• Put Lymphoma in the LIMELIGHT

• We want to hear about your experience

• Recent CAR-T Advocacy at Parliament House

• Sydney In-Person Patient Education - Wellness and Clinical Trials - October

• Navigating Hair Loss & Look Good Feel Better

• Spotlight on a clinical trial

• PBAC Medication approvals

• Missed our Session - Talking to Children and Young People about Lymphoma

• Support groups upcoming dates

September is World Lymphoma Awareness month

As September draws to a close, we're reminded that Lymphoma Awareness Month is coming to an end, but there's still time to put Lymphoma in the LIMELIGHT!

Raising awareness for lymphoma is vital. Not only because it fosters understanding of this cancer but also encourages early detection and advances in treatment options. By sharing your stories, educating our communities, and advocating for treatment access, we can continue to put lymphoma in the spotlight.

How can you help?

1. Go #Lime4Lymphoma in you workplace, gym, community group, church or even just a small group of friends
2. Add frame to your social media profiles - Add a Twibbon to your X or Facebook profile image - https://twibbon.com/Support/lymphoma-awareness-month-3 to follow instructions
3. Post the reason why you are raising awareness for Lymphoma and don't forget to tag @LymphomaAustralia

Your Experience Matters!

We invite each and every one of you to take a few moments to share your valuable insights through our patient survey. Your experiences are a crucial piece of the puzzle, helping us better understand your needs and challenges. By participating, you play a pivotal role in shaping the support and resources we provide, enabling us to identify gaps and tailor our efforts to serve you even more effectively. Thank you for helping us enhance the support and care we offer.

Lymphoma Australia's Advocacy in Parliament House, Canberra

We'd like to extend our heartfelt thanks everyone who joined Lymphoma Australia on the 6th of September at our special event hosted by the Parliamentary Friends of Cancer Cure and Care. This gathering was tailored especially for you, our valued patients and caregivers. We brought together an extraordinary panel consisting of fellow patients, dedicated caregivers, and experienced clinicians, including Tahli Batkilin, Dawn Firth, Dr. Peng Lee, Dr. Gareth Gregory, Associate Prof Michael Dickinson, and our CEO Sharon Winton.

We want to express our deepest gratitude to Paul and Lisa Whitman for sharing their personal journey, shedding light on the barriers, frustrations, and inequalities they've encountered while striving to save Paul's life. Your stories are a powerful testament to the challenges our community faces daily.

During this event, we highlighted the potential life-saving impact of new treatments, acknowledging their ability to transform outcomes for lymphoma patients. However, we also recognised the urgent need for collaboration and innovative solutions to establish a healthcare system that ensures universal access, based on principles of equity, evidence, safety, and cost-effectiveness.

The reality is that Australian lives are at risk right now. The example of CAR-T therapy serves as a stark reminder of the changes and processes we need to implement to accommodate the ever-growing pipeline of novel therapies for various diseases. Following this event, our Minister for Health, Hon Mark Butler, announced in question time the following week that the Commonwealth has agreed to provide CAR-T for eligible mantle cell patients. While this is a significant step forward, there are still hurdles to overcome under the NHRA agreement before patients can access this treatment.

Rest assured, Lymphoma Australia is unwavering in our commitment to tirelessly work with all stakeholders to secure CAR-T access for mantle cell lymphoma patients as a matter of utmost urgency. Our mission is to ensure an equitable, national healthcare system that prioritises the well-being and treatment of all lymphoma patients across Australia

Sydney In-Person Education

Wellness & Clinical Trials

We are excited to be holding our first in-person education session since the challenging times of COVID-19. Your health and safety have been our top priority, and now, as we cautiously step back into face-to-face gatherings we couldn't be more excited to reconnect with all of you.

Join us on 24th October at the Shangri La Hotel, Sydney for this session where we will delve into the topic of - Wellbeing Through Treatment and Beyond - with Dr Toni Lindsay.  We will then explore the latest advancements in lymphoma care in 2023, focusing on cutting-edge treatments through clinical trials - with Professor Judith Trotman.  Don't miss this opportunity to gain valuable insights, share experiences, and find hope in the company of your fellow lymphoma community.

Please follow the link below to register for catering purposes.

Navigating Hair Loss: Practical Tips for Your Journey

In the midst of a lymphoma treatment journey, various challenges arise, including some that impact our appearance. Hair loss is a common side effect, but understanding how to manage it can significantly affect your overall experience. In this article, we're here to provide you with practical insights and strategies to help you confidently navigate through this phase.

Caring for Your Scalp and Hair:

Maintaining a healthy scalp is key. Opt for gentle, fragrance-free shampoos and avoid harsh hair treatments. After washing, gently pat your scalp dry and consider using a soft-bristle brush to stimulate blood circulation.  There are also specific Scalp Relief Serums that may help relieve the itchiness from  Dermal Therapy.

Haircut Choices:

Embracing shorter hairstyles or even going for a buzz cut can help minimise the visible effects of hair loss. Shorter hair can give an appearance of thickness and fullness. Some individuals find empowerment in shaving their heads completely, owning their new look with confidence.

Covering Your Head:

Hats, caps, scarves, and head wraps are practical and stylish options to protect your scalp from the sun and express your personal style. Opt for breathable fabrics to ensure comfort, and explore sleep-specific head coverings to keep you cozy at night.

Wig Wisdom:

Wigs are a versatile choice for managing hair loss. Synthetic wigs are easy to maintain and come in a variety of styles. Natural hair wigs offer a more authentic look but require more care. Consult with a wig specialist to find the right fit and style for you - ask your hospital nurses who they recommend.

If you would like to use your own hair for - there is an option to have it made into a headband ready for you to use with an extra head covering.  For more details see - Real Fringe Hair Bands

Preparing Emotionally:

Understanding that hair loss is a temporary part of the journey can help mentally prepare you for the change. Connect with others through support groups or online communities to share experiences and advice. Keep your focus on the bigger picture of your treatment and recovery.

Look Good Feel Better Program

We want to highlight a valuable resource: the Look Good Feel Better program. This initiative, offered by Look Good Feel Better Australia, provides practical workshops to help you manage the appearance-related challenges that may arise during treatment, including hair loss. Importantly, the program offers specialised sessions for men as well, ensuring tailored support for everyone. 

The Look Good Feel Better program brings together skilled beauty professionals who understand the unique needs of individuals undergoing cancer treatment, regardless of gender. These workshops offer hands-on guidance in skincare, makeup application, and headwear styling. By learning expert techniques, you can enhance your self-esteem and regain a sense of control over your appearance. This program not only equips you with practical tools but also creates a supportive environment where you can connect with others who are navigating similar experiences.

To learn more and find workshops near you, we encourage you to visit the Look Good Feel Better Australia website at https://lgfb.org.au/. The program is a testament to the power of support and shared experiences, and we hope you take advantage of this wonderful opportunity to boost your confidence and embrace your journey with resilience.

Where can I go for more information?

Lymphoma Australia - Hair Loss

Look good Feel Better Australia

Call our Nurse Line on 1800 953 081

PBAC Updates

Shingrex - Shingles Vaccine Available on PBS from November

Some fantastic news that can significantly impact the health and well-being of our community from 1st Nov, 2023. The National Immunisation Program (NIP) has taken a significant step by adding the Shingrix vaccine to its list of standard vaccines available under the Pharmaceutical Benefits Scheme (PBS). This means that the Shingrix vaccine, an alternative to the herpes zoster vaccine Zostavax, is now accessible to a broader range of patients at a lower cost.

This development is especially important for immunocompromised individuals (including people in the Lymphoma community) at high risk of herpes, Aboriginal and Torres Strait Islander people aged 50 and over, and non-Indigenous individuals aged 70 and over. By expanding access to the Shingrix vaccine, the NIP is reinforcing its commitment to protecting our community against shingles, a condition that can cause significant discomfort and complications. We encourage everyone in the eligible cohorts to consult their healthcare providers about getting vaccinated and taking advantage of this new opportunity to safeguard their health.

Zanubrutinib (BRUKINSA) NOW available on the PBS for previously untreated CLL/SLL

The treatment landscape for CLL/SLL has changed significantly over the last 12 months. Now we welcome the listing of zanubrutinib (BRUKINSA) to the PBS for use in upfront CLL/SLL! This means that patients can access effective, publicly funded treatment for their CLL/ SLL that doesn't include having chemotherapy in the first instance. 

Zanubrutinib is a targeted anti-cancer medicine that works differently to chemotherapy. It works by targeting a protein that helps cancer cells grow and multiple, known as Bruton's tyrosine kinase (BTK).

Zanubrutinib is already funded and approved for use in Mantle Cell Lymphoma and Waldenstroms Macroglobulinemia. 

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. 

**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 (BLOCK PCNSL)

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 NHL35 (PACIFIC)

Primary Mediastinal B-cell Lymphoma is a rare and fast-growing subtype of B-cell Non-Hodgkin Lymphoma (NHL) that primarily affects young adults. This type of lymphoma develops when the body makes abnormal B-cells that develop in a part of the lymphatic system called the thymus gland. These abnormal B-cells grow and build up in the space behind the chest ribcage and between the lungs, called the mediastinum.

This trial includes a new treatment combination for Primary Mediastinal B-Cell Lymphoma that includes a new immunotherapy called Pembrolizumab. This treatment will be given to patients in combination with the standard chemotherapy and immunotherapy treatment prescribed by their doctor. All patients will receive this new treatment combination, with this trial aiming to see whether we can improve outcomes for patients with this type of lymphoma.

To be eligible for this trial, you must be an adult with Primary Mediastinal B-cell lymphoma that has not yet been treated. This trial is currently open to patients in Victoria, Western Australia and NSW, with hospital sites opening in South Australia, Queensland and the ACT 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 most recent webinars?

Hodgkin Lymphoma with Shane Gangatharan

Working and Lymphoma with Selsus

Talking to Children and Young people about Lymphoma

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

• Over 60's Online Support Group- Tuesday October 3rd
• Sydney Young Persons <40yrs In-Person- Wednesday October 11th
• Patients in Treatment Online Support Group- Thursday October 12th
• Melbourne In-person Support Group- Friday October 13th
• Newly Diagnosed NIGHT Online Support Group- Wednesday October 18th
• Under 40's Online Support Group- Tuesday October 31st
• South Australian Online Support Group- Friday November 10th
• Patients in Remission Online Support Group- Thursday November 16th
• Watch & Wait Online Support Group- Wednesday November 22nd
• CLL Online NIGHT Support Group - Thursday November 30th

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