Debbie P.

My Name is Debbie.

I have gotten bronchitis every single year from as early as I can remember. In 2013, I was 43 years old, and it was the same thing -- I went to the doctor for bronchitis and took medicine for it, only this time, even after I started to feel better, my cough wouldn’t go away. I kept going back to the doctors and they kept prescribing me more medication: antibiotics, steroids, inhalers. I finally had a chest x-ray, and they saw fluid in my lungs that they thought was pneumonia. Over the next few days, I started to feel worse and worse, and I even got to the point where I couldn’t walk across our house without being completely out of breath. My husband took me to the ER where they did a CT scan. That scan showed a pleural effusion, which they drained and then had the fluid tested. Before the results were back, I was released from the hospital.

On March 4, 2013, I went into my doctors' office thinking I would be getting my work release after being off for a week due to pneumonia. When I walked into the doctors' office and was seen immediately, I knew in my gut something wasn't right. She came in and said, "This is not good news. You have lung cancer." From that point on I knew nothing would ever be the same again. Every emotion you can have, you have in that one moment. Fear, anger, disbelief, my husband, kids and grandkids all ran through my mind. In that one moment, I thought my life was over. I watched my mother die of this when I was young so in my mind, this was the worst news I could have ever gotten.

Over the next few weeks, I was tested, biopsied, poked and prodded. If there was a test to be had, I had it done. All the while, everything going on around me was a blur. It was all happening in the blink of an eye. Finally, the news came in. I had stage 4 lung cancer. The worst news I could have gotten. I knew what this meant in my mind. After all, my mother died of stage 4 lung cancer. I just didn't feel like I should have stage 4 lung cancer. How could I have any lung cancer, let alone stage 4? For the first 2 weeks after my diagnosis, I existed in what I called a state of “poor, poor pitiful me”. I was just trying to process the diagnosis and how little time they said I had left and feeling very sorry for myself and just in disbelief about it all. Then something in my mind just switched gears. I came out of my poor pitiful me thinking and said to myself, "Why not me? Better me than my kids or grandkids." It was time to go into survival mode. I started researching and went for a second opinion. Since the first biopsies didn't show any FDA approved mutations genes, they sent my biopsies out for further testing. They also confirmed the stage 4 diagnoses. After all the testing, second opinions and a lot of research, I had learned I have non-small cell adenocarcinoma lung cancer with a BRAF V600e mutation, which is considered rare in lung cancer consisting of around 3% of all cases.

In 2013, there were no FDA approved treatments for BRAF in lung cancer, but I was told that there would be some soon. While we waited, I started on chemotherapy. I did 6 rounds with carboplatin, Alimta (pemetrexed), and Avastin (bevacizumab), and then 6 more rounds with just the Alimta and Avastin. The Avastin gave me so much trouble; it still does to this day. It caused high blood pressure and achy joints, but the worst side effect of all was the exhaustion. I was exhausted to a degree that I had never experienced before.

I read somewhere that some people take chemo breaks -- which is just an extra week or 2 here and there to help you recover from the effects of the treatment – and I asked my doctor if I could start taking breaks too. At first, we moved my chemo treatments from every 3 weeks to every 4 weeks, and that helped me tremendously to recover and feel more ready to start again each time. Eventually, I decided that I wanted to take an extra couple of weeks off, and overtime that turned into 12 months with no treatment.

After 12 months, we discovered that I had minor progression, and I wanted to start on a BRAF trial at the University of Michigan. Unfortunately, I missed it by 2 weeks. My doctor knew how much I wanted the drugs. He went to the melanoma team who were running a trial with those same drugs – which were already approved for BRAF in melanoma – along with a third, new drug, and he got me into their trial instead. I stayed stable on those drugs for a little over 2 years.

I’ve been through the ringer in terms of treatment side effects, but I’m also lucky to have done so well. I’ve been off treatment as much as I’ve been on it for the last 12 years, and I’ve never had any metastases outside of my chest. For now, chemo works very well for me. Since I’ve never progressed while on chemo, I can always go back to it when I experience progression during a break from treatment. Also, because the BRAF drugs I was on during my clinical trial have since been approved, I could go back on them too if I ever needed them. It gives me a lot of peace knowing that I have these options. I am also diligent with my scans – I get a CT scan every 4 to 6 months, brain scans twice a year, and a PET scan once or twice a year. If I have progression, we’re going to be on top of it quickly.

Knowing I have a mutation that was able to be treated with a targeted therapy for more than 2 years was a godsend. Clinical trials have changed not only how stage 4 lung cancer is being treated, but it is also changing the outcome of how long we are able to live. My mom lived 1.5 years after her diagnoses. I am working on 13 yrs now. I was originally given 12-24 months. That’s what research does for a cancer patient.

They say there is no cure for stage 4. I say there will be some day. Until then stable keeps me here until a cure can be found and I will take that for every day I have. The more research we have, the quicker they can find a cure or at the very least better treatment options. I am proof that anyone can get lung cancer. 2/3rds of all lung cancer is nonsmoking. Your mother, father, child can get this. The fact that lung cancer is the #1 leading cause of cancer deaths is why research needs to continue. Research has come a long way since my mom died in 1997. They still have a long way to go. By the grace of God, my family and friends and the best doctors and nurses I have come to meet, I am hoping to see better treatment options and a cure in my lifetime.