World Lymphoma Awareness Day 3

BGB-3111 clinical trial data 5

William & Adam are Blood Buddies 7

HL: treatments update 9

WM: international forum report 10

Skin lymphoma: international study 11

What’s on near you 12

Peter’s had a great response to BGB-3111 trialWhen Victorian vet, Peter Younis relapsed three years ago, he opted to go on a clinical trial for a targeted therapy rather than having another course of chemotherapy.

The trial is for the experimental drug BGB-3111, which is effectively managing Peter’s rare form of lymphoma, called Waldenström’s Macroglobulinaemia (WM). It involves taking four capsules a day, and every two months he makes a day-long round trip from Port Campbell, where he lives in south west Victoria, to Melbourne for tests.

From Peter’s point of view, the trial “is just great”.

“I’ve had an excellent result – I’m alive, happy and have no side-effects.

“A big advantage is that I can just continue with my normal life. It’s unbelievably simple and non-disruptive for someone who has an active life,” explained Peter, a large animals vet who works mainly with cattle. He’s also a surfer and a musician who plays in a band, the Swamp Apostles.

“This was such a better way of having treatment than sitting in a chemo chair for a day and going through the sickness afterwards.”

Peter’s diagnosis with WM 13 years ago was an incidental finding when he had blood tests following kidney stone treatment. The results showed a very high level of protein. Further investigations revealed high paraprotein and a bone marrow biopsy found he had WM.

“I wasn’t quite 50, which is young for this type of lymphoma,” said Peter, now 62.

“It’s an effort to get to Melbourne, but a very small effort ... to contribute to what I think is a valuable bit of research.”

He consulted a haematologist at Warnambool, went on ‘watch and wait’ and the following year his paraprotein level indicated the need to be treated. At the time, fatigue and muscle weakness were his main symptoms.

Peter had a course of traditional chemotherapy, which suppressed his WM significantly, and he was monitored over the next nine years until 2013 when the lymphoma started to return.

After a discussion with his haematologist he considered his two options, and being a scientist, Peter methodically drew up a list of the pros and cons of having more chemo versus a randomised controlled clinical trial*.

That he could end up in the control group was the major con with the trial, and the con for another course of chemo – the ‘sledgehammer approach’ – was that it “stuffs up your life for a while”.

“I’d be buggered for a few days and it was a week before I could get back to work. I enjoy my work,” he said.

A major pro for Peter regarding a trial was its “contribution to the greater scientific good”.

Russell Smith, third on the left, his wife, Llanie and their sons, Edward and Harrison, with family and friends at Light the Night. See the story on page 6.

Story continued on page 4.

Contents

Lymphoma news.For people with lymphoma & their families

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

Lymphoma – personalised medicinePersonalised medicine – identifying the best treatment for the individual patient – is not new, but its role in healthcare is rapidly increasing.

The aim of personalised medicine is to optimise outcomes by integrating information on tumour biology (obtained through genomics technologies) with clinical information, and tailoring therapy.

Better knowledge of a cancer’s molecular biology means clinicians can increasingly tell the many biologic differences between individual patients’ cancers, and a greater ability to measure biologic characteristics helps point to the use of a specific, or targeted drug.

In lymphoma, many treatment options are available, and knowing more about the different subtypes enables the most effective treatment to be selected for each patient.

Personalised medicine and lymphoma

Clinical practice for lymphoma has relied on treatment algorithms* to provide similar treatments to large subgroups of patients. Now, clinicians realise unique biologic differences exist among the different subtypes of lymphomas and between individuals with the same subtype.

In diffuse large B-cell lymphoma (DLBCL) – the most common form of aggressive non-Hodgkin lymphoma – gene expression profiling has identified two main biologic subtypes – activated B-cell-like (ABC) and germinal centre B-cell-like (GCB), and 85% of patients with DLBCL have either ABC or GCB subtypes.

Most people with DLBCL are treated in a similar way, regardless of subtype, but this information will become more relevant soon as there are drugs in development that are expected to benefit one subtype or the other, such as ibrutinib, a selective, irreversible inhibitor of Bruton’s tyrosine kinase that is typically expressed in the ABC subtype.

Another example is double hit lymphoma (see story below). These patients have two genetic abnormalities and it’s important that they are appropriately identified as they typically do not do well with the present standard treatment for DLBCL.

Is gene expression profiling for everyone?

Most treatment decisions in lymphoma are still not based on a patient’s genetic profile, and gene expression profiling isn’t routine care for all patients. There are some simple immunohistochemistry tests that can help identify people with ABC or

GCB DLBCL, but these techniques are not perfect and there is debate about whether these tests should be done.

As more is learned about the biology of the different lymphomas and as more selective treatments are developed, tools to measure genetic differences will need to become routinely available.

Benefits of personalised medicine

Being smarter in choosing the best drug for an individual patient means providing the optimal treatment, with the highest chance of helping the patient and sparing them the unnecessary toxicity of a drug that is not likely to work. Newer, more targeted therapies are likely to be expensive, so it is imperative that they are given to patients who will benefit.

Changes in drug development

Whereas chemotherapy has a broad mechanism of action, most drugs in development are ‘targeted therapies’ with a known specific mode of action that is efficacious for certain cancers. And, as the design of most drugs in development is based on genetic differences and abnormalities, clinical trials have biologic questions built into them to test whether patients have those biologic features.

Information on double hit lymphoma

Advocating for PBS listing of drugs for HL and FLTwo drugs – brentuximab vedotin (Adcetris®) and obinutuzumab (Gazyva®) – will be considered by the Pharmaceutical Benefits Advisory Committee (PBAC) for PBS listing at its next meeting, in November.

People with Hodgkin lymphoma (HL) and follicular lymphoma (FL) are encouraged to share their experiences with these diseases and the treatments they have had, to help the PBAC in its decision-making process.

There are two applications for brentuximab vedotin (BV):

•for adults with relapsed or refractory CD30+ HL who have had an unsuccessful autologous stem cell transplant (SCT)

•for adults with relapsed or refractory CD30+ HL who aren’t able to have an autologous SCT.

The application for obinutuzumab

Specific information about an

uncommon subtype of diffuse large

B-cell lymphoma (DLBCL) is now

available on our website.

In double hit lymphoma (DHL), which makes up about 5% of DLBCL cases,

(Gazyva®) in combination with bendamustine (Teanda®) is for people with FL who have not responded to or whose disease has progressed while receiving a rituximab (MabThera®)- containing treatment, or within six months of completing the last dose of a rituximab (MabThera®)-containing treatment.

The PBAC is seeking quality of life information for each of these patient groups and the Leukaemia Foundation will submit consumer submissions to support these applications and is seeking your assistance by filling in the survey. To access the surveys online, go to:

https://www.surveymonkey.com/r/FollicularLymphomaSurvey

https://www.surveymonkey.com/r/HodgkinLymphomaSurvey

The Foundation’s Head of Research & Advocacy, Dr Anna Williamson said BV, an antibody-drug conjugate that targets the CD30 protein in HL, and obinutuzumab,

the lymphoma cells have abnormalities (a mutation or rearrangement) on two significant genes.

These are the MYC gene and either the BCL2 or BCL6 genes, whereas most lymphoma cells have a rearrangement on only one or none of these genes.

a humanised anti-CD20 monoclonal antibody, give people another treatment option and the chance to stay alive.

“When all else had failed, these treatments appear to be less toxic than standard chemotherapy thereby enhancing quality of life, and give good responses in some people so they can get on with their lives,” Dr Williamson said.

You also can make a personal submission direct to the PBAC online (http://www.health.gov.au/internet/main/publishing.nsf/Content/PBAC_online_submission_form) or by writing a letter. Submissions need to be submitted by 5 October 2016.

For more information or a copy of our PBAC submission information sheet contact Dr Williamson: awilliamson@leukaemia.org.au or 0412 008 407.

* The PBAC is the independent body appointed by the Australian government to review new medicines and recommend whether they are to be subsidised. The PBAC meets three times a year.

Descriptions of these three genes along with information on how DHL presents, procedures and tests used to diagnosed DHL, treatment with chemotherapy, and prognosis are all covered.

The DHL section can be read and downloaded from the ‘Lymphomas’ section at: www.leukaemia.org.au

* A best practice approach to medical treatment.

Just Briefly2

World Lymphoma Awareness Day – September 15

AUSTRALIAN CAPITAL TERRITORY

Canberra & surrounds

14 Sep 2.30pm WLAD seminar, Garran, Dr Emma Palfreyman & Dr Maya Latimer, Haematologists; Jenny Northey, Lymphoma Care Coordinator; Meg Lang, Adolescent and Young Adult Coordinator (Anais Le Gall 0412 706 789)

NEW SOUTH WALESMetro Sydney

29 Sep 10am-2pm Lymphoma – Personalising Medicine, Lidcombe (Lauren Walker 0401 751 225)

Central Coast

29 Sep 10am-1.30pm WLAD seminar, Wyong, Dr Cecily Forsyth, Personalising Medicine; Sue McConaghey, Dealing with Life Threatening Illness; Jacqueline Jagger, Symptom Control; and Q&A (Glenda Thomas 0401 104 662)

Hunter

27 Sep 10am-1pm Lymphoma – Personalising Medicine, Wallsend, Dr Wojt Janowski, Staff Specialist Haematologist CMN; Jackie Wykes, Lymphoma Care Coordinator CMN; April MacNeill, Pastoral care CMN (Vicki Emmeriks 0412 706 784)

Murrumbidgee

13 Sep 1.30-3.30pm Lymphoma – Personalising Medicine, Albury, Dr Christopher Steer; and patient story (Carmel Duck 0412 107 716)

Western NSW/Far West NSW

8 Sep TBA Lymphoma – Personalising Medicine, Orange, Dr Doug Lenton (Louise Hoffman 0412 706 785)

SOUTH AUSTRALIA

Metro Adelaide

3 Sep 8.30am-3pm

SA Blood Cancer Conference, Adelaide, includes WLAD (Peter Diamond 08 8169 6030)

NORTHERN TERRITORY

Metro Darwin

Aug 13 8.30am-3pm NT Blood Cancer Conference, Darwin, includes WLAD (Peter Diamond 08 8169 6030)

TASMANIA

Hobart

14 Sep 10.45am -1.30pm

WLAD, Bellerive (Jane Anderson 03 6231 0620)

Launceston

15 Sep 10.45am -2pm

WLAD, Launceston (Jo Beams 03 6341 8413)

VICTORIA

Metro Melbourne

10 Sep 10am-1pm Annual Blood Cancer Conference, Melbourne. includes WLAD (Tennille Lewin 0422 002 271)

Barwon South West

28 Sep 1-3pm WLAD, Barwon (Rebecca Steele 0466 508 664)

28 Sep 1-3pm WLAD, Geelong (Lani Shiels 0481 013 819)

Grampians

4 Oct 9.30-11.30am WLAD, Ballarat Dr Craig Carden (Sarah Corfe 03 5320 8677)

WESTERN AUSTRALIA

Metro Perth

Sep 10 9.45am-2.30pm

WLAD seminar, Bentley, Dr Chan Cheah, Genetic Profiling; Targeted Therapies; Breakout sessions (WM, CLL/SLL, HL, lymphoma general) (leukwa@leukaemia.org.au 08 6241 1024)

World Lymphoma Awareness Day 2016 events

September 15 is World Lymphoma Awareness Day (WLAD) and the Leukaemia Foundation is participating in this international event for this most commonly diagnosed blood cancer in Australia.

Around 38,000 people Australians have had a lymphoma diagnosis in their lifetime and an estimated 1000 people who are living with lymphoma will attend the Foundation’s WLAD education and support events across the country this year.

WLAD 2016 events will focus on new directions in treatment based on the theme Lymphoma – Personalising Medicine, including:

•genetic profiling of lymphomas

•targeted therapies, and

•CAR T-cell therapy.

Throughout September, medical professionals presenting at WLAD education events will provide accurate, up-to-date and independent information on personalised medicine as part of lymphoma awareness, education and support activities held across the nation.

Lymphoma education sessions

The Leukaemia Foundation will hold a range of education sessions for people affected by lymphoma, both in metropolitan and regional areas during September. These are aimed at lessening fear of the

unknown, instilling a sense of hope and offering strategies to improve quality of life. For more information on events in your local area, please ask your local support service coordinator, contact the Leukaemia Foundation on 1800 620 420 or info@leukaemia.org.au or visit www.leukaemia.org.au.

Spreading the word online

The Foundation will use social media to promote WLAD, so keep an eye out for WLAD activities on our Facebook page, twitter feed and look for the WLAD page on our website (www.leukaemia.org.au) for news and updates. You are encouraged to share WLAD posts with family and friends.

Lymphoma Facebook page

The closed ‘members-only’ lymphoma Facebook page launched as part of WLAD last year will be further promoted this year. You are invited to join this group to receive treatment/research updates, support, education, and to share and connect with others with lymphoma.

Wear a lymphoma ribbon

The Foundation’s, ‘lymphoma’ ribbons will be available at all our lymphoma education sessions during September for a gold coin donation. We urge people with lymphoma to wear a lymphoma ribbon as a way of connecting with and showing support for other people who are affected by this blood cancer.

‘Lymphoma aware’ badges

‘Lymphoma aware’ badges are for sale during WLAD for $5. These can be worn by people with lymphoma, their family and friends, to raise awareness of lymphoma within their communities. The badges also are available from Leukaemia Foundation offices and sale proceeds support our research and the support services we provide at no cost to people with lymphoma.

Please join us in promoting and recognising World Lymphoma Awareness Day 2016 by hosting an event or sharing your experience with lymphoma as a speaker at a WLAD event. Contact Karen Matoga, National Lymphoma Coordinator: lymphoma@leukaemia.org.au.

See personalised medicine story on preceding page.

Education3

When he went to Melbourne to find out more, he was told about another trial – a Phase I study into the effects of dose escalation of the BTK inhibitor, BGB-3111.

It hadn’t been used in humans so the trial was a dose response study to determine where the levels lay between toxic and effective doses of BGB-3111. Participants were allocated to one of three dosage groups – 80mg, 160 or 320mg per day.

Peter started the trial in November 2014 on 80mg a day and spent the first couple of days at the Peter MacCallum Cancer Centre being closely monitored. Afterwards, observations, examinations and blood chemistry tests were carried out every week for a month, then every month, and now – every two months.

“It’s a whole day; I leave very early and get back home very late at night,” said Peter. He drives to Geelong where he catches the train to Melbourne.

“It’s an effort to get to Melbourne, but a very small effort on my behalf to be able to contribute to what I think is a valuable bit of research. I’ll keep doing this as long as I think it’s beneficial to the trial.”

After 12 months on the trial, and having had a positive response to the drug, as measured by the paraprotein levels in his blood, Peter’s daily dose of BGB-3111 was increased to 160g, which resulted in a further drop in his paraprotein.

Several months later, ethics approval was granted for the trial protocol to change to twice daily dosing. Peter’s dose has since been increased, to 160mg twice a day, which is expected to be even more efficacious.

When Peter spoke to Lymphoma News, he’d been on the higher dose for three weeks.

“I have no adverse effects that I’m aware of – nothing that’s measureable or that I have observed. The drug has significantly reduced my paraprotein, although not to the same extent yet as a whack of chemo.

According to the principal investigator of the BGB-3111 trial, Dr Constantine Tam: “We are all very pleased with Peter’s response – his paraprotein started at 33g/L, and is now down to 3g/L, and continuing to fall.

“He has been on the drug for nearly two years now with no substantial side-effects. It is responses like these that gives us encouragement to proceed with larger studies,” said Dr Tam.

“I’ve had an excellent result – I’m alive, happy and have no side-effects.”

Peter said BGB-3111 was controlling not curing the WM.

“There is no suggestion this is a cure, because of the indolent nature of WM,” said Peter.

“Part of the deal with this trial is that I’ll have access to the drug for as long as is appropriate.”

He said the only downside to the treatment was having to fast for two hours before and one hour after taking the capsules, and not eating grapefruit which may interact with the drug.

Just as the farmers Peter works for trust in his knowledge and experience, he has faith in the expertise of his medical team.

“I work hard at being up-to-date with scientific literature in my job and

I was surprised at how much I basically said to my

haematologist – “you’re the expert” – and how little I’ve felt the need to hit the internet.

“He discussed my options in a manner

that showed he had the same approach and I

was satisfied with his explanations

and logic.

“I’ve read as much as I can about Waldenström’s, but not incessantly. I really do trust my doctors and the Australian medical system.

“I work in developing countries – Sudan and Pakistan – which gives you an appreciation for how incredibly fortunate we are here to be able to take part in a study and contribute to medical research.”

In the last 13 years since his diagnosis, Peter has only met one other person with WM – a colleague who does the same thing for a living; a vet who also works in embryo transfer!

“We discussed this (both having WM) at a cattle show in Bendigo.”

* A study design that randomly assigns participants into an experimental group or a control group. As the study is conducted, the only expected difference between the control and experimental groups in a randomised controlled trial (RCT) is the outcome variable being studied.

Read about BGB-3111 on the next page.

Continued: Peter’s had a great response to BGB-3111 trial

My Journey4

Early clinical data on BGB-3111 encouragingEarly results from a Phase I clinical trial using BGB-3111 – a new treatment for relapsed non-Hodgkin lymphoma (NHL) and chronic lymphocytic leukaemia – 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 148 people enrolled, including 91 with NHL. 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 affects other off-target enzymes less.

“So far our results have been very good. Patients have had good responses, but we need more patients to tell. More encouragingly, we have demonstrated a higher tolerable level of the drug in the blood than with 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.”

Blood Buddies program well supported The Leukaemia Foundation’s Blood Buddies program recently connected the 156th person with blood cancer to a trained ‘Buddy’.

The phone-based peer support program has received outstanding support from people who are keen to share their blood cancer experience with others.

Blood Buddies matches and connects people newly diagnosed with blood cancer and volunteers who have had one of the blood cancers themselves.

National Blood Buddies Coordinator, Dr Melissa Oxlad, said there has been a high level of interest in the program since its launch last year.

“We now have 155 qualified Blood Buddy

volunteers, with more in training,” Dr Oxlad said.

“And so far we have 156 matches between Buddies and participants (people with blood cancer or carers).

“Talking to someone who has been there and done that can help you feel less alone and more able to manage your health,” said Dr Oxlad.

“We’re looking for more volunteer Buddies, particularly those with a diagnosis of mantle cell lymphoma (MCL) and Waldenström’s macroglobulinaemia (WM), and those who have been treated with ibrutinib and who are now in remission (for at least 12 months).

“People with lymphoma are often treated in outpatient settings and most have

never met another person with the same diagnosis. It also can be hard for them to attend support groups and telephone forums if they are still working or live in regional areas.

“Having a Buddy can be particularly powerful in reducing the sense of isolation and in providing reassurance and support. We would very much like to recruit and train more Buddies diagnosed with lymphoma so we can offer this important support service to more people.

“If you feel you can offer short-term one-on-one support to someone else at an earlier stage of this disease experience than you, please let us know you’re interested in the program,” she said.

For more information and to register your interest in becoming a Blood Buddy or being matched with a Buddy, email: bloodbuddies@leukaemia.org.au or call 1800 007 343. See the story on page 7 about a Blood Buddies match between two people with lymphoma.

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), are both enrolling and both are for NHL.

Speak to your haematologist about your eligibility for this trial.

Clinincal Trials5

Russell Smith took part in Light the Night twice last year and he’s planning to do the same again this October.

Initially, he, his wife and children did the fundraising walk together at Bondi, in Sydney. Then a few days later, Russell and a group of friends went to the North Shore event where the crowd was quite different.

“I used to live in Bondi so it brought back fun memories visiting the beach with my family and being joined at Light the Night by friends still in the area,” said Russell, 37, of Sydney.’

“My kids loved the entertainment and running around with the lanterns.”

Russell first heard about Light the Night when he went along to one of the Leukaemia Foundation’s support groups, which he attended several times while he was having treatment for lymphoma last year.

He moved to Australia from Maine in the U.S. in 2001, met his wife to be, Llanie Kelly, at work in the banking and finance sector and now they have two boys, Edward, four, and Harrison, two.

Russell’s sister-in-law is a dental hygienist in the U.S., and last June he Skyped her and showed her a “funny lump” on his gum. She suggested having it checked out by a dentist who referred Russell to an oral surgeon. A biopsy of the lump led to his diagnosis with follicular lymphoma, which further tests identified as transformative diffuse large B-cell lymphoma.

“It was a bit surreal to be told you have cancer when you feel perfectly fine.”

As Russell was on his way to work when he was told of his diagnosis, his first call was to his parents over in the U.S., to tell

Fundraising for research – Russell’s main reason for supporting Light the Night

them. Next stop was to tell his wife who was already at work on the level above him at the Commonwealth Bank.

“I asked if she had a minute to have a chat,” Russell explained.

“She was dumbstruck with the news – I don’t think there’s a perfect script for telling your partner, but I doubt many people pass on such news in a meeting room at work!”

“We were fortunate to have a friend who is a haematologist although until then I had no idea what she did. She used to work at the hospital I was referred to, but was living in Ireland at the time.

“An email to her on the other side of the world with a scan of the diagnosis gave us a few more answers and a feeling for what we would be in for regarding treatment.”

From July to October 2015, Russell had six rounds of R-CHOP* and he had this time off work.

Fifteen colleagues joined him in shaving their heads on his last day at work before he started treatment, which gave him a massive boost of confidence.

“I had a shock start to it all (treatment) when I got conjunctivitis from my boys. It lasted a month and I could hardly see. It was worse than the chemo,” said Russell.

“Tremendous support from family, friends and my work has kept me going. I’ve always been a glass half full type of person and managed to keep a strong positive focus throughout.

“There were certainly periods of thinking – ‘why me?’ but depression was never an issue. Where there was stress, it was more worrying about how others were managing with my diagnosis.

* CHOP chemotherapy (cyclophosphamide, doxorubicin, vincristine, prednisone) with the drug rituximab (MabThera®).

“I certainly became more selfish during my treatment, so sympathising with the emotional challenges those closest to me were feeling during my treatment was difficult.

“There is never a good time to be told you have cancer, but the timing wasn’t that bad. I had wonderful support close at hand and our two boys were at a manageable age. That’s not to say it was easy for my wife and she did an amazing job at keeping things in check.”

Russell returned to work in November and now that a year has passed since his treatment, life had returned to normal.

“That’s one great thing about having a couple of young boys. I think more about getting the most out of every day and now, even more so since my diagnosis, I want to grow old and see my kids enjoy life as much as I have.

“I was invited to see some of the researchers in action ...”

“My diagnosis reinvigorated my interest in science (a favourite subject at school). Initially it was about absorbing the diagnosis, understanding my cancer and the treatment I had. We put a lot of trust in the medical profession to get our treatment right.

“Now I want to understand more about the choices and my future options if I’m to need treatment again.

“I felt very well supported in my treatment in Australia. Future treatments and trials are critical as we search for new ways of combating and managing cancers and especially lymphomas.”

The Leukaemia Foundation’s research program is what attracted Russell to Light the Night last year and with the support of family and friends, here and in the U.S., and colleagues, he raised $7500.

“Everyone who came loved the lanterns, and my boys still love lighting them up and running around with them in the yard at night.

“Having raised more than $5000, I was invited to meet and see some of the researchers in action at Westmead Hospital which was a great experience and makes me want to raise even more this year.

“Supporting the Foundation which supports research into finding treatments for what has become a life-threatening illness for me is the selfish reason.

“It’s a great way to raise the profile and support for further research. And it was great to share the experience with family and friends. It was an amazing spectacle of light at two iconic Sydney locations.”

To find a Light the Night walk to join, visit www.lightthenight.org.au or call 1800 500 088.

My Journey6

There are several common threads to the lives of William Richards and Adam McDonald who were matched earlier this year through the Blood Buddies program.

Both were diagnosed with diffuse large B-cell lymphoma (DLBCL), are similar in age, physically active, married and have offspring. They also work in a related part of the construction industry – a similarity they didn’t realise until they’d spoken to each other several times.

Although William, 48, of Sydney, was nearing his highest level of physical fitness last November, he sensed “something wasn’t quite right”, but as he was focused on a big cycling event in December, he put off seeing his GP until afterwards.

“There was a lot going on in our lives,” said William. He is married to Melissa and they have two sons, Nicholas, 13 and Luke, nine.

“Our eldest boy was about to start high school and we were living in a temporary house while ours was being renovated.”

On Christmas Eve 2015, William was told he had lymphoma. The weeks that followed were “very stressful” as he waited until late-January (due to the festive break) to have follow-up tests – PET and CT scans, a lymph node biopsy and heart test.

During this time, he found out about the Leukaemia Foundation while researching lymphoma on the internet, and during his first conversation with Sally Nicolson, one of our blood cancer support co-ordinators, she told him about Blood Buddies.

“I thought this was a good opportunity to discuss day-to-day issues outside the clinical environment, with someone who had been through it and could tell me what to expect,” William said.

“When I spoke to Melissa (Melissa Oxlad, National Patient Advocacy Coordinator) I said I’d like to be matched with someone my age, who potentially was in the same industry, and certainly someone who was active.

“I wanted to talk about the ins and outs and side-effects of treatment – what did it do to you, and what happens post treatment? Could you keep exercising throughout treatment and what about afterwards? So I could focus on something in the future.

“I’d dearly like to get back to where I was,” said William who, prior to his diagnosis, was riding six days a week – to and from work, training and racing.

William started chemo in mid-February and chose to speak to Adam the week after completing each of his six cycles.

“We’d talk about how I was going, how I was feeling and we got to know each

other,” said William who was midway through 17 sessions of radiotherapy when he spoke to Lymphoma News.

“It was great to have a sounding board and a different viewpoint and to talk stage-by-stage about symptoms, outcomes and recovery,” said William who has averaged three days a week on his bike since starting treatment.

Talking to Adam was an “all round good experience and very beneficial” for William and he has already recommended the program to a friend diagnosed with chronic myeloid leukaemia two months after him.

“He was struggling at first. I asked if he’d been in touch with the Leukaemia Foundation and recommended the buddy program.”

Adam, 35, of Melbourne was diagnosed with DLBCL in May 2014, a year after marrying, and has been in remission for 18 months. He and his wife, Madeleine, now have a seven month-old baby, Zac. Adam is a keen cricketer and he and Maddie ran in this year’s City2Surf in Sydney, raising funds for the Leukaemia Foundation.

When Adam “randomly” found out about the Blood Buddies program last year, he contacted the Foundation straight away to offer his assistance.

“I hoped to provide some level of comfort to the person I was matched with by sharing some of my experiences so they didn’t feel alone. It’s a scary road and often lonely.

“When I was being treated, I was fortunate to stumble across a friend of a friend who was a similar age and had been treated for the same disease 18 months before me.

“I found it reassuring to be able to ask questions about the whole process and gain strength from knowing there is ‘light at the end of the tunnel’.”

For Adam, being a Buddy has been rewarding, and he was recently matched with a second person with lymphoma.

“I’ve found that by sharing/opening up about my experience, how it changed me, and how I got through, and listening to someone else’s perspective while on the same path has been invaluable in my own longer-term recovery process.

“It’s an outlet outside of my family life where I can talk about things people just wouldn’t understand who haven’t had lymphoma.”

Blood Buddies William and Adam both benefited from sharing day-to-day experiences

Having a Buddy meant William Richards could talk about symptoms, outcomes and recovery and whether he could continue cycling during treatment.

Living Well7

Living Well8

Cancer related fatigue By Dale Ischia ESSA accredited Exercise Physiologist and ACSM cancer exercise trainer

The most common and perhaps most debilitating of all the blood cancer treatment side-effects is cancer related fatigue (CRF).

This daily lack of energy and whole-body fatigue is not relieved with sleep, nor is it the result of over exertion. This fatigue makes it difficult to cope with the normal demands of daily living due to a total lack of energy. CRF is not to be confused with tiredness that is often felt at the end of a long day, where energy is restored after a good sleep.

CRF typically displays the following characteristics:

• generalised weakness or feelings of heaviness;

• reduced ability to concentrate and perceived lack of short-term memory;

•reduced motivation or interest in engaging in usual activities;

•difficultly sleeping;

•fatigue that is not relieved by sleep; and

•difficulty completing normal daily tasks due to fatigue.

This form of fatigue usually diminishes one year after treatment finishes, however, 20-30% of people with CRF experience persistent fatigue that lasts five years or longer1.

There are many possible causes of fatigue that should be assessed by your treating practitioner, such as:

•blood levels, e.g., anaemia;

•various causes of anaemia, such as nutritional deficits;

• hypothyroidism (an underactive thyroid) – a common post-radiation treatment to lymph nodes in the neck;

•the cancer itself, especially if it causes anaemia;

•cancer treatments:

•i. chemotherapy – experience varies, but fatigue can last a couple of days and can extend beyond completion of treatment

•ii. radiation – has a cumulative effect, usually lasting 3-4 weeks after treatment ends

•iii. hormone treatment – can cause fatigue while on treatment

•iv. bone marrow transplant – fatigue can last up to 12 months

• medications, such as antihistamines, antidepressants, narcotics, and anti-nausea;

• depression and feelings of helplessness – it is common to confuse fatigue and depression, and it can be difficult to distinguish these conditions;

•depression can further exacerbate fatigue;

•pain;

•anxiety/stress;

•sleep disturbance;

•deconditioning;

•inflammation.

The good news is that deconditioning, depression, pain, inflammation, anxiety and sleep disturbance can all be helped by exercise.

Management tools for CRF

You can use various tools to help manage CRF.

• Relaxation/distress management. Join a support group. Practise daily relaxation/meditation.

•Pacing/energy conservation. Schedule your day/week to work out how much energy you can ‘spend’. Ensure a balance between energy conservation, restoration and expenditure.

• Plan a rest period during the day.

• Keep a diary for a week recording fatigue levels, activity, rest and energy expenditure.

• Eliminate any activities that are causing you to ‘crash’ the most.

•Distraction. Listen to music, watch a funny movie, laugh.

• Perform physical activity that is consistent and sustainable. A graded exercise program is the best management for fatigue disorders.

• Nutrition. Eat a healthy, balanced diet that regulates blood sugar levels, so you are not experiencing extreme highs and lows.

• Sleep hygiene. Go to bed and wake at the same times each day, reduce/limit daytime naps, consume caffeine only before 11am, no screens one hour before bed.

•Adequate pain control.

• Get out into nature. Go for a walk in the morning sun. Enjoy morning sun on your face for 20 minutes. This will improve your mood and regulate your circadian rhythm.

The fatigue cycle

Too much rest causes your muscles to reduce in size and strength, which makes it harder for you to move. As a result, you become less active which causes more deconditioning, fatigue and weakness. The cycle of deconditioning can be reversed – by exercise, which is the best way to cope with fatigue. It is something you can control and there are no bad side-effects. Exercise will have positive effects on your physical and psychological self.

Exercise

Exercise is now recommended as a part of every cancer treatment plan. Research has found it has no harmful effects on patients with cancer and has shown that those who exercise regularly experience less CRF.

In the next issue of Lymphoma News, Dale Ischia (www.movingbeyondcancer.com.au) explains how exercise can be used to reduce CRF.

Useful linkhttp://my.clevelandclinic.org/health/diseases_conditions/hic_Cancer_Overview/hic_Cancer-Related_Fatigue

1 Bower JE. Cancer-related fatigue-mechanisms, risk factors, and treatments. Nature reviews Clinical oncology. 2014;11(10):597-609.

People with Hodgkin lymphoma (HL) can be spared the serious side-effects of chemotherapy by having a high-tech scan, which can predict the outcome of treatment.

In a Leukaemia Foundation supported* study, Response Adapted Therapy in Hodgkin’s Lymphoma (RATHL), published in the New England Journal of Medicine**, positron-emission tomography–computed tomography (PET-CT) was tested as a measure of early response to chemotherapy in order to guide treatment.

Doctors in the clinical research collaborative, Australasian Leukaemia Lymphoma Group (ALLG), joined European partners in the study that enrolled more than 1200 patients with advanced HL. In Australia and New Zealand, 17 hospitals participated, recruiting 85 patients to the study.

PET scans*** were used to determine the effect of initial treatment after two cycles of standard chemotherapy. Doctors then decided on either more or less intensive chemotherapy.

Patients who had a ‘clear’, or negative, PET scan were randomised to continue standard chemotherapy with or without bleomycin, a drug that has the risk of lung toxicity.

The study showed that those who stopped having bleomycin after the ‘clear’ scan had the same survival rates as those who continued it, but they were spared side-effects, such as scarring of the lungs.

Scans can spare lymphoma patients intensive chemoPatients on the trial who did not have a ‘clear’ PET scan after two cycles (which suggested they had a more resistant form of the disease) were then given a more intense chemotherapy regimen.

Associate Professor Judith Trotman, Director of the Haematology Clinical Research Unit, Concord Repatriation General Hospital, and ALLG lead investigator for the study said the aim of the large, scientifically rigorous, and closely monitored study was to maximise patient’s survival with minimal toxicity.

“The interim (after two treatment cycles) PET-scan enabled us to identify those patients with a very high probability of survival (97% at three years),” Assoc. Prof Trotman said.

“This study showed we can tailor patients’ individual treatment and spare them lung toxicity as well as the serious side-effects and infertility consequences of intensive chemotherapy.

“HL is seen most commonly in young adults. This approach, along with a reduction in the need for radiotherapy, should substantially reduce damage to healthy tissues and the risk of second cancers caused by treatments.

“On the other hand, persisting abnormalities on the interim PET scan identified the small population (16% of patients) with more aggressive disease who needed much more intensive chemotherapy to increase their probability of survival,” she said.

Rosa Good participated in the study at Concord Repatriation General Hospital in Sydney and at the time her son was two years old.

“When I saw the PET scan become clear so quickly, I knew I would see him start school. I’ve been in remission for five years now and am confident I’ll be there for his first day of high school too,” Rosa said.

* The Leukaemia Foundation funded the Phase III clinical trial in 2010. The chief investigators were Professor John Seymour, Dr Judith Trotman, Dr Leanne Berkahn and Professor Michael Fulham. It was the first collaborative project funded through Cancer Australia’s Priority-driven Collaborative Cancer Research Scheme.

** Johnson P. et al., Adapted treatment guided by interim PET scan in advanced Hodgkin’s Lymphoma New England Journal of Medicine (2016).

*** An imaging test that uses a tiny amount of radioactive glucose to detect disease in the body.

New potential treatment for relapsed/refractory HLPD1 inhibitor therapy is an important new treatment for patients with Hodgkin lymphoma (HL) that is resistant to chemotherapy, including an autologous stem cell transplant (ASCT).

PD1 inhibitor drugs act by stimulating the patient’s own immune system (T-cells) to attack the lymphoma cells.

These T-cells have the potential to kill HL cells but in many patients have been switched off by proteins on the lymphoma cells that bind to the T-cells and make them inactivate. PD1 inhibitor therapy blocks this interaction and enables the T-cells to be reactivated.

There are two main PD1 inhibitors, nivolumab and pembrolizumab, which have been evaluated in trials in HL with very impressive results, although the follow-up time is not long enough yet to determine whether the response seen in many of these patients will be maintained long-term.

The most recent data on nivolumab was presented recently at two major international conferences.

Dr Anas Younes, chief of the Lymphoma Service at Memorial Sloan Kettering Cancer Center (U.S.) presented data from a trial of nivolumab (given as an IV infusion as an outpatient every two weeks) to treat HL in 80 patients who had failed both an ASCT and brentuximab. Patients in the trial were relatively young (average age 37 years) and heavily pre-treated; all had a minimum of four prior lines of therapy.

Responses were seen in more than 70% of the trial patients and in many of them the response was maintained after 6-12 months of therapy, but longer follow-up is not available. The therapy was generally well tolerated.

Results have been similar in the pembrolizumab studies, which were updated at the European Hematology Association Annual Congress in Denmark in June.

PD1 inhibitor therapy is likely to be a major advance in the treatment of relapsed HL. Nivolumab and pembrolizumab are both available in Australia and can be purchased from the manufacturing drug companies, but neither drug is currently available on the Pharmaceutical Benefits Scheme.

Australian trials

A clinical trial randomising patients with relapsed HL to either brentuximab vedotin or pembrolizumab is expected to open at Peter MacCallum Cancer Centre by October.

The study’s principal investigator, Dr Michael Dickinson said the trial was for people who had not received brentuximab vedotin or a PD1 inhibitor (and related drugs) in the past, and who had relapsed after standard chemotherapy and an ASCT; or, who for reasons of fitness or age, were not suitable for ASCT.

The chances of being on either arm of the study are 50/50.

“It provides an opportunity for patients who are in need of either of these new and active drugs, and will help answer the question of which one is more effective and tolerable in this setting,” Dr Dickinson said.

Speak to your haematologist about your eligibility for this trial.

Hodgkin Lymphoma9

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Our Head of Blood Cancer Support, Anthony Steele attended the 2016 International Waldenström’s Macroglobulinemia Foundation (IWMF) Educational Forum thanks to the Australian affiliate group – WMozzies. Here’s his report from the meeting.

Around 150 people are diagnosed with Waldenström’s Macroglobulinaemia (WM) each year in Australia. This means they are often separated by large distances and can feel isolated.

My understanding of the unmet needs of everyone with this rare condition has been heightened by the WMozzies – a dedicated patient group of people affected by WM.

Aware of the IWMF’s work through their impressive publication, Torch, I looked forward to meeting the amazing volunteers who are the IWMF and to attending their volunteer-organised forum in Providence (U.S.). The speakers, who present in their own time and at no cost, are involved in many areas of clinical practice and research.

The huge crowd at the introductory session for workshop first-timers and the newly diagnosed surprised me. It’s admirable that this group has a place to go to learn more about their disease directly from the world’s best WM clinicians and researchers, to feel supported, to learn a new health language, to share experiences, and importantly, to feel less alone with this condition.

A fifth of the audience had other family members with WM or another blood cancer, which I found astonishing. I wasn’t aware of the extent the familial link in WM. What was also affirmed to me was that no two people with WM have the same disease experience; WM is truly a diverse disorder.

The forum’s speakers explained some complex themes in language that was easy to understand and I was inspired by their candor when discussing how they treat

patients. In particular, they emphasised how they consider the patient experience, and how the patient is feeling, as much as a patient’s test results when deciding on how and when to treat. The reason for this individualised approach is that some people with the same test result feel good, while others feel terrible!

Questions put to the speakers at the end of this session tended to be those ‘things’ that play on the minds of people with WM who were still coming to terms with so many complex topics, language, and coping strategies. There, they could be explored in a safe place. In subsequent sessions, the questions were more technical and specific and the depth of knowledge of many WMers about their blood cancer was truly astounding. What an empowered group!

When the other forum participants then joined us, the conference room filled with more than 300 participants. They had travelled from near and far to learn more about WM or how to care for a loved one with this rare disease.

We were introduced to the four pillars of the IWMF’s strategic roadmap – the basis of its quest to beat this disease through focused research:

•cell signaling;

•‘omics’ – genomics, epigenomics, etc.;

•immunology; and

•the bone marrow microenvironment.

During the rest of the workshop the topics covered became increasingly more in-depth and we gained a deeper insight into WM symptoms, disease complications, treatment options available now and in development, and recent research findings that someday may lead to a cure.

We learned about survivorship issues, how people can live well with this disease, and that not every illness or symptom is related to WM; normal ageing processes continue. A person with WM talked about her

personal journey and how she manages living with the disease despite its impact on her life. This presentation, which was deeply moving, enabled others to discuss their issues in a setting where they were truly understood and supported.

I met many people during the workshop, from the U.S., UK and beyond. They were friendly and welcoming, and I made many ‘Waldenfriends’.

With the broader knowledge I now have of WM and the diversity of people it affects, I look forward to more actively supporting Australians with WM and extend my thanks to the WMozzies for the opportunity to attend the forum.

At the IWMF forum, Anthony Steele discussed the partnership between the Leukaemia Foundation and the Australian Waldenström’s Macroglobulinema Community (WMozzies), an affiliate of IWMF, which can be viewed on YouTube: https://youtu.be/cIV46n2PYfI

2016 IWMF Educational Forum round-up

WMozzies and Foundation supporting Australians with WMThe WMozzies and the Leukemia Foundation, which provides assistance with peer support, advocacy, discussion forums and educational information, work together to support Australia’s WM community.

Recent collaborative activities between the two organisations include:

•The new WMozzies website, which is live (www.wmozzies.com.au) and includes a link to a donation page link. All donations go towards WM activities, and may include funding Australian clinicians to attend IWMF workshops and other education projects for the benefit of people affected by WM.

•Dr Constantine Tam (Peter MacCallum Cancer Centre, Melbourne) is leading the development of new WM treatment guidelines in Australia, which are being reviewed by a panel of Australian haematology WM specialists prior to publication. This is the first update in more than 10 years.

•The IWMF and the Leukaemia Foundation will co-fund an establishing Australian clinician with an interest in WM and its management to attend the 9th International Workshop on Waldenström’s (Amsterdam, The Netherlands) from October 6-9, 2016. Tell your haematologist/oncologist about this opportunity. More information: www.wmworkshop.org

• Last November, the Foundation hosted a WM education and support day in Sydney with presentations by Judith May (former President of IMWF), her husband, Michael, both from the U.S. and Associate Professor Judith Trotman (Concord Hospital). Videos of these presentations can be viewed at:

•https://www.youtube.com/watch?v=rqi8oEXJXUY

•https://www.youtube.com/watch?v=KUa3cREFrSk

•https://www.youtube.com/watch?v=3tjoBbW7nSM

The Q&A session was recorded and a DVD has been developed.

Waldenström’s Macroglobulinaemia10

By Odette Buelens Skin Lymphoma Nurse Practitioner, Peter MacCallum Cancer Centre

A new Multidisciplinary Cutaneous Lymphoma Clinic has been established at the new Peter MacCallum Cancer Centre facility that is part of the Victorian Comprehensive Cancer Centre in Melbourne.

The first clinic was held on August 12 and it will run on Friday mornings with the exception of the first Friday of the month.

There is a range of specialists at the clinic – dermatologists, haematologists, radiation oncologists, a skin lymphoma support nurse and a skin lymphoma nurse practitioner.

The members of our team are Professor Miles Prince, Associate Professor Chris McCormack, Dr Belinda Campbell, Dr Carrie Van Der Weyden, Robert Twigger, dermatology registrars and me. Patients can be referred to this clinic via their GP or specialists.

People with a diagnosis of mycosis fungoides (MF) or Sezary’s syndrome (SS) may be asked to be part of the Prospective Cutaneous Lymphoma International Prognostic Index (PROCLIPI) study that is underway at Peter MacCallum Cancer Centre.

We are lucky to be part of this worldwide data collection and sharing project on people with cutaneous lymphoma.

Cutaneous T-cell lymphoma is recognised not only as a rare/orphan disease, but also a diverse condition in clinical presentation, histopathology and molecular features. The current staging does not accurately stratify patients according to survival.

The PROCLIPI study has resulted following the formation in 2013 of the Cutaneous Lymphoma International Consortium (CLIC) by the international community of experts in cutaneous lymphoma.

CLIC is an unprecedented large-scale collaborative alliance between the International Society of Cutaneous Lymphoma, EORTC Cutaneous lymphoma Task Force, US Cutaneous Lymphoma Group, Australian Skin Lymphoma Network and UK-Cutaneous Lymphoma Group.

The shared goal of each of these groups is to bring together an international community to produce meaningful large-sample data in

this group of rare lymphomas.

The CLIC groups have collaborated to establish the machinery to work cohesively, and to develop consistent and well-defined goals and endpoints using a standard protocol.

PROCLIPI has been developed as a priority project. The

aim of the project is to study all stages of MF and SS to determine important prognostic markers and treatment responses to develop a prognostic index,

which will augment clinical staging and can be utilised for risk stratification in clinical management or therapeutic trials. The overall objective is to improve clinical outcomes in cutaneous lymphoma.

Due to the rarity of this lymphoma subtype, only a large, international collaboration would include sufficient patients to reach statistical significance.

Study methods

Data will be collected in patients with all stages of MF/SS (IA-IVB):

•at diagnosis;•when new treatments are planned;

•at stage progression; and

•annually. Data to be collected includes clinical, immunohistochemical, haematological, and genotypic information, as well as treatment and response data. The data will be analysed for overall survival, disease-specific survival, time to progression, and time to next systemic treatment.

The identification of poor prognostic factors will be used to build a prognostic model to better identify those patients with a high risk of disease progression.

If you would like to find out more about the Cutaneous Lymphoma International Consortium or PROCLIPI, please visit: www.clicstudy.org

For more information, contact Odette Buelens, Skin Lymphoma Nurse Practitioner, Peter MacCallum Cancer Centre. Ph 03 8559 5000 pager 1110125.

New cutaneous lymphoma clinic and international PROCLIPI study

World-first WhiMSICAL studies WM clinical experienceAn Australian-inspired global survey of people’s Waldenström’s Macroglobulinaemia experience is a world first.

The WhiMSICAL* project is an ethically approved survey of patient-derived clinical data, and WM patients in all countries are invited to participate.

The overall aim is to use data provided by people with WM to help advance research, current knowledge and understanding of this disease.

Data provided by WhiMSICAL also will assist in submissions to regulatory authorities for funding of emerging new WM treatments such as bendamustine (Treanda®) and ibrutinib (Imbruvica®), particularly in countries such as Australia, Canada and United Kingdom.

In Australia, Pharmaceutical Benefits Scheme funding for WM is currently not available or has restrictions for novel WM

treatments, such as bendamustine and ibrutinib that are available worldwide.

CART-WHEEL (Center for Analysis of Rare Tumors) is a database designed to address some of the barriers facing effective research into rare cancers.

This database uses a privacy-protected internet-based questionnaire which can be completed by WM patients on the CART-WHEEL website. They have control over personal details by providing consent to different uses of entered data.

The questions cover areas including:

•patient demographics;

•disease specifics (staging, chronology of symptoms, IgM levels, full blood count information, Somatic MYD88 and CXCR4 mutation status, etc.);

•treatments, how they were accessed and treatment side-effects; and

•personal and family medical history.

The information gathered is stored securely, treated confidentially, and analysed by WhiMSICAL and CART-WHEEL researchers only, to gain a better

understanding of WM.

The principal investigators are Associate Professor Judith

Trotman and Dr Ibrahim Tohidi-Esfahani of Concord

Repatriation General Hospital, Sydney.

To take part in this study visit: www.cart-wheel.org

* Waldenström’s Macroclobulinaemia Study Involving Cart-wheeL.

Associate Professor Judith Trotman.

Cutaneous Lymphoma11

TASMANIA24 Aug 11am-1pm Understanding Blood Cancer Forum, Hobart

12 Oct 11am-1pm Hobart Blood Cancer Support Group

26 Oct 11am-12.30pm Hobart Man Cave

9 Nov 11am-1pm Clinical Trials, Hobart

15 Nov 10.45am-2pm Caring for the Carers, Launceston

30 Nov 11am-2pm Southern Tasmanian Christmas Party, Hobart

6 Dec 12-2pm Blood Cancer Christmas BBQ, Launceston

VICTORIA

Melbourne Metro1 Sep 10-11.30am Brighton Blood Cancer Support Group

10 Sep 10am-1pm Annual Blood Cancer Conference, Melbourne

7 Oct 10-11.30am Man Cave

10 Nov 10.15-11.45am Bone Marrow and Stem Cell Transplant Support Group, Hawthorn

Barwon South West27 Oct 10am-12pm Barwon South West Region Blood Cancer Support Group

23 Nov 10am-1pm Navigating the Healthcare System, Warrnambool

Gippsland16 Sep 1.30-3pm Bairnsdale Blood Cancer Education & Support Group

(also 25 Nov)

10 Oct 1.30-3pm Traralgon Blood Cancer Support Group

18 Oct 10-11.30am Carers Morning Tea, Berwick

20 Oct 10.30am-2.30pm

Living with Blood Cancer Education Program, Warragul

10 Nov 11am-3pm Education forum: Legal Matters, Koo Wee Rup

Grampians3 Nov 9.30-11am Ballarat Blood Cancer Support Group

Hume14 Sep 10-11.30am Cancer Survivorship Morning Tea with guest speaker, Shepparton

23 Nov 10am-12pm Hume Blood Cancer Support Group, Shepparton

Loddon/Mallee17 Oct 1.30-3.30pm Mildura Blood Cancer Support Group

WESTERN AUSTRALIA

Perth Metro19 Sep 10am-12pm Perth Blood Cancer Education Session (also 17 Oct, 21 Nov)

Bunbury1 Sep 10.30am-

12pmBunbury Regional Blood Cancer Network (also 3 Nov, 1 Dec)

Great Southern12 Oct 10am-12pm Great Southern Albany Blood Cancer Network

Peel16 Sep 1-2.30pm Port Kennedy Blood Cancer Support Network (also 21 Oct,

18 Nov)

20 Oct 10.30am-12pm

Peel Region Blood Cancer Network (also 17 Nov, 8 Dec)

NEW SOUTH WALES & AUSTRALIAN CAPITAL TERRITORY

Sydney Metro17 Aug 2-4pm Randwick Blood Cancer Education & Support Group

(also 21 Sep, 19 Oct, 16 Nov, 14 Dec)

26 Aug 10am-12pm Sydney & North Sydney Blood Cancer Education & Support Group

29 Aug 10-11.30am St George Blood Cancer Education & Support Group (also 26 Sep, 31 Oct, 28 Nov, 19 Dec)

31 Aug 11am-1pm Westmead Blood Cancer Education & Support Group (also 28 Sep, 26 Oct, 30 Nov, 14 Dec)

9 Sep 10am-12pm Concord Blood Cancer Information & Support Group (also 14 Oct, 11 Nov, 9 Dec)

19 Sep 10am-12pm Liverpool Blood Cancer Information & Support Group ACT & Southern NSW12 Sep 11am-1.30pm Goulburn & Surrounds Blood Cancer Coffee Group

(also 10 Oct, 14 Nov, 12 Dec)

21 Sep 10.30am-12.30pm

Eurobodalla Shire Blood Cancer Education & Support Group, Moruya (also 19 Oct, 16 Nov, 21 Dec)

Central Coast25 Aug 10-11.30am Gosford Blood Cancer Education & Support Group

(also 29 Sep, 27 Oct, 24 Nov)

30 Aug 2-3.30pm Wyong Blood Cancer Education & Support Group (also 27 Sep, 25 Oct, 29 Nov)

Central West & Far West1 Sep 10-11.30am Orange Cancer Education & Support Group (also 6 Oct,

3 Nov, 1 Dec)

7 Sep 10.30am-12pm

Dubbo Blood Cancer Education & Support Group (also 5 Oct, 2 Nov, 7 Dec)

8 Dec 11am-12pm Mudgee Blood Cancer Education & Support Group

Hunter4 Oct 10am-12pm Newcastle Blood Cancer Education & Support Group

(also 13 Dec)15 Nov 10.30am-

12pmTaree Blood Cancer Education & Support Group

Illawarra & Shoalhaven14 Sep 10.30am-

12.30pmWollongong Blood Cancer Education & Support Group, Figtree (also 12 Oct, 9 Nov, 14 Dec)

28 Sep 10am-12pm Southern Highlands Blood Cancer & Support Program, Bowral (also 23 Nov)

Mid North Coast25 Aug 11.30am-1pm Coffs Harbour Blood Cancer Information & Support Group

(also 22 Sep, 27 Oct, 24 Nov, 22 Dec)19 Sep 1-3pm Port Macquarie Blood Cancer Information & Support Group

(also 17 Oct, 21 Nov, 19 Dec)New England

18 Oct 2-4pm Tamworth Blood Cancer Education & Support Group (also 18 Dec)19 Oct 2-3.30pm Armidale Blood Cancer Information & Support Group (also 21 Dec)

Northern Rivers15 Sep 10am-12pm Grafton Blood Disorder Support & Morning Tea Group

(also 20 Oct, 17 Nov, 15 Dec)

21 Sep 10am-12pm Tweed Heads Blood Disorder Support & Morning Tea (also 19 Oct, 23 Nov)

SOUTH AUSTRALIA1 Sep 10am-12pm Women’s Support Group, Henley Beach (also 6 Oct, 3 Nov, 1 Dec)

8 Sep 10am-12pm Southern Adelaide Support Group, Noarlunga Downs (also 13 Oct, 10 Nov)

21 Sep 11am-1pm Strathalbyn Support Group (also 19 Oct, 16 Nov)

27 Sep 10.30am-12.30pm

Men’s Support Group, Northfield (also 29 Nov)

11 Oct 10am-12pm Port Lincoln Support Group

31 Oct 5.30-6.30pm Mt Gambier Support Group

NORTHERN TERRITORY25 Aug 10-11.30am Alice Springs Support Group (also 29 Sep, 27 Oct, 24 Nov, 15 Dec)

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: This newsletter has been produced through an unrestricted educational grant from Roche.

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

www.leukaemia.org.au LeukaemiaFoundation LeukaemiaAus leukaemiafoundation

What’s on near you12

NATIONAL TELEPHONE FORUMS

General lymphoma and lymphoma-subtype (WM, HL and cutaneous) telephone forums are held regularly for patients in regional and remote areas, and metropolitan patients who have difficulty accessing our support and education activities. For the dates, to register, and to find out more, contact Karen Matoga on 03 9949 5821 or lymphoma@leukaemia.org.au

World Lymphoma Awareness Day activities are listed on page 3

To become a member of the Lymphoma Network closed group on Facebook: https://www.facebook.com/groups/LymphomaLFA/