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Al's Comment:

From our good friends at the IBTA 

Posted on: 02/13/2014





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Low-grade glioma and chemotherapy: In 2012 Shaw et al reported early results from the Radiation Therapy Oncology (RTOG) Study 9802 of radiation therapy followed by procarbazine, lomustine and vincristine chemotherapy. In the February 10, 2013 issue of the Journal of Clinical Oncology  Marc C. Chamberlain in a letter referred to the “apparent premature reporting of trial results” from this particular trial. However, in a media release from the US National Cancer Institute (NCI) on 3 February 2014  the NCI had noted that those who received the chemotherapy regimen lived longer and that all the chemotherapy drugs are commercially available. It warned of possible toxicities while quoting co-lead investigator Dr Jan Buckner as saying “The results of this study are practice-changing”. Comment – The IBTA makes no medical recommendation as to what low grade glioma patients should do in terms of their treatment but we suggest that they bring these reports to the notice of their clinician if they are not already aware of them.

Roger Stupp interview in Cancer World magazine: A substantial and very informative interview with Dr Roger Stupp (President of the European Organisation for Research and Treatment of Cancer - EORTC) and lead investigator in the study of temozolomide and glioblastoma, appears in the January – February 2014 issue of Cancer World. The article can be downloaded from here. A key point made by Dr Stupp, as conveyed in an introduction to the article, “is to speak out against the regulation that he believes is choking innovation and investigation at its very source. He is not just talking about the EU’s Clinical Trials Directive – he wants to see an end to the complex mesh of inconsistent rules and protocols that entangle collaboration and progress in Europe … ‘You need people who are responsible, but in this world of mistrust you take away people’s responsibility: everything that is not explicitly allowed is forbidden. Stupid. It should be the other way around – you regulate as much as is needed but as little as possible’.”

In another interview on the website “Practice Update” (you will need to register) Dr Stupp canvasses the situation with molecular characterisation of brain tumours, the Novo TTF device, and the Specta platform within EORTC.

When the doctor has cancer: In a very thoughtful article in The New York Times thirty-six year old neurological surgery resident at Stanford University, Dr Paul Kalanithi, describes his reaction to discovering he has lung cancer and the insights it has given him from the patient perspective. He wrote this memorable statement: “What patients seek is not scientific knowledge doctors hide, but existential authenticity each must find on her own. Getting too deep into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability”.

Dates and events: February 14 – new abstract submission deadline for the ISPNO meeting in Singapore. March 7 – Abstract deadline for the 20th Neuro-Tumor Club Dinner Meeting at AACR. March 20 – Applications close for the Sontag Foundation’s Four-Year Career Development Award (applicants must be within a US or Canadian institution). 24 March – Abstracts and Workshops submission deadline for Cochrane Colloquium, India. March 31 – Early Bird registration deadline for the Canadian Neuro-Oncology Conference. April 10 – the 2014 Ependymoma Awareness Day. (By the way, the CERN Foundation is preparing a free guide to ependymomas which can be pre-ordered here.) July 9 -11 – Dates for British Neuro-Oncology Society conference.

Electromagnetic Fields (EMF): A European Commission-supported Workshop and Public Hearing on EMF and health effects will be held in Athens, Greece, during March 27-28. The provisional program for the Workshop is available here.Comment - The subject of mobile (cell) phones and brain tumours is certain to be discussed at these meetings.

Pituitary tumour: Doctors in India have removed a pituitary tumour from a twenty-five year old woman who had grown to a height of seven feet eight inches (233.7 cms), and is believed to be the tallest woman in the world.

Vestibular schwannomas / acoustic neuromas: In a retrospective casereview of more than 600 cases of these tumours at a US hospital researchers concluded that there is a potential role for aspirin in inhibiting their growth.

Oligodendrogliomas and Atypical Teratoid / Rhabdoid tumours: These two types of CNS tumours are among twenty-five additional medical diagnoses recently added to the (US) Social Security Administration’s Compassionate Allowances initiative.

Radiation-induced skin reaction (RISR): Despite an extensive review of existing studies researchers were unable to identify any single intervention for reducing RISR, although one meta-analysis identified oral Wobe-Mugos E as being relevant.

Sodium phosphate and constipation: The US Food and Drug Administration (FDA) has warned that using more than one dose in 24 hours of over-the-counter (OTC) sodium phosphate drugs to treat constipation can cause rare but serious harm to the kidneys and heart. Comment – Constipation is a common problem for brain tumour patients receiving chemotherapy.

Palliative care: The UK National Institute for Health and Care Excellence (NICE) has initiated a Guidance development for “Care of the dying adult”. Information about registering as a stakeholder, including national patient and carer organisations, is available here. The World Health Organisation (WHO) and the Worldwide Palliative Care Alliance have jointly released the “Global Atlas of Palliative Care at the End of Life”. It is estimated that 80% of the global need for palliative care is in low and middle-income countries. Meanwhile, the WHO Executive Board, at its meeting in January, adopted a comprehensive resolutionon strengthening palliative care “as a component of integrated treatment within the continuum of care”.

Norway and Australia: This is a link to a story about a thirty-five year old Australian man diagnosed with a glioblastoma tumour whose scientist father, located in Norway at Vilhelm Magnus Laboratory for Neurosurgical Research, was coincidentally working on a dendritic cell vaccine which the son was able to access to treat his brain tumour.

Bristol-Myers Squibb (BMS) study: In the January E-News we reported on astudy (CheckMate 143) for recurrent GBM involving nivolumab, nivolumab and ipilimumab (Yervoy), compared with bevacizumab (Avastin), due to commence that month. However, soon after that report there was a sudden drop in the share price for BMS when the company’s head of research (Francis Cuss) said in a call with investors that it was not yet ready to proceed to a final stage trial in lung cancer involving the same combination. The authoritative website states as at February 11: “This study (i.e. CheckMate 143) is not yet open for participant recruitment”.

Pediatric low-grade gliomas (PLGG): A study of 4,040 children diagnosed between 1973-2008 with a PLGG found that almost 90% are alive twenty years later and that few die from the tumour as adults.

Cricket and brain tumours: A determined UK duo have smashed the world record for the longest indoor cricket session after batting non-stop for 48 hours in an effort to raise funds for brain tumour research. They were inspired by a teammate who has been treated for two brain tumours.

Breast cancer brain metastases: Researchers at the USA Translational Genomics Research institute (TGen) have reported the results of deep genomic profiling which could uncover possible genetic origins of breast cancers that metastasise to the brain. Meanwhile another group of researchers in the USA have discovered that breast cancer cells masquerade as neurons which enable them to cross the blood-brain barrier.

Accelerating Medicines Partnership (AMP): The US National Institutes of Health (NIH), as part of the Accelerating Medicines Partnership between Government, Industry and Non-profits, have selected Alzheimer’s disease, type 2 diabetes, and autoimmune disorders of rheumatoid arthritis for a $230m pilot study to identify promising new biological targets. Comment – It has beenclaimed that “these pilot subjects will set the stage for broadening AMP to other diseases and conditions”.  Patient advocates and others should press for a similar focus on brain tumour treatments.

South African blood supply crisis: A woman from Durban in South Africa who was due to have her brain tumour removed in early January had her operationpostponed for at least a week because of a shortage of blood supplies. Her friend put out an appeal on Facebook and many people responded. Comment – Our IBTA contact in South Africa confirmed later that the shortage was continuing.

European Cancer Patient’s Bill of Rights: This document was launched in the European Parliament in Strasbourg on February 4, World Cancer Day. As a tool for addressing inequities in cancer care and highlighting the needs of patients and caregivers, it also echoes similar rights to those included in the IBTA’s Brain Tumour Patients’ Charter of Rights

Corrections and additions: In the January E-News we mistakenly referred to “UCSF” as the University of Southern California when it refers, in fact, to the University of California, San Francisco. In the same issue there was an item reporting the GLOBOCAN 2012 estimates about the number of brain tumours worldwide. This has prompted interest so we have invited Carol Kruchko (President and Administrator of the Central Brain Tumor Registry of the United States) to prepare an explanatory article about the subject for the 2014 issue of the IBTA’s Brain Tumour magazine which we hope to publish soon.


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
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