• Legs Out Roundup

• 2023 Budget Announcements 

• Chemo Brain

• Chronic Disease GP Management Plan

• Spotlight on a clinical trial

• Medication approvals

• Missed our recent Relapsed Refractory webinar - watch it here or listen on Spotify

• Upcoming events - young adult series, Hodgkin Lymphoma, Supporting Families, CLL Hybrid event

• Support groups upcoming dates

Legs Out for Lymphoma wrap-up

Thank you Lymphoma LEGends!!!

During March and April more than 600 pairs of legs hit the pavement, lapped the park, kicked and danced, swam, cycled and climbed to get their Legs Out.

We are leg-static to announce that our Legs Out for Lymphoma fundraising goal has been met - more than $160,000 raised! This will directly support lymphoma and CLL patients to access information, to learn about their subtype, to feel empowered, and to be supported by one of our Lymphoma Care Nurses so they do not face lymphoma alone.

Thank you very, very much to our patients and families, lymphoma community, supporters, donors and sponsors - you are LEGends!!

2023 Recent Budget Announcements 

Subsidised Genetic Testing

The government has allocated funding for testing genetic variants in patients suspected of having either a myeloid or lymphoid haematological malignancy, such as lymphoma. This funding will have significant outcomes for patients, leading to more precise diagnoses, personalised treatment plans, and improved overall outcomes. By analysing specific genetic variants, doctors can gain valuable insights into the nature of the disease, its aggressiveness, and potential response to different treatment options. 

What does this mean for you?

This information means doctors have more information about your lymphoma, to help you make informed decisions about treatments. These may include targeted therapies or clinical trials that may improve outcomes and have fewer side effects. 

Assistance for IVF- assisted and reproductive technology storage

Starting from 1 July 2023, the government will subsidise the storage costs of eggs, sperm, or embryos for eligible individuals. Currently, fertility preservation options are different for each person, depending on state based programs that are available, and often there are out of pocket costs. 

What does this mean for you?

For people diagnosed with lymphoma, the storage subsidy recognises the impact that treatments can have on fertility. By providing support for storing eggs, sperm, or embryos, you can focus on treatment and have the peace of mind that their fertility options are preserved until you are ready to start a family.

Chemo Brain- ‘Cancer Related Cognitive Impairment’

Cancer Related Cognitive Impairment (CRCI) or more commonly known as ‘Chemo Brain’ or ‘Brain Fog’ affects up to 70% of all people living with cancer.

What is cognition?

Cognition is the everyday functioning of our brains and involves our perception, attention, language, memory, reasoning, judgement, and problem solving.

What are the symptoms of Cancer Related Cognitive Impairment?

Symptoms can vary between individuals; some may have more subtle symptoms, for others symptoms can be more prominent. For most people CRCI will improve over time, but some may have lasting effects. Reporting new symptoms of CRCI to your treating team is important so other potential causes can be ruled out- for example infection.

What causes Cancer Related Cognitive Impairment?

Despite its name, ‘Chemo Brain’ CRCI isn’t solely caused by chemotherapy! In fact, the exact cause of these cognitive changes experienced by people living with cancer is unknown. It is likely that there are many contributing factors including:

• The cancer itself (particularly cancers that spread to the brain)

• Chemicals released by cancer can affect memory

• Treatment including surgery, radiotherapy, immunotherapy, and chemotherapy

• Supportive medications including steroids, pain medications and antivirals

• Side effects of treatment such as infections, fatigue, low blood counts, disrupted sleeping patterns, hormonal changes, malnutrition etc

• Cancer related issues/side effects such as pain, inflammation, and stress/anxiety/depression

What are some management strategies?

There are many strategies that can help improve symptoms of CRCI depending on what difficulties you are experiencing. You may like to try some from the image below. 

Daily Routine: Some people find having a structured daily routine helpful. By organising tasks that require the most concentration when you usually have the most energy (eg. performing more difficult tasks in the morning when you feel best compared to afternoon/evening or vice versa). Using checklists or reminders or keeping a diary can assist if you're having difficulties with memory.

Healthy lifestyle: A healthy lifestyle is important for everyone! Exercise has many benefits including increasing blood flow and oxygen to your brain. It’s important to fuel your body with adequate nutrition and implement healthy sleeping habits.

Memory and Stimulation: Stimulating your brain can improve symptoms of CRCI. This can be through creative activities such as art, brain games including jigsaw puzzles or crosswords, learning a new skill such as a new language or more formal ‘brain training’ through cognitive rehabilitation.

Involving others is important! It may mean bringing a support person along to your appointments to assist with remembering key information or seeking advice from an Occupational Therapist who can assess your CRCI and assist with planning management strategies for your individual situation.

Where can I go for more information?

521-Memory changes and chemotherapy (chemo brain) | eviQ

Understanding Changes in Thinking and Memory (cancer.org.au)

Lymphoma Action | ‘Chemo brain’ (cancer-related cognitive impairment) (lymphoma-action.org.uk)

Brain Fog and Cancer Podcast | Cancer Council NSW

Cancer-related cognitive impairment sometimes known as 'chemo brain' - YouTube

Call our Nurse Line on 1800 953 081

Chronic Disease GP Management Plan

Chronic medical conditions, such as lymphoma, can be complex and require ongoing management. For patients, a coordinated and comprehensive approach to care can be essential. This is where a GP Management Plan (GPMP) can help.

A GPMP is a plan developed by a general practitioner (GP) in collaboration with the patient that outlines the management of a chronic medical condition. The plan includes an assessment of the patient's needs, setting goals, and developing strategies to achieve those goals. A GPMP can include various aspects of care such as medication management, lifestyle modifications, and referrals to other healthcare professionals.

Once a GPMP is developed, the patient can receive Medicare benefits for certain allied health services, such as physiotherapy, exercise physiology or dietitian services, under the Chronic Disease Management (CDM) scheme. The CDM scheme allows eligible patients to receive up to five Medicare-rebated allied health services per calendar year.

It may be worth discussing with your GP whether a GPMP is suitable for you. Developing a plan with your GP can help to ensure that you receive coordinated and comprehensive care throughout your treatment and after.

For more information ask your GP or see this link: https://www.servicesaustralia.gov.au/chronic-disease-gp-management-plans-and-team-care-arrangements?context=20

Video links to allied health videos: 

• Dietician: https://youtu.be/YIJVKR2FrHU
• Sleep expert: https://youtu.be/a-OF830tv_U
• Exercise physiologist: https://youtu.be/9unBzmxaOgo

PBAC Updates

At the recent March meeting, PBAC recommended Zanubrutinib for funding for use in people with previously untreated CLL and relapsed/ refractory CLL. Until Zanubrutinib is available, there is a compassionate access program (free of charge), so if you meet the criteria, Zanubrutinib may be a treatment option for you. To find out more, discuss with your doctor or call our nurse support line 1800953081.

Also at this recent March meeting, PBAC approved a new anti nausea medication called Akynzeo. This medication is available in oral tablets and can be used to prophylactically stop/ and or reduce chemotherapy induced nausea and vomiting associated with lymphoma treatment.

Our team will continue to work hard to ensure that all Australians have access to the best possible treatment for their specific type of lymphoma. We thank our community for their ongoing support and encourage them to stay tuned for further updates on our advocacy work.

Spotlight on a clinical trial

Clinical trials offer the potential for cutting-edge treatments and improved outcomes, and can provide patients with access to novel therapies not yet widely available in Australia. By highlighting ongoing clinical trials in lymphoma, patients and their loved ones can learn about promising new approaches to treatment, potential side effects and risks, and how to participate in a trial if they are interested. Spotlighting clinical trials can help you feel empowered and informed about your treatment choices and improve overall awareness about lymphoma research.

**It is important to note that not all clinical trials may be suitable for every patient, and that patients should discuss potential treatment options with their doctor before making any decisions.

Trial Name: ALLG NHL32

Primary Central Nervous System Lymphoma (PCNSL) is a rare and fast-growing B-cell non-Hodgkin lymphoma. This type of lymphoma is found in the central nervous system (CNS), which is the part of the body that controls all body functions. The B-cell part of the diagnosis means that your body is making abnormal B cells, which are a type of immune cell that help us to fight infections.

This trial includes a new treatment for Primary CNS B-Cell lymphoma called Pembrolizumab, which will be given to patients after you have received the standard initial combination chemotherapy treatment prescribed by your doctor. It is hoped that this treatment will result in a better prognosis for those with primary central nervous system lymphoma, with less severe side effects.

To be eligible for this trial, you must be aged over 18 years with a new diagnosis of B-cell Primary CNS lymphoma and eligible to receive the standard chemotherapy induction therapy. This trial is currently open to patients in Victoria, NSW, Western Australia, South Australia and Queensland.

Trial Name: ALLG HD13

Hodgkin lymphoma is a fast-growing type of blood cancer that affects a part of the immune system called the lymphatic system. It occurs when white blood cells (lymphocytes) in the lymphatic system become abnormal and keep growing.

The HD13 trial (RADAR) is the Australian / New Zealand arm of an international clinical trial run by University College London. It aims to see whether we can improve on standard treatment for early-stage Hodgkin lymphoma by swapping one of the drugs in the standard chemotherapy treatment combination (called ABVD), with a cancer drug called brentuximab vedotin, in a treatment called A 2 VD. Brentuximab vedotin has been used to treat relapsed/refractory Hodgkin lymphoma and has evidence of reduced toxicity and side effects compared to standard treatments.

To be eligible for this trial, you must be an adult with early-stage Hodgkin lymphoma that has not yet been treated. This trial is currently open to patients in Victoria, NSW and the Northern Territory, with hospital sites opening in Queensland, South Australia and Tasmania in coming months.

For more information on ALLG clinical trials, visit https://www.allg.org.au/clinical-trials-research/current-clinical-trials

For more information on clinical trials, you can check our ClinTrial refer (https://web.clintrialreferapp.com/searchTrial/list), speak to your haematologist or contact our nursing team 1800953081.

Missed our Relapsed / Refractory Diffuse Large B-Cell Lymphoma Webinar?

WATCH IT ABOVE

If you missed our most recent webinar on relapsed refractory diffuse large b-cell lymphoma, don't worry! 

You can still catch up on the valuable insights shared by our expert speaker - Dr Gareth Gregory from Monash Health. The webinar provided an in-depth discussion on the latest treatment options and management strategies for Relapsed / Refractory Diffuse Large B-cell Lymphoma. See below for our future webinars and events from Lymphoma Australia.

LYMPHOMA IN ADOLESCENT AND YOUNG ADULTS (AYA) Mini Series

Are you an adolescent or young adult who has recently been diagnosed with lymphoma? Join us for the start of our mini-series.

PART 1: What Happens When You Are Told You Have Lymphoma

Dr. Orly Lavee - St Vincent's Sydney discussed lymphoma in adolescent and young adults. Learn about the diagnosis and staging of lymphoma, as well as treatment options such as chemotherapy, immunotherapy, and radiation therapy. As a young patient, you may have additional concerns regarding fertility preservation, which Dr. Lavee will also address.

PART 2: Navigating the Healthcare System as AYA - Social and Welfare Considerations + Exercise

Duncan Phillips -  WA Youth Cancer Service
Are you an adolescent or young adult (AYA) with lymphoma struggling to navigate the healthcare system? The You Can team of experts will provide tailored advice on how to access appropriate health services and support, including social and welfare considerations that are specific to AYA patients. They will also discuss the importance of exercise during treatment and provide tips on how to safely incorporate physical activity into your routine, as well as strategies for staying active and taking care of your overall health and wellbeing.

DATE: 2 June 2023
TIME: 11am QLD/NSW/VIC/TAS, 10.30am SA/NT, 9am WA

PART 3: Long-Term Follow-up and Survivorship in AYA

With Associate Professor Kylie Mason - Royal Melbourne Hospital
Associate Professor Kylie Mason will discuss the unique challenges and considerations for AYA patients post-treatment. She will cover topics such as surveillance, managing late and long-term effects of treatment, and coping with emotional and psychological changes that may arise. She will also explore resources available to AYA lymphoma survivors, including support groups and survivorship programs.

DATE: 20 June 2023
TIME: 2pm QLD/NSW/VIC/TAS, 1.30pm SA/NT, 12pm WA

CLL Summit: Online & In Person Event

Do you know what your CLL cytogenetics are, and how that may impact your treatment?

Cytogenetics may sound like a scary word if you haven’t heard it before, but understanding your cytogenetics is an important part of your experience with CLL. Whether you are newly diagnosed or living with CLL this session will have something for you.

About the event: This event will be in person and online
In person venue: State Library of Queensland, Stanley Place, South Brisbane.
Online: You will be sent a link closer to the time
Date: 24th June 2023
Time: 2-4pm.

DATE: 24th June 2023
TIME: 2pm QLD/NSW/VIC/TAS, 1.30pm SA/NT, 12pm WA

Hodgkin's Lymphoma Webinar

Dr Shane Gangatharan will cover various aspects of the disease, including the latest research, treatment options, and support resources available to patients and their families.

DATE: 5th July 2023
TIME: 4pm QLD/NSW/VIC/TAS, 3.30pm SA/NT, 2pm WA

Upcoming Support Groups

Attending a lymphoma support group can offer an opportunity to connect with others who are going through similar experiences, providing a sense of community and understanding. Additionally, support groups can provide valuable information, resources, and emotional support that can enhance your overall well-being and quality of life.  So come along, in person or online and have a chat and a coffee and connect with our nurses as well.

Clink the underlined link below to register

• Under 40's Online Support Group - Thursday 1st June - 6pm
• Liverpool Support Group - Wednesday 14th June
• Watch and Wait Online Support Group - Friday 23rd June
• Orange - Regional NSW Support Group - Wednesday 21st June
• Patients in Remission Online Support Group - Wednesday 12th July

Join our nurses LIVE on Instagram & Facebook as we answer all of your questions.

WHEN: Wednesday Monthly - 12:30pm (QLD time)
HOW: Follow us on Instagram & Facebook turn on notifications from us, join us at the time and ask away!

Your input!

Do you have a topic you would like covered in our next newsletter? Is there a webinar or speaker you would like to hear about? Have a great podcast to share?
Send us your thoughts - email nurse@lymphoma.org.au