The slides from presentations given at the CLLSA conference in London at Bart's on the 7th of Nov 2017 are now available on the main site. cllsupport.org.uk/article/c...
Programme
Dr Piers Patten, Consultant Haematologist at King's College Hospital London gave a talk with the title Latest CLL treatments availsble on the NHS.
This was followed by small group discussions talking about Coping with CLL with a specific focus on the role of careers/supporters and what help they need.
Dr Samir Agrawal, CLLSA trustee Consultant Heamato-oncologist at Barts Hospital talked about The Remote Care Programme they have set up in Bart's. Pauline Stow talks about her experience using the system as a patient.
After lunch
Professor John Gribben, Centre lead for Haemato-oncology and Professor of Medical Oncology at Barts Hospital London, talked about CAR-T cell therapy.
Olga Janssen, CLLSA Trustee, gave a talk entitled CLLSA goes local. Exploring options for local support groups.
This was followed by small group discussions to help determine what the CLLSA's priorities should be to acheive a good patient experience of care.
Patient/Career CLL Stories Surjeet Soin and Gail Wiegman gave their CLL stories.
Unfortunately no videos were possible at this meeting. - follow the link above to access the pptx presentations.
If anyone attending the meeting would like to write a few lines about what they took away from the meeting I am sure others would be interested to hear.
Written by
Myrddin
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I attended with my wife. Great venue in the Great hall. climb up an impressive staircase looking at a full length masterpiece by William Hogarth, bit different to my stairs and hallway at home! Below are notes from Dr Patterns Presentation. Excellent speaker!
Latest CLL Treatments Dr Piers Patten
One third aggressive, one third passive. One third progressive. 8% Richters Binet Stage A CLL. W and W.
Key indicators include BC or platelets dropping fast.
Early eradication with newer drugs under trial. Till now no substantial evidence that early treatment has significant benefits.
Need to monitor for night sweats, energy loss, lymph nodes enlargement, unexplained weight loss, constant and lengthy infections.
Monitor coughs/colds, if they linger see your GP for antibiotics.
Take vaccines but not live ones such as for Shingles.
Increase risk of other cancers, most common is skin cancer so monitor abnormal growths.
Use cll Nurse Specialist for advice/questions.
Blood tests look for trends not absolutes such as platelet, Haemoglobin or WBC count.
90% will take Chemo route, still gold standard. 10% do not respond well to Chemo. Key diagnosis point can be TP53 gene found on chromosome. 17p is it intact? Get FISH test (fluorescent Paint Chromosome) if normal then mutation analysed. If mutated chemo therapy will be resisted. Other tests of the antibody gene, mutational status. Maybe flow symmetry of CD38. Maybe bone marrow test, CT scan blood tests for viruses.
FCR gold standard. Fludarabine Cyclophosphamide (chemo tablets by mouth). Rituximab, given by IV. good response based on disease progression and length of remission.
Less likely combos Inc. Ofatumumab or Obinutuzimab. Target C20 marker on CLL Cell 9bad b cells)
If you have other conditions, maybe Bendamustine and Rituximab or Chlorambucil with Obinutuzimab or Ofatumumab.
BCR – inhibitors available through clinical trials for patients who have never had treatment. Must be used indefinitely. 6 month s intolerance, switch drugs.
Symptoms reduce quickly but can have side effects such as nausea, diarrhoea or infections. Regular reviews, four weekly cycle. At end of treatment may get bone marrow test or CT scan.
Why not offered newer drugs straight away? Ibrutinib and Idelalisib. Bad cells released from glands and spleen so WBC spike early then die off in blood stream.3-year disease free rates so far average with newer drugs. FLAIR trial underway to provide better analysis of impact. Step one Is treatment needed? Step 2 Is it appropriate for you to have FCR? Then at random you may, I in 4, get FCR, Ibrutinib alone, Ibrutinib with Rituximab or Ibrutinib with Venetoclax.
Running at 104 Centres. Note you still can have side effects with newer drugs. Ibrutinib, heartbeat fluctuations, bruise easily, joint pains, skin rashes. Idelasilib, infections, diarrhoea, liver and lung problems,
What if I had FCR 3 years ago and disease has returned? You may get put back on watch and wait, sometimes repeat chemo if had long remission. Other drug options above may be offered.
What can you do? Keep healthy diet, manage weight and fitness. Monitor infections and symptoms.
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UK webinar - CLL treatment a changing landscape
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Lets get our message out there UK CLL'ers
