Thursday, 29 October 2020

Treatment options for a first recurrence of GBM

Hi everyone,

Few questions regarding my mother, who unfortunately has had a recurrence of her Glioblastoma. 


In August 2019, the Neurological Institute of McGill University (Montreal, Canada) discovered the tumor. My mother had a full resection in September 2019. Pathology : Glioblastoma grade 4, IDH1 wild type - MGMT unmethylated.

After the surgery, the Neuro team has put her on their M-HARTT STUDY - which means having condensed radiotherapy (4 weeks) with TMZ, then TMZ for 6 months and Metformin (850) on a daily basis. 

My mother and myself have been very inspired by Ben Williams, this blog, the Surviving Terminal Cancer documentary and Stephen/Ben Williams documents

We've added repurposed drugs and supplements to her diet, which I've listed below.

My mother recovered well from the operation of September 2019, being back to her 100% during the summer and having a clean MRI in July. 

Her MRI of September showed a mass of 2.5cm appeared in her brain. Neither the neurosurgeon, nor the oncologist knew whether it was radio-necrosis or a recurrence. We decided to wait for a month to see how it progressed, adding 4mg decadron to her medications. October 2020, the mass had grown 8mm, so we decided to go into surgery. 

My mother was operated 2 days ago, the surgery was done using 5-aminolevulinic acid (ALA) - which has only very recently been approved in Canada. She's well recovered from it thus far, she's still in the hospital. It seems they've removed most of the tumor, although the 5-ALA technology showed there were small cancer cells left.

We're currently waiting for the pathology from the lab and we'll also send the tumor to Foundation One. I know the results from both these analysis will guide us for the next steps, but I wanted to turn to this blog community - which I highly respect and estimate - to get all the knowledge to navigate through the next steps for this fight against GBM. 

Here are my questions:

1) What are the treatment options for this first recurrence and which one would you recommend?

2) Are there specific questions I should ask regarding the pathology and the results from Foundation One ?

3) From the list of repurpused drugs below, any of them you'd recommend we cut out or we add ?

4) Do you think CUSP9 would be appropriated in this situation and/or any other repurposed drugs? 

5) Would it be a good idea to consider Ben William's approach to chemo, i.e. BCNU chemotherapy with tamoxifen, verapamil, Accutane ? 


- Temozolomide (from Octobre 2019 to May 2020)

- Celebrex (from October 2019 until now)

- Melatonin (from October 2019 until now)

- Vitamin D (from October 2019 until now)

- Metformin (from October 2019 until now)

- Keppra (from October 2019 until now)

- Pantoprazole (from October 2019 until now)

- Atorvastatin (Summer 2020 until now) 

- Silibinin extract (Spring 2020 until now) 

- Selenium  (Spring 2020 until now) 

- Omega-3 Fish Oil Extract (Spring 2020 until now) 

- Coriolus versicolor extract PSK (Spring 2020 until now) 

- Curcumin with Peper - longvida (Spring 2020 until now) 

- Maitake-D mushroom extract (Spring 2020 until now) 

- Reishi mushroom extract (Spring 2020 until now) 

- Green Tea Extract (Spring 2020 until now) 

- Soy Isoflavones (Spring 2020 until now) 

- Resveratrol (Spring 2020 until now) 

- Boswellia Serrata (September 2020 until now)

- Tumeric with peper (October 2019 until now) 

- Green Tea (October 2019 until now) 

Many thanks for taking the time to read this,


P.S. For the French speakers/Canadians out there, there was a Radio-Canada (CBC) news piece about McGill's research for a new treatment against GBM - the  ZR2002 molecule - where my mother was featured (we've been encouraging their research):


  1. Hi Bertrand,
    The first thing I typically look at for first recurrence would be clinical trials. However I know from experience that worthwhile clinical trials recruiting in Canada are few and far between.

    I just posted a link on the blog to an expanded access protocol for PVS-RIPO (modified poliovirus). Other expanded access protocols I've looked into are only available to patients in the USA, and I've emailed to find out if this is the case for the PVS-RIPO as well.

    I believe the most common treatments (depending on your institution) for recurrent GBM are CCNU (lomustine) and Avastin (bevacizumab) or a combination of these. The BELOB trial (published 2014) showed better PFS-6 (progression-free survival at 6 months) and OS-9 (overall survival at 9 months) with a combination of CCNU and Avastin, versus either drug alone, even in the MGMT unmethylated group.
    In the phase 3 EORTC26101 trial (Wick, 2017) CCNU alone was compared to CCNU + Avastin (but they didn't have an Avastin-only arm). Overall and also for the MGMT unmethylated patients, the outcome was that CCNU alone was about equally effective as CCNU + Avastin in terms of overall survival, though progression-free survival was improved with the combination treatment.

    In the absence of clinical trials opportunities (some of which exclude patients previously treated with Avastin), Avastin could be worth a try, with or without CCNU. I would not want to rely on CCNU alone for an MGMT-unmethylated tumor.

    There are a few trials involving PD-1/PD-L1 inhibiting antibodies in Canada, but this class of drug has had low success rates in GBM as a monotherapy.

    Given the MGMT-unmethylated status, the tumor recurrence is unlikely to be hypermutated. The Foundation report will give you results for all the most commonly mutated genes in GBM. The most frequent and targetable one is EGFR. I believe the FoundationOne test now does routinely include the tumor mutational burden/load.

    At one point I had made a spreadsheet of all the most commonly used repurposed drugs and supplements for GBM and tried to give them a rating of which ones I would prioritize. This is still available in my Brain Tumor Library on Google Drive, though I haven't updated it in quite some time. The "cocktail approach" is such that every person you ask would recommend something different, and everybody has a different standard for what level of evidence to accept. And in truth nobody knows what is the optimal "cocktail" for any given individual. This makes it especially hard to give recommendations. My aim has always been to provide access to all the relevant info for motivated patients and caregivers to assemble their own cocktail (preferably under the supervision of an open-minded physician).

    Ben William's tumour was in more recent years found to carry the IDH1 mutation and these types of tumours have a different biology and response profile to therapies compared to the more common IDH wild-type GBM. For this reason I probably would not take the approach of duplicating Ben's original cocktail for a dissimilar type of tumour.

    Have you watched the film Surviving Terminal Cancer?
    If you are wanting to take the approach of using what other long-term survivors have done, Rich's (from the film) cocktail example was posted in the early days of this blog:
    And Al Musella has a list of stories from long-term survivors over at

    You sound very motivated and informed, and hopefully your efforts will pay off. Feel free to post the results of the genetic testing when that comes back.

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  3. Hi Bertrand, do you think you could write to
    My sister has been diagnosed with glioblastoma recently. She's in Montreal and I have some question for you. Thank you

  4. It's mostly about how you were able to get repurposed drugs or help me how to convince her doctors. thank you so much for your help.