila’s offer of a unit at Herston. It was so lovely. I’d get the bus in [to the hospital] in the morning, I could stay as long as I liked, and get an Uber at night to come home. It was so easy.”

It was Pauline’s 58th birthday on December 10, “we got some lovely photos”, and Trevor died eight days before his 58th birthday.

“While all that was happening, we sold the house, and the contract was a story in itself!

“Harry, our dog, died too last year, in April. We had to put him down. We loved him so much. He was so special to us because we don’t have children.”

When Pauline spoke to Living Well With Grief, six months after Trevor’s death, she said it “was wonderful” living in a granny flat that adjoined Trevor’s sister’s house in Brisbane, for the time being.

“I’ve been on my own, but not really alone. I’ve got contact with family, but without feeling like I’m in the way,” said Pauline.

“I appreciate the support and having someone who cares whether you get up in the morning, because so often I just didn’t see the point.

“But every day I’ve got out of bed, because Trev’s sister and her husband have been so lovely to me, I don’t want to worry them about anything.”

Pauline and Trevor on Paulines birthday
Pauline Vedelago celebrating her birthday with Trevor in their Leukaemia Foundation Unit at Herston, eight days before he died

Grief support there when needed

Since Trevor’s death, Pauline has been supported by Shirley Cunningham from the Leukaemia Foundation’s grief and bereavement team.

“I said to Shirley, ‘I’m the perfect client. I’ll do everything right to try and get through this. I’m not going to let it beat me’.

“But I still feel really sh*t, so that’s why I’ve come to counselling. I had my first appointment about two months after Trev died and I knew I wasn’t doing too well, and it was really lovely talking to Shirley.

“I was a social worker for 30 years. I’d never done grief counselling but thought I understood grief a bit. When my sister died, I thought, ‘okay, this is how it works, this is pretty sh*t, but okay, and when Trev was diagnosed, and then when I knew he wasn’t going to make it, I thought I was prepared.

“But you know, losing the person that you love most in the world, nothing really prepares you for that.

“One positive thing about cancer is that Trev and I had plenty of time together to say all the things you want to say, and I’m very appreciative of that, but it certainly doesn’t prepare you for the depth of grief you feel afterwards.

“Trev was really organised, making sure our super was good, so financially, I’m quite comfortable.

“We had grey nomad plans. We’d done a few three-month camping trips around Australia and we were just going to do more of the same… four-wheel driving.

“I do find that hard, letting go of the life that you thought you were going to have.

“It’s just accepting that things have to change. It’s trying to be mindful, trying to live in the present rather than focus so much on longing for the past.”

Pauline said she has experienced a loss of identity: “I was a social worker, but I’m not. I was married, but I’m not. I used to live in Bundaberg, but I’m not. I used to have a house, but I don’t.

“I used to be married, but now I’m a widow. I’m thinking, well, who am I? Who am I without Trev?

“I had a good chat to Shirley about regression, which I’d read about.

“You are stripped back to your most vulnerable self. I felt like I was in my teens again for quite some time. I felt so vulnerable. I didn’t want to talk to anyone, I didn’t want to go out.

“Then I did this complete about-turn. I became the Academy Award recoverer, where you say to everyone, ‘I’m fine. I’m going okay. Oh, not too bad’.

“I did that for a couple of months, because you want them to think you’re okay. You want them to think well of you, that you are recovering.

“I said to Shirley, ‘you’re the only person I’m crying with these days and I don’t think that’s good. I’m just covering up all the time’, so we had a good chat about that and what I should do.

“Grief is a very weird thing. I realise now why you do certain things and I’m very normal. The book I’m reading now is The Year of Magical Thinking which is about the difficulty you have with emotional acceptance.

“I was there when Trev died, but you still have so much trouble accepting it and you still think maybe somehow they’re still alive. I’d wake up in the morning thinking Trev was still alive.”

Making a new life

Pauline has decided to stay in Brisbane, plans to buy her own home there, and is putting things in place.

She has started going to church again and says, “I do have a faith, I do believe in an afterlife, and that has helped”, has become more active in her yoga practice, and has started bike riding with her brother-in-law.

She regularly sees her two brothers who live in Brisbane and has reconnected with a few friends, including an old uni friend she hadn’t seen for 30 years. And Simone, who she met when her husband Pete was sitting beside Trevor during chemo, has become a good friend.

Pauline had always wanted to “do something with people who care for wildlife” in her retirement and due to some divine intervention, she is volunteering two days a week at a koala sanctuary, which is helping her to “just be in the moment”.

And she’s started a journal.

“I’ve found journaling very helpful. At first, when I was just so miserable, I kept writing about how terrible I felt, and I didn’t know if that was helping. Then I received a random text from someone that said, ‘remember the joyful times you had with Trev’, and I thought, that’s what I need to do.

“So, every night I made sure that at the end of my journal writing, I’d write down a happy memory and thank Trev for that. Sometimes that was really hard, but I did that for months.

“And now I don’t do the happy memories anymore, I just do gratitude now. I’m still writing to Trev, but I finish with things that I’m grateful for that happened during the day,” said Pauline.

“I do believe Trev is still present in some form, in some way, and is still looking after me somehow. And I just figured, well, this is my way of communicating with him.

“I don’t think I’ll keep writing to him for the rest of my life, but I’m determined to keep going with it for this year.”

Pauline and friends kayaking Coonarr Creek, Bundaberg for Trev’s tribute paddle
Pauline and friends kayaked up Coonarr Creek, Bundaberg for Trev’s tribute paddle in March 2020

A tribute to Trev

Back in Bundaberg, Pauline used to kayak with a group of women, and one time Trevor joined them.

“One of my friends suggested it would be nice to have a paddle tribute to Trev, which I thought was a great idea.”

The tides were checked, a date was set, and Pauline went up to Bundaberg for the weekend.

“We ended up with 13 people and two dogs, and I decided to take half of Trev’s ashes for a little ceremony.

“Bundaberg ginger beer was Trev’s favourite drink before he went off all sugar, and I put half of his ashes in six Bundy ginger beer bottles, one for each of his best mates, and me, which we carried upstream to a lovely, quiet place.

“I thanked everyone, then they picked up their bottles and I put his ashes in the creek.

“I was so happy I did that and again, divine intervention, it was at the beginning of March, only a couple of weeks before coronavirus kicked in, and I thought, ‘oh, Trev, you’re looking after me’.”

Pauline wanted special mention made of how grateful she and Trevor were to the Leukaemia Foundation, “for everything they helped us with”. In particular, the practical support of “those two months when I lived in the Leukaemia Foundation unit”.

“I’m a regular donor now and I’ll be making a bequest in my will when I redo it again. And I’ve registered for Light the Night.”

Breaking barriers: At the table with best and brightest

Breaking barriers: At the table with best and brightest

Deb Sims with her family
Deb Sims with her family

This year is the tenth Blood Cancer Awareness Month and Deb Sims shares her story to help us mark this important awareness month. Deb has blood cancer and is also a member of the Blood Cancer Taskforce.

I moved back to Australia from London in 2006 and, in 2011, was diagnosed in Melbourne at the age of 38 with a blood cancer called chronic lymphocytic leukaemia (CLL) and given five years to live. The average patient is a 72-year-old man. My children were aged only seven, five and two at the time.

I had chemo in 2013, relapsed as doctors said I would, and was about to have a risky bone marrow transplant when I discovered there was a trial of a new drug which I could get onto if I moved back to the UK.  My youngest child was in prep and I had to kiss her and her older brothers goodbye and fly to London.

I stayed there for seven months with the children visiting me in school holidays.  That treatment put me into three years of clinical remission with no detectable disease, but I had to commute to London to stay on the clinical trial for two and a half years after my doctors allowed me to move back to Australia in early 2016.

The first year was monthly flights. I’d leave Melbourne on a Tuesday afternoon arrive in London on a Wednesday morning, go to Barts Hospital, do the tests for the trial, pick up my drug and then fly back to Australia on the Thursday morning arriving back in Melbourne on the Friday night.

I did 10 flights to London in a year.  After that it was every three months for another 18 months so it was still difficult. I cried when I was able to get the drug in Australia and stop commuting.  That drug was invented in Australia at the WEHI in Melbourne and wasn’t even approved by the US Food and Drug Administration when I started it. It’s now on Australia’s Pharmaceutical Benefits Scheme (PBS) .

I came off that novel therapy just after I had the honour to start working on the Blood Cancer Taskforce. In fact, three of my doctors are on the taskforce with me and it’s incredible to be at the table with Australia’s best and brightest blood cancer experts.

And I’m living the work we’re doing: I’m now on another novel therapy that was only listed on the PBS last year and I’m about to become one of the first patients with CLL in Australia to have CAR-T, a highly experimental and expensive but potentially curative treatment for my disease.

I go into hospital next week (September 2020).  This is my fifth line treatment.  It won’t be easy but we’ll know if it has worked by mid October.

The treatment I’m about to have is another first-in-human study and only five centres in the world are offering this trial. The Peter Mac in Melbourne is the only hospital outside of the US to be offering it thanks to the funding the hospital received to set up a centre for CAR-T a year ago.

I strongly feel it’s my role as the patient representative on the taskforce to make sure all blood cancer patients, no matter where they live, have access to the right treatments for them at the right time.

We must also make sure every patient knows about clinical trials and is able to have the opportunity to get on them. We’re fortunate in that we get so many of them in Australia.

I also believe we can close the gap in outcomes and eliminate unnecessary deaths to blood cancer and that’s why I’m so proud of what the taskforce has achieved so far but this is just the start. After we release the National Strategic Action Plan for Blood Cancer the work begins to implement our recommendations. I hope I’ll be able to help with that, too.

I’m a journalist, working full time, as well as home schooling, and the whole Covid-19 experience has actually made me feel safer than ever before because everyone around me is taking precautions. Although I’m ready to stop being locked down now (and so are my children and the rest of Melbourne I think)!   They’re 16, 13 and 10 now and I’ve outlived my prognosis by five years.

I’m hoping that scientists and my doctors will help that continue for many years to come.

Leigh’s story: living well with chronic lymphocytic leukaemia

Leigh’s story: living well with chronic lymphocytic leukaemia

A simple mosquito bite and unexplained swelling led to a trip to the GP for Leigh. The unexpected news that followed in mid-2013 saw Leigh diagnosed with chronic lymphocytic leukaemia (CLL) at the age of 25.

Four rounds of chemo later, Leigh was back to normal and had two years without any treatment. Then, amazing news, she was pregnant with her first child after previously and unsuccessfully going through IVF. But only a few weeks later, she found out the cancer was returning. It was a difficult time as she was treated with blood transfusions until her beautiful, healthy daughter was born at 34 weeks. Just five days after the birth she started an oral treatment for CLL and is now feeling well and enjoying life with her family.

Leigh is positive about the future and is looking forward to one day seeing a cure not just for CLL but every type of cancer.

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

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

Connect with our support team

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