News
The importance of our medical advisors
In January Lymphoma Action held the first face-to-face meeting with their Medical Advisory Panel (MAP) since the pandemic.
Our work is supported and informed by MAP and a wider group of expert clinicians and scientists including haematologists, oncologists and clinical nurse specialists, all of whom specialise in the field of lymphoma and related disciplines. This group assist in the development of our publications, review our patient information, advise on our services, contribute to our conferences and study days and even share their thoughts on our podcasts.
We are enormously indebted for the time and support given by this dedicated group of people.
Share your experience
As someone with lymphoma, share your experience of the treatment and care you have received. The Lymphoma Coalition Survey wants to use patient voices to help drive planning, action and support around lymphoma.
Involvement in Health Technology Assessments
Lymphoma Action is delighted to be involved in Health Technology Assessments. During 2023 we inputted into 14 Health Technology Assessments for both NICE (The National Institute for Health and Care Excellence) and SMC (Scottish Medicines Consortium). It is crucial that we provide a patient organisation perspective on the added benefit and value of potential upcoming new medicines available to lymphoma patients.
Recently we were able to report that NICE had recommended zanubrutinib as an option for treating chronic lymphocytic leukaemia (CLL) in adults. Zanubritinib is a type of targeted treatment called a BTK inhibitor. These medicines are specially designed to attack particular proteins on lymphoma cells.
On 31 January NICE approved loncastuximab for relapsed or refractory DLBCL patients in third line treatment. It is a type of targeted treatment known as an antibody-drug conjugate. Antibody–drug conjugates are monoclonal antibodies joined to a chemotherapy drug. The antibody is designed to stick to a protein on lymphoma cells and carry the chemotherapy drug directly to them.
Updated books now available
We have recently updated two of our books, which are now available to order.
In Living with and beyond lymphoma you’ll find tips to help you manage the physical, practical and emotional aspects of living with and beyond lymphoma. The book covers day-to-day living, coping with symptoms, treatment and side effects, medical matters after treatment, relationships, family and friends and emotional wellbeing.
Our revised book for family, friends and carers, When someone close to you has lymphoma, is a valuable resource for anyone whose loved one has had a diagnosis of lymphoma. The book gives tips to help you manage the physical, practical and emotional aspects of caring for someone who has lymphoma.
For both books, we’ve consulted with health professionals in the field to ensure that the information we bring you is accurate and reflects current practice. We’ve also included personal experience quotes from people affected by lymphoma and lots of tips to help you live well.
All of our books are available to download directly from our website, or you can order them free of charge through the Lymphoma Action shop.
Our latest podcast talks about skin lymphoma
In our latest podcast, entitled Don’t walk the journey by yourself, Mike and Kasia talk about their diagnosis of cutaneous (skin) lymphoma. Mike was diagnosed in 1999 and Kasia in 2023, so their experiences are very different. In the podcast they talk about the challenge of getting a diagnosis, treatments they’ve had and the challenges of living with this rare condition.
