I’m not a mutant. The doctor at UCSF called about an hour ago. Not quite sure what happens next. UCSF will take my scans to their neurologists on Thursday, and they’ll say whether or not I’m eligible for gamma-knife. If I am, we do it, and cytotoxic chemo. (I don’t expect to be eligible; I’ve been told I have too many tumors.) If I’m not, he says ipiluminab is the best bet. I can get that through Kaiser or UCSF. I'd rather have him keep treating me, so that's what I think we’ll do. (My MediCal covers it. My doctor at Kaiser looks depressed every time he sees me. This one still has enthusiasm, and knows so much more of the current research.)
If I’d had the mutation, there was a study done that said the drug they’re testing had an effect on 10 out of 10 patients with brain mets. That’s why this is so crushing. Ipi has a low response rate, but there have been documented effects against brain mets. It also can be very harmful—but some say it’s easier than interferon, which I tolerated for a year with a headache and fatigue. It’s not what I want to do, but I’ll probably have to. After that... it's kind of the end of the line.
The doctor was really concerned about response time, and what I have time to try. That tells me all I need to know.
How am I? Resigned. Sad. Not scared at all; way out beyond fear. There’s a little bit of hope seeping sideways, but it’s a rope thrown in darkness, not a solution found.
A held me for an hour while I cried. That’s how I know I still want to live.
Monday, May 23, 2011