IBTA e-News – September 2013

By 15th September 2013e-News Archive

Neurosurgeons resign after Inquiry: In a case that has attracted widespread interest because of the issues it raises about the treatment of glioblastoma patients two UC Davis (USA) neurosurgeons have resigned after several inquiries criticised their action in unsuccessfully introducing live bowel bacteria directly into their patients’ brains or bone flaps in the hope that an infection might stimulate the patients’ immune systems.

Comment: Aware of their poor prognosis, some glioblastoma patients seek out offers of experimental therapies in order to extend their survival. The history of the episode and the issues it raises are a salutary reminder that careful institutional scrutiny and ethical oversight are necessary. These are explored in the Sacramento Bee newspaper report which is hyper-linked to above. This is a link to an earlier article about the controversy.

European Cancer Congress: There is a vibrant CNS track scheduled for the European Cancer Congress (ECC) to be held in Amsterdam during 27 September – 1 October which will also feature for the first time a 20-organisation “Patient Advocacy Square”. Please make yourself known to the IBTA volunteers at their location in the “Square”. This is a link to a searchable on-line program for the Congress which has further links to abstracts for the papers and posters. This is a link to information about the Patient Advocacy and Ethics Track as well as the Oncopolicy Forum. The late rate registration deadline is 20 September.

Bevacizumab and survival: In a population study comparing US glioblastoma patients in 2008 and 2010 (i.e. before and after approval by the FDA for bevacizumab), researchers from the Mayo Clinic have found that patients who died in 2010 lived significantly longer, which they attribute to treatment strategies involving bevacizumab.

to-BBB and US IND approval: The Dutch company to-BBB has received FDA approval for a IND (investigational new drug) for its G-Technology therapy for brain metastases or recurrent gliomas. The company states this will help it to open new study centres in the USA as it proceeds into the 2B3-101 Phase 11a part of its trial.

Celldex Therapeutics: Celldex has announced plans to add another 75 patients to the 95 already enrolled in its Phase II trial of rindopepimut plus Avastin, in order to better test the results in the Avastin-refractory component of the participants. They hope to share the results from the 25 patients in this group at the ASM of the Society for Neuro Oncology in November.

Donation for brain tumour chemotherapy initially blocked: A $45,000 NZ donation from a “friend of a friend” in the UK to a glioblastoma patient in Auckland (NZ) for his chemotherapy treatment, which was initially blocked by PayPal, has now been released after a great deal of stress had been experienced by the patient’s wife.

Radiation-induced cognitive dysfunction repair: US scientists have found that the transplantation of human fetal stem cells into laboratory rats with radiation-induced cognitive impairments led to a number of cognitive improvements and may provide “an experimental backdrop” for brain tumour patients. The neural stem cells were provided by Neuralstem Inc.

Comment: The subject is not without some ethical controversy.

Meanwhile, scientists have described the results of a meta-analysis of stimulants used for paediatric brain tumour patients with neurocognitive consequences from their treatment, as “promising”. They used methylphenidate to improve attention.

Valcyte: In a letter to the editors of the New England Journal of Medicine, researchers from Sweden’s Karolinska Institute have released promising results from a study of the anti-viral drug valganciclovir (Valcyte) for the treatment of newly diagnosed glioblastoma. Their results have led the researchers to call for a randomised trial targeting CMV (cytomegalovirus) in glioblastoma patients.

Armed patient: A 31-year old brain tumor patient found on school property in the USA has been charged with four counts of illegal weapons possession and obstruction. His family said that he was at the school to meet his mother for a ride to Emory University Hospital for a scan of a tumor on his left frontal lobe. His mother has grandchildren enrolled at the school. The patient’s brother said the brain tumor affected his reasoning and judgment and he may not have known it was illegal to have weapons on the campus.

Marijuana and brain cancer: Studies in Spain have found that Tetrahydrocannabinol (THC), the active ingredient found in marijuana, can induce the death of brain cancer cells in mice. The co-director of the Comprehensive Brain Tumor Program at Cedars-Sinai Medical Center in Los Angeles, Dr John S. Yu responded that the findings were “not surprising” and definitely worth further study, (but) he still advised people “not to run out and roll a joint” to treat themselves for brain cancer.

Undiagnosed brain tumour: A 24-year old UK mother died of an undiagnosed brain stem tumour six hours after her baby was born by emergency Caesarean, despite having been seen by 23 doctors, some of whom believed her symptoms indicated she had labyrinthitis (an ailment of the inner ear). Her organs were donated to eight people following her death.

Survey of patient advocates: The European Patients’ Academy on Therapeutic Innovation (EUPATI) has launched a survey of patient advocates and patient experts to help identify the public’s information needs regarding pharmaceutical medicines development. The survey concludes on 30 September … Meanwhile, the overall results of the IBTA’s survey of its contacts about the balance between realism and hope as portrayed in the articles contained in its Brain Tumour magazine were released via a poster at the recent Australian Palliative Care Conference and can be downloaded from here. Abstracts from two presentations about the palliative care needs of brain tumour patients presented by other authors at the same conference can be downloaded from here and here.

Meningiomas: US researchers have identified expression of the NY-ESO-1 protein in 108 of 110 meningioma tissue samples and believe this could be a potentially significant target, particularly because of a previously-unrelated clinical trial at the National Cancer Institute designed to activate the immune system of patients with other types of tumours that express the protein.

Magnetic hyperthermia: Magnetic hyperthermia - which involves injecting magnetic nanoparticles directly into a tumour - has been considered to have relevance to the treatment of brain tumours. Researchers believe that they have now identified the means of calculating accurately the dose of magnetic particles and the length of treatment required.

BCNU and microspheres: Bioengineers and chemical engineers believe that they have identified a more precise method involving electrojetting and encapsulation of BCNU in polymer beads for drug delivery, which could be used with brain tumours.

Make-A-Wish in the Netherlands: A survey of 235 parents whose seriously ill children had been granted a wish by the Make-A-Wish Foundation in the Netherlands, confirmed the usefulness of the scheme and that their child momentarily did not feel ill during the event and the child was distracted from their situation.

Thank you for all your continuing support.

Denis Strangman (Chair and Co-Director)
International Brain Tumour Alliance IBTA
www.theibta.org

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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