In 2017, Stephen was diagnosed with stage 4 esophageal cancer (cancer of the esophagus) and his doctors gave him a less than 5% chance of living for 5 years.
After reading Radical Remission and implementing all 9 healing factors, along with using the latest that conventional medicine has to offer (e.g., personalized, genomic immunotherapy!), Stephen has been stable for two years, and has started a company to help other cancer patients get access to the same immunotherapy he is currently using. Here is his story in his own words.
“On March 31st of 2017, following several months of nagging pain in my upper abdomen, I was diagnosed with metastasized (stage 4) adenocarcinoma of the esophagus. There is no known cure for this disease.
For me and my wife, receiving such news was completely devastating. Trying to wrap our minds around the implications was both heart and gut-wrenching – and completely disruptive. We had been deeply enjoying active and intensely involved, meaningful lives – only to have our joyful existence suddenly shattered by this horrible news. My diagnosis meant that all of these involvements would have to come to a sudden end. Our immediate future also included cherished family plans, including a long-anticipated trip to Spain for a family wedding.
All of these involvements and plans were now thrown into doubt and turmoil. Suddenly and without warning, we had to completely rethink and reorder our lives while simultaneously trying to process emotionally devastating news, deal with my rapidly deteriorating health, and learn enough about my illness to do something about it.
Deborah and I recognized right away that although we were initially the only ones who knew about my terminal prognosis, this would have to change quickly! We needed to figure out how to share the news with our two adult children first, then with our wider circle of family, friends, and colleagues. Given the size of our social networks, we realized that we must manage communications with those who were concerned about my health. Neither of us could afford the time to always be repeating the same information about how I was doing! To help with this, we decided to open up a free, CaringBridge website where I could post information just once, and everyone concerned could ask questions or leave best wishes. This proved to be a very efficient way to keep everyone informed while controlling the message. It also provided a huge boost to our spirits (and my immune system, I’m sure!) to see the outpouring of prayers and support that flowed through the website directly into our hearts! The importance of receiving such messages of emotional solidarity, care and support cannot be overstated!
It also quickly became obvious that if I was to survive long enough to see my extended family one last time, I needed to get effective treatment fast. While my health had been bad for several months, I was now clearly in an accelerating decline. It was tough enough that my doctors were saying I was going to die from this disease relatively soon, but if that was to happen, I wanted one last chance to share a celebratory “goodbye” with those I most loved – and that meant I needed to be healthy enough to travel to Spain in May – just a short six weeks following my initial diagnosis. My hope was that if I could get treatment fast enough, it MIGHT knock back my cancer (and my symptoms) just enough so that I could make the trip.
For me, responding to my diagnosis meant having to quickly reconsider everything. Certainly, getting the best and most “advanced” scientific or allopathic care was an important priority – but there were other priorities too. Kelly Turner’s book, Radical Remission, makes it very clear that people who survive terminal cancer diagnoses have more in common than just their doctors and their allopathic treatment choices. Her analysis of more than 1,000 cases of radical remission revealed that survivors were also doing the following things:
- Changing their Diets
- Using Herbs & Supplements
- Increasing Positive Emotions
- Releasing Suppressed Emotions
- Following Intuitions
- Deepening Spiritual Connections
- Increasing Social Support
- Finding Strong Reasons to Live
- Taking Control over their Health
My friend and advisor, Anthony Somkin – a distinguished retired internist — sent me a beautiful short list of lessons he’d learned over his decades of treating terminal cancer patients. One of his lessons immediately attracted my attention:
“Alternative therapies, including, diet, meditation, exercise, etc. are generally useful.”
Shortly thereafter, two other advisors (who both happen to be survivors of life-threatening cancers) weighed in with recommendations based on their experiences. Although they’d pursued different “complementary care” choices, both claimed their use had been central to their survival and recovery. This really got my attention!! Only then did I fully open up to the idea that achieving survival and recovery was going to depend on much more than just my conventional medical choices.
All this happened – or was put in place – within the period between my diagnosis on March 27th and my first appointment at the Dana Farber on April 13th, 2017. It was perhaps the busiest, most intense couple of weeks in my life! Because there was so little time, it had to be. I had to learn as much as possible as quickly as possible about my disease, how to live with it in the moment, and how best to respond — while simultaneously thinking through endless scenarios. I was aware that to have any chance of success, I had to make extraordinary demands of myself and those I came in contact with. And I was aware that my own perspective and attitude were going to be very important determinants of how I would do. For example, I knew that in this situation, panic and fear were enemies, as there is strong evidence that fear and anxiety can depress immune response. I certainly didn’t want that! Instead, I felt I needed to maintain the positive even keel of the old farmer in the Taoist tale.
Fortunately, Deborah and I had been morning meditators for many years, and we were now able to rely on our daily meditation practice to help us recapture, maintain and strengthen our mental, emotional, and spiritual equilibria. I had long ago noticed that in meditation, if I was fully in the present moment everything was fine – and in a certain sense, I was “untouchable”. For me, the present moment is literally the land of no suffering and no death, and from that position of awareness, there is no fear. In the present moment, I am completely OK no matter what. So, I cultivated that awareness – and the peaceful, unattached, and loving attitudes that come with it. This helped immensely. Even so, the intense demands of this initial period exacted an enormous toll.
In another sense, this intense period of learning was also about searching for an overall strategy. Given what I had learned from Kelly Turner’s book and my own experiences, I understood that I needed to change and respond across many areas, but how so? For each area – what should I do? What were the options? How should I evaluate them?
As a former strategy consultant to Fortune 500 companies, I suppose it should be no surprise that I felt the need for a strategy to guide and inform my tactical choices and decisions. From my early exchanges with the doctors who were aware of my case, I was puzzled by the lack of interest they showed in the idea of a patient having a broad treatment strategy. They seemed to think that was really their job, and not mine. But actually, I found they really mostly didn’t understand “treatment strategy” in quite the same way I did.
In my view, a treatment strategy is a relatively high-level set of general principles to be followed by all those coordinating the treatment of a disease. In other words, I wanted to find a treatment strategy that would serve as a guide for me and others to follow in making day-to-day tactical decisions aimed at achieving a particular outcome, i.e., the goal of the treatment.
But before determining a guiding strategy, I needed some way of monitoring the status and progression of my disease. I had been flabbergasted to discover how limited the ability to reliably measure disease progression was for someone with my diagnosis. All cancer patients should be monitoring their disease, but many don’t have good ways to do so. For adenocarcinoma of the esophagus, there is no single blood marker that reliably reflects disease status or progression. It seemed “bizarre” to me that after 50 years of intense focus on developing protocols for cancer, we still don’t have cheap and reliable ways to monitor disease progression for many of them. As a consequence, patients can be left in the dark about how they are doing, at least until they have their next X-Ray, CT, PET, or NMR imagery at hand. In the meantime, they may not be able to answer even very basic questions like, “Is your treatment having a positive impact on your cancer?” I needed to figure out how to cheaply and easily monitor the status of my disease prior to considering a treatment strategy. The best I could do was monitor two cancer-related blood proteins: Carcinoembryonic antigen (CEA), and cancer antigen 19-9 (CA 19-9). While neither is a reliable marker by itself for my type of cancer, following how they are both behaving over time can provide some insight. If both are trending up fast – that’s a bad sign. If both are trending down, or are within normal limits – that’s good. With a plan to have blood drawn every two weeks in order to test my blood levels of these two proteins, I was ready to finally move on to considering what my treatment strategy should be.
On July 10th, 2017 I was restaged at the Dana Farber. My cancer was determined to be in partial remission. At that meeting, it became apparent that Dr. Sager and I disagreed with the course of treatment being recommended by my Dana Farber oncologist. My Dana Farber oncologist was urging me to continue with a minimum of 8 additional FOLFOX infusions (I’d already had 4). Jason and I thought it would be better to suspend the FOLFOX infusions in favor of enrollment in a Phase II clinical trial in Farmington, CT testing a combination of two immunotherapy check-point inhibitors – Pembrolizumab (Keytruda), and an experimental drug, Epacadastat. In the end, I decided to leave the care of the Dana Farber and pursue the immunotherapy trial in Connecticut. I enrolled in early August 2017. Since my enrollment over one year ago, I have enjoyed overall good health with no symptoms of overt disease and minimally inconveniencing side effects. Technically, my disease status is classified as “stable” – meaning that the cancer is still there, but has not progressed. Apparently, either Pembrolizumab and/or Epacadastat are at least partially “effective” therapies against my cancer, and I am very pleased to have added them to my arsenal. In the meantime, I have been working to improve the monitoring of my disease status, while identifying other effective therapies. If my cancer progresses, I intend to have a well-stocked arsenal that I can deploy in response. I believe my having direct control over the storage, query, and application of my fundamental health data sets – including my whole cancer genome – has been centrally important for achieving this.
Most recently, after working with Saskia Biskup at CeGaT in Germany, and then Stephen Shoenberger at the La Jolla Institute of Allergy and Immunology in San Diego on the design and testing of a personalized therapeutic peptide vaccine based on my unique cancer genetics, I have been accepted into a small, Phase I clinical trial that will manufacture and administer the resulting vaccine in conjunction with Pembrolizumab. As a part of this trial, I should receive my first vaccine injection in early January 2019. At this point, enrollment in such a clinical trial is the only “legal” way patients can get such a vaccine manufactured and administered here in the United States. Hopefully, my story will help change that for future patients. The technology for creating personalized vaccines is accessible and mature enough to pose little in the way of a barrier to getting many more – if not all – cancer patients the benefit of such therapy. Let’s make it happen!
Peace and Health be with you!!! – Stephen
EDITOR’S NOTE – read more of Stephen’s story in Conquer Magazine here: conquer-magazine.com/issues/2019/vol-5-no-3-june-2019/993-why-patients-with-cancer-need-to-gain-control-over-their-fundamental-health-data
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