• Lymphoma Awareness Month - get involved this September!
• Health literacy - improving resources and information for you
• Rural, regional or remote patients - survey closing soon
• CLL Survey
• Nursing updates - and referral programs for you
• Medicines updates - PBS recommendations
• Focus Friday's - a new series
• Upcoming events and support groups 

September is Lymphoma Awareness Month

Help put lymphoma in the limelight this September!

Show your support during September by liming it up! We want as many people as possible to be wearing lime green, sharing facts about lymphoma, getting workplaces and schools involved and raising awareness.

Lymphoma is Australia's number one blood cancer. Lymphoma Australia is the only charity dedicated to lymphoma, supporting patients, carers and health professionals.

Shining a limelight on lymphoma leads to earlier diagnosis, better access to treatments, and support for a cure.

Around the world, more than 735,000 people are diagnosed with lymphoma, including CLL, every year.

15 September: World Lymphoma Awareness Day

World Lymphoma Awareness Day (WLAD) is held on 15 September every year and is a day dedicated to raising awareness of lymphoma. We also recognise World CLL Day on 1st September.

How to get involved

We’d love your support this September Awareness Month...

Health literacy

Health literacy - Subtype factsheets and brochures

We believe that when you are equipped with the right information, you can ask the right questions, make the best decisions, and become an active partner in your healthcare.

While we have a range of useful resources available, it is important for us to know that these resources are useful and meaningful to you. We want to know that they help you understand your subtype of lymphoma or CLL, and help you feel more confident. As such, we recently put out a call for patient resource reviewers. We were thrilled to have 11 people living with, or supporting someone with lymphoma/CLL volunteer to review our revamped factsheets. Over the next few weeks, we expect to make some minor improvements based on their feedback. 

Lymphoma Australia would like to give a very big thank you to our patient resource review team for your time and effort to help empower lymphoma/CLL patients and their loved ones across the country. 

You will notice many of our factsheets are more like brochures now. This is to make sure that you have all the information you need to understand your subtype, and make good choices regarding your health care options. We also want to make sure that no matter where you are in Australia, you have access to detailed information about your subtype, even if you do not have access to the internet. 

To find our factsheets/brochures click here .

Health literacy - Website

Health literacy is not just about making information easy to understand. It is also about making information easy to find. With this in mind we are making some changes to our website. We are working in the background to make it easier for you to find and share what you are looking for, and have already made some changes based on feedback from our patient resource review team.

Rural, Regional or Remote patients

Lymphoma Australia is trying to understand the patient journey from diagnosis, treatment and after for patients in Rural, Regional and Remote areas.

By understanding the specific needs of patients in these areas we can tailor resources and education to improve patient experiences and outcomes.

If you are a patient who lives in a non-metro area, please head to the link below to complete the 5-minute survey.

We are seeking the opinions of people living with Chronic Lymphocytic Leukaemia (CLL).

You could help researchers investigate what people with CLL value when it comes to their care and management.

Click the button below to check if you are eligible to participate in the 30-40 minute online survey. In appreciation for your time and contribution to the research, you will receive a payment of $75 for completion of the full survey. You will have the option of receiving a report of the findings. Participation is voluntary and you are free to withdraw at any time. This survey is conducted by Community and Patient Preference Research (CaPPRe).

Nursing Updates

Our nurses have also been out at conferences interacting with treating specialist and Specialist nurses.

Hopefully, you will see our new patient waiting room posters hanging soon after we have been handing them out. We also made connections with other important organisations some of which may be of interest to our patients and their carers.

Look Good Feel Better is a free, national community service program, run by the Cancer Patients Foundation. The program has been designed to help cancer patients manage the appearance-related side effects caused by any type of treatment for any type of cancer.

CarerHelp hopes to empower carers to cope with the hard times as well as they can, and to make space for good times as well. When carers feel ready for their role, everybody benefits.

Canteen is an Australian not-for-profit that provides free and tailored support to young people aged 12-25 who are impacted by cancer. Whether they are dealing with their own diagnosis, a close family member’s cancer or the death of a loved one.

Focus Fridays

Don't miss our new series of "Focus Fridays" posts on Facebook. Follow our page @LymphomaAustralia to get the latest news.

We have recently featured:

• Sex, intimacy & cancer. When you were diagnosed or having treatment, did your doctors or nurses start the discussions about these topics? Sexuality is an important part of who you are as a person and studies show that good sexual health and intimacy is positively related to an improved quality of life. So why, is it that so many health professionals don’t talk about it the same way they would when managing fatigue or nutrition?

• Fatigue. Cancer related fatigue is one of the most experienced symptoms when you have lymphoma. It is also one of the toughest side effects to manage as there is no magic pill or “quick fix” that resolves that overwhelming, whole body, sheer exhaustion feeling.

Email us with any topic suggestions: nurse@lymphoma.org.au 

Medicines update

PBAC has recommended zanubrutinib to be listed on the PBS for Waldenstrom macroglobulinemia (WM).

The PBAC recommended the listing of zanubrutinib for the treatment of WM in treatment-naïve patients who are unsuitable for chemo‑immunotherapy and in relapsed/refractory patients who have received at least one prior chemo-immunotherapy
Waldenstrom’s lymphoma is a rare form of B-cell lymphoma, considered to be an indolent (slow growing) lymphoma and it is primarily found in the bone marrow although lymph nodes can also be affected.

Zanubrutinib (Brukinsa^TM) is a highly specific and novel BTK (Bruton tyrosine kinase) inhibitor; BTK is a protein that certain cancer cells need to survive.

"This listing will make an incredible difference to people living with WM, as there is a high and urgent unmet need for effective treatments available on the PBS.

"This is another significant milestone for patients, having zanubrutinib recently listed on the PBS for refractory/relapsed MCL patients," said Sharon Winton, CEO, Lymphoma Australia.

We look forward to sharing the availability date in our next newsletter.

Upcoming Events

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

• Watch & Wait Support Group and Chat- Online – Tues 16 August - 2:00pm – 3:30pm (AEST) / 1:30pm (ACST) / 12.00pm (AWST). Register here

• Car-T Experience Educational Webinar – Thurs 25 August - 4:00pm – 5:30pm (AEST) / 3:30pm (ACST) / 2:00pm (AWST). Register here

Pre-register for our Education & September Awareness Events

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

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