Yeah, the wind is still blowing.
I didn't hear back from Texas today, so I sent a lovely, *long-winded, including all possible questions I can think of today (with a disclaimer that there may be more tomorrow, when she calls back) email to Zarzour today.
*No pun intended. (Ever.)
I totally get that she has a bunch of other patients and the days are long and busy. I get it. I, also, have a job and totally know how time can get away from a person. And, while this is my life to me, it's... not that to her. And that's okay. Because no one else's mortgage has ever been my mortgage, and I've totally forgotten/neglected to return a call in the same business day.
But still. I seriously cannot make a decision about what to do next without knowing if this is an instance of her not having thought of this drug combination as a possible for me, or if she meant did think of it and maybe even mentioned it in passing, but didn't write it down on the card with the other treatment options... or if it's something she didn't suggest, because she hasn't seen it work on liposarcoma.
Now, I will say that I read through the Phase II trial report tonight, and they did include 9 liposarcoma patients in the trial. (12% effective rate) So, maybe she's seen it work. (And one can only hope that the Phase III saw this work at least 13% of the time...)
That said, I'm telling you straight up... you guys, don't read through trial reports. Esp if you have a rare cancer and want to think you have a chance in hell of beating it. That wasn't light or fun reading. At all.
And now, I'm even more itchy for a conversation to either green light this drug or put a full stop to this possibility. I need to get my sick body back on chemo, post haste, and not knowing if this is a viable option is currently holding me back.
Also, I'm officially out of peanut M&M's. Here's hoping I can make it through the night. (Double dose of Ativan, coming right up.)