On 08/29/16 my 41-year-old brother in perfect
healthy suddenly presented with a massive headache which ended up as a 5-cm R
frontal GBM (+MGMT; wtIDH, EGFRvIII amplified, PD-1/PD-L1 negative, HLA A*02:01
negative), 90-95% resection on 8/31/16 at Cedars-Sinai, remainder 5-10% abuts
the ventricle, Caris & Foundation testing done, did not qualify for or
declined upfront clinical trials, started w/ stupp protocol w/ in 4-weeks after
surgery, but upped radiation dose in week 5 of 6, 1st MRI showed stable findings
but new nearby tiny satellite lesion seen, Keppra for first 2-months, 2nd cycle
of TMZ completed yesterday (1/16/17), 7-week delay between TMZ cycle 1 & 2
due to a 2.5-week experimental T-cell / stem cell immunotherapy out of states,
added Nivo (Opdivo) during the end of RT & going on 6th infusion now (insurance
not covering), starting Pomalyst this week (pending insurance approval), Optune
ordered end of Nov 2016 but still delayed due to insurance denial, started high
dose Vitamin C infusion 10-days ago and working up to 100 g, CBD/THC oil 1:1,
life-style modification, difficult to follow restricted ketogenic diet, has had
no seizures and no requirement for steroids beyond the post-op taper,
tolerating treatment very well, has no symptoms, labs are normal, and only
neuro deficit is subtle mild cognitive impairment. MRI last week had not
changed but most likely viable tumor tissue seen, hoping it is
pseudo-progression, awaiting result of second liquid biopsy. Inquired and/or consulted with Duke, MD
Anderson, UCLA, CSMC, NIH, Dana Farber, Cleveland Clinic, Hoag, UCI, USC and
some international sources, in addition to attending SNO 2016, but walked away
with very little. So we started our own
prescription drug cocktail early on and have kept adding. Did pharmacogenetic (PGT) testing and do
frequent labs to monitor for drug-drug interaction. Current NO has no objection to the cocktail
and in-fact recommended a few on the list. Current cocktail includes:
- Valcyte 450 twice daily
- Celebrex 200 mg twice daily
- Metformin 500 mg twice daily
- Imipramine 100 mg at bedtime
- Mebendazole 100 mg twice daily
- Livalo 4 mg daily
- Ondansetron 8 mg as needed for nausea
The non-Rx part of the cocktail includes (still trying to fine tune the
dose)
- CBD/THC 1:1 oil
- Coconut oil
- Ashwagandha
- Turmeric (curcumin)
- Boswellia serrata (Indian frankincense)
- L-Proline
- L-Lysine
- Selenium
- Zinc
- Resveratrol
- Tart cherry
- Colloidal silver
- Green tea extract and will be adding Melatonin 20 mg
Will be doing an early follow-up MRI 3-weeks from the last one on a 3-Tesla
w/ DTI, spectroscopy and perfusion weighted, for whatever it is worth.
Meanwhile, trying to be proactive and need to
start considering options in case of “recurrence” as will be excluded from most
trials since we’re already doing immunotherapy.
Thinking of adding intravenous Resveratrol and Curcumin infusion which I
just found got my hands on.
Was thinking
of adding Yervoy but hesitant given potential for serious side effect in combo
w/ Nivo.
Hope our path ends up helping
you and truly appreciate all of your guidance and feedback.
