Interview with ALK-positive NSCLC Survivor, Jodi Garst Parker

Can you tell us a few things about yourself?

I’m Jodi Garst Parker, from Idaho Falls, Idaho. I’ve been married to my husband, Dennis, for 30 years, I am mother to Kristi (29) and Joey (27), grandmother of two, and a registered nurse for 38 years. I’m a non-smoker diagnosed with Stage IV non-small cell lung cancer in February 2013.

Can you give us a history of your diagnosis?

It all started in December 2012. I had what I thought was a bad cold, with a cough and shortness of breath. When my symptoms became worse, a chest x-ray was ordered, which showed a large pleural effusion (fluid around my lung). I had thoracentesis performed to drain the fluid. On February 13, 2013, I was admitted into hospital at Eastern Idaho Regional Medical Center by my primary physician and friend, Dr. Brad Stoddard. Multiple blood tests were done. Pathology results came back from the pleural fluid. Dr. Stoddard sat on my bed, held my hand, and told me I had cancer. I was devastated!

I was officially diagnosed with stage 4 non-small cell lung cancer on February 15, 2013 and was given less than a year to live. My oncologist wanted to start chemo right away, but I decided I would not be having any treatment. Instead, I told my family I was going to do hospice. Then, a phone call from Dr. Stoddard luckily changed my mind. I did a year of intravenous chemo - Cisplatin followed by Alimta.

In March 2014, I had progression and went to Huntsman Cancer Institute in Salt Lake City for a second opinion. There, I was found to have the ALK mutation, which was good news. It meant I was able to go on targeted therapy: an oral drug. I started Crizotinib (Xalkori) in April 2014 and stayed on it for 18 months. In November 2015, I started having some vision changes, difficulty coming up with correct words, and some balance issues. A brain MRI showed a large brain tumor in the left occipital area and a smaller one in the right cerebellum. Emergency surgery was scheduled to remove the larger tumor, followed by three rounds of radiation to the brain. I was also switched over to Ceritinib (Zykadia), which I started in December 2015. 

It is now June 2019. I have been on Ceritinib for 43 months and things remain stable. I have had no progression. They continue to monitor two areas of radiation necrosis in the brain. I continue to have MRIs of the brain every 2 months and CTs of the chest, abdomen, and pelvis every 3 months.

As a longer term survivor, did you make any changes in your life that you think have helped mitigate side-effects, remain healthier? (Diet, holistic healing, etc)

I had a very stressful job at the time of diagnosis. After much thought and consideration, I decided to retire and just focus on myself. My new job was taking care of me and spending time with my family. At the time of diagnosis, I started to use an incentive spirometer to try and re-expand my lung. I visualized my lung re-expanding and my tumor getting smaller. I also started using essential oils and a plant based supplement called Juice Plus. I’m currently on Ceritinib which is very hard on the stomach. I take one Tylenol, one Tylenol PM, and a Compazine to help me sleep and calm my stomach.

What, if anything, has been surprising or unexpected to you about this journey?

Besides having lung cancer? My will to live and inner strength to defeat this demon cancer. It has brought our family closer. Little things don’t bother me. I am proud to be an advocate to others.

Is there anything you wish you had known earlier or when first diagnosed?

I think there needs to be further education regarding signs and symptoms of lung cancer for all healthcare professionals. More support for family members to help them deal with the diagnosis.