I would appreciate your helpful insights for a friend I am assisting regarding what is thought to be the best treatment options in case of recurrence? What are the most promising clinical trials? Would it be better to consider compassionate use of drugs in late-stage trials? I realize everyone's situation is different, so here are a few details:
Full resection in Aug 2018 at age 48. GBM unmethylated, IDIH wild type. Full genetic testing done, which showed he may be sensitized to a PARP inhibitor due to being BRCA1 positive, perhaps niraparib. We read that SLFN11 expression can further indicate sensitization to PARP inhibitors and his SLFN11 expression is “normal” and there are no mutations – so if this gene is important in the response to PARP inhibitors, that should be positive. However, NO and MO say there is not enough data to show dosages of the PARP inhibitor with TMZ so are holding off on using at this time as he has just completed third round of 5/23 TMZ. They believe BRCA1 sensitizes patients to TMZ even if unmethylated.
Is consideration for a clinical trial a better option in case of recurrence? There was something suspicious on the last MRI in a new area of the brain, so they have moved up scans to check again. He is consulting with UCSF after each scan along with local doctors.
His cocktail also includes Valcyte, Celebrex, Metformin, Mebednazole, Keppra, Atorvastatin, Doxycycline, Bosweillic acid, Omega 3, mushrooms, Vit D, Curcumin, Probiotic, Selenium, Magnesium, Green tea extract, Melatonin, Astragalus, Milk Thistle, Lysine, Cimetidine, MCT oil, keto diet, lots of exercise. He is also on Optune.
Thank you so much for your input!
Within what geographic area would he be looking for clinical trials? Do you have access to the full genetic testing?
ReplyDeleteMy husband’s situation is very similar. He’s 49 diagnosed in July 2018 - unmethylated wild type and has the BRCA1 mutation along with the following mutations:
ReplyDeleteEGFR amplification – equivocal
KDR amplification
KIT amplification
PDGFRA amplification
CDKN2A/B loss
TERT promoter -124C>T
TP53 Y327fs*9
His current treatment is as follows:
Curcumin 700 mg BID
LDN 4.5 mg daily
Mebendazole 400 mg daily
Lecithin 700 mg BID
Stress B complex daily
Cannabis
Keto diet
Optune
Opdivo infusions
Monthly tetanus shot
Vitamin D3 5000 IU
Metformin 500 mg BID
Valgancyclovir 450 mg 2 tabs daily
Baby aspirin 81 mg daily
Cod liver oil 1250 mg daily
Zyprexa 2.5 mg morning/5 mg evening
Granisetron BID
We are in NYC. Eager to hear what you find out!!!