I was diagnosed with Stage IV lung cancer in 2012. In the three years since I was diagnosed I have had four biopsies taken. I have had two bronchoscopies, one lumpectomy, and a VATS. The second bronchoscopy is a tale worth telling. While being treated locally for advancement of my lung cancer along with pneumonia in both lungs a bronchoscopy was performed. I woke up during the procedure which immediately resulted in a high level of anxiety. I attempted to pull out the scope requiring the staff to restrain me as the doctor attempted to remove some tissue for testing. I remember the distinct and discomforting feeling of the scope being removed. The next day, a nurse told me that the procedure was so disturbing that she would never assist in another. The tissue sample was small which also resulted in anxiety because the doctor told me he was afraid they hadn’t gotten enough tissue for the testing they needed to do. After an agonizing period of time, I was informed that the tissue sample was large enough and that I tested positive for translocation known as ALK.
Until recently I didn’t know a blood-based biopsy was possible, and I haven’t had one done yet. In fact, a doctor has never suggested a blood-based biopsy to me. If I’d known about blood-based biopsies I would have requested my doctor try it first. Biopsies are not fun, they come with their own set of risks including taking powerful anesthetics, being operated on, and don’t forget the recovery time. The simple act of having blood drawn is much less invasive, less painful, less stressful and less time consuming than a traditional tissue biopsy. Blood-based biopsies should be the diagnostic test performed first. Anything we can do to eliminate stress and risk for a patient who is facing a possibly terminal disease should be done.
Before knowing that I was positive for the translocation ALK (I initially tested negative for any known mutations) I took 11 cycles of chemotherapy along with a form of radiation called Proton Therapy which lasted 8 weeks. The chemotherapy, for me, was very difficult to endure. It was like having the worst flu you could imagine. I was nauseous and with major stomach cramps due to constipation. The muscle and bone pain was so severe all I could do was curl up in a ball for a couple days after each dose. Chemotherapy destroyed my veins making it more and more difficult to give me an IV to administer the meds. I was in a constant state of fear as I waited for the nurse to find a good vein and when they did it was very painful because of the size of the needle and the depth of which it needed to be inserted. I also had severe abdominal pains for about one year post chemo as well as long term issues with my veins not cooperating, making every blood draw or IV a challenge.
The good news is I have since become a candidate for targeted therapies (or inhibitors) as a result of my ALK translocation. In the beginning of March, 2014, I started taking crizotinib (Xalkori). This treatment comes in a pill form which is taken in the morning and in the evening. The side effects, for me, included feeling nauseous and having mild, infrequent diarrhea. There are no needles plus none of the severe side effects I suffered with chemotherapy. Unfortunately, crizotinib only lasted a year and in late March, 2015 I was put on ceritinib (Zykadia) to manage my aggressive progression of the disease. Ceritinib has more severe side effects impacting the gastrointestinal track than crizotinib. However, these side effects are more manageable than chemotherapy and this drug, for me, was effective at lower doses which has minimized the effects.
The greatest difference between chemotherapy and targeted therapies is while on the targeted therapies I achieved near complete response. With chemotherapy my disease continued to progress even while suffering terrible side effects. My quality of life is so much better while on the targeted therapy than chemo. I can breathe, I can work, and I can enjoy my family. We should all push our doctors for quality of life which I believe is the key when treating a terminally ill patient. Of course, I would take the cure as well.