Monday, 27 July 2020

Recurrence: VAL-083 or CCNU? Keytruda?

Hello all,

A few questions for my friend who is unfortunately having a recurrence.

1) Following surgery, is it better to go with VAL-083 since he is unmethylated or stick with CCNU since that is more the standard protocol for recurrent GBM? Any experiences with VAL-083 out there? 

2) Is the tumor genetic sequencing provided by the University of Pittsburgh considered the best, or should he request a Caris report?

3) Have any of you or your loved ones tried Keytruda pre-operatively to activate the immune system? How did you feel about it? Any significant side effects? 

For background purposes:

My friend was diagnosed in August 2018 - age 48. He had a total resection followed by SOC, Optune, supplements and 11 months of TMZ. A second tumor developed slowly  in the occipital area and was removed in November 2019. Unfortunately, the tumor recurred at the second site shortly after the surgery. However, following a second course of radiation and TMZ, it remained stable for six months. Avastin was used to control swelling and reduce tumor growth. In addition, a PARP inhibitor, Olaparib(Lynparza), was added after SOC as indicated by the genetic analysis. The tumor was unmethylated and IDH mutated.

The second tumor location recently started showing activity again. So a third surgery is planned in the next couple of weeks. We are looking at which chemotherapy to pursue afterwards and whether to use Keytruda before or after, as well. We have a friend that had a very positive response following a recurrence on the VAL-083 MD Anderson trial. He was unmethylated, as well, and has had clear scans for six months since completing VAl-083.

My friend was advised to stop using Avastin, although we have seen some studies that continued to use it in combination with CCNU. He is now age 50 with no deficits. He continues to use Optune. Any thoughts, experiences or pertinent studies relating to the chemo options for recurrence, VAL-083 and Keytruda would be greatly appreciated. We are grateful for the combined wisdom of Stephen and this community.



Saturday, 25 July 2020

Questions on my mom's drug cocktail(GBM Patient)

Hi folks/Stephen,

My mom was diagnosed with Glioblastoma(GBM) in September 2017. Following is the details of her GBM:

Her last scan was 6 months back and showed no growth, choline elevation or perfusion. We're yet to get another scan done in a few days from now.

She has been on the following supplements for almost the past three years. She started Chloroquine and Valganciclovir a year back. I had the following questions to ask, would be great if you can help me with the answers:

1. Is it safe to take these supplements for such a long duration? Are there any supplements that you would suggest that need to be stopped/paused? My concern is specifically with supplements like Valgancyclovir and Chloroquine, given the fact that they are not naturopathic/nutritional supplements?

2. Is there any supplement that you would suggest adding to my mom's drug cocktail? I've shared details of my mom's biopsy/genetic mutation below my mom's supplement list.

3. Are there any doctors/integrative oncologists that you would suggest consulting? I have been consulting Patrice Surley so far for my mom's treatment beyond the standard of care.


SupplementCap count per day
Boswellia Serrata 500 mg8
Keppra 500 mg2
Chloroquine Phosphate 250 mg1
Valganciclovir 450 mg1
Curcumin + Piperine 1 g4
Longvida 400 mg2
Metformin 500 mg3
Quercetin 865 mg4
Resveratrol 200 mg2
Bromelain 500 mg6
Reishi 1g2
Artemisia 1 g2
Ashwagandha 500 mg1
Selenium 200 mcg1
Vitamin A + D + K2 - 5000 IU1
Molybdenum Glycinate 1g1
Celebrex 200 mg2
Green tea extract 500 mg 40% EGCG2
Juice from 5g of Ginger1
Garlic 2 cloves3

Details of the genetic mutation of my mom's tumour

Following are the details from her biopsy

IDH1 and IDH2: Not detected
CHR 1p and CHR 19q: Negative for CHR 1p and CHR 19q codeletion
Methylation: Detected
Ki67 labelling index is 15-20%

Following is her FoundationOne report:

Genomic Alterations Identified
EGFR A289V – subclonal, amplification, EGFRvIII
CDKN2A/B loss
TERT promoter -124C>T

Additional Findings
Microsatellite status MS-Stable
Tumor Mutational Burden TMB-Low; 3 Muts/Mb

Additional Disease-relevant Genes with No Reportable Alterations Identified†

Following is the diet and supplements that my mom is taking:

Diet: Ketogenic Diet/Low Carb high-fat diet

I look forward to hearing from you all!

Saturday, 4 July 2020

Reirradiation + ketogenic diet + intermittent fasting, randomized trial

ERGO2: A prospective randomized trial of calorie restricted ketogenic diet and fasting in addition to re-irradiation for malignant glioma    (full PDF from sci-hub)   (link to journal abstract, full PDF requires a payment)

Half the patients were randomized to re-irradiation plus standard diet (SD), the other half were randomized to re-irradiation plus ketogenic diet plus intermittent fasting (KD-IF).

  • PFS6 was not significantly different between the two groups (KD-IF: 20%, SD: 16%). 
  • Similarly, no difference in PFS, local PFS6 and OS was observable.
  • Explorative analysis revealed that patients of the KD-IF group who had a glucose of less than the median (83.5 mg/dl) on day 6 had a significantly longer PFS and OS compared to those above the median