Because I can't wait until next week...
St. Jude's trial - SJHG12
SJHG12 chemotherapies: Crizotinib, Dasantinib
Memorial Sloan Kettering's trial - PD-1
PD-1 (Programmed Cell Death 1) chemotherapies: Pembrolizumab, Nivolumab
Other things I will be bringing to the table: Optune (Novocure) or ECCT (Electro-Capacitive Cancer Therapy), DCVax, Newcastle Virus, CAR T-cells, IV Vitamin C, GBM Agile Trial (set to begin mid-2016), ultrasound to open the Blood Brain Barrier, repurposed drugs such as Low Dose Naltrexone and Chloroquine... I know some of these are only for adults, but it doesn't hurt to ask.
Other chemotherapies to consider: PCV (Procarbazine/CCNU/Vincristine), BCNU (Carmustine), IPT (Insulin Potentiation Therapy), metronomic chemotherapy
3 comments:
Praying
It's encouraging so see that there are so many options and trials available. Praying . . .
Your loving family will b in my thoughts. I started reading your blog from u posting it on another site we r on together. Please keep us posted on what Dana Farber tells u or recommends. We were going there in the beginning before we switched to Duke. Since rad/chemo my sis has had a cyst and ring enhancement that's stayed stable for 12 mths. Of crse, no one knows if necrosis, or regrow th. Getting a PET this week to decide next steps (surgery, if possible, trials at Duke or elsewhere, looking at ones u r plus others but would luv to get in polio, a break if not GBM or to cont w Temodar, and so forth). Duke not keen on supplements, repurposed drugs or optune but Farber was ok w both which I liked (said not cure but ultimately they d support what she did as long as didn't negatively interfere w anything) we r in ct. Curious to c what trials u contact, say about avast in and some need surgery at there hosp. Did u get second opinions about whether it's operable? Do u have to look at trials for children only? Any time you d like to chat about trials, side effects anything u can always email. Nice to talk w others going thru this. KK s spirit and selflessness is awe inspiring. She's got more wisdom and luv than many adults. Sorry for all the questions and long post.
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