By Micky MacKinnon
In May of 2015 at age 44 I was diagnosed with stage IV non-small cell lung cancer (NSCLC). I had a very good oncologist and was reassured by several of my existing doctors, so I felt confident. I was clueless in what all I was starting felt strongly that I could beat this.
First things were just a rush of blood work, scans and procedures, including having my port installed. My oncologist wanted to put me in a clinical trial, but I had to get my tumor tested for certain mutations. I had no idea what he was talking about at the time, but went for it anyway. Unfortunately, I didn’t have the mutations needed to start the trial.
So, we moved forward with standard chemotherapy. After just three doses I stopped due to an allergic reaction. I was on a second set of chemo meds for four months and no success. At this point, I went on a short round of radiation to relieve some pain.
Next up was immunotherapy. I felt like it had to work. However, after four months of treatments, I was still in pain and my tumor size increased. Remember how I mentioned I had a very good oncologist? Well, he wasn’t giving up and neither was I! He ordered another round of molecular testing on my tumor hoping I have a certain mutation.
As I was in the middle of my second round of radiation, my list of mutations come back. My oncologist wasn’t aware of any medications on the market for my mutations. We were able to find a clinical trial in Atlanta for my STK11 mutation. He knew nothing about it at the time so we agree to circle back in a few weeks.
After this appointment I went up and updated Facebook to let my family and friends know what was going on with the mutation and the possible trial in Atlanta. Within a couple of days my friends had taken the information and reached out to friends of cancer researchers, nurses, you name it and found out more information about my mutation and the trial.
My mutation is part of the reason immunotherapy did not work for me. I learned that I have a slow but determined cancer. It became clear that the best option for me was that clinical trial in Atlanta.
For the last two months I have been going to Emory in Atlanta for my clinical trial. This new medicine is just a few years old and targets the STK11 mutation. I feel more confident that this is a better path because it is focused on certain areas of my cancer.
My first set of scans showed that the tumors have stabilized and some have even decreased in size! This is only the second time I have had stability since I was diagnosed, so things are going in the right direction!
I know that I have to be more knowledgeable about my cancer. I now do more research and think what my next move will be because this will be a long fight.
I also understand there is always research being done for better medicines and cures so I want to help where I can too.
Through our new program, LungMATCH, we can help you and your loved ones find and understand the personalized treatment options available. Click here to learn more!