When I first joined the Cancer Compass forum, it was very early on (around page 45 or so). At that time, I wasn't sure how squirrely I would have to be in order to get prescription meds, so I used the pseudonym "Alan" in order to discuss all levels of things.
My name is Kendall, and my now fiance Bernadette was diagnosed with GBM on November 12, 2014 at the age of 26. She had surgery to remove about 96% of it on November 13, 2014.
Tumor Information:
About the size of a lime
Located in right frontal lobe
IDH mutation (usually mutually exclusive from EGFRvIII mutation, so rather rare)
MGMT methylated
EGFRvIII positive (usually mutually exclusive from IDH mutation, so rather rare)
Giant Cell GBM (maybe around 5% of GBM's are giant cell?)
p53 mutation
Had standard 6 weeks of chemoradiation, and it currently only 5/23 cycles of TMZ. She weighs about 100 pounds, so take that into consideration when looking at dosages.
We've gone through iterations of her cocktail, and this is what she is currently doing. I've listed dosages and brands as best as I could. I've also broken down as to exactly when she takes pills. Before a meal means it's on an empty stomach. Before bed also means it's on an empty stomach. I try to merge this cocktail as seamlessly with her normal life as I can, so to make it easier on her, I take a weekly pill holder (Monday - Sunday), and fill it with a day's worth of pills. Monday is before breakfast, Tuesday is after breakfast, etc. She currently does not take anything after lunch (Thursday), so I leave a Zofran in there in case she's feeling nauseous. I make each batch the night before. Just my way of keeping things organized so that she doesn't have to bother with things too much. She knows she needs to take a certain batch of pills at a certain time, and that's all she really has to bother with.
I consider this to be a very fluid cocktail. We will likely be adding DCA as our next agent, and will be closely following Seth's experience with Macitentan as well.
If you have any questions, please ask!
Kendall
