Between the ninth and the twelfth of October, at the National Institutes of Health (NIH) in Bethesda, Maryland, the fourth Biennial World Summit of Brain Tumour Patients Advocates took place.

The event was organized by the International Brain Tumor Alliance represented by Kathy Oliver, in cooperation with the National Cancer Institute (NCI), represented by the chief of the Neuro-Oncology Branch Dr. Mark Gilbert and his deputy Dr. Terri Armstrong.

The meeting was attended by representatives of 25 countries, oncologists, neurosurgeons, radiotherapists, geneticists, pathologists, physiotherapists, representatives of foundations and associations working for patients with brain tumors, representatives of pharmaceutical companies investing in drugs targeted at brain tumors and the patients themselves.

The first day of the event was focused on medical subjects. World class doctors shared news in specific areas. On this day, participants were also invited to visit the NCI laboratories, which are undergoing research into therapies aimed to overcome brain tumors.

WHAT’S NEW IN MEDICINE – summary of the first day

Drugs – TG02 (Zotiraciclib) deserves attention. In NCI laboratories participants could personally see the disappearing TG02-treated cancer cells. The drug is not available at the moment outside of the clinical trial, but it is worth observing the results, the manufacturer expects effects mainly in GBM and DIPG.

Radiation therapy – new methods of sensitizing the tumor have been discussed, including the use of checkpoint inhibitors (this is obviously not part of the standard, but it is worth checking with leading oncologist the possibility of taking nivoloumab / ipilimumab during irradiation).

Neurosurgery – advice underlined during the lecture: very rarely in brain tumors surgery is urgent i.e. necessary to be performed <24h, therefore it’s worth looking for an optimal place (e.g. the one where the effectiveness of the surgery is increased by e.g. using appropriate acids (sodium fluorescein as one of the latest solutions) or appropriate technologies (such as e.g. intraoperative use of ultrasound).

Dr Margarita Raygada (geneticist) shared the results of research on the risk of brain tumors in several members of the same family. The vast majority of brain tumors are not hereditary, but there are some genes and related syndromes that can occur in the family and predispose to various cancers including brain tumors (these are very rare situations). There are some external appearance features that could arouse interest and was confirmed as syndromes associated with central nervous system tumors – e.g. lateral or medial curvature of the finger or toe in their plane, or genetically conditioned polyposis (Cowden syndrome).

Dr. Ken Aldape, head of the Pathology Laboratory at NCI, shared information on the latest classification of brain tumors.

Although there is no scientific breakthrough in each of the fields (radiotherapy, immmuno, surgery, etc.) there is a visible progress. May they bring such an expected change in the effectiveness of treatment.

PATIENT ADVOCATES- day two

On the second day, foundations and associations shared their experience. Our Foundation was represented by Magdalena Magiera who gave a speech about the challenges in Polish oncology and the goals of the Foundation itself.

We had the opportunity to talk about our three main priorities:

1. better availability and greater scope of molecular testing for Polish patients,

2. the need to create recommendations linking mutations with therapeutic options

3. advocating for the availability of appropriate drugs

On top of that, our priority of broadly understood support for patients and their families during the difficult disease journey, remains unchanged.

On the last day, participants could learn about the results of an international survey conducted among cancer patients (with a high percentage of Polish patients – as much as 29% of respondents came from Poland). The results help foundations and associations get to know patients’ needs and plan their supporting activities even more optimally.

Great event, fantastic people, useful knowledge, perfect organization. We look forward the 5th Summit in 2021!