Immunotherapy Clinical Trial

I met with KK's neuro-oncologist to discuss whether or not KK will participate in the immunotherapy clinical trial using the drug Keytruda by Merck.

PD-L1 is a protein that is expressed by KK's tumor and Keytruda is a PD-L1 inhibitor. I read the information that Dana Farber gave me about the trial and I tried to find information about brain tumor patients that have used immunotherapy, but I wasn't able to find much. Most of the information, including the packet from Dana Farber, focused on lung cancer and melanoma patients for which Keytruda has been approved. I was not convinced that this is for KK.

After sharing with Dr. Manley that I was leaning towards not participating, he asked what he could say to change my mind. I told him, "You can take back what you said about it causing an immune response which causes swelling which could cause seizures or worse." He said he couldn't do that and I told him that I appreciate that he was honest enough to tell me in the first place. He tried to assure me that if the immune response caused too much swelling that they would control it with steroids (which act as an immune suppressor...does anyone else see the irony???). At that point, KK chimed in that she doesn't like steroids and said, "Drugs can help you, kill you, or worse." Dr. Manley also told me he isn't too worried about the swelling since he doesn't believe there is as much tumor load as I think there is...he believes there is more necrosis than tumor.

They are holding a spot for KK on the clinical trial, so they would like a response as soon as possible (by the end of the week if possible). I asked him for information about any GBM patients, adults or children, that have used Keytruda or similar immunotherapy, so I can make a more informed decision. I would appreciate continued prayers for wisdom.