• Steps For Lymphoma
• The Lymphoma Coalition Global Patient Survey (GPS)
• Late Onset Neutropenia (LON)
• The benefits of connecting with others impacted by lymphoma
• Upcoming events

Lymphoma Australia Staff July 2023

Patient News March

We've kicked off the year with great momentum, marked by a series of engaging events aimed at fostering support, awareness, and education. The much-anticipated "Steps for Lymphoma" campaign has officially launched! This initiative is not only a platform to raise awareness about lymphoma but also an opportunity to promote physical activity, well-being and connect with others within our community. 

In addition to our upcoming campaign, we have a lineup of both in-person and online patient events scheduled throughout the first part of the year. These events are great opportunities for connection, support, and learning. 

In this month's edition of Patient News, you will find a feature article on Late Onset Neutropenia. These feature articles will help you and your loves ones understand important aspect of lymphoma management.

The Lymphoma Coalition's Global Patient Survey on Lymphomas & CLL if now live. We are asking our community to contribute and provide your valuable insights and perspectives, so the Australian experience is represented globally. 

So, take a moment to explore these resources, participate and get involved in upcoming events. 

Steps For Lymphoma

There is still time to step up!

From March 1st, our first official virtual Steps for Lymphoma is going  live. But don't worry, there is still time to register!

Our new virtual event brings everyone together to combine our steps, taking us all on a simulated journey around Australia this March. It will take 30 million steps to complete a full lap of our incredible continent, so we need you to take up the challenge and be a part of something huge!

Become one of many legends dedicated to supporting Lymphoma patients and their families by spreading awareness and raising vital funds one step at a time.

It's easy and free! Create your fundraising page to share with family and friends to demonstrate your commitment to this important cause. Link your compatible fitness device to keep track of your steps once the challenge commences. So what are you waiting for? The sooner you join, the sooner you can begin reaching your goals!

Whether you want to raise awareness for the number one cancer in young people, or help make a direct difference in the lives of those impacted by lymphoma, or are seeking to challenge yourself, we hope you are inspired to join Steps for Lymphoma this March. Take the first step today by signing up now!

The Lymphoma Coalition needs YOU.

Your voice matters! The Lymphoma Coalition Global Patient Survey (GPS) is a way to join a worldwide movement, a joint effort to enhance the quality of life for Lymphoma patients across the globe.

Why do we do this research?
Lymphoma Australia is an active member of the Lymphoma Coalition and the participation of Australian patients in global initiatives like the Global Patient Survey, means that Australian experience is represented globally. In addition, the results of past surveys have been used to inform published research papers, conference presentations and posters, patient resources, education materials and lymphoma awareness campaigns. The results of the GPS are shared in a Global Report, as well as regional and country reports.

Want to complete the survey?
Click on the link below and fill out the survey now! If you are having issues or have questions regarding this survey, please contact our Nurse support line at 1800 953 081

Late Onset Neutropenia (LON)

Neutropenia is a medical word that means you have low levels of neutrophils in your blood. When you are neutropenic, you are more at risk of infection.

Neutrophils are white blood cells and part of our immune system. They are the first to recognise and fight a pathogen, which can be a damaged cell, a germ, or something we’re allergic to. 

Our body makes about 100 billion neutrophils every day, but they live for less than a day.

Late onset neutropenia (LON) can happen months after you’ve finished treatment with immune checkpoint inhibitors (such as pembrolizumab or nivolumab) or a monoclonal antibody targeting the CD20+ receptor on your lymphoma (such as rituximab and obinutuzumab). In rare cases, it can even happen more than a year after finishing treatment.

LON can be a temporary or long-term condition. The goal is to help prevent you getting an infection, or to identify and treat infections early if you get one. 

When to go to emergency

If you are neutropenic, or think you may be and get any of the below symptoms, go to your nearest emergency department and let them know you may be neutropenic.

• Temperature of 38° (degrees Celsius) or more, or less than 35.5°.

• Chills or rigors (uncontrollable shaking) even if temperature is normal.

• Get very unwell very quickly.

• You have a sore anywhere on your body that is painful. **Remember, you may not show normal signs of infection like redness or pus if you have no neutrophils

• Have difficulty breathing or have thick snot that is green or yellow in colour.

• Coughing.

• Have very smelly wee or poo or it is painful when going to the toilet.

For more information on how to keep yourself safe when you’re neutropenic, and when to see a doctor, please see our webpage below.

Benefits of Connecting with others with lymphoma

A Lymphoma or CLL diagnosis can be overwhelming and difficult to understand. Friends and family are often very supportive. However, connecting with people who are also going through a similar diagnosis can be extremely helpful and emotionally supportive.

Lymphoma Australia's group chat's can help people:

- Feel accepted

- Compare experiences

- Find new coping strategies

- Increase knowledge

- Improve social skills

- Self-manage their condition 

- Improved quality of life 

No one should face a diagnosis of lymphoma alone.  Group chats are held regularly throughout the year and are moderated by our Lymphoma Care Nurses. We have groups that are held online via zoom; and in person.

 Upcoming Lymphoma Australia events

💚 Watch and wait online group chat -- 18th March 

💚 Tasmanian In person   -- 19th March         

💚 Under 40's online group chat -- 4th April

💚CLL patient online group chat -- 24th April

💚 Melbourne in person education (Open for early registration)-- Save the date 27th July

For more information about these events, have a look at our events calendar. If you are having trouble registering for an event or if you are unsure if your registration was successful, please contact our nursing team 1800953081.