ContentsBGB-3111 results encouraging 2

First national CLL survey 2

Venetoclax trial shows promise 3

New drugs access booklet 5

Complementary therapies in CLL 6

What’s on near you 8

In September last year, before getting on the trial, Deborah Sims with her children, Cameron, Natasha and Marlowe, in the Hampton Court Palace gardens, London.

“Mummy’s magic medicine” has made Deborah better

Story continued on pages 4 & 5.

got the “all clear” from 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.

“I joined forums, subscribed to medical journals, and was referred to a number of specialists for second opinions.”

“It came totally out of the blue and I had the worst Christmas of my life, said

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

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

The Phase I trial for a combination of venetoclax (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

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.

“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, now aged 42.

CLL news.For people with CLL or SLL & their families

May 2016 | www.leukaemia.org.au | 1800 620 420

Early clinical data on BGB-3111 encouragingEarly results from a Phase I clinical trial using BGB-3111 – a new treatment for relapsed CLL – shows the drug is well tolerated and effective as a single-agent therapy.

BGB-3111 is a second generation BTK inhibitor. It blocks the signalling pathway that leads to growth inhibition and cell death in malignant B-cells.

Dr Constantine Tam, consultant haematologist at Peter MacCallum Cancer Centre and the study’s principal investigator, presented initial clinical data on BGB-3111 at the American Society of Hematology annual meeting in the U.S. last December.

Based on preclinical and clinical data, Dr Tam said BGB-3111 has the potential to have a better safety profile and tolerability than ibrutinib and a better quality of response that enables higher doses and more frequent dosing that could result in a more sustained response.

“It has produced rapid and durable responses as a monotherapy in different types of B-cell malignancies,” said Dr Tam about the trial, which so far has 113 people enrolled. The target is 235 participants.

“Phase I expansion is at 160mg twice a day and 320mg daily, with good tolerance and good responses.

“The question is if it is better than ibrutinib? We don’t have the comparative data to tell.

“While ibrutinib is well tolerated, this drug (BGB-3111) has the potential to be better tolerated because it’s more selective for BTK and doesn’t hit other off-target enzymes.

“So far our results have been very good. Patients have had good responses, but we need more patients to tell. More encouragingly, we’re getting drug levels far in excess of ibrutinib.

“So we’re now getting to very high doses of BTK inhibitors with what seems like very mild side-effects, suggesting that when you have a drug that’s very selective and able to hit the target very accurately, you can give very high levels of the drug and not have many side-effects.

“What we don’t know is whether hitting

the target (BTK) harder will result in patients having even better results from treatment. Only time will tell,” Dr Tam said.

Once the safe dose level is ascertained, BGB-3111 will be used in larger Phase II and Phase III studies to compare it against the best available therapies.

“At the moment, ibrutinib is a wonderful drug but there are some potential problems in terms of bleeding, atrial fibrillation and other side-effects,” Dr Tam said.

“Maybe it is hitting other enzymes rather than just BTK, so we are hoping to develop a drug that can more accurately target BTK so you don’t get some of those side-effects.”

Dr Tam said there is hope that in diseases such as mantle cell lymphoma or Waldenström’s macroglobulinaemia, where people have responded well to ibrutinib, but where complete remissions are rare, they’ll do better on BGB-3111.

“Maybe by hitting the target harder, you can get even more effect from the drugs, thus maximising the effect of BTK inhibitors as a class of drugs – that’s where we hope to take this.”

Dr Tam said a second study, combining BGB-3111 and obinutuzumab, is currently enrolling, and a third study, of BGB-3111 and BGB-A317 (a PD1 inhibitor), is seeking ethics approval.

First-ever national CLL surveyThe National CLL Survey is about to open and you are invited to take part.

This is the Leukaemia Foundation’s first Australia-wide study to explore the experiences of people living with CLL.

It is designed to help the Foundation understand the physical, emotional and social experiences of people affected by CLL, according to Head of Blood Cancer Support, Anthony Steele.

“It inquires about their quality of life, the Leukaemia Foundation support services they utilise and value, and additional support services they require,” said Mr Steele.

Information gathered from this survey will be used by the Foundation to improve the services it provides and to advocate for improvements in the health system to provide better overall support for people with this form of blood cancer.

The survey findings report will be presented by the Leukaemia Foundation at relevant conferences and events around the country.

The survey can be completed online at www.surveymonkey.com/r/CLL_survey or please contact your Leukaemia Foundation blood cancer support coordinator on 1800 620 420 or Anthony Steele on asteele@leukaemia.org.au.

The survey closes on 30 June 2016.

Just Briefly2

Up-to-date info readily available on all Australian clinical trialsThe ClinTrial Refer ANZ mobile app* means information on every active and pending haematology clinical research trial in Australia and New Zealand can be instantly accessed on your smartphone.

Designed for haematologists, GPs, research unit staff and patients, this is the first national database specifically for haematology recruiting studies. It is updated monthly and enables users to search for potentially suitable trials by blood cancer type.

ClinTrial Refer ANZ also is an effective tool for patients to identify recruiting trials.

This tool is simple to use and effectively provides current information that can

be discussed with your treating doctor and details of each trial can be emailed direct from the app to you, your doctor, or anyone else.

“...an effective tool for patients to identify recruiting trials.”

The search function results show summary information, trial status, location details, inclusion and exclusion criteria, the trial sponsor, and contact details for each trial.

Having potentially life-saving blood cancer clinical trials details at the fingertips of patients and clinicians creates further opportunities for treatment and care.

* The ClinTrial Refer ANZ app can be downloaded from the App Store (iPhone, iPad users) or Google Play (Android users).

Venetoclax trial shows promise for high-risk CLL“This clinical trial is going to be life changing for some people with CLL”

Hall Institute (WEHI) and in trial sites in the U.S., were published in the New England Journal of Medicine.

Professor Andrew Roberts, a clinical haematologist at the RMH and cancer researcher at the WEHI, said most trial patients responded positively to the therapy, showing substantial reductions in the number of leukaemia cells in their bodies.

“Many patients have maintained this response more than a year after their treatment began, and some patients remain in remission more than four years on,” Professor Roberts said.

“This is a very exciting result for a group of people who often had no other treatment options available.”

The drug has been granted Priority Review status by the U.S. Federal Drug Agency (FDA) for treating some types of CLL. The designation is granted to medicines the FDA has determined to have the potential to provide significant improvements in the treatment, prevention or diagnosis of a disease.

Venetoclax was developed in Australia and is based on a landmark discovery that the protein, BCL-2, promotes cancer cell survival.

Professor Roberts said the drug works very specifically by overcoming the action of BCL-2.

“High levels of BCL-2 protect the leukaemia cells from dying, so the leukaemia can grow and become resistant to standard treatments.

Venetoclax selectively targets the interaction responsible for keeping the leukaemia cells alive and, in many cases,

In a world-first clinical trial for a new form of oral treatment for high-risk CLL, 79% of trial participants had promising results, including 20% who achieved complete remission.

The trial of the potent new anti-cancer drug, venetoclax (previously known as ABT-199), showed it was effective in killing cancer cells in people with advanced forms of CLL for whom conventional treatment options had been exhausted.

A small number of people on the trial had such a profound response that even very sensitive tests were unable to detect any remaining leukaemia in their bodies.

Results from the trials, at the Royal Melbourne Hospital (RMH) and Peter MacCallum Cancer Centre (Peter Mac), in collaboration with the Walter and Eliza

we’ve seen the cancerous cells simply melt away,” Professor Roberts said.

“The fact that a targeted drug, given on its own, can produce such a profound reduction in the leukaemia burden in the patient, to the point we cannot find the leukaemia even with our best tests, underscores what a powerful strategy targeting the BCL-2 gene is,” said Professor John Seymour, Chair of the Haematology Service at Peter Mac.

“These results set the foundation for building towards the dream of cure for CLL.”

The Leukaemia Foundation’s Head of Research and Advocacy, Dr Anna Williamson, said the clinical trial had created considerable interest.

“This trial is going to be life-changing for some people with CLL,” she said.

“As with every new therapy, not everyone will respond but for those who do, it opens the door to a new life.”

The Leukaemia Foundation contributed to early work on the precursor to ABT-199. This research, undertaken by Dr Kylie Mason, Professor Andrew Roberts and collaborators at the WEHI through the Foundation’s National Research Program Grants-in-Aid 2010 and 2012, assisted the development of venetoclax.

“These breakthroughs are what we look forward to from every investment we make into the our National Research Program,” said Dr Williamson.

“It is wonderful to see the money from our generous supporters helping to transform the lives of people with blood cancer.”

Phase II and phase III studies are underway to test venetoclax across a range of blood cancers globally, including at many sites in Australia.

Clinical Trials3

Continued: “Mummy’s magic medicine” has made Deborah better

Story continued on the next page.

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 her disease was progressing 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 CLL progression 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. While there she had a consultation with Professor Thomas Kipps, an international CLL expert.

“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 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

“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.

“There were only 40 places in the world for this trial ..... none in Australia which was very frustrating.

It was with venetoclax, which ironically was developed in Melbourne. The only way Deborah could access venetoclax 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: www.abtandme.com.

“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 venetoclax 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 (last month).

My Journey4

Continued: “Mummy’s magic medicine” has made Deborah better

New guide to accessing non-PBS listed blood cancer drugs A new booklet, developed by the Leukaemia Foundation, is a guide to navigating the complex system of accessing blood cancer drugs that are not PBS listed in Australia.

The title of the booklet is Accessing non-PBS Funded Blood Cancer Drugs in Australia. It was launched at Parliament House in Canberra last month to raise awareness among Members of Parliament of the confusing medicine maze faced by people with blood cancer.

While Australia’s healthcare system is recognised as one of the world’s best, and our cancer patient survival rates are among the best in the world, for some Australians there are new and promising treatment options that are not yet funded by our healthcare system.

Sometimes it is possible to access new cancer drugs that aren’t PBS funded and this new publication provides support by discussing alternative pathways to accessing new drugs, for consideration and for discussion with your specialist.

The Foundation’s Head of Blood Cancer Support, Anthony Steele, said research1

indicates Australians with cancer want to be informed about all their drug options, including those not funded through the PBS, and regardless of their ability to pay for such medications.

“It is not always easy for a doctor to discuss drug options that might not be within your financial means to access, or would mean a considerable cost to you and your family when the outcome of the therapy is not known,” Mr Steele said.

“Our aim is to enable you to talk candidly with your specialist about the best drug to treat your cancer (or your family member’s cancer), including new drugs, and the access options that are available to you.

“A new blood cancer therapy may not always be right for you because the access pathways can be difficult, time-consuming and expensive,” he said.

As well, some new drugs are still under evaluation and it may not be known how effective they are or what side-effects they may cause. New therapies may range from exciting breakthroughs, to an option that is not very different to an existing therapy. Some alternative drug access options may be legal, but there may be increased risks associated with them, such as counterfeit drugs.

The Leukaemia Foundation supports your right to be proactive in deciding, along with your specialist, the best treatment for your (or a family member’s) health. We encourage you to gather enough information so you can make an informed decision with your specialist about whether or not to choose treatment with a new drug.

In developing this booklet, the Foundation consulted a wide range of people including haematologists, pharmacists, allied health professionals, various agencies dedicated to supporting people living with blood cancer, and our own blood cancer support team.

1 Mileshkin, L., Schofield, P.E., Jefford, M., Agalianos, E., Levine, M., Herschtal, A., & Zalcberg, J.R. (2009). To tell or not to tell: The community wants to know about expensive anticancer drugs as a potential treatment option. Journal of Clinical Oncology, 27(34), 5830-5837.

“This is a very easy therapy to tolerate,” said Deborah.

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 venetoclax on an ongoing basis.”

Early last month, Deborah got the fantastic news that she is in complete remission with 0.0345% of her lymphocytes being CLL, after four months on venetoclax.

“This is fantastic – I’m very happy,” said Deborah, who had just taken her venetoclax tablets on the morning train ride to her new job in Melbourne as a consultant at the Australian Davos Connection.

“By October, I’m hoping to have no detectable disease (molecular remission) so I can stay on the trial. I’m loathe to come off

the drug. It could be the Glivec** of CLL.”

In the meantime, Deborah will continue to travel to London every three weeks for her treatment.

While on the trial, venetoclax 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. In April, venetoclax was approved as a second line therapy for 17(del) CLL by the FDA in the U.S. It is not expected to be TGA approved and PBS listed here for at least two years, when the results of clinical trials are known and it is proven to be both effective and safe.

* stage IV SLL, unmutated with del 6q, which is associated with more rapid disease progression. ** a daily tablet used to treat people with CML.

Education5

People with CLL often ask about the role of diet and complementary therapies in controlling CLL, limiting lymphocyte counts, prolonging disease progression, and managing disease symptoms and treatment side-effects.

When newly diagnosed, many are told there’s no clinical benefit (and significant risks) in starting treatment in early stage disease, the standard approach to CLL management being to ‘watch and wait’.

Being told you have a serious, chronic and potentially life-threatening illness, but there’s nothing to be done about it can be disconcerting. This means getting on with life while living with and adjusting to sometimes debilitating and cumulative CLL symptoms including chronic fatigue, lifelong infection risks and ongoing anxiety regarding possible disease progression.

The expression ‘watch and wait’ implies inaction and can create significant anxiety along with the psychological burden of living with unknowns. ‘Living well with careful surveillance’ is a better description.

Many people are told in the early stages that their CLL is unlikely to become a major problem and they’re likely to die of another disease altogether. Years later, when the disease eventually progresses, they are often angry and frustrated something wasn’t done to control the disease in its earlier stages.

Standard approaches to CLL treatment involve one or more chemotherapy and immunotherapy agents with side-effects that can be significant. Many people with CLL have heard of other people’s first-hand chemo experiences in other cancer settings. Based on those experiences, some people have refused conventional treatment for their CLL. These decisions can lead to poor and often avoidable clinical outcomes.

Rather than having confidence in the genuine desire of health researchers and professionals to find new and to improve existing treatments to improve clinical practice and find cures for cancers, some people are mistrustful or cynical of the motives of pharmaceutical companies and western medicine in general.

Some people explore other options to conventional chemotherapy – complementary therapies, diets and lifestyle modifications.

Supermarkets, health food suppliers, pharmacies and the online environment abound with information claiming various diets and complementary therapies are effective in preventing, controlling or even curing various cancers. These may sound plausible and appealing. The websites may look professional, the claims may sound credible and there may be references to

scientific research as proof of a product’s effectiveness.

However, there’s little credible scientific evidence to support claims of efficacy that these products or diets can control CLL. Some may even be harmful and have a negative impact on the effectiveness of other conventional treatments.

Many complementary therapies may be beneficial in maintaining general health and wellbeing and it is vitally important to distinguish between unsubstantiated claims and verifiable clinical evidence. It is essential to be fully informed about the potential benefits and risks associated with any given product and to discuss anything you are considering taking with your treating haematologist, GP, or pharmacist.

In Australia, conventional medicines are subject to years of controlled clinical trials that assess their effectiveness in controlling a particular disease in large numbers of people. These drugs also are compared to current standard treatments, and all potential side-effects are monitored. Clinical data from these trials is constantly examined and undergoes rigorous ongoing scrutiny from independent panels of medical professionals, regulatory bodies and ethics committees. The aim is to protect the safety and legal rights of all trial participants, to ensure all medical research is performed within legal and ethical boundaries, and that all resulting clinical data is supported by verifiable clinical evidence.

Only drugs or products that have undergone this rigorous process are submitted to and approved by the Australian Therapeutic Goods Administration and, where possible, subsidized by the Pharmaceutical Benefits Scheme.

Complementary medicines don’t undergo this level of scientific scrutiny or regulation by statutory bodies. Claims of their effectiveness in controlling CLL are often based on very well presented but often dubious scientific claims with little if any clinical evidence to support them.

Given CLL results from genetic mutations or aberrations within cells, it is hard to imagine how any diet, herb or other product can effectively control CLL at this crucial genetic intracellular level, and there is little or no clinical evidence to suggest otherwise.

Recent significant scientific advances in understanding CLL in terms of targeting specific cell surface antigens, intracellular proteins that moderate cell survival and programmed cell death (apoptosis) and CLL-specific cytogenetic abnormalities have led to several new exciting therapies with great promise in treating even advanced CLL in people with a poorer prognosis. In this new and evolving clinical landscape, it is important to:

•keep an open mind and actively seek accurate and reliable information to ensure all decisions on possible treatments are fully informed and based on reliable clinical evidence;

•be fully informed about the potential benefits/risks of any suggested CLL therapy, whether it’s conventional or complementary;

•feel confident and within your rights to seek a second opinion if you’re not comfortable with suggest treatments and possible side-effects.

The Leukaemia Foundation recognises that complementary therapies may have a role in the holistic approach to overall health care but it is vital to discuss any product you are considering taking with your doctor.

* A former haematology nurse clinical trials coordinator.

CLL Q & AConsultant haematologist, Dr Constantine Tam answers questions from people with CLL.

Are there any particular foods people with CLL should avoid?

If you’re not on any drug therapy (e.g., chemo) there are no particular dietary requirements other than being sensible. If you are on therapy, some berries, teas and herbs can interfere with treatment, can increase the level of the drugs, and should be avoided. There’s no problem eating berries because they’re tasty, but if you’re taking them to improve your immune system – anything in excess is not good. Your immune system is most happy when you’re active, fit, not too stressed, not overweight and have a mainly natural, wholesome diet with not too much processed food or meat. Some experiments indicate that having 10% less calories than you need per day and not too much sugar in your diet, can slow cancers progress a bit.

My lymphocyte count is increasing, should I be worrying?

A range of minimum criteria is considered prior to starting treatment, rather than any one symptom on its own. Your lymphocyte count is just one of those criteria. If it’s going up, the CLL may be destined to progress and you will need to be treated at some time, so talk to your doctor about treatment options. The most important thing is how you feel. If your energy levels are good and you don’t have any sweats or infections and your glands are not big, I don’t really care about the lymphocyte count. It’s the effect on the body – how you feel.

Complementary therapies in CLL By a Leukaemia Foundation Blood Cancer Support Coordinator*

Living Well6

Adherence to ibrutinib therapy vital

CLL expert education forum – Sydney May 15People with CLL are invited to a Leukaemia Foundation education forum*, in Sydney on May 15, featuring presentations by two international CLL experts.

They are:

Dr Jan Burger, Associate Professor at the University of Texas MD Anderson Cancer Center, Houston (U.S.), a laboratory and clinical investigator whose focus includes

developing new therapeutic approaches for targeting the microenvironment in CLL.

Dr Paolo Ghia, Associate Professor at the Universista Vita-Salute San Raffaele, Milan (Italy) who specialises in the management of CLL based on an improved understanding of the biology of the disease and selecting the right treatment strategy.

To attend this forum and for more information please contact Snezana Djordjevic: sdjordjevic@leukaemia.org.au

* This forum is made possible through an unrestricted grant from Janssen.

It is anticipated that ibrutinib – a new oral therapy for people with CLL will be listed on the PBS in the next few months.

Like all oral therapies for people with chronic conditions, adherence to therapy is vital for it to work long-term.

Taking drugs regularly without fail every day for weeks, months and years on end is a challenge and adherence to your therapy is very important, according to Leukaemia Foundation Head of Blood Cancer Support, Anthony Steele.

“Especially in the early stage of starting a new oral medication, when the side-effects can be most severe.

“The main reasons why people don’t respond to treatment is that they take themselves off treatment periodically, due to side-effects or because they have something important coming up for which they want to feel good,” Mr Steele explained.

“..... if you want to live as long and as well as possible, it’s important to take your pills.”

Other reasons people are not adherent include:

•forgetting to take the drug

•not remembering if they have already taken the drug that day

•forgetting to pick up their script

•feeling that they are doing really well and wanting to see if they will be OK if they stop taking it.

“Changes to therapy, including treatment ‘holidays’, should not be taken lightly as they can reduce your response to the drug therapy and may lead to poorer outcomes,” he said.

“While discontinuation can be due to forgetfulness, a common problem is that people don’t speak to their doctors about the adverse effects they are experiencing

and some people feel that their doctor doesn’t take their side-effects seriously.”

“You need to work closely with your doctor to minimise side-effects, and know that these often get better over time, although there may be some symptoms you have to learn to live with.

“Changes to therapy ..... can reduce your response to the drug therapy and may lead to poorer outcomes.”

“One of the great motivators is that if you want to live as long and as well as possible, it’s important to take your pills,” Mr Steele said.

It seems crazy to many to hear of people who have been prescribed a medication to treat a chronic condition, especially a cancer, and yet they don’t always take it. But, living with a chronic condition is poorly understood by the general community. It is not easy!

Living with CLL can feel very isolating. If you are feeling this way, try to make contact with others who are in a similar situation and truly do understand what you are going through.

You can learn from others who have their own strategies that help them stay adherent to their oral medications over the long haul.

To find such a person, contact the Foundation’s Blood Buddies program: email bloodbuddies@leukaemia.org.au or call 1800 007 343.

“Taking drugs regularly without fail ..... is a challenge and adherence to your therapy is very important.”

Education7

SOUTH AUSTRALIA2 May 5.30-6.30pm Mt Gambier Support Group (also 27 Jun, 29 Aug)

5 May 10am-12pm Women’s Support Group, Henley Beach (also 2 Jun, 7 Jul, 4 Aug, 1 Sep)

12 May 10am-12pm Southern Adelaide Support Group, Noarlunga Downs (also 9 Jun, 14 Jul, 11 Aug, 8 Sep)

18 May 11am-1pm Strathalbyn Support Group (also 15 Jun, 20 Jul, 17 Aug, 21 Sep)

30 May 10am-12pm CLL/CML Support Group, Northfield (also 25 Jul)

31 May 10.30am-12.30pm

Men’s Support Group, Northfield (also 26 Jul, 27 Sep)

14 Jun 10am-12pm Port Lincoln Support Group (also 9 Aug)

21 Jun 10am-12pm Northern Adelaide Support Group, Evanston (also 16 Aug)

TASMANIA25 May 10.30am-

1.30pmNavigating the Healthcare System, Hobart

1 Jun 11am-12.30pm Hobart Man Cave

14 Jun 10.30am-12pm Blood Cancer Support Group, Launceston

15 Jun 10.30am-1.30pm

Forum: Emotional Wellbeing, Hobart

27 Jul 11am-1pm Hobart Blood Cancer Support Group

VICTORIA

Melbourne Metro19 May 10.15-11.45am Bone Marrow and Stem Cell Transplant Support Group,

Hawthorn (also 18 Aug, 10 Nov)

24 May 10-11.30am Western Suburbs Blood Cancer Support Group, Maribyrnong

24 May 10.15-11.45am CLL Support Group, Camberwell

26 May 10-11.30am Northern Suburbs Blood Cancer Support Group, Preston (also 25 Aug)

31 May 12.30-3.30pm

Education seminar: Navigating the Health Care System, Hawthorn

8 Jun 10-11.30am Carers Morning Tea, Fairfield

Gippsland19 May 1.30-3pm Education seminar: Financial Management, Wonthaggi

8 Jun 1.30-3pm Traralgon Support Group (also 12 Oct)

16 Jun 1.30-3pm Warragul Support Group (also 18 Aug)

21 Jul 1.30-3pm Leongatha Blood Cancer Education & Support Group

10 Aug 1.30-3pm Education forum: Legal Matters, Traralgon

16 Sep 1,30-3pm Bairnsdale Blood Cancer Education & Support Group (also 25 Nov)

WESTERN AUSTRALIA

Perth Metro16 May 1-3pm Perth Central Blood Cancer Support Network

(also 20 Jun, 18 Jul, 15 Aug)

14 Jun 10am-12pm Perth Blood Cancer Education Session (also 9 Aug)

Bunbury5 May 10.30am-

12pmBunbury Regional Blood Cancer Network (also 2 Jun, 7 Jul, 4 Aug)

Great Southern

8 Jun 10am-12pm Great Southern Albany Blood Cancer Network (also 10 Aug)

Peel19 May 10.30am-

12pmPeel Region Blood Cancer Network (also 16 Jun, 21 Jul, 18 Aug)

27 May 1-2.30pm Port Kennedy Blood Cancer Support Network (also 24 Jun, 22 Jul, 26 Aug)

NEW SOUTH WALES & AUSTRALIAN CAPITAL TERRITORY

Sydney Metro13 May 10am-12pm Concord Blood Cancer Information & Support Group

(also 10 Jun, 8 Jul, 12 Aug, 9 Sep)

16 May 10am-12pm Liverpool Blood Cancer Information & Support Group (also 20 Jun)

18 May 2-4pm Randwick Blood Cancer Education & Support Group (also 15 Jun, 20 Jul, 17 Aug, 21 Sep)

25 May 11am-1pm Westmead Blood Cancer Education & Support Group (also 29 Jun, 31 Aug, 28 Sep)

27 May 10am-12pm Sydney & North Sydney Blood Cancer Education & Support Group (also 24 Jun, 29 Jul, 26 Aug)

30 May 10-11.30am St George Blood Cancer Education & Support Group (also 27 Jun, 25 Jul, 29 Aug, 26 Sep)

2 Jun 2-4pm Penrith Blood Cancer Education & Support Group

Hunter7 Jun 10am-12pm Newcastle Blood Cancer Education & Support Group

(also 2 Aug)

14 Jun 10-11.30am Port Stephens Blood Cancer Education & Support Group

21 Jun 10.30am-12pm

Taree Blood Cancer Education & Support Group (also 16 Aug)

New England21 Jun 2-4pm Tamworth Blood Cancer Education & Support Group

(also 16 Aug)

22 Jun 2-3.30pm Armidale Blood Cancer Information & Support Group (also 17 Aug)

Mid North Coast16 May 1-3pm Port Macquarie Blood Cancer Information & Support

Group (also 20 Jun, 18 Jul, 15 Aug, 19 Sep)

26 May 11.30am-1pm Coffs Harbour Blood Cancer Information & Support Group (also 23 Jun, 28 Jul, 25 Aug, 22 Sep)

Northern Rivers18 May 10am-12pm Tweed Heads Blood Disorder Support & Morning Tea,

Tumbulgum (also 15 Jun)

19 May 10am-12pm Grafton Blood Cancer Support & Morning Tea (also 16 Jun)

Central Coast26 May 10-11.30am Gosford Blood Cancer Education & Support Group (also

30 Jun, 28 Jul, 25 Aug)

31 May 2-3.30pm Wyong Blood Cancer Education & Support Group (also 28 Jun, 26 Jul, 30 Aug, 27 Aug)

Illawarra & Shoalhaven11 May 10.30am-

12.30pmWollongong Blood Cancer Education & Support Group, Figtree (also 8 Jun)

25 May 10am-12pm Southern Highlands Blood Cancer & Support Program, Bowral (also 27 Jul)

Central West & Far West4 May 10.30am-

12.30pmDubbo Blood Cancer Education & Support Group (also 1 Jun)

5 May 10-11.30am Orange Blood Cancer Education & Support Group (also 2 Jun)

9 Jun 11am-12pm Mudgee Blood Cancer Information & Support Group

ACT & Southern NSW10 May 10am-12pm ACT Blood Cancer Education & Support Group (also 14 Jun)

16 May 11am-1.30pm Goulburn & Surrounds Blood Cancer Coffee Group (also 6 Jun)

18 May 10.30am-12.30pm

Eurobodalla Shire Blood Cancer Education & Support Group, Moruya (also 15 Jun, 20 Jul, 17 Aug, 21 Sep)

Contact us GPO Box 9954, IN YOUR CAPITAL CITY 1800 620 420 info@leukaemia.org.au

www.leukaemia.org.au LeukaemiaFoundation LeukaemiaAus leukaemiafoundation

Visit www.leukaemia.org.au for our latest Education and Support Program Event Calendar.

To register for an education or support event, freecall 1800 620 420 or email info@leukaemia.org.au.

Disclaimer: No person should rely on the contents of this publication without first obtaining advice from their treating specialist.

What’s on near you8