Monday, 14 November 2016

Help in evaluating additives to daughter's regime

Hello all-

We have recently been advised by Raymond Chang in NYC to add a number of supplements and off-label drugs to our daughter's regime.  Her current situation/regime:

Our 5 year old:

DOB 9/2/2011
Brooklyn, NY

9/9/2013 admission to:
Weill-Cornell Medical Center
Right neck abscess lanced and drained

March 18th, 2016 admission to:
Weill-Cornell Medical Center
Mass discovered in head after experiencing headaches for a few weeks
Left occipital/parietal brain tumor
Operated 3/19/2016
"Full Gross Resection"
Pathology determines Glioblastoma Multiforme "methylated" 

Transferred to Memorial Sloan Kettering
Photon Radiation treatment for 33 days (Dr. Suzanne Wolden)
Temozolomide chemotherapy for 43 days
MRI on 7/8/2016 'clear' 

'Maintenance' regime of temozolomide prescribed for 12 cycles (5 days chemo/23 days off)
Currently in 5th? cycle 
MRI on 10/5/2016 'clear'
Genetic sequencing/testing
• Cornell _ Precision Medicine
• MSK _ Methylation array
• MSK _ Impact Testing
• Caris Test

Other Diagnosis via 3rd party (non-MSK) bloodwork
• Positive (via Plasma test) for CMV antibodies
• Positive (via DNA test) for Herpes-6 active case

Other Treatments
• Cronaxal (
• Cannibas oils (THC/THCa/CBD)
• Chinese Herbs (prescription pending)
• Supplements- Vitamin B, C, D, L-Lysine, Curcumin, sodium selenite, paw paw, cayenne pepper w/garlic, green tea extract, etc.
• Ketogenic diet since appx. June 2016

What Dr. Chang recommends adding:


• Chloroquine; off-label malaria medicine


• Ruta 6

• Coriolus PSP capsule - 1 capsule 3x/day

• Scorpion Venom (1/4cc @ 3 times/day)
     - Escozine (difficult to get in USA)
     - Dr. Connealy _

• Add MCT oil; ie coconut oil extract (unless already in ketogenic ketosis)

• Herpes-6
      - Add Colloidal Silver to her diet

What do you guys think about how we see if we should add any of these?  Some are very difficult to get (Scorpion Venom).  Does anyone have any advice / experiences in using these supplements that can comment?



  1. I'm so sorry to hear about your daughter - what a young age.

    I would download Stephen's spreadsheet on supplements and drugs where he rates them and also posts important information about interactions as I found that the most helpful thing to date to work through all the information out there.

    1. Where can I find this spreadsheet?

    2. Hi Patricia, this spreadsheet is in the Brain Tumor Library, a folder I keep on my Google Drive account. I can share this with you if you send me an email. My email address is on the User Information page at the top of this blog.

  2. Hi! I'm so sorry to hear about your daughter. My husband has been diagnosed with stage IV gastric cancer, and he's having chemo, immunotherapy and a big cocktail (that's why I read this thread). He has been on escorpion venom since October 2016. I buy it to life escozul (@lifescozul on FB, for email contact). I did a lot of research before buying it. I live in Mexico City but we have a vacation house in San Antonio, so they have send it me a package there. I wish the complete recovery for your daughter. Jimena