Novel treatments and trials for Glioblastoma (GBM)

Here is a list of alternative and novel glioblastoma treatments including immunotherapies, repurposed drugs, checkpoint inhibitors and more. Each treatment has a description of what it does, what research has been done to legitimise it, if it is currently available and general costings.

We can’t ensure that any of these treatments will be of benefit, but we can save you time searching by sharing this list. We want you to spend your time doing what’s important to you and your loved ones.

If you have any treatments that to suggest for this list, please email 

Current novel treatments and trials for glioblastoma (GBM)

Updated 20th July 2021

Immunotherapy

ADCV (DCVax®)

Produced by a small biotech (NorthWest Bio), ADCV is an immune therapy made from each patient’s dendritic cells and the specific signature of their glioblastoma (GBM). Dendritic cells are immune cells that recognise and attack foreign invaders, or antigens. When an antigen enters the body, the immune system produces antibodies against it. This prompts the body’s own immune system to attack the GBM tumour. When reintroduced into the body, the dendritic cell vaccine educates the immune system about which antigens to attack.

Waiting on results from a phase 3 trial which, if successful, means that NWB can seek regulatory approval. As with all immunotherapy treatments this will only be suitable for a very small cohort of people. More scientific information can be found here.

It generally costs £250,000 and can be privately offered by Dr Paul Mulholland at UCL. More information can be found here.

CeGat diagnostics: peptide vaccine

CeGat is essentially a diagnostic service, offering a comprehensive laboratory expertise. From this analysis it can elicit tumour antigen-specific immune responses.

There have been multiple accounts of people under treatment using the CeGat data where the cancer is not regrowing.

It generally costs £9000 for diagnostics. The peptide vaccine is extra. This is offered at CeGat of Tubingen, Germany.

Dendritic Cell Therapy

Dendritic cells can trigger specific immune responses against cancer cells in the patient’s body. This mechanism of action has been shown in numerous studies and case reports with many different cancers.

Potential evidence of this treatments success include results from non-personalised therapy based on 6 generic peptides (CeGat does 10). More scientific information here.

This generally costs €5,000 per vaccine, taken every 4 to 6 weeks. More information here.

Ipilimumab

Ipilimumab works by stimulating certain immune cells called T-cells to find and attack the cancer.

The initial results presented last year by Dr Mulholland on a trial of ipilimumab in a small number of patients showed some promise. More scientific information here.

This particular trial of IPI-GLIO trial completed recruitment on 12th May 2021.

Pembrolizumab

Pembrolizumab helps the immune system attack the cancer and stop it from growing.

It is already a possible treatment for people with certain types of solid tumours in different cancers. Here is a Research article on the topic.

It generally costs £100,000 per year and the treatment can be offered privately by Professor Angus Dalgleish, at St George’s Hospital.

IOZK Vaccine

The IOZK-Immunotherapy mobilizes the body’s own immune response, thus enabling it to take up the fight against the tumor growth itself.

The IOZK vaccine is based on cells loaded with tumour antigens. Here is a research article about the treatment.

Laboratory tests generally cost between €4,100 and € 6,000.
IO-VAC® vaccination cycle can be between €23,000 and €28,000
A five-day treatment session can be between €6,000 and €11,000.

In total, an 8 day programme is around €55,000.

This is available at the IOZKm a treatment centre with it’s own laboratory in the city center of Cologne, Germany. Here is the Contact info.

Here is another link to the clinic.

Repurposed Drugs

Repurposed drugs have shown in laboratory experiments maybe to have an effect but to date no trials have shown a survival benefit for people with a GBM.

Metformin

Metformin hydrochloride may stop the growth of cancer cells by blocking some of the enzymes needed for cell growth.

Metformin has been linked to improve survival of patients with various cancers. There is little information on survival of glioblastoma patients after use of metformin and the research linked to here suggests that metformin is NOT associated with better survival. In this research, metformin did not prolong survival of patients with newly diagnosed glioblastoma. Additional studies may identify patients with specific tumour characteristics that are associated with potential benefit from treatment with metformin, possibly due to metabolic vulnerabilities.. Here is more scientific information.

Prices vary according to medication but largely not expensive.

Professor Angus Dalgleish of St George’s Hospital can prescribe a number of repurposed drugs that he believes are effective for treating glioblastoma.

METRICS

These medications (metformin, atorvastatin, mebendazole, and doxycycline) modulate pathways involved in cancer cell growth.

The combination medicines used in METRICS was chosen following an analysis of existing mechanistic and clinical data. Here is more scientific information.

Here is a link to the consultation costs.

The COC clinic in London prescribes METRICS. Here is a link to the COC protocol.

Low Dose Naltrexone (LDN)

Works as an anti-inflammatory, modifies certain genes and promotes cancer cell death and enhances the immune response greatly.

It stimulates the immune response.  This allows LDN to be used along-side conventional cancer-cell killing agents. Here is more scientific information.

The initial consultation costs £165 with a monthly membership fee of £62.50 thereafter and is available at the Harpal Clinic, London.

For prescribers see The LDN Trust.

Sertraline

Sertraline helps to inhibit the growth of cancer cells. Its potential lies in the fact that it passes the blood brain barrier.

The safety of using sertraline in humans has already been well described, which is a great advantage. Here is more scientific information.

Studies performed at American Association for Cancer Research.

Cannabinoids

Cancer cells have signal pathways which control growth. CBD alters the signal pathways to affect cancer growth.

Both THC and CBD have been proved in the laboratory to alter these signal pathways. Here is more scientific information. Here is a link to the CRUK Blog on the topic.

Cost varies depending on pharmacy but about £400 per pack of 270 doses. To receive this treatment, try to discuss with a consultant neurologist.

Here is Cannabinoids – information for patients and carers.

More information at GW Pharma Ltd.

Checkpoint Inhibitors

Paxalisib

This treatment slows the processes needed for cancer cells to grow. The FDA has granted a fast track designation to paxalisib for the treatment of patients with glioblastoma. Interim data from the ongoing open label Phase II GBM study appear to show improvement in survival (median 17.7 months) compared to historical controls (13–15 months). Here is more scientific information.

This treatment is offered by Kazia Therapeutics Limited, Australia. Trials have ended and further data expects to be collected on Paxalisib in 2021.

Lisavanbulin

Data from GBM mouse models and recent phase 1 clinical data (Lopez et al. ESMO 2020) suggest that EB1 is a response-predictive marker for lisavanbulin in GBM.

A phase 2 study is ongoing at The Royal Marsden to confirm this hypothesis. So far two patients have shown a positive response.

The Royal Marsden in London and The Beatson in Glasgow are currently recruiting to be followed by University College London, and the Sir Bobby Robson Cancer Trials Research Centre; Northern Centre for Cancer Care in Newcastle.

More information here. Also, a link to follow updates  here, Basilea Pharma.

Other

Pelareorep (Oncolytic Virus)

Pelareorep can kill cancer cells and there have been positive results from this trial. It was concluded that pelareorep might be a useful treatment for GBM, for some. The trial wascompleted in 2019. Results reported in 2020. It was carried out at the University of Leeds.

Various Supplements

Addresses symptoms from medical treatments with nutrition and implements strategies to deter unwanted side effects.

For a consultation: The first appointment costs $250 (90 minutes), with follow up appointments being $125 per hour.

The treatment is prescribed by Patrice Surley, Texas USA.

Here is the link to get a consultation.

Novocure Tumour Treating Fields (Optune, technology)

This is a skullcap like device with stimulating patches within. It uses alternating electrical fields to disrupt tumour cell division, or cause cell death, thereby preventing the tumour from growing or spreading so quickly.

The average (median) overall survival, from the start of treatment in a clinical trial, was 20.9 months in patients treated with Optune plus TMZ, compared to 16 months in patients treated with TMZ only.

Optune can cost in the region of £25,000 per month.

This can be offered by Professor Lindquist. More info here.

Here is a link to Novocure.

Sugar Bomb (Preclinical)

Scientists found that combining the tiny bacteria-killing molecule with a chemical food compound can trick bacteria into ingesting the drug, avoiding the chances of attacking healthy tissue and preventing the kind of side effects caused by other drugs.

Researchers say further tests are needed to show if the drug is a safe and quick method of treating early-stage cancers and drug-resistant bacteria.

Studies are being carried out at the University of Edinburgh. This is not currently available to the public.

Sonalasense (Drugs and Ultrasound)

Aminolevulinic acid (ALA) sonodynamic therapy (SDT) is created through the union of two FDA-approved technologies: ALA tumor targeting and focused ultrasound (FUS). This is FDA-approved for the noninvasive treatment of essential tremors as well as those arising from Parkinson’s disease.

Their first trials are taking place at the Ivy Brain Tumor Center at the Barrow Neurological Institute in Phoenix, Arizona. Check eligibility here.

Find out more about Sonalasense here.

More resources to help you take control following a Glioblastoma diagnosis

Brain tumour patient guides to let you know what care to expect as a brain tumour patient.

Information about common treatments (surgeries and therapies).

Support to live well with a brain tumour.

Practical help for living with a brain tumour.

For help with taking control.

Support for those caring for someone who has a GBM?

Feel less alone and more informed with webinars and meetups

Our online events include the GBM group, calmness and connectivity webinar, educational talks from professionals, information on treatments such as cannabinoids and guide you to managing new behavioural changes.

Click here to look at all of our upcoming events.

More support, and getting involved in research

Do you want to help support research? Take a look at our PRIME page.

If you have been affected by a brain tumour diagnosis, please reach out to us by calling 01983 292 405, visit our support page or  email hello@brainstrust.org.uk

brainstrust relies on donations in order to provide vital support for people with brain tumour. Fundraise to support this work.

Coaching with brainstrust

When you’re making treatment decisions it’s important that you know your values and priorities. As coaches we can help you understand what’s important to you, and use this to help you create a plan to reach specific goals.

Book a coaching session
Coaching testimonial
Don't miss the latest new brain tumour support content. Sign up for updates today.

Introduction

The Brain Tumour Data Dashboard lets you explore up -to-date, population level data about the brain tumours diagnosed in England between 2013 and 2015. Using the drop down menus on the left you can select different groups of patients to view in the charts below. In these charts the number of patients for every 100 diagnoses is displayed as images of people. Patients have been grouped by date of diagnosis, type of tumour, age, gender, and region in England.

For each group of patients you can explore the different routes to diagnosis, the proportion of those who received chemotherapy or radiotherapy, as well as the survival of the patients within each group. For more information about what these metrics mean please see the glossary.

How to use

  1. Select the year of diagnosis using the drop down menu.
  2. Select your patient group of interest from the four drop down menus in the following order:
    1. Tumour group
    2. Age at diagnosis
    3. Region of England
    4. Gender of patient
  3. To view a second chart to compare different groups of patients, click the ‘compare’ button.The second chart will appear below the first chart.

*Note that the tool is best used on a laptop or tablet rather than a mobile phone*

Unavailable data

Some of the data in these charts is not available.There are two main reasons for this:

  1. How the data has been grouped

If you cannot select a patient group from the drop down menus, the data is unavailable because of how the data has been organised.

Public Health England has grouped the data like a branching tree. The bottom of the tree contains all the patients with brain tumours, and then each branch divides the data by a certain characteristics, like age, or location of tumour. But the data is divided in an order, starting with location of the tumour (endocrine or brain), then by age, region, and gender. Age is at the start because it makes a bigger difference to survival rates and treatment rates than gender or region. Sometimes, after the data has been split by type of tumour and age, there is not enough data to be split again. This is because to protect patient confidentiality groups cannot contain less than 100 patients. Because some groups cannot be split further, you cannot create ‘totals’ for everyone by region or gender. For example, you cannot see results for all ages by region, or all brain tumours by gender. If these totals were calculated and released, it might be possible to identify patients, which is why Public Health England cannot release this data.

  1. Statistical reasons and data availability

If you can select a patient group from the chart menus, but the chart does not display, the data is unavailable for one of several reasons:

  1. Data is not yet available for the selected year from Public Health England.
  2. Data is not available because the data quality is too poor to release this statistic.
  3. Data is not available as the statistic is not appropriate for this group.
  4. Data is not available because the standard error of the estimate was greater than 20% and so the estimate has been supressed.

Up to date brain tumour data

Brain tumour data may influence the decisions you make about your care. Data also helps you understand the bigger picture, or landscape, in which you find yourself.

Brain tumour data and statistics influence the focus, and work of organisations like brainstrust. The information helps us to understand the scale and impact of the problems we are setting out to solve.

This tool helps you understand the landscape in which you find yourself having been diagnosed with a brain tumour. This landscape can be particularly tricky to navigate as there are many different types of brain tumour, all of which have a different impact.

The information you see represents the most up-to-date, official, population level brain tumour data available for England. Over time we will be adding to the brain tumour data available and publishing reports, with recommendations, as a result of what we learn from this data.

The data behind this content has come from Public Health England’s National Cancer Registration and Analysis Service (NCRAS) and is a direct result of the ‘Get Data Out’ project.

This project provides anonymised population level brain tumour data for public use in the form of standard output tables, accessible here: http://cancerdata.nhs.uk/standardoutput

Incidence

The number or rate (per head of population) of new cases of a disease diagnosed in a given population during a specified time period (usually a calendar year). The crude rate is the total number of cases divided by the mid-year population, usually expressed per 100,000 population.

Malignant

Malignant tumours which grow by invasion into surrounding tissues and have the ability to metastasise to distant sites

Mortality

The number or rate (per head of population) of deaths in a given population during a specified time period (usually a calendar year). The crude rate is the total number of deaths divided by the mid-year population, usually expressed per 100,000 population.

Non-malignant

Not cancerous. Non-malignant tumours may grow larger but do not spread to other parts of the body.

Survival

The length of time from the date of diagnosis for a disease, such as cancer, that patients diagnosed with the disease are still alive. In a clinical trial, measuring the survival is one way to see how well a new treatment works. Also called ‘overall survival’ or ‘OS’.

Routes to Diagnosis

Under the ‘Routes to Diagnosis’ tab in the Brain Tumour Data Dashboard, you can explore the ways patients have been diagnosed with brain tumours. There are many ways, or routes, for cancers to be diagnosed in the NHS. A ‘route to diagnosis’ is the series of events between a patient and the healthcare system that leads to a diagnosis of cancer. The routes include:

  1. Two Week Wait

Patients are urgently referred by their GP for suspected cancer via the Two Week Wait system and are seen by a specialist within 2 weeks where they are diagnosed.

  1. GP referral

Diagnosis via a GP referral includes routine and urgent referrals where the patient was not referred under the Two Week Wait system.

  1. Emergency Presentation

Cancers can be diagnosed via emergency situations such as via A&E, emergency GP referral, emergency transfer or emergency admission.

  1. Outpatient

Outpatient cancer diagnoses include diagnoses via an elective route which started with an outpatient appointment that is either a self-referral or consultant to consultant referral. (It does not include those under the Two Week Wait referral system).

  1. Inpatient elective

Diagnosis via an inpatient elective route is where diagnosis occurs after the patient has been admitted into secondary care from a waiting list, or where the admission is booked or planned.

  1. Death Certificate Only

Diagnoses made by Death Certificate Only are made where there is no more information about the cancer diagnosis other than the cancer related death notifications. The date of diagnosis is the same as that of the date of death.

  1. Unknown

For some patients with a cancer diagnosis, there is no relevant data available to understand the route to diagnosis.

 

More information

If any of the statistical terms in this section of the brainstrust website are hard to understand, we recommend looking them up here:

Cancer Research UK’s Cancer Statistics Explained

http://www.cancerresearchuk.org/health-professional/cancer-statistics/cancer-stats-explained/statistics-terminology-explained#heading-Seven

If you are looking for help understanding terms relating specifically to brain tumours, and treatment, then the brainstrust glossary is available here:

https://www.brainstrust.org.uk/advice-glossary.php