What’s it like to be screened for a clinical trial? Well, it’s a lot of tests: brain MRI, CT scan, pulmonary function test, blood work, EKG, examinations, signing consent forms, asking questions, and answering questions. I’ve been in clinical trials before but this is easily the most nervous I’ve been for a trial. It feels like getting into a beauty pageant where you’re trying your best to checkmark all the necessary eligibility rules. I was so in my head for this trial and overthinking everything, "what if they don't like x, y, or z?" "What if I have a bad brain MRI?" I received so many no's this past summer from various TIL trials (Iovance, Lyell, UPMC, Turnstone) that they began to eat away at my optimism. I even wore makeup my first day thinking that would somehow make a difference. It didn’t. Turns out I was overthinking for no reason. Dr. Creelan, the clinical trial coordinator Tanner, the surgeon, all the nurses, literally everyone at Moffitt have been amazing and it feels so damn good to finally get a yes.
So far, everything has gone smoothly. I was even told I got an A+ on my pulmonary test. My first A+ in cancer. I had surgery to remove a sample of my tumor from my lymph node which was sent to the lab at Moffitt where geniuses will work on extracting T-cells, augmenting them, and then replicating them so that there are billions.
A week after my surgery, I had my first infusion of nivolumab, an immunotherapy. I'm not expected to respond to nivolumab by itself but it will 1) prime my immune system for the TIL treatment and 2) prove that I don't respond to immunotherapy by itself. The only side effects I feel so far are some chills here and there, some muscle pain, and fatigue. I stopped taking my targeted therapies a few days before the nivolumab infusion and will not resume taking them. I've been on targeted therapy since 2014 so you can imagine how nerve-wracking this feels. But I trust in this trial and in science and am trying to focus on the fact that I'm finally here.
After a two-week stay, Will picked TT and me up from the airport and surprised me with Elmo in the car. Yes, I’m overly obsessed with my dog. I was so elated to see Will and Momo that it almost felt like a weird dream state.
I literally could not have done this trip without TT. The emotional and physical support made it all possible. I can’t imagine doing any of this alone.
I'll return for a very short visit in December for my second dose of nivolumab and then the month-long stay begins in January. Despite being told that the TIL infusion followed by IL-2 injections will feel like the worst flu I’ve ever had, I’m truly excited for it.
Go Fund Me link: https://www.gofundme.com/f/my-clinical-trial-at-moffitt
Hobbling into surgery.
Post-surgery off-the-shoulder look.
Enjoying the sunshine before the hell that is Colorado snow.
USF campus where Moffitt is located.
Reunited with our best friend.
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