Happy & Healthy 2020

Welcome to our first eNewsletter and Lymphoma Update for 2020.

Before we share with you the latest lymphoma updates and information, we would like to acknowledge the Australian communities that have been affected by the devastating fires. We send our best to all those who have lost so much and all who have been impacted, as well as acknowledge the devastating loss of our wildlife. We also want to thank the firefighters, volunteers, police, defence force and emergency services for their incredible efforts. There has been some amazing acts of generosity from Australians rallying together to support those in need, and this is incredible. If you need assistance with your treatment access, please let us know.

In this month's newsletter we are sharing the 2020 Global Patient Survey link for your input. The Lymphoma Coalition survey is collecting data from across the globe to help organisations such as ours to plan support services and advocacy efforts, so that patients are receiving the best available care and support, when needed. If you can, please take the time to complete this survey.

The next PBAC meeting in March will be considering three new treatments for two lymphoma subtypes. As mentioned in previous newsletters it is important that we take the opportunity to have our voice heard in this important decision making process. More information can be found in this newsletter.

In December, Lymphoma Australia attended the American Society of Hematology Meeting and now have more than 40 interviews with leading lymphoma experts available to watch. A very big thank you to AbbVie for your support and giving us the opportunity to bring this information to patients across the world.

Legs Out for Lymphoma awareness walks will be on again this year! Save the dates below to join us in raising awareness, putting lymphoma in the limelight and "legs get together"!

We are busy planning a great line up of patient and carer education days and nurse special interest group sessions for 2020. If you could help us by letting us know what topics or subtypes you want to learn more about, or if there is a speaker or lead expert you want to recommend please fill out this quick form.

Wishing you a very healthy 2020.

Sharon Winton, CEO

Your input makes a difference! Please participate in the 2020 Global Patient Survey on Lymphomas & CLL

Every two years, the Lymphoma Coalition – a non-profit network of patient organisations – conducts a global survey for patients with lymphoma and CLL their family, friends & caregivers. The 2020 survey is your opportunity to share your lymphoma experience to help patient organisations like ours, plan support services and advocacy efforts, both globally and locally.

Please participate by filling out the survey online at www.lymphomacoalition.org/gps2020 by 11 March 2020.

The survey will take approximately 20-35 minutes to complete for a patient and 10 minutes for a caregiver.

The survey is anonymous and all information is confidential. Participants can withdraw from participating at any point during the survey, but only up to the point of submission.

You can find out more about past surveys at www.lymphomacoaltion.org.

For examples on how the data from the LC 2018 Global Patient Survey was used, you can view:

Thank you for making the time to participate.

Have your say!

In Australia we have a health system/regulatory process that gives all of us an opportunity to make a submission to the appropriate committees when new medicines or medical devices are being considered for Pharmaceutical Benefits Scheme (PBS) funding approval.

Over the last three years we have seen more than a dozen new medicines for lymphoma have been approved for subsidisation by the PBS. This means affordable access to all Australians that are eligible for these treatments.
It is important that we continue to add our submission and voice to this process to ensure
patients do not miss out on the best therapies.

The next Pharmaceutical Benefits Advisory Committee (PBAC) meeting in March will be considering the following treatments for two lymphoma subtypes - Primary Mediastinal B-Cell Lymphoma (PMBCL) and Chronic Lymphocytic Leukaemia (CLL).

Chronic Lymphocytic Leukaemia (CLL)

ACALABRUTINIB – For relapsed/refractory CLL patients
VENETOCLAX – In combination with Obinutuzumab for the first-line treatment of patients with CLL who have coexisting conditions and are unsuitable for fludarabine based chemotherapy

Primary Mediastinal B-Cell Lymphoma (PMBCL)

PEMBROLIZUMAB - For the treatment of patients with relapsed or refractory PMBCL who meet certain conditions.

Please consider making a submission to PBAC before the 7th of February if any of these treatments would be an option for you or if you have had any of these treatments and can share your experience with the PBAC committee to help them with this important decision.

Click here to make a PBAC submission. Closes 7th February

ASH Meeting 2019 - Video interviews

Thanks to an unrestricted educational grant from AbbVie, Lymphoma Australia have been fortunate to interview some of the world’s leading Haematologists and experts who were in attendance at American Society of Hematology (ASH) 2019 Meeting. Our leading clinicians discussed a range of topics on lymphoma subtypes, treatments and management and updates on trials.

We are pleased to provide the below interviews - the first of more than 40! For any questions please email nurse@lymphoma.org.au

For more links, visit www.lymphoma.org.au/page/1268/ash-meeting

Follicular Lymphoma
Dr Loretta Nastoupil – Follicular lymphoma study – Part 1.

Mantle Cell Lymphoma
Prof Simon Rule - Mantle Cell Lymphoma Update.

Waldenstrom’s Macroglobulinaemia
Prof Mathias Rummel - Waldenstrom’s Macroglobulinaemia & the StiL trial.

Resources & Fact Sheets

A wide range of resources and fact sheets are available to download and print from our website.
New topics this month include:

Relapsed or Refractory lymphoma
Fear of cancer recurrence and scanxiety
Complimentary and alternative therapies and lymphoma

These free resources are designed to better inform patients on a wide range of topics including detailed information about lymphoma subtypes, clinical trials, side effects and survivorship.

New Year Goals

The start of a new year (and new decade!) means the start of new goals. Keeping active during lymphoma treatment can make a big difference to physical strength and mental wellbeing. A walk in the outdoors is a great start to get moving.

Exercise has a range of benefits and may help to reduce side effects of some treatments for lymphoma. It can:

Reduce stress and improve your mood
Stimulate your appetite
Reduce side effects like nausea and constipation
Lower fatigue and improve your energy levels
Help you sleep
Increase muscle and bone strength which improves your mobility and balance.

Always talk to your physician or specialist before commencing and listen to your body.

More information is available in the Exercise and Lymphoma Fact Sheet or phone our Nurse Support Line on 1800 953 081.

NEWSLETTERS & EDUCATION DAYS - HAVE YOUR SAY ON TOPICS, SUBTYPES AND SPEAKERS - SEND US YOUR IDEAS

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