|
|
|
About Us NSOC AGM 2008 |
On the 21st April the trustees of GF attended the NSOC's AGM at London Zoo. It was a fabulous venue for this special 25 year celebration of their beginning. Our Tania, Lynne and Nina
entertained the children with arts and crafts and they were also really lucky to have help from our good friend and GF fundraiser the magician Richie Austin and his friend Lee who very kindly gave their services free for the day.
It was great to see the children having such fun on this beautiful spring day which also enabled the parents to attend the meeting and hear the speakers.
A Summary of the Day by Sally BarrettBelow is my brief interpretation of the talks we heard at the meeting. We received a very informative lecture by Susan Buckley, a Clinical Research Physicist at The Royal Marsden about the research she was currently involved with which was being funded by the NSOC. Susan is involved in research into using dosimetry to decide the most beneficial dose of MIBG to reach the desired 4gy (absorbed radiation dose) in each patient. The standard MIBG dose given to NB patients currently is 7400 MBq (megabequerel) which takes no account of the individuals, weight, absorption rates or tolerances. This study shows that it is possible to give tailored doses to receive the best results possible. Very briefly Susan's research was based on a regime of 2 MIBG doses administered over two weeeks. The first dose (whole body dose) was based on the patients weight (approximately 444 MBq/kg). The dose administered was then carefully measured by a special geiger counter positioned above the patients bed, this involved repeated readings at regular intervals during the patients whole hospital stay. From the data gathered from the first dose the second dose (tumour dose) which is based on the tumour itself, could be delivered more accuratley with the minimum of side effects and blood toxicity. The results are still preliminary but very encouraging. There is also hope that this type of dosimetry can be used to decide chemotherapy doses in a similar way. You can view the preliminary results here. The second speaker was Dr. Penelope Brock, a world-renowned Consultant Paediatric Oncologist at Great Ormond Street Hospital and trustee of the NSOC. As it was the NSOC's silver jubilee year Peppy (as she is affectionatley known) did a talk outlining how far neuroblastoma research has come over this time. The first thing to note is that NB is very different to normal cancers it doesn't present until it is quite widespread which makes treatment difficult, other cancers have earlier symptoms and therefore treatment is more effective as it is availble a lot earlier. We also know that children diagnosed under the age of 1 have the best survival rate. Twenty five years ago in the UK we had the National Cancer Registry which was then in it's early days this has grown into 9 regional agencies that collect data on cancers registered in their regions it now also includes a specialist tumour registry. These registries are essential to the NHS cancer plan and a great resource when deciding treatment protocols etc. Over recent years some of these regional centres contribute data to international publications and european studies. One of the main changes is that back in the 1980's many countries were doing their own individual research without much collaboration with other countries, thanks to the electronic age with the world wide web and email there is much more joint research between countries that is being undertaken. (In 1982 the European Neuroblastoma Study Group (ENSG) started a registry for patients with newly diagnosed neuroblastoma (‘The ENSG Survey’). Clinical information was collected primarily to: (a) establish an ENSG database; and (b) investigate prognostic factors in neuroblastoma.)
With the progress of technology there are many more areas being researched into such as: Cytogenics (the study of chromosomes). It is now recognized that gain of chromosome 17 material is the most frequent genetic abnormality of neuroblastoma cells.Molecular Biology (understanding the interactions between various systems of a cell) - MYCN amplification is now an essential component of the routine diagnostic evaluation of new neuroblastoma patients. Histopathology (the microscopic examination of tissue in order to study the manifestations of disease) - better techniques for prognostics and staging. In recent years there has been a big increase in successful autologous bone marrow transplants (cells replanted into the person they came from) combined with chemotherapy, as well as more research into detecting minimal residual disease (MRD). There is continuing research going on with MIBG both as a treatment and as a means of detecting how far the disease has spread. The ITCC (Innovative Therapies for Children with Cancer) is a single European network linking: 34 paediatric oncology centres with expertise in Phase I-II studies, 9 research laboratories specialising in tumour biology and pharmacology and operating under a consortium agreement, 6 European countries (France, UK, Italy, the Netherlands, Germany, Austria) they are continually bringing in new drugs for children with cancer. The best thing of all is that the survival rates for children with high risk Neuroblastoma continues to get better. Sally Barrett There is still along way to go but it's reassuring to know that there is so much work going on through various organisations, these organisations however mainly rely on their work being funded by charitable organisations which is why we must keep up the momentum to fundraise.
|
|
Mission Statement | Contact Us | Disclaimer | Sitemap Copyright Georgie's Fund 2004-2010 © |