I’m in my Room With a View at the NIH. I’m eating peanut M and M’s and watching “Rudolph the Red-nosed Reindeer,” with 10 minutes of commercials, even though I own the DVD. I have, so far, come through the first component of my new CRLX101 trial unscathed. I feel positively unscathed!V As promised, it’s been an all-day affair. I checked in to 3NW (the hospital part of the NIH) at 7:15, but didn’t start the infusion until about 2:30. It’s a FIVE HOUR infusion: 2 hours of saline, some pre-meds, 1 hour of the CRLX, and two more hours of saline. My nurse, Linda, says that doctors have had high hopes that the combination of CRLX and Olaparib is effective, but it’s also super toxic. So in this trial, there’s lots of fluid around the infusion, and I won’t start the oral drugs until Thursday… and I’ll stop them two days before the next infusion in 2 weeks.
The first round of this trial requires a four-day inpatient stay at the NIH. Besides the infusion taking so long, nurses are drawing blood (and hair follicles!) every few hours so I have to stay…. at least for tonight. My trial team knows I’m not a fan of staying in hospitals (there are sick people there!), and is generous with passes to get out of room free. There was a delay in getting back a couple of my lab results (even though they drew the blood on Friday), which pushed my treatment back a few hours today. That meant I was out on my first pass before I was in my room for an hour last night. My plans are to get passes out tomorrow day (yoga) and for the next couple of nights (CAPS CAPS CAPS).
For those of you keeping score, this is my fourth trial for this rare, incurable cancer since my initial diagnosis in 2013. I am finding myself farther and farther out into the Final Frontier. It’s like someone said to me last week, I am a science experiment. Odd thing to be, for someone who last studied science (and math) in high school. Now I sprinkle “DNA pathway inhibitor” and “nanoparticle drug conjugate” into conversations like I used to do with “what will there be to eat?” (This hasn’t dropped out of conversational rotation.) In any case, I am now leagues away from the simple “What trial are you on?” “Sutent.” What’s most amazing about my trials is how they keep presenting themselves when I am looking for the next new thing. At least a couple of times, the combinations or applications of the drugs didn’t even exist during the trial I was on before. It’s geometric, which i appreciate, even though I haven’t taken math since 10th grade. Selfishly, but for all of us as well, I am vigilant about making sure the NIH budget isn’t cut. I kind of need this place and so do a lot of other people that I see every time I come here.
But for now, the Benadryl is overpowering the Dexamethasone. I can’t keep my eyes open. Rudolph helped Santa find his way to the little girls and boys again this year. Some things, you can count on. Let’s hope this trial becomes that, too. #defy.