So as not to bury the lead, the headline is that I’m in. After two days of an ECHO test, an EKG, full-body CT scan, PET scan, a urine test, and blood tests that required 13 vials of blood, I was accepted for the clinical trials that I want at the National Cancer Center (NCI). Today, I met with the doctor who’s running the PD-L1 trial and the Sutent trial for a long time. A LONG time. I met with the whole team for more than an hour discussing options (so surprised I have some!) and procedure and timing. For someone with recurrence of a really rare cancer, it was a day of exceptionally good news.
First, let me say that my two days at the NCI were great. Every single person we came into contact with was nice and helpful. Every appointment was right on time. It’s not really what I expected, with the NCI being a government facility, but I was comfortable there, even though it was a fairly stressful time. I could tell I was in a place full of really smart and compassionate people who have devoted their lives to curing cancer.
Today started with a consult for a doctor running a second set of clinical trials. These would involve surgery, if feasible, to remove all evidence of disease followed by a vaccine to keep the cancer from returning. It’s a Phase l trial. I made the appointment as a back-up in case I didn’t get in Dr. Rajan’s trials, but it may end up being a reasonable option.
I learned more about the specific trials that Dr. Rajan is conducting and got information that has moved me off my determination to get into the PD-L1 trial. I found out that it is a Phase l trial, which means it’s in the beginning stages of the study. I also found out that there are, indeed, side effects that can put you in the hospital. Meanwhile, the Sutent trial has had terrific success with Thymic Carcinoma patients specifically. And its side effects don’t sound like they’d be as gnarly as I imagined. I can choose either, and more good news: I don’t have to choose right away. My tumors are barely big enough for me to even qualify for the trials, which means they’re not growing wildly. And I still have no symptoms. The recommendation from both docs is to wait up to 8 weeks to get screened again. If there’s no tumor growth, we could push the trial off again. Dr Rajan says I could conceivably be taking Sutent or PD-L1 for the rest of my life, so as long as I’m feeling good and the tumors are small, there’s no need to start the trial immediately. The catch would be if I would be too freaked out, knowing that I’m not doing anything about the cancer… but I think I can live strong with that, knowing that I have the most amazing safety net, should I fall.
Tomorrow, I go to Georgetown U’s Lombardi Cancer Center to get more input from one of the two Thymic Cancer experts in the country, Dr. Giuseppe Giaccone. You might remember him from last fall: I used one of his papers as proof that I didn’t need systemic chemo because there was no evidence it worked. I am looking forward to seeing and quizzing him. Then, we’re going for a run on the Cabin John Parkway. My beautiful fall plans are coming back into focus and I have some racing to do.