• Update your details - get relevant information
• Peripheral neuropathy - what is it and tips for management
• Legs Out for Lymphoma & Johnny Mannah Walk - event wrap-ups
• Tax Appeal - your help is needed before 30 June
• Clinical trial updates
• General news & Upcoming events

Have you updated your details yet?

We recently asked you to update your details so we are able to keep you up to date with the information that is relevant to you!

So, if you haven't already, please head to the link below - That way we can let you know about educational events near you or information specific to your subtype you may find interesting. This also includes upcoming events and new or updated treatment options available to you.

Once you complete the update, you will automatically be entered in the draw for a gift card.

When completing the form, If you do not attend a specific hospital, please select 'Unknown'. To select a hospital, click in the field and wait for the window to load. Then type in the name of the hospital to search. If the hospital name is unavailable, please type unknown in the box and select the result.

If you experience any difficulties completing the form, please email nurse@lymphoma.org.au or call 1800 953 081 and we can assist you.

Peripheral neuropathy during winter – Rug Up and Stay WARM!

Peripheral neuropathy is a common side-effect of Lymphoma as well as the treatment of Lymphoma. It is caused by the temporary or permanent damage of the nerves of the peripheral nervous system.

The nervous system works a bit like a network of electrical wires. Specialised cells (receptors) and nerves within it pick up and carry signals and messages between different parts of your body. However, if you have peripheral neuropathy, this communication is disrupted.

When the weather gets colder, symptoms of peripheral neuropathy can often become more severe and unbearable for patients.

Common symptoms include:

• Tingling or burning in hands or feet
• Loss of sensation or numbness
• Altered sensation to stimuli. Something feeling hot when it is cold
• Loss of reflexes
• Painful cramps
• Muscle twitching
• Unsteady gait when walking

Tips during colder months

• Bundle Up – make sure you wear winter essentials. A sturdy coat, hat, scarf, gloves and thick socks are helpful when going outside. These items will prevent your body heat from leaving and the cold temperatures from getting to you. Keep your body heated and covered to help blood flow and muscle stiffness. Because your feet and hands are affected first and most intensely, it’s important to layer your socks and keep your hands covered as much as possible.
• Avoid Caffeine – Warm drinks are lovely to have in the cold weather but try and avoid caffeinated beverages. Consuming high amounts of caffeine can cause blood vessels to temporarily narrow, restricting the blood flow to your extremities. This could lead to increased nerve pain.
• Have breaks inside – Take breaks indoors often. This will let the warmth return to your body, blood flow to increase, and muscles to relax.
• Exercise – Taking part in light cardio can help warm up your muscles and promote good circulation, warding off the neuropathy caused by the colder temperatures. Try gentle movement exercises such as yoga, walking, elliptical and light weight training. Even a light swim in a heated pool could help to keep your body limber and ease away muscle tension.
• Speak with your treating team or pain specialist – If you are experiencing severe pain, speak with your treating team or GP for a referral to a specialist pain centre.

Visit our website for more information

• Lymphoma Australia

Legs Out for Lymphoma

Lymphoma Australia was excited to partner with the Cronulla Sharks and Parramatta Eels to present the Johnny Mannah Walk 4 Lymphoma.

Johnny was a very special part of our lymphoma community and a much-loved ambassador and hero for many young patients. Johnny, unfortunately, passed away in 2013.

Each year in his honour, the Johnny Mannah Tribute Cup is played between the two clubs. In the lead-up to this game, we are hosting an ambitious challenge of walking from stadium to stadium.

On Thursday 17 March, a pre-chosen group of ex-players, supporters and sponsors walked 35km from CommBank Stadium to PointsBet Stadium. Walkers included Tim Mannah (Johnny's brother), Paul Gallen, Luke Lewis, Brett Kimmorley, and our very own Lymphoma Care Nurses!

A total of $55,000 was raised to support a specialist lymphoma care nurse for young patients diagnosed with Lymphoma. This nurse will be Lymphoma Australia's first dedicated lymphoma nurse for young people and is currently being advertised.

We would like to thank our amazing partners the Cronulla Sharks and Parramatta Eels, CommBank Stadium and PointsBet Stadium, Classic Sports and all our event sponsors and supporters and the staff in the background who pulled this event together.

Congratulations to everyone who got their Legs Out for Lymphoma in March!

2022 was one of our biggest years yet, with more than 321 teams and individuals signing up to walk, run, cycle, take on a fitness challenge and have fun.  We are overwhelmed by the generosity from you and your supporters shown over the 10 days, with more than $156,282 raised!

We look forward to having you involved again next year. Please enjoy our wrap-up video below.

With only a few days left before tax time - we need your help.

With your support, we can make sure a Lymphoma Care Nurse is only a phone call away for patients - from the time of diagnosis, through treatment, and beyond to life post-cancer. Everyone’s lymphoma and CLL experience is different.

Thanks to our very generous community, we have already made a huge impact this year supporting patients and families; we have comforted newly diagnosed patients who were anxious and worried, sent out resources with tailored subtype information, and listened to their stories. We helped with advice to relieve chemotherapy side effects, and advocated for those who needed access to clinical trials.

Please donate today to help to ensure that everyone, no matter their location, has access to a Lymphoma Care Nurse and is not in this alone.

Clinical Trial Updates

Clinical trials are incredibly important to improving outcomes for patients. They aim to review the effectiveness of different treatment regimens to improve what is currently used as the standard of care treatment.

Unfortunately, there is often a misconception about clinical trials, and that you are a “guinea pig” if you enrol on a clinical trial. However, this is not the case! Clinical trials undergo rigorous safety and ethical approval process prior to the first human trials.

Updates you may find interesting from the recent conference include:

• An update on the glofitamab pivotal study, presented by Dr Dickinson from Melbourne. Glofitamab is a CD20/3 bispecific T-cell engaging antibody. The study of 154 patients showed that relapsed/ refractory DLBCL patients had durable control of their disease, with 39.4% of patients achieving a complete remission, even if they’d had CART cells before. Durable remissions beyond 2 years were shown, which may translate to long term cure. The data has been filed with the European Medicines Agency and soon to the FDA, which increases hope it will be available on the market in the foreseeable future. This drug is being evaluated in the front-line for large B-cell lymphoma in combination with RCHOP or R-CHP-polatuzumab in a trial that is recruiting at 13 sites across Australia.

• A similar drug, epcoritamab, which is also a bispecific antibody, had similar results. Again, ~150 patients with relapsed Large B cell lymphoma were presented. Approximately 39% of patients achieved a CR(including those exposed to prior CART). There was less follow up but taken together these two drugs have consistent and promising data suggesting they will be an important drug class for patients with B-cell lymphoma.

• In a phase I/ II study, pirtobrutinib monotherapy shows promise in CLL/ SLL patients who have previously not been treated with a BTKi. Drugs like pirtobrutinib are increasingly important as 50% of patients on ibrutinib cease the drug due to side effects or progressive disease.

• Brentuximab added to AVD chemotherapy shows improved progression-free survival and overall survival when compared to standard of care ABVD in advanced-stage Hodgkin’s lymphoma. Brentuximab plus AVD also showed less secondary malignancies, more females reporting pregnancies and subsequent live births.

• Ibrutinib plus BR in previously untreated Mantle Cell Lymphoma showed an increased progression-free survival to 80 months vs 52 months in the placebo group. However, the addition of ibrutinib did increase the grade 3/4 adverse events with no overall survival benefit.

General News

NSW Government investing an additional $149.5 million to reduce costs for regional patients

Great news for regional NSW patients, with the announcement this week of the expansion of the Isolated Patients Travel and Accommodation Assistance Scheme (IPTAAS) in the 2022-23 budget.

For the first time, the scheme will be expanded with patients seeking non-commercial clinical trials, which includes many Lymphoma patients seeking trials in centres other then closest facility.

The subsidy for people requiring accommodation will be almost doubled, while the NSW Government will also nearly double the private vehicle subsidy rate from 22 cents to 40 cents per kilometre for patients who must travel more than 100 kilometres for care. To access the scheme head to the IPTAAS website.

Unrestricted Benefits listing for all brands of Rituximab

Rituximab may soon have an unrestricted benefit listing on the PBS following a recommendation from the Pharmaceutical Benefits Advisory Committee.

At its September 2021 meeting the PBAC recommended that following numerous requests the PBS listings for all listed brands of rituximab be changed to Unrestricted Benefit listings. This means for patients with conditions where there are no alternative PBS listed medicines, they will now have unrestricted subsidised access to the treatment.

The PBAC recommendations are subject to approval by the new Federal minister for health which we hope will happen in the next couple of months.

New Announcement for World-class Queensland Cancer Centre

Amazing news this week from the Queensland government, who announced the new world-class stand-alone cancer hospital will be built in Brisbane as part of this year’s record health budget.

The Queensland Cancer Centre, based within the Herston Health Precinct at Brisbane’s Royal Brisbane and Women’s Hospital, will have 150 beds with access to a multidisciplinary team of medical oncologists, radiation oncologists, nurses, and allied health professionals.

Construction is set to begin in 2024 and take about four years, with some services coming online prior to the completion of the project.

We look forward to watching this centre develop and hope it provides Lymphoma patients access to many more specialist treatments and clinical trials.

Upcoming Events

• Parents Connecting Support Group / Fri 8 July – 1:00 pm (AEST) / 12:30 pm (ACST) / 11:00 am (AWST). Are you a parent who also has a diagnosis of Lymphoma? Want to Connect with other parents and know what supports are out there for yourself and your kids? Come along and connect! Parenting can be hard at the best of times, let alone while undergoing treatment.

• Carers Support Group / Tues 19 July – 10:00 am (AEST) / 9:30 am (ACST) / 8:00 am (AWST). Are you caring for someone with Lymphoma and would like some more support? Join us and discuss with others what support is available and how others are coping.

• Young Adults under 35's Support Group / Fri 05 August – 3:00 pm (AEST) / 2:30 pm (ACST) / 1:00 pm (AWST). Head to our events calendar to register.

Pre-register for our Education & September Awareness Events

• Car-T Experience - 25th August (online) - 4pm(AEST) / 2pm(AWST)

• International CLL day / Thurs 01 September (online) – Details TBC

• Patient Symposium / Fri 30 September (Hybrid) – Details TBC