Patients affected by a form of Neurofibromatosis have seen their tumours shrink dramatically after being treated with the drug Avastin. The latest research, which involved 24 patients in England, has provided remarkable results.
The majority of people given the drug as part of the nationally-funded NF2 service have seen significant improvements. Up to 40% of tumours have shrunk, while others which had been growing rapidly stabilised.
Some patients have also noticed improvements in hearing and neurological function, while for others there has been a substantial reduction in pain relief medication.
Avastin (otherwise known as Bevacizumab) is the first non-surgical non-radiotherapy treatment available to NF patients. The research was presented at an NF2 Conference in Manchester by Simon Lloyd, a consultant ENT surgeon at Manchester Royal Infirmary.
Neurofibromatosis, which has two main types – NF1 and NF2, affects the skin and nervous system including the brain. Soft, non-cancerous tumours develop on the skin and along the nerve tissue throughout the body. A tell-tale sign of the condition is often the presence of cafe-au-lait spots on the body. More than 25,000 people in the UK are affected by NF and every day a baby is born with the condition. NF is more prevalent than Duchenne muscular dystrophy, cystic fibrosis and Huntington’s Disease combined, but as yet there is no cure.
News of the research coincides with the launch of a new charity, Children With Tumours, which is raising funds to provide respite to children and their carers affected by NF and contribute towards vital research.
Professor Gareth Evans, a consultant in medical genetics at St Mary’s Hospital and Christie Hospital in Manchester, is Chair of the charity. The trustees believe CWT is the first virtual charity in the UK. There is no office to fund and instead the charity will function entirely through its website.
Children With Tumours