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.
The majority of people have successfully alienated themselves from change; they tediously arrange their lives into a familiar pattern, they give themselves to normalcy, they are proud if they are able to follow in auspicious footsteps set before them, they take pride in always coloring inside the lines and they feel secure if they belong to a batch of others who are like them. Now, if familiar patterns bore you, if normalcy passes before you unnoticed, if you want to create your own footsteps in the earth and leave your own handprints on the skies, if you are the one who doesn’t mind the lines in the coloring book as much as others do, and perchance you do not cling to a flock for you to identify with, then you must be ready for adversity. If you are something extraordinary, you are going to always shock others and while they go about existing in their mundaneness which they call success, you’re going to be flying around crazy in their skies and that scares them. People are afraid of change, afraid of being different, afraid of doing things and thinking things that aren’t a part of their checkerboard game of a life. They only know the pieces and the moves in their games, and that’s it. You’re always going to find them in the place that you think you’re going to find them in, and every time they think about you, you’re going to give them a heart attack.
… C. Joybell C.
Such good news! Round 1 prayers worked:-)
Keep fighting the good fight!
<3 Lisa & Dwayne Jenkins
I’m so happy for you. NCI is a great institution and the people are very very dedicated to what they are doing.
I’m truly amazed at the people that work in cancer. You would think it wears on them to the point they want to get out. This is rare most Oncology nurses stay their entire careers. A lot of them have been working with cancer patients for 30 years. I started in cancer 15 years ago and can’t think of going back to any other side of medicine. I’m extremely impressed by the PD-L1 trials and those therapies. They talked about these products for years and I believe this is the answer based on how cancer works from a molecular standpoint.
Please call even if you just want to talk about trails.
I hope you have many more days of good news. Thank you for sharing your journey.
Great news, Wendy! See you in ATX soon!
Wendy, this is great news! NCI is an incredible facility. I go for my PET scan on Monday. Just had some labs done along with a thyroid scan. I call this time my end of the year wrap up. I see all my doctors – from GYN to Oncologist to Cardiologist, etc. Such fun! As we celebrate Pink October, just know you’ll be in my thoughts. Take care.
Keeping you in my prayers. Stay strong, you are a true warrior and such an inspiration to all! So glad to hear you are in.
Wonderful news- stay strong!
Wonderful! This is terrific news, you have an army of admirers behind you! Stay strong and keep pushing forward.
Wendy so happy for you and wish you the best of luck. Always pulling for you! See you soon!
You run girl!! That’s what I would do too! Run hard!
Wendy the entire Tour of Hope team will be pulling for you every step of the way!
Good news, Wendy. I am so happy for you. Like you, I have thymic carcinoma and am searching for answers. I am meeting with a thymic carcinoma researcher in Indianapolis next week and pray he has some answers like you’ve received. Wishing you the best.
I’ve never seen anyone put a better face on cancer survivors than you have, even now that you’ve had the “wake-up call” as you put it. I know a bit of you’re story from working with Al, Mel and Jen (all of whom made the work implications of my own cancer treatment trouble free; I can never thank them enough for their generosity and compassion). Only just got around to reading your post and viewing the video, because I was awaiting an ultrasound follow up after one of my PET/CT scans had a tiny dark spot that needed a second look. Like you, my mind went to that place that’s innate in all of us, the place that makes a child utter the phrase, “but that’s just not fair.” It turned out to be nothing this time, but as you know, and my dad whose on round three of chemo knows, cancer treatment is not like a car wash; you don’t go in one end and come out clean. Constant vigilance and living right…and well are required. You have the right approach in my humble opinion, and I wish you the best in keeping the cancer and all the doubts that accompany the disease away. You’re a brave person who has helped show many patients how do live life well even with this burden. On the days when you’re not feeling so strong and the why-me’s begin to creep in, remember that some of us know what it’s like. I’m not glad you’re in this boat, but all survivors are glad someone like you is here to inspire the rest. If there’s anything I can ever do, let me know.