IBTA e-News – December 2013

By 16th December 2013 September 6th, 2017 e-News Archive

Society for Neuro Oncology (SNO) ASM: Year by year the SNO Education Day and Annual Scientific Meeting (ASM) keeps attracting more attendees. The meeting held in San Francisco during 21-24 November, in conjunction with the 4th Quadrennial Meeting of the World Federation of Neuro-Oncology (WFNO), had around 2,100 registered attendees. This is a link to an overall summary of the highlights prepared by IBTA advisor Chris Tse. The 2014 Education Day and ASM will be held during 13-16 November in Miami, Florida.

Patient Advocates’ World Summit: Just prior to the SNO ASM, the IBTA organised the First World Summit of Brain Tumour Patient Advocates, which was attended by 64 participants from 20 countries. The meeting was nearly two years in the planning and was voted a huge success by the participants. The IBTA was able to raise sufficient sponsorship for the meeting to provide two nights’ free accommodation and meals, and partial or full travel assistance to all who required it, particularly for the attendees from the less wealthy countries. These are links to the participants’ bios and photos. A report of the proceedings will be produced soon. As is customary for the IBTA at this time of the year, we have spent most of the funds raised for our 2013 work and will now embark on raising funds for our work in 2014.

Pathology: Doctors treating a five year old brain tumour patient were granted a “compassionate use” exemption by the US Food and Drug Administration (FDA) to pursue genetic sequencing of the patient’s tumour because of their inability to agree on a diagnosis. The results did not lead to an exact diagnosis but allowed them to be more comfortable in applying a standard treatment regimen ... A new journal has been launched entitled The Journal of OncoPathology with distinguished CNS researchers Steven Brem and Brigitta Baumert as Associate Editors. Readers can sign up for a free trial.

Brain Tumor Guide for the Newly Diagnosed: Al Musella from the Musella Foundation has produced a new edition of Brain Tumor Guide for the Newly Diagnosed which is 116 pages and available for free either as a download or hard copy. Further information is available here. It is a useful handbook for patients, their caregivers, and families.

Dr Stanislaw Burzynski: The controversial Texas-based brain tumor clinician Dr Stanislaw Burzynski, who was the subject of an unfavourable analysis on the UK BBC television program Panorama, has been the subject of an unflattering journalistic investigation by the US news journal USA Today.

Project Violet: In a further example of raising research funds through Internet crowd-sourcing, Dr Jim Olson from Seattle (USA) has launched Project Violet in which the public are encouraged to adopt a candidate drug molecule and follow its progress. His work on a “Tumor Paint” (BLZ-100) involving scorpion venom to highlight cancerous cells in the brain is proceeding and there was a report in the USA last month that his biotech company Blaze Bioscience would commence a clinical trial of BLZ-100 in Australia in December in an as yet-unnamed hospital.

Diagnosing brain tumours: Researchers at the University of Central Lancashire (UK) have developed a quick method of diagnosing gliomas by analysing blood samples for the presence of glioma serum. They used a combination of infrared lighting and protein biomarkers.

Short items: Former employee of the American Cancer Society Mark Edmiaston has been named as the new President of the (USA) Children’s Brain Tumor Foundation ... The deadline for Abstract submissions to the 16th International Symposium on Pediatric Neuro-Oncology (ISPNO), being held in Singapore during 28 June – 2 July 2014, is 7 February 2014 … The Australian Cooperative Trials Group for Neuro-Oncology (COGNO) has selected 24-25 October for its 2014 Annual Scientific Meeting in Melbourne. Dr Lisa M De Angelis (USA) and Dr Minesh P Mehta (USA) will both participate as guest speakers ... Oxford University Press and the Society for Neuro-Oncology have announced the publication in 2014 of a new journal Neuro-Oncology Practice, to be edited by Dr Susan Chang (USA). The journal will cover applied neuro-oncology and its launch has been made possible by a grant from the (USA) National Brain Tumor Society ... Up to 20 full and partial scholarships will be granted to patient advocates to attend the 2014 Drug Information Association (DIA) annual meeting in the USA. The application deadline is 31 January 2014. More information is available here ... Applications for College scholarships granted by the (US) Pediatric Brain Tumour Foundation close on 15 March 2014 ... The deadline for abstracts for the 11th Meeting of the European Association of NeuroOncology (EANO), to be held in Turin, Italy, during 9-12 October 2014, close on 23 March 2014 ... The advance registration deadline for the Pediatric Neuro-Oncology Symposium to be held at the University of Texas MD Anderson Cancer Center during 28 February – 1 March 2014, is 20 January, 2014.  The meeting is being held in memory of Dr Marnie Rose. More information is available here ... A ten year old UK boy has written a letter to Santa saying that “I would like one spacific (sic) thing this year. My Dad has a really bad brain tuma (sic) & if you could, could you please find a cure for him to make him better …”. Early registration and abstract submissions for the 11th meeting of the Asian Society for Neuro-Oncology (ASNO) to be held in Istanbul, Turkey, during 11-14 September 2014, are now open … The papers and abstract submission deadline for the 11th Annual World Congress of the Society for Brain Mapping and Therapeutics (SBMT) has been extended to 25 January 2014 … Toronto teenage brain tumour patient Olivia Wise, whose version of the song “Roar” by Katy Perry, went viral on You Tube, died on 25 November but not before her song received more than one million views … In the conclusion to an earlier report in the IBTA E News the UK Medical Practitioners Tribunal Service has struck off the medical register a surgeon who lied about removing a female patient’s brain tumour … The 5th ESO-SIOP Europe Masterclass in Paediatric Oncology, which has a section on CNS tumours, will be held in Ljubljana, Slovenia during 17-22 May 2014 … In a follow up to a story in the September E News about a 24 year old UK woman who died from an undiagnosed brain stem tumour the patient’s mother has received an appreciative letter from the recipient of the young woman’s kidney as a result of multiple organ donation …

Palliative care and brain tumours:  Following an increased awareness of the role of palliative care displayed at the recent ASM of the Society for Neuro Oncology, the Australian Institute of Health and Welfare has recently released a report about Palliative care services in Australia 2013 which illustrates the significant use of palliative care services by brain tumour patients. Just over half of the people who die in Australia die in a hospital. A majority of people classified as having a palliative care hospitalisation have cancer.

Between 2010-11 those people who had a principal diagnosis of a primary brain tumour constituted just 2.2% of all palliative care hospitalisations. Nevertheless, for those who died in hospital with this diagnosis during the same period, about four out of five (81%) were identified as a palliative care patient, suggesting the high service use for this group of people and their families.

Not a “bucket list”: In an unusual variation of the concept of a “bucket list” which is a list of all the things you must do (i.e. things you want to do before you die), a 26 year old US woman with an inoperable brain tumour which has impacted on her optic nerve, has compiled a “to see” list before she loses her sight completely. The list includes seeing Australia’s Great Barrier Reef, and meeting Celine Dion. She has now achieved the latter wish.

Danish RESPECT study: In a novel study 120 children diagnosed with cancer in eastern Denmark will be the subject of an educational and physical activity intervention to identify the beneficial impacts of such a program. The program envisages the appointment of groups of two school children “ambassadors” who will accompany each patient during the intervention program.

European cancer survival rates: Two major reports of cancer survival in Europe during 1999-2007 based on EUROCARE – 5, which is a population based study, were released in early December. Unfortunately, their content is only available on subscription.  A media release which the IBTA has received quotes the childhood study co-leader Dr Gemma Gatta as saying that the survival for childhood CNS tumours remains poor at 58%.

Canadian survey: Canadian researchers have created an on-line survey for clinicians only in which respondents are asked to evaluate tradeoffs between quality of life and survival for pediatric brain tumours. This is the link to the survey and this is the invitation code clinicians will need to enter: M6irpx5w They have to first register and create a password.

Tumor cluster: From time to time claims of a geographical brain tumor cluster arise. The latest suggestion is for the small city of Moorpark, near Los Angeles, whose residents have approached consumer advocate Erin Brockovich to help them … Residents in the small Italian town of Acerra, near Naples, also report an unusual incidence of paediatric brain tumours but  blame it “on the rogue dumping of toxic chemicals in the countryside by the Camorra crime syndicate”.

Disappointing discovery: In what appears to be a discovery with disappointing implications, US researchers have found that brain tumor cells “resist therapy by dialing down the gene mutation targeted by drugs, then re-amplify that growth-promoting mutation after therapy has stopped”.

New immunotherapy approach: Researchers at the University of Zurich believe they have made a significant breakthrough by combining intra-tumoral Interleukin-12 treatment with the intravenous administration of a novel immunostimulating drug that suppresses regulatory T-cells in animal studies of glioblastoma. They are now looking for a commercial partner and its early use in clinical trials.

Legal case: A 37 year old female brain tumour patient in Ireland has received €2.5 million (about $3.4 m USD) in a High Court settlement related to a delayed diagnosis and surgery, brain injury, and contracting the MRSA virus while in hospital.

Medulloblastoma and proton therapy: A presentation at the September meeting of the American Society for Radiation Oncology’s 55th Annual Meeting has sought to show that the more expensive proton therapy is cost-effective for children with medulloblastoma in so far as it avoids years of costly side effects.

Nigeria: An insight into the challenges of obtaining standard therapy in a less developed country is illustrated by the case of a ten year old boy in the Idi-Aba Medical Centre in Nigeria where his family need one million Nigerian Narira (about $6,307 USD) for the required neurosurgery for a brain tumour.

Uganda: A team of surgeons from Duke University, North Carolina, USA, recently held a one-week neurosurgery camp at Mulago National referral hospital in Uganda where they were able to operate on 24 patients.

EANO: In the latest issue of Oncology News Professor Geoff Pilkington, retiring President of the British Neuro-Oncology Society (BNOS), gives some background about the European Association of Neuro-oncology (EANO) and mentions that the leaders of the various national neuro oncology groups throughout Europe meet as a specific committee during the biennial EANO Congresses.

Company developments: Novocure has announced that the (USA) Centers for Medicare and Medicaid Services (CMS) has established new therapy-specific Healthcare Common Procedure Coding System (HCPCS) codes to describe treatment with the Novo TTF-100A System. This move should facilitate access to the device. In the body of the announcement there was a reference to the fact that Novocure has now certified 115 US neuro-oncology centers to prescribe the therapy … US-based Kinex Pharmaceuticals has received Orphan Drug designation from the FDA for its drug KX02 which is a dual src/pre-tubulin inhibitor against gliomas. Its Chinese partner XiangXue is planning trials for Chinese patients in 2014 … Canadian company biOasis Technologies claims that its BT2111 (a conjugate of Herceptin) not only crosses the blood-brain barrier but also penetrates the blood-tumour barrier up to ten times better than Herceptin alone … The Australian-based Ceres Oncology Pty Ltd, which is wholly owned by Circadian Technologies Ltd, has announced the successful completion of a Phase 1b study of VGX100 and Avastin in solid tumours, including brain tumours … Arch Biopartners Inc presented data at the SNO/WFNO ASM showing how they used a panel of peptides to successfully image a range of diffuse infiltrating brain tumours … NewGen Therapeutics also presented data at the SNO/WFNO meeting showing a high therapeutic potential for its NT-113, which is a novel erbB inhibitor … Stemline Therapeutics also reported promising clinical trial results at the SNO/WFNO meeting for its synthetic peptide vaccine SL-701 …

Best wishes: The IBTA would like to extend to all its supporters our best wishes for the holiday season and we hope that your aims and aspirations will be fulfilled during 2014.

Thank you for all your continuing support.

Denis Strangman (Chair and Co-Director)
International Brain Tumour Alliance IBTA

Kathy Oliver (Co-Director)
PO Box 244, Tadworth, Surrey
KT20 5WQ, United Kingdom
Tel:+ (44) + (0) + 1737 813872
Fax: + (44) + (0) +1737 812712
Mob: + (44) + (0) + 777 571 2569

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