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 9/2/2011Brooklyn, NY9/9/2013 admission to:Weill-Cornell Medical CenterRight neck abscess lanced and drainedMarch 18th, 2016 admission to:Weill-Cornell Medical CenterMass discovered in head after experiencing headaches for a few weeksLeft occipital/parietal brain tumorOperated 3/19/2016"Full Gross Resection"Pathology determines Glioblastoma Multiforme "methylated"
Transferred to Memorial Sloan KetteringPhoton Radiation treatment for 33 days (Dr. Suzanne Wolden)Temozolomide chemotherapy for 43 daysMRI 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 TestOther Diagnosis via 3rd party (non-MSK) bloodwork• Positive (via Plasma test) for CMV antibodies• Positive (via DNA test) for Herpes-6 active caseOther Treatments• Cronaxal (cronaxal.com)• 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 _ http://cfnmedicine.com
• Add MCT oil; ie coconut oil extract (unless already in ketogenic ketosis)
- 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?