All -

Been following for some time now.  My dad (age 62) was dx in November of this year; methylated but wasn't able to do more than a couple of weeks of TMZ due to platelets; tumor is growing.  We're in contact with Dr. Clovis from Brazil to obtain perillyl alcohol for him but, he needs to ship the POH to a lab or pharmacy and we're striking out everywhere on that.  Does anyone happen to know of a place in Wisconsin, Northern Illinois or DC that's done this for someone before or have any tips on how to find a place that will do this?  Everyone we've reached out to seems entirely bewildered by the request.  Thanks so much for your help!

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 (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:

Drugs:

• Chloroquine; off-label malaria medicine

Supplements

• 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)

• 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?

Thanks

Winston

Brooklyn