Three years ago, I heard one of the many things a cancer patient does not want to hear, “You have new growths. You’ve relapsed.”
It was the first time I cried because of my cancer diagnosis, reality finally hit, and I was devastated. Relapsing with pediatric and wildtype (SDHA) gastrointestinal stromal tumor (GIST) was hard enough by itself as it is a rare disease.
When living with a rare disease, sometimes treatment options can be limited. With the specific type of GIST that I am diagnosed with, treatments like chemotherapy and radiation therapy have no effects. They don’t work. And other medicines specifically for GIST, like Sutent or Gleevec, do not have an effect either. This leaves GIST patients with the SDHA mutation with limited options for treatments, such as surgery or a clinical trial.
I have had both. I had 2 major surgeries in June 2013, and went on a clinical trial from 2018 to 2019.
Going through surgery was a lot easier than I anticipated. The first surgery was an emergency surgery. I Found myself in the ER with extreme abdominal pain. It was a tumor that had burst. The second surgery was planned for a week later, which resulted in a 4.5-inch scar down the middle of my abdomen. This surgery was to confirm that there were clear margins from the burst tumor.
I was considered “no evidence of disease” (NED) for just under 5 years after the second surgery but I relapsed in May 2018. I went in for consultations with 2 surgeons, and they both turned me away, claiming I would not be able to keep up with removing the tumors and new tumors would keep growing until I would eventually need to get my entire stomach removed. I was considered “too young” to be without a stomach.
My oncologist decided to reach out to the GIST specialists at the National Institutes of Health (NIH), and they had a phase two clinical trial open. It took some hoops to get through and some communication issues, so it took about five months to get on this clinical trial. By the end of October, I was finally flying nearly 5,000 miles away from the little rock I called home to the east coast.
I was on this clinical trial for 329 days and flew back and forth from home to treatments for almost 12 months straight. I had over 60 injections, over 30 lab draws, 7 MRIs, 5 CAT scans, 4 EKGs, 1 pet scan, and so many more things done. I also got pneumonia twice, septic once, and somehow contracted H1N1 during travel and several other viruses from who knows where.
The Common Thread: Poor Communication
Communication issues have been a common theme throughout my rare disease journey. There were communication issues with the NIH, specifically a research nurse. I hadn’t heard from them in months, then suddenly, my flights and hotels were booked to start treatment immediately. The lack of communication created unnecessary anxiety of wondering what was to come next, if I had already run out of options or if I just wasn’t a right fit for the clinical trial.
In this clinical trial, I was required to get an injection of Guadecitabine in my stomach every day for 5 days straight, every month. When getting these injections, I needed to ice the fatty parts of my stomach, so it was numbed, and the injections would sometimes burn and bruise; other times, I didn’t feel a thing. After a few months on the clinical trial, I developed a rash, almost like an allergic reaction to the medications. Throughout the trial, I also developed intermittent arrhythmias.
Stopping the clinical trial was a mutual decision between me and my medical team. I decided I wanted a better quality of life than the clinical trial could provide. I was flying back and forth from home to Maryland so often that I essentially did not have a life anymore. By the time I got home from treatments, I was exhausted, sick, and jet-lagged. And by the time I recovered from all of this, I was back on a plane to treatments.
Going through this trial had a significant impact on my life. And even though there were not any results from it, I don’t regret doing it. I had fantastic treatment nurses, and the rest of my medical staff took excellent care of me and took every symptom seriously, no matter how big or small it was. And being on this clinical trial let me help the doctors help other people.
If I had to do it all over again, I would.