Putting lymphoma in the limelight
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Every 2 hours another Australian is diagnosed with Lymphoma or CLL. Lymphoma Australia's goal is to make sure no one faces lymphoma alone.
This year, and beyond, you can help to raise awareness of lymphoma and raise vital funds so that we can provide information and support when it is needed most.
Our lymphoma care nurses provide emotional, practical and treatment support, as well as campaigning for better cancer care. And because lymphoma affects more than just those facing it, we are there for friends and family too.
I hope you can join us at our events, information sessions and online during 2018. We thank you for you continued support.
Sharon Millman, CEO
Lymphoma Australia is supporting World Cancer Day on 4 February. You can get involved by sharing the campaign on social media, signing up to pledge support or spread the word and raise awareness by talking to others. World Cancer Day unites the world’s population in the fight against cancer. We Can, I Can create action.
Get involved here: www.worldcancerday.org
Lymphoma Australia
Videos and presentations
Did you know that we have a dedicated Lymphoma Australia YouTube channel? Watch presentations from local and international lymphoma experts, learn about updates in research or trials and gain detailed information on subtypes and treatments. Filmed presentations and interviews include Living with Lymphoma, Lymphoma Updates, Survivorship and Q&A sessions.
We may have been rained out back in October, but it didn't stop our spirit! The Brisbane Legs Out for Lymphoma walk has been rescheduled for SUNDAY 25 MARCH at 10.00am.
We would love to see you there! Get your legs out and join us to walk for awareness and walk for lymphoma nurses. Funds raised support our Lymphoma Australia specialist lymphoma nurses. It's free to take part so get your team together ASAP and join us. Sign up below!
- Event commences - 9.00am
- Walk start - 10.00am (5km walk)
- Music & food until 12.00pm
Print the POSTER to share on noticeboards and at workplaces and the PARK MAP to help you find us.
Targeted Therapies
As researchers have learned more about the changes in cells that cause lymphoma, they have been able to develop new medicines that specifically target these changes. These medicines are often referred to as targeted therapies and immunotherapies. As they work differently to chemotherapy they may have different side effects.
Targeted therapies are medicines that block the growth and spread of lymphoma by interfering with specific molecules that are involved in the growth, progression and spread of lymphoma.
The development of targeted therapies requires the identification of good cell molecular targets that play a role in lymphoma cell growth and survival. One way to look at this is to identify good molecular targets by comparing the amounts of individual proteins in lymphoma cells with those in normal cells. Proteins that are present in lymphoma cells but not in normal cells are potential targets, especially if they are known to be involved in lymphoma cell growth or survival.
Another approach to identify potential target cells is to determine whether the lymphoma cells produce mutated proteins these mutated proteins drive the progression of the lymphoma. Once a target protein has been identified the next step is to develop a therapy that interferes with the cells ability to grow and survive. The targeted therapy could then work on the lymphoma cells and stop the lymphoma cells from multiplying or even surviving.
For a list of new medicines please refer to the “What is New for Lymphoma and CLL – Know Your Treatments” You can access this booklet by ordering them online at Lymphoma Australia www.lymphoma.org.au or email enquiries@lymphoma.org.au and we will send out the information to you.
Connect online with our closed Facebook group
Do you want to connect with other people who have lymphoma? Lymphoma Australia has a dedicated closed group on Facebook that patients and their families can join by searching ‘Lymphoma Down Under’ on Facebook.
Join us for a talk with special guest Dr Eliza Hawkes the Lymphoma Lead at Austin Hospital to talk Clinical Trials at the end of February. Details will be posted on the site next week.
"I am in a few Lymphoma groups but none quite like this one. Maybe it's the fact that we are all Aussie and get each other a bit better but this group has gotten me through some hard times"
Some great news for access to medicines for Australian lymphoma patients and you helped make this HAPPEN
Pralatrexate for Australian patients with peripheral T-cell lymphoma has been approved by the TGA and will soon be available as a PBS medicine.
At a recent PBAC meeting in 2017 the drug Pralatrexate was given a positive recommendation by PBAC for PBS approval. This is great news for Australian patients with the rare subtype, peripheral T-cell lymphoma who have progressed after at least one prior therapy.
Pralatrexate is currently awaiting approval to be listed on the PBS however access to Pralatrexate can happen through a medicines access program offered by the pharmaceutical company for eligible patients. Please check with your doctor If you think Pralatrexate could be an option for your Peripheral T cell Lymphoma.
Pembrolizumab (Keytruda) has been given a positive recommendation for Australian patients with relapsed/refractory Classical Hodgkin Lymphoma
In September, 2017 PBAC also made a positive recommendation to the Minister for Health for the immunotherapy drug Pembrolizumab to be PBS listed for the treatment of relapsed/ refractory Classical Hodgkin Lymphoma. Whilst clinical trials helped some patients gain access to this treatment before this decision was made there was also many patients and their families who had to fundraise/pay for access to this treatment.
Hopefully there will be an announcement soon that Pembrolizumab is now PBS listed for refractory/relapsed Classical Hodgkin Lymphoma.
Ibrutinib is giving CLL and SLL patients in Australia renewed hope after being listed on the PBS
After a positive recommendation by PBAC and the consequent approval by the health minister, Ibrutinib also known as Imbruvica, became available on the PBS on the 1st of December for Australians living with Chronic Lymphocytic Leukaemia (CLL) or Small Lymphocytic Lymphoma (SLL) in whom the disease has progressed despite treatment with standard therapies.
Another great benefit of IMBRUVICA® is that it is an oral therapy which means patients won’t need to have intense treatment in a hospital.
The next PBAC meeting is coming up - have your say!
You can help in the process of approving medicines for lymphoma at the Pharmaceutical Benefits Scheme (PBS) PBAC Meeting
For people to be able to gain access to medicines in Australia the medicine needs to go through a very specific process of approval from the Government. The Pharmaceutical Benefits Scheme (PBS) is the main mechanism via which the Government subsidises the cost of medicines used by the community.
Anyone can have a say about a medicine that is being considered for approval in Australia by the PBAC committee. However, if you are a patient, carer or health care professional and feel there has been a real benefit gained by a specific treatment please strongly consider making a submission to the PBAC committee.
The lymphoma/CLL medicines that are going to be put forward for the March 2018 PBAC meeting for consideration are:
OBINUTUZUMAB (Gazyva®)
For - CD20 positive follicular lymphoma.
Requested Listing - untreated patients with Stage II bulky or Stage III/IV CD20 positive follicular lymphoma or rituximab-refractory follicular lymphoma
IBRUTINIB (Imbruvica®)
For - Chronic lymphocytic leukaemia (CLL)/small lymphocytic lymphoma (SLL) and relapsed or refractory mantle cell lymphoma (MCL)
Requested Listing - First line treatment of patients with CLL or SLL who meet certain criteria and relapsed or refractory MCL.
Comments on submissions are accepted until the 7 February, 2018 via this link:
http://www.health.gov.au/internet/main/publishing.nsf/Content/PBAC_online_submission_form
Australian Patients can participate in a Global Survey for Lymphoma & CLL Patients
We need to hear from you!
Have you or a loved one been diagnosed with lymphoma? Whether the diagnosis was recent or many years ago, please complete this short survey developed by the Lymphoma Coalition. The survey data is used locally and globally to:
- Improve support services
- Advocate for change
- Provide patient-significant facts and statistics
Patients, family members and/or their care providers can fill out the survey. Please participate by filling out the survey online at: www.lymphomacoalition.org/global-information/global-patient-survey/2018/survey
The Lymphoma Coalition is a global network of non-profit lymphoma patient organisations, including Lymphoma Australia, with a vision to free the world of lymphoma. Every two years, the Lymphoma Coalition conducts a global survey of lymphoma patients. This year's survey seeks to gather information regarding barriers to treatment and quality of life that can then be used for comparative analysis based on type of lymphoma.
