Rarely is it good news when that thought runs through your head at your cancer doctor’s office. And this was not one of those occasional occurrences. I went to the NCI for my 3-week visit, and it will be my last one, at least for the foreseeable future. The Sutent isn’t working anymore. The tumors are growing again.
Dr Rajan says this could be because of my latest dose reduction. It could be that 25 mg isn’t enough to beat the cancer cells into submission. It could be that the cancer cells have figured out a way to laugh in the face of the Sutent. It’s irrelevant, as I know from asking when I got this last dose reduction, that once my dose is cut in this trial, I can’t go bigger. And that dramatic tumor shrinkage I got when I started the trial, well that worked against me in the end. It meant that it was easier for me to hit the 20 percent regrowth mark, which is what banished me from Sutentlandia.
Remember when I was hesitant to celebrate good results from the Sutent, a few months ago? Yeah.
However, because I am hopeful, but not expectant, I have a Plan B. Because they are awesome, Dr Rajan had already composed an email to Dr Giaccone, who’s running a PD-1 trial at Georgetown when he told me about the tumor growth. He hit “send” when I gave the ok. Dr Giaccone was already moving his schedule around to see me today when he got my email an hour later.
Although they won’t say it, this trial is my best option; better then trying to get a higher dose of Sutent off-label ( although I have started working on that, too. Remember, I hope, I don’t expect). Plus, Dr Giaccone’s trial has room for me right now. In fact, Merck, the trial’s sponsor, is so encouraged by what’s happened with results so far that it’ s more than doubled the size of the trial and added a bit of travel money for participants. Yup, I’m going to lose my government-paid travel, and sadly, my little per diem, which is only $24 a day, but which I like very much and will miss. (In the big picture, isn’t it funny that that was one of my first thoughts when I was told I was out? I looked forward to the cashier counting out twenties from a manilla envelope that someone had written $13,476 on. Call me crazy.)
I’d be all-in by now, except for guess what. My neutrophils. Now, I need what looks like a sky high 1500 for this trial. Footnote here: i would have had my Sutent held again this week. 960. Ugh. Both docs believe that my counts will come up with no Sutent in the mix, but of course, no one can say when that might happen. Dr Giaccone is confident enough to tell me to get a port put in soon. I said I didn’t want a surgery if there was a chance I wouldn’t make the trial, but he said go for it. So I’m going for it on Tuesday ( thank you, my lovely Terry at Huntsman).
It’s a lot. But not so much. I have been ready for this to happen, so I have a game plan, and I can’t stress enough how comforting and critical that is. I know I am blessed with outrageous connections to people who want to help me save my life, and I am going to squeeze every ounce of help out of them. You know what else I’m going to do? Keep working on my next Plan B ( does that make it Plan C?), because expecting that this will work is a double dog dare to the universe.And I’m going to see if there are other options that my big brained team might not have thought of (doubtful, but possible). I’ll do some of that at OSU and the James Center when I’m at Pelotonia next week. I will also double down on the adventure meter, if that is even possible. Here is my latest “Just say yes.” My gorgeous nieces and my sister-in-law went to the Adventure Park (read: Sometimes terrifying and sometimes exhilarating ropes course) where my nephew Chris works, pretty much straight from my NCI visit. I wasn’t sure I was up for it. I wanted to make phone calls and send texts and emails. But here was an adventure (it’s called Adventure Park for God’s sake) right in front of (ok, above) me. I’d never done it before… None of us had, besides Chris, who I never realized is part spider monkey. We spent nearly 3 hours there, balancing, walking, and laughing our heads off 40 feet above ground. I couldn’t have dreamed of a better way to say, “Fuck you, cancer.” And the pictures are pretty good, too, except for the ones where I was too hypoxic from holding my breath to focus.
Onwar. Forward. Never look back.