CLL SUPPORT ASSOCIATION
Tuesday 9th May 2017
10.00am – 4.00pm
The Conference Centre at Lace,
Croxteth Drive, Sefton Park,
Liverpool, L17 1AA
There were four presentations videoed at this meeting,
Professor Andrew Pettitt from the Royal Liverpool University Hospital started the meeting with a talk about blood tests followed by Jane Tinsley a Research nurse at Royal Liverpool University Hospital giving tips about looking after yourself. This was followed by two patient presentation one by John who is on W&W and Moira about her experience of treatment.
Professor Andrew Pettit Honorary Consultant Haematologist at the Royal Liverpool University Hospital; Professor of Haematology and Head of Department of Molecular and Clinical Cancer Medicine at the University of Liverpool; Chair of the National Cancer Research Institute Haematological Oncology Clinical Studies Group)
Why bother doing fancy tests in patients with CLL?
- The tumour burden at diagnosis predicts survival but not much more.
- Patients with low tumour burden want to know their prognosis without having to wait to see how quickly their disease grows.
- Doctors want information that helps with specific clinical decisions.
Professor Pettitt gives a good introduction to the tests that are used to diagnose CLL such as blood tests flow cytromery and bone marrow biopsy. He then covers the more advanced tests used to help the patients and doctors to get the Big picture.These advanced tests include testing for chromosome abnormalities using Fluorescence in-situ hybridisation FISH. This is a tests many will have heard of and many but not all will have had until treatment is required. This test identifies abnormalities such as 17p-, 11q- +12 and 13q-. IGHV mutation status is also important. These tests will help predict cll progression and whether chemotherapy will work or an alternative treatment will be required.
The talk goes on to cover the novel treatments, ibrutinib and idelalisib, and how they block signalling resulting in the cll cells being moved into the blood where there will not thrive an can be killed more easily. The current NICE approval status in the UK is listed for reference. Some very useful slide are included showing choices at diagnosis
Jane Tinsley Research Nurse, Royal Liverpool University Hospital
‘Looking After Yourself on and off Treatment’
Jane gives some useful tips from her experience supporting those with CLL through treatment and beyond.
Jane listed some important things to do and watch out for when going through treatment
Immunoglobulin G (IgG)is the most abundant type of antibody, that is found in all body fluids and protects against bacterial and viral infections. If you have 3 courses of antibiotics in a 6 months period then you should discuss with your doctors about have your lgG levels tested
She also gives an overview of some supplements and food that may help with fatigue and infections.
John Patient story on W&W
John was diagnosed with CLL in 2014 and is currently on W&W. He is also a trustee of CLLSA.
He gives a story that many will recognise.
Moira's story from diagnosis through treatment and beyond
Moira give an interesting talk about her experience of treatment from CLL since being diagnosed in 2012. A positive story of being treated as part of the Flair trial. She was part of the treatment team which helped her navigate treatment. After some ups and downs she is back on W&W with regular blood tests.