My father (age 61) was just recently diagnosed with GBM grade 4. He had a small tumor in his left temporal lobe and had an awake surgery at UCSF two weeks ago where they were able to remove all of it. He is very healthy and fit and has been recovering so well from the surgery.
His test results came back and he is unmethylated, IDH-1 negative.
I have read the Ben Williams book, watched the documentary, read everything I can find on the internet. I realize that being unmethylated means the chemo won't work well, if at all. Is there anyone that can help me to create a cocktail treatment plan for him? Is it still worth doing the chemo even when you are unmethylated?
Also, the only clinical trial available to him at UCSF right now is the nivolumab one. Not sure if that is the right way to go at the point?
Any advice would be greatly appreciated. Thanks so much!
I know that at UCLA they've recommended standard of care (which includes Temodar for a grade 2 tumor) to buy time.
ReplyDeleteMy tumor is also grade 2 unmethylated. When I told the doctor that means chemo won't work, he said "not necessarily".
Jenna, Though they call it "gross total" or "near gross total" meaning they got all they could find, they never get it all. I'll leave it for others to comment on the nivolumab trial but I wanted you to know we (Chance Gilford, my 39-year old son - the patient, and I, the mom), are at UCSF also. Dr. Michael McDermott was the surgeon and Dr. Jennie Taylor is the neuro-oncologist. Chance's tumor is methylated but Temador didn't seem to work. What we learn quickly here is that there are no hard and fast rules. What works for your Dad may or may not work for someone else. You've found the right site and you'll find lots of support here. JudeGilford@gmail.com.
ReplyDeleteHi Jenna,
ReplyDeleteIf you look under cocktails - GBM written in grey on the right hand side of this screen you will where many people have posted their cocktails. Look for Rich's cocktail as he was idh1 negative and unmethylated and I think he's around a 7 to 8 year GBM4 survivor. My husband is also unmethylated and idh1 negative and we follow a cocktail similar to Rich's. My husband was dx March 2014 and is doing well, no reoccurance so far. Good luck
Thanks everyone. Rich's cocktail is very helpful.
ReplyDelete