Written by Kyla Burridge – Head for the Cure Ambassador and Survivor
November 7th, 2018
A day that will forever be ingrained in my memory and a part of my life. I remember the day like it was yesterday. I was waiting anxiously with my parents to get the results of my biopsy back. I remember it instinctively because my doctor was taking longer than normal to see us (shout out to Dr. Lindhorst at Hollings Cancer Center!). Finally, after what felt like hours, my doctor entered into our room, but he has someone with him this time. That day I was diagnosed with brain cancer. The rest of the conversation was a blur. I somewhat remember him telling us what grade it was, 3 but edging to a 4, and because of the location of this tumor (my brainstem), I was not eligible for surgery to remove it. I couldn’t do anything except cry. How could this happen to me? What did I do to make myself have this tumor? And in my brain, no less. Eventually, my doctor introduced us to the man who entered the room with him, and who seemed to be the reason they were late, Bo Keller. He would become my clinical trial advisor.
Bo introduced himself to me and my family and explained his role at the Cancer Center, specifically within the neuro-oncology department. The reason for them being extra late was because once they determined exactly what this mass was in my brain, they instantly began looking for clinical trials for me to participate in. Talk about going above and beyond for your patients.
Learning About My Clinical Trial
Bo, along with the help of Dr. Lindhorst, began explaining the clinical trial that they had found for me. It really was only for patients who have a glioblastoma (GBM), the worst and most severe type of brain cancer, but because of the location and severity of my tumor, they felt that I would be an excellent candidate for this specific trial. I tried my best to understand the medical jargon, but it was difficult.
The trial used a medication by the name of trans sodium crocetinate (TSC). Tumors don’t like oxygen, and TSC increases the diffusion rate of oxygen into my tumor. Along with the help of chemotherapy and radiation, TSC would play somewhat of a catalyst role in attempting to kill any cancer cells it could in my brain. Now, that sounds really awesome, right?! Well, I was a little skeptical because I know how clinical trials go. You have a placebo group, which doesn’t receive the medicine, and a test group, which does receive the medicine. I wanted to make sure that I was in the test group and received any medication I could to get this thing out of me.
Well, I slowly learned the real reason why it took Bo and Dr. Lindhorst so long to meet with us. The TSC trial was in its first stages, which meant there would be no placebo group, and all of the participants would be receiving the medicine! I was stunned and at a loss for words. I also would be the only participant to be receiving TSC in the entire state of South Carolina and one out of eight participants in the entire United States! Of course, this intrigued me and made me want to start treatment right away. But my mom, who’s a nurse, said we needed to do some research on TSC ourselves before we made any decisions. So we took our pamphlet of information from Bo and went home to do our research.
Do Your Research
My mom found some amazing information about TSC, and all of the studies had positive results with every outcome. Once my parents and I talked over the information, it reassured me to go through with the clinical trial. At my next appointment we told Bo that I would be going through with the trial. He explained that I would receive the TSC intravenously (through an IV), and would receive it three days out of the week that I was also receiving my chemotherapy. At first, it would only be a very small dosage, but would eventually be increased. I signed the consent forms, but was immediately reassured that at any point during the trial if I wanted to stop treatment I could. I was determined to go through with it so I could get this tumor out of me, and to potentially help future brain cancer patients.
We went to the infusion suite for the nurses to check my veins. Apparently, even though I was 22 at the time, I had pretty weak veins. They suggested putting a port in me because the days I would be receiving the medication would be Monday, Wednesday, and Friday. The port would have to be surgically put in me and would essentially delay my treatment start date. To say I wasn’t thrilled was an understatement. I felt like I wasn’t getting that much medication to need a port, and I wanted to start treatment as soon as I possibly could, but this was getting in my way. I thought about not going through with the trial for this specific reason. But let me tell you, God works in mysterious ways.
Later that day, Bo texted me and told me that the study said as long as I received the medication three days out of the week – it didn’t matter what specific days I received it. Meaning I could get it consecutively for those three days, aka, no port needed! I was so relieved. The plan going forward would be that every Monday, Tuesday, and Wednesday during the weeks that I did chemotherapy. I would receive the TSC through an IV that I would keep in my arm for the three days I received it and before I would receive my radiation. We did this for roughly six months.
Luckily, I didn’t have too many side effects from my triple threat treatment. The biggest was fatigue – no nausea or anything else (thank the Lord!). Towards the middle of my TSC treatment, I had to spend a day in a hospital room getting different dosages to determine which would be the sweet spot to see the most results. That was a long and grueling day. Luckily, I had both of my parents there to keep me company. That was also around the time Bohemian Rhapsody came out, so we were distracted by the fierceness that is Freddie Mercury. Eventually, it was found that a bigger dosage could have potentially better results, so for the last few months I received a bigger dose of the TSC.
With this specific trial being only in the first stages and only having 8 participants in it, I wasn’t informed about anybody else’s results or how they have fared from the treatment. The only information that I could be told was if there were any serious side effects that came about. Since I have stopped TSC, I’m told that the trial sponsors are gathering all of the information and data from myself and the other participants and the study will eventually open up to even more patients.
Clinical Trials Matter
Did you know that more than 700,000 people in the United States are living with brain tumors? However, there are only four drug treatments and one device treatment approved by the FDA to treat the more than 120 types of brain tumors. Clinical trials are necessary to fund. These trials could potentially save the lives of so many people living with these tumors where chemotherapy and radiation has failed. When I was approached to be a part of this clinical trial, I may have been weary at first, but now I am so excited to see the results, not only in myself, but to see the results in others as well. Even though this journey was unexpected in my life, I have been presented with so many amazing opportunities that I could not pass up. If anyone is ever in a situation where they are presented to participate in a clinical trial – DO IT. It could save your life and you could help save others. Clinical trials save lives, and it surely has saved mine.