I will be leaving AMAA the end of June. I'm going to stay active in the RUN A MILE effort and hopefully create a documentary on some great stories from across America. I also want to speak publicly on ways we can beat cancer and live a second life. In the January/February issue of Running & FitNews, I shared my story of what it has been like to be diagnosed with melanoma (three times) and the journey I have taken over the past few years. I now share this you in my final writing of "Front of the Pack."
Cancer was not new to me. I first confronted it when I was 26--it was melanoma. In February 1983 I had no idea what the word melanoma meant other than anything ending with "oma" was not good. I managed to survive that encounter, but it led to leaving the Navy and starting a second career. Speed ahead to 2010 and a second melanoma is found. Was I a bit complacent after 26 years? Sure, but I had charged ahead and thought that my surgeon had gotten ahead of things. Well, this time, cancer decided to take a different path, just like going on a run. And once again, like in 1984, I had to find a way to get ahead and defeat the melanoma cancer cells.
It was just prior to the 2014 Boston Marathon when I felt a hard marble-like ball in my left upper shoulder. It was just above the surgical site of my 2010 melanoma excision. My mind raced. Could the cancer have spread to an unknown or unforeseen lymph node? In 2010, I had surgery to excise the area around the site of the melanoma lesion. It was not pretty. In fact later that summer, my then 5-year-old nephew saw me and asked what happened to my arm? I said, "Shark bite." It made him step back in awe.
I knew that surgery was going to be the best step at the time to get ahead. One aspect of that surgery was to inject nuclear dye at the original cancer site and see where it would go inside my lymphatic system. This procedure is called the "sentinel node." In my case, the melanoma cells followed a less traveled path. On that day, I was both anxious and pissed. I had not been vigilant checking all areas around my left shoulder, yet I was told that I was "free and clear." I had no scheduled visits to see the surgical oncologist or an oncologist. That was a medical mistake that angered me that day in 2014.1 kept thinking, "Could we stay ahead?" Oust like running a race, you want to stay ahead of your competitors to win; in cancer's case, the race to win is critical to beating cancer). I went in for surgery and had my entire left armpit lymph nodes removed. All the nodes were negative, good news. The one piece of news that jarred me, though, came from the radiology oncologist. He said that while the other nodes were negative, the primary node that was positive (cancer) had broken through its wall lining. Now I was fighting the odds of staying ahead of the cancer cells' moves.
I was on the way to the Penn Relays in late April 2015, one week after die Boston Marathon weekend. I got a call from the radiology lab where I had gone for a CT. Something was small yet visible on my liver. Now my heart was racing. I called my oncologist and we talked about possibilities. It could be a non-lesion or it could be a metastasized melanoma lesion. It was the latter. My path ahead was not full of roses. I did not hear many great outcomes. This is when I called out for help. My friend Bill and wife Debbie went to work and started researching the advancements that were occurring in fighting advanced melanoma (I did not like using the term "stage" for where I was clinically with cancer). All I was hearing from my then-oncologist was that we could see if I was genetically pre-disposed for a type of mutated gene--the BRAF gene. It turns out that about half of melanoma patients are BRAF positive, meaning they have the mutated BRAF gene. A new immunotherapy drug was available for those patients who were BRAF positive. In my case, I was in the other half-BRAF negative, or what I would later hear as being BRAF WILD.
Quick layman's talk on immunotherapy drugs and their remarkable effect: these drugs can halt a T-cell inhibitor and unleash the ability of your immune system to go beyond the T-l inhibitor and find the melanoma cells and lesions. (Pardon me if I have screwed up the medical terminology and description.)
It is now early May and I feel directionless. Yet my team--let me emphasize the point of "team"--yes, my team had come up with options that sounded futuristic and potentially a miracle cure. No oncologist likes to use that "C" word when it comes to defeating cancer. Bill, however, had uncovered through his research on Pubmed.org that there were highly successful clinical trials involving other immunotherapy drugs. The good news was that these drugs were working on patients who were "BRAF WILD" (remember I talked about a test for a mutated BRAF gene). We all met, Debbie my wife and Bill. Looking over things, it appeared there were options that my oncologist was not offering nor even mentioned to me in our meetings. Time was ripe for a summit meeting. In fact the doctors had their own meeting ahead of meeting with us. It was their "tumor board." They told us that it was their opinion that I should start taking the immunotherapy drug Prembrolimab, although it was not a great match for me. The three of us were a bit perplexed. Fortunately another "new to the team" oncologist agreed to talk to us privately. He had come to this team from Georgetown University Hospital's Lombardi Cancer Clinic. In the discussion, Bill brought up the clinical trial that involved two immunotherapy drugs, Nivolumab and Ipilumumab. This oncologist had just come from the melanoma team at Georgetown. I asked him the one question that few others would answer, "What would you do if in my position?"
Three days later I had an appointment at the Lombardi Clinic at Georgetown University Hospital. The three of us went to the appointment with the clinical trial team. The very first thing I felt was a sense of calm. These people were here to help me. They were upbeat and talked about how the trial would work. Downsides were discussed along with side effects. What remained was the upbeat and positive nature of this team. I know it may sound whoey, but I felt like I belonged. That day the #2 oncologist for the melanoma team told me I was accepted into the trial. In just a week, after some blood tests were performed and a follow-up scan, I could start treatment.
Onto the phase of infusion.... and no chemo! I came up with my own suspense imagery for what the dual immunotherapy drugs were hoped to do. The drugs were the magic potion that allowed the "wild wolves," (aka, the "super cancer fighters") to go bounding throughout my body and seek, encompass, and destroy all melanoma lesions and cells. Sounds like a video game, right? That is what I hoped would happen. Based on the initial results in the first two phases of the clinical trial, the duo of Nivo and Ipilu were out there unlocking the wild wolves in over 60% of cases, and that percentage was rising. Now it was my time. Infusion is done in similar way to chemo. The main difference is immunotherapy is not poison. Also, I did not get a "port." My first infusion was in mid-June. The plan was to have four infusion dates of the dual immunotherapy drugs. The protocol involved coming in every week for blood work. Everything went fine. A week later, all was normal. I was still running and felt good.
It was now August and I had had my third infusion. One thing had happened on my neck. An obvious lymph node that had been enlarged and was considered cancerous had disappeared--"gonzo." I was a couple weeks out from my fourth and final infusion. We had planned a vacation to Cape Cod with a rental home. On the way to the house I started feeling exhausted, a plain case of no energy. On day two of vacation it became worse. I felt like a big sloth just sitting there. We call the on-call oncologist fellow and I was advised to go to the local ER. It turns out that in Falmouth, Massachusetts, they were holding their biggest event of the year, the Falmouth Road Race. The hospital was semi-deserted when I arrived. Most of the ER staff had worked the event and only the basic crew was there. Next thing I know, after having a chest x-ray and CT, I am being admitted. It was a Sunday night and I am miserable. It turns out I had had die first major side effect of the dual immunotherapy drugs. My endocrine system had been overwhelmed. The wild wolves can attack things at-will that are not cancerous. So it went with my pituitary, thyroid, and adrenal glands. Now came the powerful steroids to right my system.
It's September and I had started the dual infusion treatments in early to mid-June. It was time for scans. I also found out that the oncology team felt the fourth dual infusion would be overkill. In addition, the clinical trial director at Bristol-Myers-Squibb removed me from the trial due to my side effects. I wanted "back in." Through this period of misery in the hospital and good results visually of my neck lymph node, my lead oncologist and the team felt that they'd see a stable or shrinking scene on my liver. The CT scans confirmed it: my cancer was stagnated and the lesions appeared to be shrinking or surrounded. (Previous biopsies on similar patients earlier in the trial showed dead tissue surrounded by immune cells and material.) Good--actually, really great--news! It appeared that the immune system had found the cancer lesions and cells and was attacking or had attacked and defeated the cancer. Could this be a cure?
I am now at the two-year mark. This is the time that a couple of melanoma oncologists initially felt was a good marker for survival. Nothing is guaranteed. Yet the most experienced of the oncologists who have worked on defeating melanoma for decades are now smiling. Dr. Atkins, the lead oncologist on melanoma at Lombardi, sent out invitations in March 2016 to come attend a "Melanoma Survivors Luncheon." Anytime a cancer patient receives an invitation that says you are a "survivor," please do attend. Since that day, I keep battling side effects that have been tough yet somewhat tolerable. I am not back to running.... yet. I may never be able to play golf again due to shoulder deterioration caused by the wild wolves. Still, it's a miracle. I am convinced that the success in beating cancers like melanoma with immunotherapy drugs will have success in other cancers. You are seeing transferable use in treatment against lung cancer. I knew it as Nivolumab or Nivo. On TV it is Opdivo.
This story does not define me. It has opened a door to a second chance at life. For all of you who have endured cancer and continue to battle it today, I offer you hope.
I feel blessed to have a VERY supportive wife and family--my wife Debbie and our kids Alex and "creative rocker" Jeffrey.
Thanks to all my AMAA friends and supporters. We all have 26.2 journeys in us.
ARA/AMAA Executive Director
Caption: The PD-1/PD-L1 Blockade
|Printer friendly Cite/link Email Feedback|
|Title Annotation:||FRONT OF THE PACK; treating cancer|
|Date:||Mar 22, 2017|
|Previous Article:||Mark Lavallee, MD, CSCS, FACSM: overcoming early obstacles and paying it forward.|
|Next Article:||Message from the president.|