It’s been one heck of a month. In some ways, there’s an awful lot to tell. In other ways, there’s really not much at all. The blow-by-blow description is, frankly, far too big to get into in a blog post. So I’ll give the short version: I was accepted into a clinical trial in Philadelphia PA, at Thomas Jefferson University. I was randomized to a tyrosine kinase inhibitor named Sutent. (The other drug I could’ve received was valproic acid, not a placebo. You know you’re in the big leagues when even research doctors won’t use placebos on human beings. The stakes are just a wee bit too high.)
I’ll take Sutent at half dose daily for the next six months. If I reach toxicity–i.e., if I exhibit such bad side effects that the docs in Philly get concerned–I’ll be allowed a break of one to four weeks, depending. But at no time will I be allowed to make that break up; I’m done in six months whether I’ve taken six months of the drug or not. I’ll also be done if at any point I metastasize.
My commitment is for ten visits to Philly over the course of the next two years–the docs at TJU effectively become my oncology team for that time period, and all the bloodwork and imaging required for the study is considered standard-of-care for OM2. (Because I’m typing that bloody name so often, I’m abbreviating “ocular melanoma Castle-Type-2” to “OM2”.) After the first two years, assuming I don’t metastasize, I will revert to local care (if I so choose–which, instead of traveling to Philly, you betcha I’ll choose). At that point, my local oncology team will receive semiannual phone calls from the TJU docs to check on my progress for upwards of ten years–but only if the study runs that long. And if I remain free and clear for all that time, well, as one of the TJU folks put it, “We’ll totally take credit for it, but we won’t necessarily know whether or not we caused it–unless a lot of other people in the study remain clear, too. In which case, we’ll gladly take credit for it.” 🙂
I’ve already started taking my meds. I know I’m only five days in, and some meds can take months to build up a proper dosage amount in the human body, but I have nothing at all to report for side effects thus far…and for that, oh you betcha, I’m grateful. I’ve never been so scared to pop a pill. The list of side effects for Sutent at full dosage is frankly indescribable.
So that’s the shortest version of the events of the month since I last posted.
The longer version is (perversely) too long to get into here. Suffice to say that, in order for me to get into this trial, BCBS had to okay bloodwork and imaging scrips from my new docs–which BCBS did, despite telling me word for word that they wouldn’t cover clinical trials in any way. So why the change? Frankly, I have no goddamned idea. BCBS still won’t return my messages. I have no idea if they just needed to hear the request from medical professionals instead of from a subscriber–or if the (heretofore useless) case manager at BCBS has actually been advocating for me behind the scenes this whole time, and BCBS had finally gotten it through their thick heads that I have no other options for treatment. I may yet end up with a nasty financial surprise; I’ll report back as things continue to move forward (or not).
Countless other things had to fall into place for this trial to go forward, too. Acres of research and tough reading had to be done, and dozens of questions written, asked, and answered (thanks, Sarah! Thanks, Mom! Thanks, Jessica! If any of you readers ever has to deal with a research nurse, let me tell you, you want Jessica at TJU on your team!). Family had to cover my daughter’s daycare; train tickets and hotel had to be researched and bought; countless phone calls had to be made; seven discs’ worth of imaging of various parts of my body had to be made and copied and Fedexed to the docs in Philly. In short, it’s taken the combined effort of nine people (that I know of!) over the course of three months to get my little kiester into a chair at the Sidney Kimmel Cancer Center in Philadelphia on an unseasonably warm February day. And we had multiple hard deadlines to meet to make it happen: first appointment within 120 days of date of plaque placement, MRI/CT/echocardiogram/bloodwork all accomplished within 28 previous days of first appointment, all juggled against a schedule that BCBS might or might not pay for that they won’t even let me see. Sigh. And grrr.
And this is counting nothing of the work that was done to get me considered for a different trial, offered in New York by Columbia University (thanks, Rosemarie!).
So my gratitude list has grown. For my daughter, whose laughter and wonderful energy keeps reminding me to live. For my husband, whose steady devotion keeps me calm. For my sister, who is wrangling the paperwork demon with me. For my mom and dad, who do the tremendous work of driving 650 miles one way just to make sure my daughter gets safely off her bus while I’m stuck somewhere in some doctor’s office. And for the nurses and doctors whose job it is to deal with folks like me. I can’t imagine how hard that must be–to keep hoping, only to have some hopes dashed and others answered. I know how hard this has been for me and my family thus far, and I’m only one patient. How hard it must be to witness that all day, every day.
Yes, I titled this post “Into the Pipeline.” I have no illusions about what being in the medical “cascade of intervention” is going to feel like–hence my calling it “the pipeline.” I have no doubt that this will often suck. I have no doubt that there will be times I’ll feel like a lab rat. But I’m not the only one in this pipeline, and I’m sharing this tight space with some of the finest people I’ve ever known.
So thank you, ladies and gentlemen. Godspeed to all of us.