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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

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.

Julie’s story: living well with chronic lymphocytic leukaemia

Julie’s story: living well with chronic lymphocytic leukaemia (CLL)

It was a shock when Julie was diagnosed with CLL 17 years ago. She didn’t need treatment at the time and was on ‘wait and see’ for 11 years until she needed her first round of chemo and two years after that, a follow up round.

Just three years ago Julie developed a mass that needed a very strong round of chemo – that helped for a while until she was facing the prospect of a bone marrow transplant. Instead she went with an oral therapy that was on offer and has so far avoided a transplant.

Julie enjoy holidays, walking and her pooch! With her bloods holding their own, she is also able to do volunteer work for the Leukaemia Foundation. Family, friends and staying positive is what helps her get through. In Julie’s words “Think positive, don’t give up, life is too precious!”

The Leukaemia Foundation is there to support people, like Julie, 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.

Jackie’s story: living well with chronic lymphocytic leukaemia

Jackie’s story: living well with chronic lymphocytic leukaemia

In April 2010, Jackie was diagnosed with CLL. She had been walking up same hill for 30 years but suddenly couldn’t get up it without stopping – that’s when she decided to go and see her GP and got the news she had leukaemia.

It was awful shock for her at the time but she didn’t panic because she felt well and knew she would get through this thing. Chemo was the next step, which went well, and kept it at bay for another five years before making the move to a daily oral treatment which has been working for her the last three years.

Jackie can do pretty much everything now, including travels throughout Tassie in her motorhome, and won’t let CLL spoil her life. Her advice for others – “The best way to cope is to own the disease – manage it yourself and stay as fit as you can”. Jackie is looking forward to living her normal life, just the way she planned before leukaemia.

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

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

Connect with our support team

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

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Addressing knowledge gaps in immunoglobulin therapy

Addressing knowledge gaps in immunoglobulin therapy

Dr Khai Li Chai is working to improve the prevention and treatment of infection in blood cancer patients with antibody replacement therapy.

Khai Li Chai
Dr Khai Li Chai

Dr Chai is a specialist clinical and laboratory haematologist based at the Transfusion Research Unit at Monash University (Melbourne). She was awarded a PhD scholarship from the Leukaemia Foundation and the Haematology Society of Australia and New Zealand (HSANZ) in early-2020.

Working with Associate Professor Zoe McQuilten and Professor Erica Wood, her project, Immunoglobulin therapy to prevent and treat infections in patients with blood cancers: who, why, when and how? will evaluate the evidence base, current practise and clinical outcomes of immunoglobulin therapy.

People diagnosed with CLLnon-Hodgkin lymphomamyeloma and those who have undergone an allogeneic stem cell transplant, frequently develop low immunoglobulin (antibody) levels (hypogammaglobulinaemia) due to their disease or as a result of treatment.

In hypogammaglobulinaemia, low levels of antibodies can be associated with serious and/or recurrent infections. Immunoglobulins made from donated blood products and containing vital antibodies can be given to patients to help keep infections at bay.

New technologies, plus an increased understanding of the immune system, mean scientists and clinical teams now have the capacity to create detailed immune profiles of individual patients. Dr Chai will analyse these immune profiles to better understand the capacity of an individual’s immune system to fight off viral and bacterial infections.

She hopes this analysis will help identify new immune markers that can be used to guide and monitor optimal dosing and duration of immunoglobulin therapy. This approach will identify high-risk individuals who may benefit from ongoing treatment and those who are at lower risk and can come off treatment sooner.

“We know that people with blood cancers are at increased risk of infection,” explained Dr Chai.

“As clinicians, we often administer antibiotics and antibody replacement therapy to reduce this risk. A lot of what we do requires more up-to-date information.

“My project goals are to reduce this knowledge gap and ensure that the therapy we provide is not only effective, but safe and sustainable for the future.”

While she enjoys treating patients working as a clinician and pathologist, being able to learn and delve more deeply into the field of research and contribute to better understanding blood cancers is very important to Dr Chai.

“The main thing I want to achieve with my research is to produce findings that make a significant impact in delivering individualised therapy – sustainable therapy that is able to support improved quality of life for people living with blood cancer,” she said.

“The beautiful thing about research is the unpredictability of each day.  

“It can range from reviewing patients in hospitals, examining samples in the laboratory, teleconferencing with other researchers across the world, learning and discussing new concepts in biostatistics and epidemiology with other students at university, or learning more effective ways of performing literature searches from the librarian.

“Each new day brings new learnings, challenges and skills.”

Dr Chai is most excited by sharing and presenting her research findings to her peers.

“We do this virtually now, and we will do this in person again soon,” she said, during the COVID-19 restrictions.

“It is a great feeling to find out that your research is supported and respected by your peers.

“I thank the Leukaemia Foundation, HSANZ and everyone who has made this funding possible for giving me this opportunity.”

Bruce has found his pot of gold – acalabrutinib

Bruce has found his pot of gold – acalabrutinib

Bruce Wood and family
Bruce Wood, centre, with his family last Christmas, from left, Luke, Emily, Belinda and Ella

Bruce Wood chose to delay starting chemotherapy last year while he “desperately waited” for an international CLL study to open in Australia for the targeted therapy, acalabrutinib (Calquence®).

When it became available, he was quick to sign up and was the first patient in Adelaide to join the Phase III acalabrutinib trial, ASSURE.

The utilities project coordinator, 56, of Adelaide, was “over the moon” at having access to this new second-generation BTK inhibitor, and it was well worth the wait.

He describes acalabrutinib, the tablet he started taking in November 2019, “as very effective” and he has had “almost nil” side-effects. Within the first six weeks his spleen had reduced from 21cm below his lower rib (very large) to normal size, and now his platelets and haemoglobin counts are back to normal.

Bruce Wood and his wife, Belinda Wood
Bruce Wood and his wife, Belinda Wood

Seven years of watch and wait

Bruce was on watch and wait for seven years following his diagnosis with CLL in late-2012, at the age of 48. The blood cancer was picked up when a routine prostate awareness blood test showed his white blood cells were slightly elevated. He was called in for further tests, then informed he had CLL.

“It was certainly a blow,” said Bruce, whose twin brother had been diagnosed with acute myeloid leukaemia earlier that year and passed away in 2013.

The advice Bruce received after his CLL diagnosis was “just go on the watch and wait process and try and live without thinking about it pretty much”.

“It’s always in the back of your mind but without any symptoms, still reasonably fit and working full-time, it didn’t really change my life at all,” he explained.

Educating himself

At the time, Bruce knew “nothing at all” about CLL.

“I got some very basic info from my GP and one or two calls early on from the Leukaemia Foundation helped with information,” he said.

“Then, I’m a bit of a researcher, so I spent a lot of time on the internet, reading blood cancer journal papers from around the world.

“I was always looking into the disease itself and what’s the best way to go forward.

“I watched a video one day from an American CLL specialist. He said – and it’s always stuck with me – the most successful CLL patients are the ones that have a smart specialist, and educate themselves from day one.

“I talked to specialists, to find out who knew the most and who were considered the best in Australia,” he explained.

“I was referred to a very good haematologist in North Adelaide, who I saw for a year or two, then decided after doing a lot of reading to visit a haematologist/professor that specialises in CLL, in Melbourne.

“I flew over for an initial appointment, and then back for a potential trial enrolment.

“The trial he thought would suit me, based on my situation and markers, was the ACE trial. It had two arms; FCR*, and acalabrutinib with two other drugs.

“Then I found out this same trial was opening in Adelaide, so he referred me to the haematologist at Flinders I’m seeing now.

“I didn’t end up going on the trial. It’s a long story,” said Bruce, who went through “the whole trial process”.

Bruce Wood with furniture he made
Bruce Wood with his labour of love – a blackwood tallboy

This involved CT scans and having 22 vials of blood taken and sent overseas for testing. Then, right at the end, he was randomised to the FCR arm, “the drug you could get anywhere”.

His decision not to have FCR

Based on what he had learnt, Bruce had already decided not to have chemotherapy (FCR), so when asked if he wished to proceed with the [ACE] trial, he declined.

While on watch and wait, Bruce had “done a whole lot of tests” and this genetic and molecular testing showed his CLL had NOTCH1 mutations and unmutated IGHV status.

“These markers suggest that chemo doesn’t give a long remission,” said Bruce.

“I was looking to go on a trial, and hopefully it would be soon, because my numbers were increasing reasonably quickly.

Accessing acalabrutinib on a trial

“I had done a lot of research on ibrutinib [the first BTK inhibitor], that had been available in the U.S. for some years, with very good results. Acalabrutinib wasn’t available off the shelf and the only way to get on it was to enrol in a trial.”

Bruce had talked to his haematologist about the ASSURE acalabrutinib trial, but it wasn’t until 12 months later that it started recruiting.

“That was a period of treading water,” said Bruce, and by mid-2019 his health was deteriorating.

“I was concerned because I’d been waiting a long time and I was getting sicker and sicker.

“I probably should have been on treatment six months before starting this trial. If it hadn’t opened when it did, I would’ve had to do something rather than choose to do nothing.

“It was a very difficult time. My options were closing fast and pointing to having to start chemo,” said Bruce, but he knew he couldn’t go on the trial if he had a pre-treatment.

“My spleen was huge, almost the size of a football. It was full of CLL cells and I could only eat half-size meals. My platelets and haemoglobin were dangerously low, and I was at a point where something had to be done,” said Bruce.

Bruce Wood and his EH carBruce Wood and his EH car
Bruce heading out in his EH

Then, in November, he got the call that the trial had opened, and he successfully enrolled in the treatment-naïve group, one of three cohorts**.

“This is a particularly good trial because it’s only a single arm, there’s no placebo. If you qualify, you get acalabrutinib as a single tablet taken twice a day.”

When Bruce started taking the drug his white blood cell count was around 250. It then shot up to 400 over the first couple of months as the CLL cells in his organs were released into his blood and then excreted. His white blood cell count gradually slid down over the next few months.

“I think I’m sitting somewhere around 70 at the moment, which is high, but not 400.”

Acalabrutinib received a positive recommendation from the Pharmaceutical Benefits Advisory Committee in April (2020), which Bruce said was “fantastic”.

“For people in my situation, with the same markers, I think they should be given the option to avoid chemo at all costs,” said Bruce, who had contributed to the Leukaemia Foundation’s submission to the PBAC in February 2020.

Despite acalabrutinib’s future availability through the Pharmaceutical Benefits Scheme, once listed, Bruce will stay on the four-year trial.

“There’s more testing and closer contact with the specialist and that has always been important to me. So, it’s good for me and it’s beneficial for everyone with CLL as well, to find out just how long these drugs work.

“There’s been resistance in previous trials with ibrutinib over some years. That’s what they are looking at for acalabrutinib, to see how we go long-term. When you compare ibrutinib and acalabrutinib side by side, acalabrutinib has far less side-effects. It’s a much easier drug to take and still as effective.”

Bruce takes his two acalabrutinib tablets 12 hours apart, at 7am and 7pm each day.

“I don’t ever go off it, and because I don’t really have any side-effects, it’s not a hindrance on how you live. It’s like taking a blood pressure tablet.

“I’m really happy to be included on the trial.

“I was always wondering whether something would be approved that was frontline, to avoid FCR; that was my goal.

“I saw venetoclax approved, but only as second treatment for relapsed CLL I think.”

Bruce Wood and his newborn granddaughter
Bruce with his brand new granddaughter, Lilly Wood, who was born in February 2020

Life is steadily returning to normal for Bruce 

“The first few months on the trial were a fair bit slower than normal. I was a bit of a lounge person and wasn’t very active because I was quite ill.

“I struggled to push the wheelie-bin to the gutter when I was not feeling the best,” he said.

“It takes a bit of time to recover when your blood counts are as low as mine. But for the last month or two, I’m pretty much 80% of what I was before I was feeling ill.

“This COVID thing has made a few things complicated. BTK inhibitors can play with your immune system a bit and the CLL does that anyway. My immune system isn’t as good as it could be, so I’ve got far more risk of some complications with this virus,” said Bruce, and he has applied added precautions against contracting it.

His employer “has been really good” and Bruce was given a few months off work to “stay home and focus on getting well, to give the drug the best chance of doing the job”.

“So that’s what I did which was important. The main risk being a secondary infection from being exposed to industry and lots of people.

When Bruce spoke to CLL News, in April 2020, he had just returned to full-time work.

“I’m working from home and have pretty much zero face-to-face contact,” said Bruce, and that includes socially distancing from his wife, Belinda, and their 15-year-old daughter, Ella.

“We’ve split our house into two areas. We’re lucky enough to have a couple of bathrooms and Belinda and Ella come and go from their area.”

Bruce Wood with daughter Ella and their dog
The Woods have two boxers and here’s Bruce and Ella with the youngest, Bailey

As he has recovered, Bruce has returned to his creative pursuits. A fitter and turner by trade, he has made a beautiful blackwood bedroom suite which he describes as a labour of love, and he tinkers with the old Holden EH he’s restoring.

What he no longer spends much time doing, now that he’s on the trial, is researching CLL.

“I found the pot of gold I was looking for,” he said.

* FCR: a chemotherapy combination of fludarabine, cyclophosphamide and rituximab.

** The other two cohorts: people with relapsed/refractory CLL; and those who had prior Bruton tyrosine kinase inhibitor (BTKi) therapy.

Decisions from the March PBAC meeting for CLL/SLL

Decisions from the March PBAC meeting for CLL/SLL

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

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

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

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

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

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

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

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

“People want choices,” he said.

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

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

Acalabrutinib for r/r CLL or SLL

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

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

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

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

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

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

Venetoclax/obinutuzumab combination as a first-line treatment

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

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

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

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

Making personalised care possible

Making personalised care possible

A new personalised service for people living with chronic lymphocytic leukaemia (CLL) has launched.

Wayne Clark
Wayne Clark benefited from the Cancer Concierge program

In Australia approximately 1300 people are diagnosed with CLL each year but around two-thirds are not calling for help.

So we launched a project to understand what people with CLL go through and how they can be better supported, sooner.

This project has now led to a new, personalised program called Cancer Concierge.

Cancer Concierge works with the individual to understand their experience with CLL and provides support throughout the challenges of the disease so they can live better with the condition.

Wayne Clark (pictured), diagnosed with CLL a decade ago, took part in the project.

“I really enjoyed being a small part of the committed team that worked on the project which will allow the growth, development and provision of wider support to people with CLL.”