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Welcome to the latest edition of the Lymphoma Australia Newsletter
Inside this edition, we will be covering the following topics:
- Upcoming Support Groups
- Exercise and Lymphoma: Free Online Session
- Save the date: Patient Education Melbourne
- Follicular Lymphoma Webinar Recording
- The benefits of staying active
- Legs Out for Lymphoma
- CAR -T Therapy: Why Some Still Miss Out
- New Treatments for Lymphoma
- Go Dry this July
- Nurse Support Line 1800 953 081
Upcoming Support Groups
💚 Hodgkin Lymphoma Online Support Group -- 7th May
💚 CAR -T & Bispecifics Patient and Carer Seminar -- 13th May
💚 Lower North Shore Sydney In Person Support Group -- 20th May
💚 Waldenström's Online Support Group -- 20th May
💚 Exercise and Lymphoma Online Patient Education-- 29th May
💚 CLL Online Support Group -- 3rd June
💚 Cairns In Person Support Group -- 10th June
💚 Under 40's Online Support Group -- 26th June
💚 Melbourne In Person Support Group -- 31st July
If you are having trouble registering for an event, please contact our nursing team at nurse@lymphoma.org.au
Webinars and in-person education events are led by lymphoma experts who discuss the diagnosis and treatment of specific lymphoma subtypes and key research and treatment updates.
Check out below our upcoming and past education events:
Join us online for an important webinar on the role of exercise in living well with lymphoma.
Lymphoma Australia is hosting a free webinar with experienced Oncology Physiotherapist Sharyn Wappett, Director of Restore Oncology Care and Lymphoedema Clinic. In this session, Sharyn will discuss the importance of staying active, how to manage treatment side effects through movement, and ways to maintain and restore your quality of life during and after a lymphoma diagnosis.
Date: Thursday 29th May
Time: 4:00pm AEST
Venue: Free online session via Zoom
Register via the button below.
Highlights from Our Recent Follicular Lymphoma Seminar at Concord Hospital
Follicular Lymphoma Patient Seminar & Webinar – Event Recap
On April 10, 2025, Lymphoma Australia held its inaugural hybrid Follicular Lymphoma Patient Seminar & Webinar, with attendees joining in person at Concord Repatriation Hospital in Sydney and online. The session provided patients and carers with valuable updates and insights into follicular lymphoma care.
Event Highlights:
Professor Judith Trotman explored the concept of a "Functional Cure" in follicular lymphoma.
Dr. Angeline Josiah shared an overview of the principles of first-line treatment.
Dr. Ryan Low introduced the concept of Patient-Initiated Follow-Up.
Dr. Janlyn Falconer discussed upcoming treatments for relapsed follicular lymphoma.
The event concluded with a Q&A panel, giving participants an opportunity to engage with the expert speakers.
If you missed the live session or would like to revisit the presentations, the full recording is now available to watch on YouTube.
👉 Watch the full webinar below:
Exercise can greatly improve your physical and mental wellbeing, and research has consistently shown that some exercise every day can help manage many side-effects of treatment, or symptoms of lymphoma. Benefits include increased energy, better appetite, improved mental health, improved sleep and better pain management. Exercise can also stop your muscles from breaking down and weakening, which can happen very quickly if you are not using them.
Getting started is typically the hardest part, and there may be times when you do not feel able to exercise. The goal is to be as active as you comfortably can be and try exercising when you have the most energy. There are many different types of exercise and it’s important to find what you can safely enjoy - it doesn’t have to mean working out at a gym or running long distances. You can also seek help from a health professional such as an exercise physiologist, who can tailor a specific program to help suit your needs.
Many doctors now encourage people with lymphoma and other cancers to be as active as possible during treatment and recovery. However, you will need to check with your doctor before starting any exercise program, even if you exercised regularly before being diagnosed.
Some questions to ask your doctor could include:
• Can I exercise while I’m having this treatment?
• Are there any types of exercise I should avoid?
• I have a port or PICC line. What precautions should I take?
• I haven’t exercised much before. Do I need to have any general health checks first?
Learn more about why exercise is so important and how you can incorporate this in your life despite a lymphoma diagnosis in our Living Well with Lymphoma Series, or check out our Fact Sheet Fact Sheet: Exercise and Lymphoma
Get Your Legs Out This May 💚
May is here and it’s time to get your Legs Out for Lymphoma!
Whether you walk, run, roll or dance, every move you make this month helps raise vital funds and awareness for Australians impacted by lymphoma.
It’s not too late to register!
Sign up today and help fund our Specialist Lymphoma Care Nurses, who guide patients and their families through diagnosis and beyond.
“I never thought something as simple as going for a walk would feel so meaningful. Being active now reminds me that there’s life after lymphoma.”— Alicia, in remission from lymphoma
Raise $300 and earn a limited-edition Legs Out t-shirt: our way of saying thank you for making a difference.
“When someone is diagnosed with lymphoma, it can feel like their world has been turned upside
down… Thanks to your support, we can continue to be that steady presence.”
— Nicole, Specialist Lymphoma Care Nurse
Let’s move together this May, because no one should face lymphoma alone.
Join us now:
CAR T-cell therapy has been hailed as one of the most significant breakthroughs in the treatment of certain blood cancers, including lymphoma. While it offers hope to patients who have exhausted other options, access to this life-saving treatment remains limited in Australia.
Currently, CAR T-cell therapy is only publicly funded for a small number of lymphoma subtypes and is available in a limited number of specialised hospitals across the country. Patients who don’t meet the strict eligibility criteria, or who live in rural or remote areas, are often left without viable treatment options. The therapy, which involves modifying a patient’s own immune cells to target cancer, is complex and costly, making widespread access a challenge.
In the article, Lymphoma Australia shares the story of patients who have been denied access, despite their oncologists recommending CAR T-cell therapy as the most appropriate next step. It also includes a call to action for government and health authorities to expand funding, increase treatment centres, and remove barriers that prevent Australians from receiving equitable care.
To read the article, click the button below:
PBS Access to Epcoritamab (Epkinly) for relapsed or refractory diffuse large B-cell lymphoma (DLBCL).
As of May 1, 2025, Epcoritamab has been listed on the Pharmaceutical Benefits Scheme (PBS) for eligible patients with relapsed or refractory diffuse large B-cell lymphoma after 2 or more lines of systemic therapies. Eligible patients can now have immediate access to Epcoritamab.
Epcoritamab (Epkinly) belongs to a class of medicines called bispecific antibodies. It is designed to attach to immune cells, attaching to 2 types of cells in the body. T cells, which help fight infections and harmful cells, and B cells, where cancer grows. Epcoritamab (Epkinly) connects both these cells, activating the T cells to attack and destroy the cancerous B cells.
“PBAC came out in favour of listing Epcoritamab (Epkinly), saying it was satisfied it provides significant improvement in efficacy over rituximab plus gemcitabine plus oxaliplatin."
At the recent PBAC meeting, two new treatments for lymphoma were recommended:
Mogamulizumab for Cutaneous T-Cell Lymphoma
PBAC acknowledged that Mogamulizumab has a unique mechanism of action and agreed with clinician advice that this agent would be particularly useful in patients with blood compartment involvement.”
Polatuzumab Vedotin (Polivy) for frontline DLBC
Polatuzumab vedotin (Polivy) in combination with rituximab plus cyclophosphamide, doxorubicin, and prednisone (Pola+R-CHP) was recommended for the treatment of DLBCL in previously untreated patients with an international prognostic index (IPI) score of 3-5.
“PBAC was satisfied that Pola+R-CHP provides, for some patients, a modest improvement in progression-free survival over rituximab in combination with cyclophosphamide, doxorubicin, vincristine, and prednisolone (R-CHOP).”
However, a PBAC recommendation does NOT equal immediate patient access, as these treatments still need to be listed on the PBS. Lymphoma Australia will continue to work with all key decision makers to ensure these treatments are PBS-listed as soon as possible.
Get Ready to GO DRY this JULY for Lymphoma Australia!
We’re thrilled to announce that Lymphoma Australia is a proud beneficiary of Dry July 2025!
By going Dry this July, you'll be helping fund our incredible Lymphoma Care Nurses, who provide specialised support to people affected by lymphoma, through diagnosis, treatment and beyond.
How to get involved:
When registrations open, simply sign up using the Lymphoma Australia link. Every dollar you raise will go directly towards supporting people living with lymphoma.
Stay tuned, we'll be sharing the registration link and full details very soon!
Together, we can make a real impact this July.
Thank you for standing with us. 💚
We’re grateful to have a partnership with Dermal Therapy, who generously supply products that are included in our patient packs each year.
One standout product is the Dermal Therapy Very Dry Skin Cream, a clinically backed formula designed to support those experiencing skin-related side effects from treatment.
Everyone’s lymphoma and CLL experience is different. Our Specialist Lymphoma Care Nurses are here to help patients and families navigate the health system, access the most up to date information about lymphoma and to take the fear of the unknown out of the lymphoma journey.
Please call to speak to one of our nurses on 1800 953 081
You can email us on nurse@lymphoma.org.au
