This is my first time posting to this site, although I have come across it many times in my research. My name is Jenna and I am here on behalf of my father who was diagnosed at age 66 and will turn 68 this February. Although his tumor is currently stable, his symptoms appear to be worsening. He has increased confusion and sleeps on and off all day. I am here looking for some suggestions as to what we do next.
A brief history: my father was diagnosed with grade 4 GBM in August 2015 and had a successful resection on his right frontal lobe and started temozolomide and radiation treatment. We tested the tumor material with FoundationOne and found six genomic alternations: EGFR, PIK3CA, CDKN2A/B, FAT1, and TERT. We also learned that it was unmethylated. His first recurrence was in September 2016, again in the right frontal lobe. We decided to try the Tocagen immunotherapy study, but unfortunately in late March, we saw growth again in the right frontal lobe as well as new growth in the corpus callosum, making it inoperable. Since then, my dad started getting infusions of nivolumab with re-radiation and we’ve been getting scans that show a slight improvement which has given us a few small but welcome moments of relief. At the same time, the re-radiation or nivo have caused inflammation and we believed the added pressure from that was giving him balance and bladder control issues. He recently had a seizure and now we are trying to work out whether his balance issues were actually the results of something called Todd's Paralysis. It's possible he's been having several small seizures that have been going unnoticed which then cause weakness in the limbs for days to months. If this is the case, we might be able to decrease or remove the steroids. We also reduced his nivolumab infusions from every two weeks to once a month to see if it lessens his inflammation.
I read Ben Williams' book as well as some posts here about cocktail treatments. I would love to create a regimen for my Dad but am confused about where to start. I work in anti-counterfeiting as well which makes me extra wary about procuring drugs from the internet. I would love to hear from some of you about which combinations of treatments are working, where the agents can be safely obtained, what the dosage is, and whether or not there are any side effects.
Many thanks and wishing everyone a happy new year ahead!