Ted Engel shares his five year kidney cancer journey, and how participating in a clinical trial has left him free of disease.
On the morning of January 10th, 2014 I entered the exam room expecting to get an ultrasound to confirm an issue with my gall bladder. I had been feeling nauseous for a few weeks and my family doctor had ordered this test. I chatted with the tech as she went about her exam and everything seemed normal enough. Suddenly, she left the room and returned with the radiologist. He showed me a large mass on my left kidney and other tumors throughout my liver. He looked at me and said, “You’ve got stage IV cancer.” He immediately ordered a CT scan that confirmed I had a 12.6 cm mass on my left kidney and extensive metastatic disease to my liver. We were suddenly thrust into a battle for survival that had not even crossed my mind only an hour earlier. At that exact moment I realized one eternal truth. The only thing I really have in this world is my faith in Christ. Everything I have can be taken from me except faith. It was faith that sustained our family as we went through the highs and lows of the coming years.
Living in Tennessee, we believed Vanderbilt Medical Center in Nashville was the place we needed to be to seek out an oncologist who specialized in renal cell carcinoma. At this point we had no idea if I could be treated to extend my life a little bit or if we would be told there was little hope. I knew the five year survival rate was 5-8% but I also knew that somehow, some way, I was going to be in that group.
On our first visit at Vanderbilt Medical Center we were provided several options and we decided to seek acceptance into a Phase II clinical trial of an immunotherapy drug now known as Tecentriq (atezolizumab). After liver biopsies confirmed clear Cell RCC I was ready to begin treatment every three weeks. In late March of 2014 the treatments began and I immediately started having side effects. I ran a fever of 103.5, developed neuropathy, Bell’s palsy and a cotton wool spot on my retina. My doctor assured me this could all be a good sign that my immune system was engaging but there was concern at the same time that my body could not handle this treatment. I received my first CT scan three months later and the effects were dramatic as the metastasis and primary tumor shrank considerably. Each subsequent scan showed continued improvement and a year and a half later my liver showed no sign of disease. I continued on the treatment until my primary tumor began to increase in size. The decision was made in November of 2016 that my kidney would need to come out. However, there was one more surprise before that could happen.
In late November of 2016 I began to get very sick with a high fever. I had it for about a week when in the middle of the night I began to hallucinate and my wife Marilyn loaded me up in the car for the three hour drive to Vanderbilt. I was admitted and spent the next six days in the hospital after being diagnosed with meningitis. It was later determined that the meningitis was likely a rare side effect of my treatment drug. Once I recovered sufficiently my surgery was scheduled
On February 15, 2017 I underwent a radical nephrectomy of my left kidney which included removal of my spleen and about a third of my pancreas because of proximity to my primary tumor. I was up and walking that evening and spent six days at Vanderbilt recovering and went home. Recovery was much faster than I anticipated and the pain was really not bad at all. I was able to get by with very little pain medication.
On January 10th of this year I did indeed reach that five year survival mark. I also just celebrated two years with no evidence of disease. It has been a long road but I am so thankful for the love and support I have received from my family and friends and for the world class care I received from Dr. Kim Rathmell and the whole team at Vanderbilt Medical Center. Most of all, I am thankful for the peace that surpasses all human understanding that I received on that cold January day five years ago.
Ted Engel, Dayton, TN