My Experiences with Clinical Trials
I have participated in two clinical trials within the last six years. As a lung cancer patient, I felt very strongly about my participation in these trials. With that said I took some things into consideration before I started both.
My first clinical trial experience
In 2015, I began the beginning steps to participate in my first clinical trial. I am from the Chicagoland area and the trial I was eyeing was in Boston. How I found the trial is a whole other blog post! In December 2015 we were vacationing in Texas, visiting family. We flew directly from Texas to Boston to see the oncologist. That first meeting did not go as planned. We talked about some lung cancer-related things and barely discussed the trial. I left feeling defeated. It would take us one more month of back-and-forth communications and another trip to Boston to figure out that I was indeed a great candidate for the trial.
Managing the logistics of clinical trials
Logistics was a big factor in my participation in this trial. Thankfully, the trial sponsor reimbursed me for travel, food, lodging, and taxi fees. We discussed this part of the trial with the trial coordinator and while I did have some difficulties getting reimbursed, I eventually received a check. It is always best to ask what sort of reimbursements or what things are paid for by the trial.
To begin participating in a trial you are asked a lot of questions to get you qualified and fill out many forms. I also had a base CT scan and brain MRI. This trial was pills so I was able to take the medications at home. I took a detailed diary of when I took the pills and if there was food taken as well. If I had any complications at home, I was to contact them immediately.
Over the next year, I traveled to Boston roughly 14 times. I stayed in the trial until I had the progression of the disease. I developed a nodule on my lower left lung. We did try to surgically remove the nodule, but it did not stop the spread and I was officially removed from the trial. I would start a new combination therapy of Cabozantanib and Tarceva.
My second clinical trial experience
The second trial that I participated in was much easier to make to the decision to participate. After I was dropped from the Boston trial I came back to Chicago and seen my original oncologist. She takes great care of me and I am thankful for her. She had a new trial for EGFR+ Met amplification patients called ABBV-399. I would only have to drive into the city once every 3 weeks and the infusion was very short. Along with the infusion drug, I also took Tarceva at home.
I stayed in this trial for about one year and the only reason I dropped out of it is that I developed severe neuropathy. The good news from this trial is that it deemed me no evidence of disease and that is where I am today. My oncologist has told me that if I need to I can start this therapy again.
Participation in clinical trials is crucial to the development of new cancer-fighting drugs. I am thankful that my experience with both trials was a good one and I understand that not everyone has this outcome.
Do you find that staying zen through your lung cancer diagnosis has helped you in your journey?