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Saving lives from lymphoma

Saving lives from lymphoma

Dr Karthik Nath
Dr Karthik Nath

Dr Karthik Nath has been awarded a Leukaemia Foundation and Haematology Society of Australia and New Zealand (HSANZ) PhD grant to better understand and improve treatments for follicular lymphoma (FL).

Dr Nath, a haematology advanced trainee at the Mater Research (Brisbane), will be working under the supervision of Professor Maher Gandhi to investigate why 20% of patients with FL have early disease progression.

Dr Nath’s research will focus on identifying those patients who are more prone to early relapse, and developing alternative treatment options to improve their chances of survival.

“Currently there is no definitive way to identify these patients at initial presentation,” said Dr Nath.

“The central tenet of my research with Prof. Gandhi is to expand upon existing prognostic models in FL by integrating how one’s immune system reacts and responds to the lymphoma.

“We also hope to incorporate the genetic mutations within the lymphoma into the development of a new prognostic scoring system.”

New follicular lymphoma treatments

Dr Nath hopes to uncover something new that will be useful for clinicians and have a real impact on the investigation and management of everyone with FL.

“We hope our findings will not only be shared within the academic scientific community, but also incorporated into routine practice worldwide,” said Dr Nath.

He said funding was the biggest research hurdle for any clinician-researcher and he counts himself fortunate to be a 2018 PhD scholarship recipient.

“Without this grant support, it would have been challenging to pursue my research ambitions. I hope we can repay the contribution through the benefits we discover in our research.”

Dr Nath is well-placed to embark on the project with past experience in malignant haematology observational studies, studying the incidence and prevalence of haematological cancers, and research into autologous stem cell transplantation.

“Haematologists are ideally placed to take advantage of and contribute to rapid advances in both basic scientific and translational research within the field,” he said.

“I can see a patient in the clinic, review and report on their bone marrow biopsy in the lab, and subsequently come back to the patient with the results and discuss a management plan.

“The laboratory training also provides us with a much deeper understanding of the illnesses we manage in the clinical setting.”

Dr Nath is itching to get going on the project and make a valuable contribution to the field.

“We are currently in the process of collecting samples and have begun some preliminary analysis in the lab,” said Dr Nath.

“It will be extremely satisfying to bring fresh insights and answer some of the core questions about FL.

“It is exciting to be part of this diverse and rapidly expanding field.”

When he’s not working on improving the lives of patients with FL, Dr Nath enjoys travelling and keeping active.

“I recently got into running and find it a great way to keep fit, keep my mind clear, see nature, and even catch up with friends,” said Dr Nath.

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

Growing stronger but taking nothing for granted

Growing stronger but taking nothing for granted

Lyn Chiozzini relaxing with a cup of tea
Lyn thought she might have low iron; she didn’t think it could be blood cancer.

Born and bred in Far North Queensland, Lyn Chiozzini’s leukaemia diagnosis meant leaving behind loved ones for months of treatment in Brisbane.

Working in a local cafe, Lyn, 54, thought frequent trips home to nap were simply a sign of getting “old and tired”. Suffering from chronic rheumatoid arthritis, she was used to having regular visits to the doctor. But when her blood tests started showing her neutrophils were steadily dropping to a dangerously low point, she was sent to the haematologist.

“I just thought perhaps it was anaemia or low iron levels. Cancer didn’t even cross my mind,” she said.

“My husband, Gino, came with me to the appointment and we were in total shock when I got the diagnosis.”

Blood cancer diagnosis

Lyn was diagnosed with acute myeloid leukaemia in October 2015 and her treatment began in Cairns.

During her first round of chemotherapy, Lyn contracted pneumonia. She then spent three days in intensive care after developing a lung infection. After her third round of chemotherapy, Lyn and Gino were sent to Brisbane for a stem cell transplant.

All Lyn’s family, including two children and four grandchildren, live in Moresby, a small town south of Innisfail, but she says Gino was there for her “every step of the way”.

“Fortunately the Leukaemia Foundation gave us a lot of information about what to expect and organised accommodation for us at their Herston Village, near the Royal Brisbane and Women’s Hospital,” Lyn said.

“It was so overwhelming when we arrived. It was such a huge hospital and everything felt so unfamiliar.”

Stem cell transplant

None of Lyn’s four siblings were a match for the stem cell transplant so a 39-year old American man became her unrelated donor. Following her transplant, Lyn enjoyed a relatively smooth recovery and spent only 15 days in hospital.

“Don’t get me wrong, I got very sick during the chemotherapy leading up to the transplant. I was warned the melphalan would knock me around, and it did!” Lyn explained.

Lyn says fatigue is still the most prominent side-effect of her cancer but she knows she is growing stronger each day.

“I have been given a second chance at life and I’m not taking that for granted. I’m grabbing it with both hands.”

AML: “It was a real rollercoaster”

AML: “It was a real rollercoaster”

Clinton and his sons
Clinton and his sons

“It doesn’t matter what disease you have – if you manage to get up in the morning you’re already miles in front.”

Clinton has lived by this mantra ever since his acute myeloid leukaemia (AML) diagnosis in February 2017.

The shocking diagnosis came after spending the 2016 Christmas period in a constant state of fatigue and breathlessness.

Clinton knew it wasn’t down to the excitement of a Santa visit or eating too much turkey, but something more sinister.

“I was out walking with my dad in January, and I said ‘sorry mate, I’m done’. And I just started vomiting and dropped to my knees. I had blood tests on the Tuesday. On the Wednesday my doctor told me it was leukaemia – I could tell he thought I didn’t have long when he told me the diagnosis. It just devastated us.”

A business owner based in a regional Queensland country town called Nebo, Clinton’s first thought was where do we stay when my treatment will be 1,200 kms from where we live?

The answer came when Leukaemia Foundation support staff visited the family in hospital offering help.

“We ended up staying at ESA Village for the next 8 months while I got treatment involving a heap of chemo and then the bone marrow transplant.”

“It was a real rollercoaster during that time, I almost didn’t go through with the transplant,” says Clinton.

“They said I had no chance without it but I just wasn’t willing to have my family put their lives on hold for me.”

It took blood cancer support staff Maryanne and Amanda (below, with Clinton) from the village to convince Clinton to go through with it.

“Maryanne said to me ‘they want to be there for you – so let them. You would do the same for them. Without those two girls I wouldn’t be here,” says Clinton.

Clinton, Maryanne and Amanda
Clinton with Maryanne (left) and Amanda (Right) from the Leukaemia Foundation

It’s only because of your help that Maryanne and Amanda can be there for people like Clinton, in their dark times of need. Clinton credits them, and you, with saving his life.

The family were able to head back home at the end of 2017 after Clinton completed his 100 days post-transplant.

“Being back home with my partner and two boys, Jaxon and Cruz, has just been awesome.

“I get to spend a lot of time with the little guy Cruz as he’s not at school yet which is lovely.

“The older of the two Jaxon was there when I had the transplant and stayed with me 14 hours a day during treatment. He comes to every blood test and just been my strength throughout the whole thing.

“Every second Friday I will go have a blood test and check in with my doctor who keeps a very close eye on me.

“I take an anti-rejection transplant drug,” explains Clinton. “I’m slowly trying to wean myself off that though as it dampens your immune system so I’m often sick with a cold or flu.”

“The hardest part is dealing with your anxiety anytime you get a little bug like that. It’s probably just a common cold but it’s a very similar feeling to how I was leading up to my diagnosis.

“When I’m constantly breathless, puffing and having to stop for a rest I do worry it could be the leukaemia coming back.

“AML floods your body with white blood cells not allowing for the red blood cells, which carry the oxygen, to produce. So basically you’re being suffocated.

“I have had a lot of side effects from the chemo too. I have no feeling in my extremities, all my fingers are all pins and needles, and sometimes I’ll grab a glass and smash it because I grab it too hard or drop it because I don’t grab it hard enough.

“I can’t open bottle caps yet, I’m doing strengthening exercises to build up my strength again, because 9 months laying in a hospital bed does nothing for your muscles,” says Clinton.

Despite the challenges, Clinton maintains a positive but realistic outlook for the future.

Clinton and his family
Clinton and his family

“You’ve got to keep in mind that 26% of people who go through a bone marrow transplant only make it to 5 years so the odds are still stacked against us.

“Every time I see my doctor I ask him how the research is going but he says the nature of AML makes the research really complex.

“I’m just hoping the progress they are making with the other strands of leukaemia will give us some answers.

“You have just got to keep thinking positive and don’t let your life be ruled by that fear of relapse, but enjoy the time you do have here with your loved ones.

“I don’t have a goal like wanting to be successful or earn a million dollars – I just want as much time as possible with my family and be able to be there for my kids.”

Josh ‘hit cancer on the head’ to get family home

Josh ‘hit cancer on the head’ to get family home

Three years after starting treatment for leukaemia, Josh Sullivan is back to working the family farm – a 6000 acre wheat, sheep and canola property – and life is pretty much ‘back to normal’.

Except that the impossible happened… Josh and his wife Tegan welcomed baby Luca, a sister to Jaydn, six, and Jai, four.

“My doctor said it would never happen, certainly not within four years,” said Josh, 34, who had a stem cell transplant in August 2012.

Josh Sullivan and familyIt was earlier that year that Josh and Tegan were taking over the family farm, 35 km from Esperance (WA), when Josh was diagnosed with AML.

“All of a sudden I started feeling crook. I felt really flat, had no energy and quite a few flu symptoms,” said Josh. “I went to the doctor who said it was just a bit of stress but after the third doctor visit I thought ‘stuff it’ and took myself to hospital to ask for a blood test.”

Within an hour, Josh got a call from the hospital doctor and he was to go straight to hospital in Perth. Arriving at 7.30pm, Josh checked himself into Emergency, had a bone marrow test later that night and was placed in quarantine so he knew something was going on.

Tegan flew up the next morning and was with Josh when he was given his diagnosis. Josh was in the average to poor group and, while it was hard, he decided to ‘hit it on the head’.

“When I was diagnosed, the Leukaemia Foundation followed the doctor in the door,” said Josh. “Within a few days we knew we had somewhere to stay, so we didn’t have to think about that.”

The Sullivan family spent the next nine months in the Leukaemia Foundation’s Bassendean apartments, free of charge, as Josh had three rounds of chemotherapy and a transplant.

“It was absolutely wonderful. We couldn’t have asked for any more than they (the Foundation) gave us,” said Josh. “Tegan was able to drive in to the hospital to see me every day and I’d come out of hospital to a clean environment.”

Josh said his first round of chemo “did the job” although he spent five days in ICU and “nearly died”.

He got through, luckily, and went into remission just three weeks after diagnosis and then after his second round of treatment, he went home for the first time.

“It was wonderful to get back to the farm. I’m not a city person,” said Josh, who returned to Perth to begin his third round the day after his 31st birthday in mid-May.

The family again returned home for six weeks before Josh had a matched unrelated bone marrow transplant in August. A similarly aged man from Germany was the chosen donor and the transplant went well with Josh experiencing only some mild graft versus host disease in his mouth and liver a month after.

In October 2012, Josh and his family returned home to the farm where Josh ‘pottered around’ and for the last 12 months he has been doing everyday things, working from sunup to sundown most days.

“I feel magnificent. I have so much drive now,” said Josh. “All I want to do is work, to be a successful farmer and a good dad. I absolutely love farming – it’s always what I’ve wanted to do – and it’s a great lifestyle for the kids.”

Josh says the love and support of his wife, family and friends is what helped him through and he could never thank any of them enough.

Leukaemia: It left our family in pieces

Leukaemia: It left our family in pieces

Kiaan and his family in the hospital
Kiaan (far left) was diagnosed with acute myeloid leukaemia

“It was one of the hardest moments of our lives. We will never forget the way he looked at us, it was as if he was asking us ‘why are you doing this to me?’

On the day Nidhi and her husband Raj were set to celebrate the birth of their son, their three-year-old, Kiaan was diagnosed with blood cancer.

Their whole world instantly plummeted into darkness as they were told their beautiful brown-eyed boy had an aggressive blood cancer called acute myeloid leukaemia.

“Through the sadness and grief we didn’t know how to respond. The walls shattered.”

“You never think the worst will come true,” said Nidhi. “It is very hard to receive that shocking news. You don’t want to accept it.”

“Kiaan’s platelet count was so low that if he had fallen over at daycare and hit his head, he would have died.”

Kiaan in hospital
Kiaan in the hospital

“As a parent it is your worst fear to have your child diagnosed with cancer. We cried and we asked why? We talked about it and how we could fight it. We weren’t going to let blood cancer beat us, but we needed help.”

Kiaan and Raj were flown from their home in Canberra to Sydney Children’s Hospital where Kiaan immediately started chemotherapy. Nidhi stayed in Canberra where she gave birth to Rohan.

Leukaemia Foundation support

“Soon after Kiaan was diagnosed, we were introduced to Sally who is a Leukaemia Foundation Blood Cancer Support Coordinator. She was the reason we were able to keep going.

“She gave us important information about leukaemia, she explained the Centrelink process and the Leukaemia Foundation provided us with free accommodation while Kiaan was in hospital. We live 300km from the nearest treating hospital and we needed somewhere to stay. The Leukaemia Foundation made a huge difference to our lives.”

There are few people who understand what it is like to have a child facing a potentially life-threatening disease. The range of emotions that come with a cancer diagnosis as a parent are enormous.

There are hundreds of families going through the same heartbreak as Raj, Nidhi, Kiaan and Rohan. Sadly, many more children will be diagnosed in the future and their parents will have to endure the roller coaster of emotions.

There are many different pieces of support that families living with a blood cancer need. You can give families devastated by a blood cancer diagnosis, a person to talk to, a place to call home, and information which will guide them through complex treatment options. 

Introducing ReadSpeaker

Introducing ReadSpeaker

We spoke to people about their experiences during treatment and they told us it was common to have difficulties with concentration as well as reading and information retention (often called ‘chemo brain’). To help, we’ve installed ReadSpeaker on our disease information pages, as well as most of our services pages and patient stories.

ReadSpeaker is a text to speech service which allows people to listen to our web pages as well as online documents (PDFs and Word documents) such as our disease information booklets. It’s not only useful for people who are affected by chemo brain, but also for people who have low literacy, vision impairments, English as a second language, or who just prefer to listen to our content rather than read it.

ReadSpeaker works whether you’re on a desktop computer or laptop, smartphone or using a tablet device.

Using ReadSpeaker

To activate ReadSpeaker, simply click on the listen icon (see image below) at the top left of the page

Read Speaker Listen icon

If you only want to hear part of the page, select the text you wish to have read aloud then click the floating listen icon or the “play” button (1 and 2 in the image below) then wait a couple of seconds for your selected text to play. The “play” button only appears for a few seconds after you highlight the text, if you miss it, try highlighting the text again or just use the listen icon.

Downloading audio files

You might like to save a file so you can listen to it later. ReadSpeaker allows you to download the audio as an MP3 file for personal use only. To do this, click on the listen icon, then click on the download button.

Translating text into other languages

If English is not your preferred language, you can highlight text and read or listen to a translation from the options available through Google translate. Please note that the Leukaemia Foundation cannot verify translated text and bears no responsibility for translations using Google translate.

To translate into languages other than English, highlight the text you wish to translate, then click on the options tab (1) and select languages (2). Select your preferred language from the options available, then read the translation or click the play button to hear the text.

Read Speaker example

Other features

ReadSpeaker has a number of other features available through the options menu. These include:

Settings button Read SpeakerSettings: change the speed of text, highlighting, font size and other settings.

 

Read on Hover buttonRead on hover: hover over a paragraph you wish to read. An alternative to highlighting text.

 

Enlarge text buttonEnlarge text: enlarge the text as it is read to enable you to more easily follow what is being read.

 

Translations buttonTranslations: see section on translating text into other languages.

 

Word lookup buttonWord lookup: highlight a word then click this button for a definition. Note that this function uses a number of external web sources and the Leukaemia Foundation cannot verify or be held responsible for the definitions provided.

 

Help buttonHelp: more information about these different tools and keyboard navigation and access keys for people with a vision impairment.

Leukaemia changed everything

Leukaemia changed everything

“Jacob won’t stop asking when he can go to school”

At just four years old Jacob has showed more strength and resilience than many of us do in a lifetime, beating leukaemia not just once but twice.

In early 2016, Jacob’s mum Earlene noticed the then two year old was getting a lot of bruises, looking very pale and tiring much faster than his brother and sister.

Jacob, happy and smiling after his treatment
Jacob, happy and smiling again

While taking him for his flu shot Earlene expressed her concerns to the GP who felt it was serious enough to send them to hospital, one hour’s drive away from their home in Blackwater, Queensland, for blood tests.

“Things moved so quickly from there,” remembers Earlene, “Suddenly they’re talking about us flying to Brisbane the next day, and I was there with my three kids thinking, ‘What’s happening?’”

 

After a sleepless night not knowing how long they would be gone, Earlene and Jacob got on a plane to Brisbane, leaving her husband Don to care for their other young children, Matthew and Erin.

“I was just praying there had been a mistake,” says Earlene. “That someone had got the blood tests results wrong. That they’d tell us we could go home.”

At the same time – deep inside – she was preparing herself for the worst.

Jacob was diagnosed with acute myeloid leukaemia (AML), a rare type of blood cancer that can be difficult to treat successfully.

“I just had no idea how we were going to survive being so far from home and with another two children to care for.

“When we were offered accommodation support by the Leukaemia Foundation we were so relieved and seeing the village for the first time we were blown away by the beautiful facilities.

“Don, Matthew and Erin made the 8-hour drive down to join us, we were so happy we were going to be able to stay together and just focus on supporting Jacob.”

Thanks to your support, the family stayed at ESA Village for the duration of his treatment, a total of 8 months, with Jacob undergoing numerous rounds of chemo and then the critical bone marrow transplant.

Luckily, Jacob’s brother Matthew was a 100% match and a suitable bone marrow donor.

“The hardest days were the ones Jacob had to remain in isolation post-transplant,” explains Earlene. “He was stuck in that hospital room for nearly 3 months and was only able to wave to Matthew and Erin through the door.”

“He was a different child during that time. For a mother there is nothing worse seeing your child struggle and have their spirit taken away like that.”

The transplant was seemingly successful and the family were able to return home after Jacob had recovered.

Jacob (far left) with his siblings, Matthew and Erin.
Jacob (far left) with his siblings, Matthew and Erin.

But their joy was short-lived with a blood test just a week later showing the leukaemia had returned.

It was back down to Brisbane for Earlene and the three children with Don having no choice but to remain in Blackwater to work and support the family.

“The relapse was devastating, but we took comfort in knowing the Leukaemia Foundation would be there for us again,” says Earlene.

“You just don’t understand how much that support means to people like us – it’s everything at a time when all you can think about is getting your child well again.”

Earlene and her family are so grateful for your generosity that helps families like theirs stay together in these difficult times. And for Jacob, having his brother and sister by his side helped get him through the long months of scary treatment.

Jacob went through the same gruelling treatment regimen receiving his second bone marrow transplant from his brother Matthew.

The family returned to ESA Village for another 8 month stint.

“Erin basically grew up here. She calls the village, ‘small home’, and big home is in Blackwater,” laughs Earlene.

This time the treatment looks to have stuck and the family have been back in Blackwater since May.

“We were thrilled to be able to come home and be back with daddy, the most important thing is getting the kids back into a routine and making sure we spend as much time as possible together as a family,” says Earlene.

Earlene and Jacob still have to travel down to Brisbane every few weeks for blood tests.

“I try not to let the anxiety get to me but already having relapsed once before it just makes your mind go crazy with the possibility that it could return,” says Earlene.

“We always make sure to drop into the village when we are down and the Leukaemia Foundation has been so generous in getting us short-stay accommodation when we are in Brisbane for blood tests.

“The support staff at the village know how to calm me down in the lead up to the test, the girls are so comforting and make sure we are well looked after.”

For now Earlene is keeping a close eye on Jacob.

“We are just staying around home while the flu season passes. I’m much too nervous yet to let him out playing with a lot of other kids.”

“But Jacob is lucky to have his brother and sister who love him just as much as they annoy him,” says Earlene.

“He is starting to find it hard I think though as he sees his big brother going to school so asks when he can go.”

“In the New Year hopefully he will be well enough to go and he can start doing the things that any other typical 4 year old boy wants to do.”

From clinical trial to remission

From clinical trial to remission

John Rogers and his wife, Margot

Dr John Rogers is one of the first Australians with chronic lymphocytic leukaemia (CLL) to successfully stop treatment on a venetoclax clinical trial. Two years later, he’s still in remission.

At the start of the trial, just hours after having his first dose on 9 July 2013, John noticed a response.

“I knew by feeling the glands in my neck that it had an effect,” said the now retired geneticist and psychotherapist, 77, of Melbourne.

Six months later his bone marrow was clear of CLL.

“It was great news but I wasn’t officially in remission until 19 February 2016, when there was no evidence of enlarged lymph nodes on a CT scan… my lymph nodes had been as large as 10cms each!”

John stopped treatment on 29 March 2016 – two years and nine months after going on the trial for a combination of venetoclax (called ABT-199 at the time) and rituximab.

His original start date for the trial was in mid-December 2012 but at the last minute there was a seven-month delay.

“I was due to start on the Monday and on the Friday [before] they suspended the trial… two people on the trial had died in North America, from tumour lysis syndrome,” said John.

His initial reaction to the suspension was distress but also pragmatism.

“There was nothing I could do about it.”

Lymphoma diagnosis

More than 20 years earlier, John had been diagnosed with lymphoma and treated with high dose chemotherapy. It was an experience that changed his life.

“Having a lymphoma gave me the courage to do something I had always been keen on doing,” he said.

“I had a strong interest in grief and loss and life-threatening disorders,” said John, who had previously worked with Elizabeth Kübler Ross*, training as a staff member in her workshops.

He decided to resign from his position as director of Clinical Genetics at the Royal Children’s Hospital and started training as a psychotherapist. Then he divided his time, working in private practice with a special interest in psycho-oncology, and in genetics at the RCH.

“I learnt two lessons from having lymphoma. One was the ability to say ‘no’ and the other, to be more pragmatic about life and live each day as it comes.”

He had six-monthly follow-up blood tests and in 2002 the results showed an elevated lymphocyte count, which turned out to be CLL.

“They were watching me at that stage. Then in 2010, we thought it was necessary to have some treatment due to the large glands in my abdomen.

“I was offered fludarabine but was concerned about how sick it was going to make me. I preferred a gentler approach and had a course of the old fashioned treatment, chlorambucil, for several months.”

Venetoclax clinical trial

John’s next treatment was a monthly infusion of rituximab which he had for a couple of years until it stopped being effective.

“The glands in my abdomen keep enlarging and I looked nine months pregnant,” said John.

He had low dose X-ray therapy to his abdomen in November 2012. This made it a little easier for him to breath and he was “worked up” at the Peter MacCallum Cancer Centre for the venetoclax trial with “blood tests, a bone marrow test, CT scans and heart scan”.

“I realise how fortunate I have been to participate in a trial with such an outstanding outcome, REMISSION,” said John and he describes venetoclax as “quite miraculous”.

“This was an oral drug that was easy to take and, compared to CHOP2 which were intravenous drugs that made me very sick, it was amazingly simple,” he said.

“And it was quite interesting because I started at 20mg. John Seymour came and gave me the tablet.

“When he came around again at the end of the day, he asked, ‘what do you think?’

“I said, I think the glands are softer. He felt my neck and said ‘I think you’re right’.

“The next day I went from 20mg to 50mg and it was clear that it had an effect even at that very low dose. I suppose I have the advantage of being a doctor – I knew by feeling the glands in my neck.”

Over three weeks, John’s daily dose was gradually increased to 400mg before he began having monthly rituximab infusions for six months, and in 2015 his venetoclax dose was reduced to 300mg, based on the results of more studies.

“The trial had its own demands involving time and travel to Peter Mac. Participating was easier as I am retired,” he said.

Stopping blood cancer treatment

John’s decision to stop treatment almost three years ago was made in conjunction with Dr John Seymour.

“I looked at the figures. There was not a lot of information. About 11 people in the world had stopped the treatment at that stage. Not all were in remission. Some had stopped because they couldn’t tolerate it or didn’t want to continue.

“There was a small handful that had stopped and I was reassured that if the CLL reoccurred I could recommence the treatment.

“I can’t say I felt confident, but I thought it was reasonable to stop, and I stopped cold turkey.

“I’m still part of the trial and every three months I go back to Peter Mac for a review and blood test (which I have a few days before the review).

“They’re carefully monitoring how things are going but that’s all remained normal.

“After the last blood test I am still officially in remission and have no enlargement of lymph nodes clinically. I’ve stopped having CT scans. I was having them every three months but eventually they decided that was unnecessary,” said John who is enjoying life.

“I do some reading, some writing, pick up grandchildren from school, try and keep fit, walking and swimming. I enjoy film, theatre, classical music, time with friends and overseas travel and holidays.”

Last year John and his wife, Margot, pictured, took one of their four grandchildren, Sam, to Central Australia.

“We promised we’d take him when he was 10 and we got there a week before his birthday.”

Clinical trial information

“I think there’s nothing to fear in a trial. You have to be prepared to do the work and comply with the things they want you to do,” John said.

“I had to keep an accurate diary of the time I took the venetoclax tablets each day and the food I had for breakfast. This was not difficult and my visits to Peter Mac reduced as the trial proceeded.

“At the beginning of the trial, frequent attendance at hospital was necessary. I was an inpatient for a few days as it was the start of dose escalation and they took blood every four hours so they could monitor me closely.

“You need a bone marrow biopsy to go on the trial and bone marrows are done at various times afterward. The way they were done, they were never a problem.

“CT scans are so quick and easy and even though you have contrast media with them, they also are no problem. Blood tests could be a challenge as my veins are bad from previous chemo. It was necessary to find the best blood collector!

“The follow-up, at one level, is simple. I don’t think anybody should be put off by the investigations they will have along the way.

“Having a strong, supportive partner makes the journey easier.”

Harley’s lymphoma tumour shock

Harley’s lymphoma tumour shock

Harley Royce and his family
Harley and his family were able to stay at the Leukaemia Foundation’s Stirling Cross Apartments during his treatment.

A week before Christmas, Harley Royce was admitted to hospital after a wayward jump from his daughter caused his appendix to burst.

A routine biopsy then revealed Harley had Burkitt’s lymphoma, an aggressive and fast-growing form of lymphoma that presents as a rapidly enlarging tumour.

“During the month between getting my appendix removed and my first PET scan, the tumour had grown from nothing to the size of a softball,” explains Harley.

“There were no warning signs, I only started getting symptoms at the end of January with really bad pains in my abdomen and terrible back aches from the tumour pushing on my spine.”

The diagnosis was a big shock to the whole family who live in country town Geraldton, a five-hour drive north of Perth, where Harley needed to receive life-saving treatment.

“I just burst into tears and a million questions ran through my mind,” remembers Harley’s wife, Jess.

Lymphoma treatment

With three young children, 7-year-old Adelaide, William, 5, and 1-year-old Belle, having to uproot the entire family to Perth seemed daunting – but necessary considering treatment could take up to six months.

“My first thought was that Harley would not be going through that gruelling treatment by himself. We all needed to be there to support him. My second thought was how the kids would cope with the changes from the chemo; I just think it would’ve scared them to only see him every three weeks, it would be too big a shock,” says Jess.

Thanks to its supporters, the Leukaemia Foundation’s brand new Stirling Cross Apartments had just opened, with Harley and his family among the first occupants. “I just couldn’t believe these apartments existed. I kept asking the staff  ‘you’re definitely not going to tell me it’s time to go after four weeks’ and they just said ‘this is your home for as long as you need it’,” Jess explains.

“The Leukaemia Foundation team made it as easy as possible: Kelly came around every two weeks to see how we were doing and I could message her whenever I wanted.

“I basically spent those first two weeks in tears, overwhelmed by the kindness and support we were shown by basic strangers. I just want to thank everyone who supports the Leukaemia Foundation; what you did for our family is unbelievable.”

Chemotherapy

After six months and six rounds of gruelling chemotherapy for Harley, the family was able to return home to Geraldton. Harley is confident the treatment has worked its magic and is feeling stronger every day.

“Because of the nature of Burkitt’s the cancer cells don’t just lay dormant in the system, they will present pretty rapidly and if it had come back I would be feeling it by now,” says Harley. “We’re just waiting for my final PET scan in October, which will give me the all clear.”

Since returning home the family is keen to support others who find themselves in a similar situation.

“When we first got back, our friends kept asking to fundraise for us but we both said ‘we are happy for you to fundraise but please do it for the charities who helped us, like the Leukaemia Foundation’,” says Jess.

“We wouldn’t have got through the last six months without other people’s donations to the Leukaemia Foundation, we wouldn’t have had access to those incredible services, and we wouldn’t have had a home – I can never thank you enough!”

Position Statement: Glyphosate

Position Statement: Glyphosate

The Leukaemia Foundation’s CEO Bill Petch said the Leukaemia Foundation had been closely monitoring the issue of glyphosate for many years. It accepts the position of the APVMA as the Australian regulatory body, however, as the last review was undertaken in early 2017, we encourage the APVMA to provide a current assessment of potential risk.

“We believe the issue of glyphosate now requires further review and we encourage the APVMA to undertake further scientific-based research and provide to the public all evidence of the safe use or efficacy of glyphosate in both domestic and commercial situations,” Mr Petch said.

Mr Petch said the Leukaemia Foundation had now expressed its concerns to Federal Health Minister Bridget McKenzie.

“We support a scientific approach to regulation that ensures all agricultural chemical products are thoroughly and independently assessed.

“We want to ensure Australia’s regulatory body, the APVMA, has access to the latest science around the use of the chemical glyphosate, and that it has provided the Australian public with the latest, independent and science-based information available.”

The Leukaemia Foundation encourages Australians who work with the chemical in both domestic and commercial situations to take the recommended health and safety precautions, including wearing relevant Personal Protective Equipment (PPE) that meet Australian standards. In cases of domestic use, the Leukaemia Foundation suggests exercising caution and common sense and to follow the safety instructions listed on the product packaging at all times.

We are monitoring any links between glyphosate and blood cancer.

Each year in Australia around 4000 people are diagnosed with a type of non-Hodgkin lymphoma. Non-Hodgkin lymphoma is not a single disease; there are in fact more than 30 different sub types which are broadly divided into the following two main groups:

  • B-cell lymphomas – arising from developing B-cells
  • T-cell lymphomas – arising from developing T-cells.

B and T-cell lymphomas are cancers of the lymphatic system. The lymphatic system forms part of the immune system. It contains specialised white blood cells called lymphocytes that help protect the body from infection and disease.

Lymphomas arise when developing B and T-lymphocytes undergo a malignant change, and multiply in an uncontrolled way. These abnormal lymphocytes, called lymphoma cells, form collections of cancer cells called tumours, in lymph nodes (glands) and other parts of the body. Common sub types of non-Hodgkin lymphoma include:

  • Diffuse large B-cell Lymphoma
  • Follicular lymphoma
  • SLL/CLL
  • Mantle cell lymphoma
  • Burkitt’s lymphoma
  • Cutaneous T-cell lymphomas
  • CNS lymphoma