2021: I am 58 years old with a 30 year cancer survivorship story, a career change brought about by that survivorship, and a balanced, healthy, and happy life.
Though I will never know the way or the order in which my actions, over time, affected my complete remission of cancer, without conventional treatment—I do know that by taking an active role in my healing, documenting it, and continuing to stay involved in wellness advocacy, I continue to thrive.
That advocacy would eventually result in a pathology report stating: “Flow cytometric studies of bone marrow and peripheral blood do not reveal diagnostic features of involvement by a lymphoproliferative disorder.”
Put simply: A Harvard pathologist could not tell that I had ever hosted CLL.
“A journey of a thousand miles begins with one step.” ~Lao Tzu
That first step was taken by a twenty-eight-year-old me, in September 1991; a blip on a busy day when I walked into my primary care doctor’s office for a routine physical. The next thing I knew, I was next to my car in a parking garage under the medical center, tears flowing; diagnosis and prognosis: Chronic Lymphocytic Leukemia (CLL), six months to live.
The Chronology Of What Next
Washington, DC based hematologist, Bruce R. Kressel, MD—later associated with John Hopkins—confirmed the diagnosis through a bone marrow biopsy.
The first thing to be addressed was my spleen which was significantly enlarged, leading those involved to believe I’d had the disease for a while. A normal spleen weighs about two-and-a-half pounds; mine contained an additional five pounds of leukemic cells.
Two months after the shocking news that shook my world, I underwent a splenectomy to de-bulk the tumor burden.
After I recovered from the splenectomy, my hematologist suggested I get a second opinion from a major cancer center—after all, CLL was usually an older person’s disease. A leading clinician investigator at Harvard’s Dana-Farber Cancer Institute, Lee M. Nadler, MD, provided his expertise and corroborated the findings.
Next, it was time to discuss prognosis and options for treatment.
Two choices: watchful waiting or bone marrow transplant.
In 1991, watchful waiting was brand new and involved just that: watch carefully for changes and, as the disease made aggressive moves, assault it with multiple chemotherapies and steroids.
Back then, bone marrow transplants were experimental as potentially curative. There was a risk associated with graft versus host disease, and a 20% mortality rate. In preparation, my siblings had their blood tested, but neither matched. I’m not sure why we didn’t look at the marrow registry.
This left the autologous bone marrow transplant—collecting some affected marrow with biopsy needles, after which my marrow would be eliminated with high dose chemo and radiation therapy. I’d have no immune system, and be isolated for some time. My own cleaned marrow would be reintroduced to my system and stimulated. In addition, I’d be rendered sterile and have to bank sperm if I wanted children.
I was in the prime of life, newly married, with a terminal diagnosis and a prescriptive for a palliative approach. Doctors said I ‘could’ live a number of years by managing the disease with various interventions, but nothing was guaranteed.
A Type-A, there was no way I could dutifully watch and wait, which sounded like woeful witness, but the transplant appeared invasive and risky.
I rejected both choices, because…
Words matter. Intentions are important. I decided watchful waiting would be ‘proactive observation’. I set about learning what to do to become the center of my own healing. I knew I had a meaningful role to play in the management of my own care.
I was told that the science of CLL was evolving quickly; new ‘cures’ on the near horizon. I wondered if I could hold the disease at bay until a curative therapy was available.
Not Everyone On The Same Page (1991)
I shared the concept of proactive observation with the respected oncology team. How could I be more involved in my own care? What lifestyle change could positively impact my immune system? What might change the biology of the CLL?
Though grateful for my well-regarded oncology team, they saw zero value in the behavioral change I planned to investigate. Their response was unanimous: leukemia was a genetic malfunction—the condition would not respond to diet or exercise. ‘Kid, focus on living the best life possible.’
I could have easily followed their advice. After all, I was used to eating plenty of processed foods, burning the candle from both ends, and not paying much attention to sleep and stress. I was 28 and, thought to that point, indestructible. But I knew in my bones, literally, that my actions (aka lifestyle choices) would have consequences, positive or negative.
Early Days Of Integrative Oncology
The Society for Integrative Oncology was founded 12 years after my diagnosis; no integrative medicine programs existed at major cancer centers in 1991. It was early innings; the pushback within academia and with oncology specialists was extreme. The terms ‘alternative medicine’, ‘CAM’, and ‘integrative oncology’ were incorrectly used interchangeably.
While there were pioneers in the field, I often felt alone in my research, even though I had the steadfast support of my wife, Linda.
Taking Control (1992 onwards)
I knew I could do it—most days. I could develop a comprehensive program, relying on evidence-based approaches to affect the biology of my disease, or at least to significantly boost my immune system.
These were the days before a fully functional Internet. Libraries and bookstores held books and articles on the biology of CLL, including some pioneering works on the impact of lifestyle changes on disease.
Through my research and travels, over time, I became knowledgeable about: the connection between malignant disease and nutrition, inflammation, oxidative stress, insulin-like growth factor, hydration, metabolism, and stress hormones.
My new way of life included:
- A plant rich, pescatarian diet—cold-water omega-rich fish.
- Daily exercise, including cardio.
- Learning meditation and other forms of stress reduction.
- A whole-house water softening system.
- Reverse osmosis water for drinking at home and the office.
- Dietary supplementation.
I adhered to my evolving lifestyle regimen for a dozen years post diagnosis, and felt like I was in the best shape of my life. Until…
Tipping Point (2003)
I had been feeling well and living a full, rounded life. My marriage was great, and I became a father to two incredible boys.
Though I felt well, and my blood counts were stable, my bone marrow had steadily become more involved with leukemic cells.
In 2003, I became ill with a coombs positive hemolytic anemia. My hematocrit dipped to 22. Tests showed my bone marrow was infiltrated by over ninety percent leukemic cells. All the healthy cells were being crowded out.
The consensus of my oncology team—Dr. Kressel, MD, and the CLL specialists at Hopkins’ Sidney Kimmel Cancer Center in Baltimore, and Dr. Nadler at Harvard’s Dana-Farber—was that I needed immediate treatment.
A bone marrow transplant had not been the curative intervention hoped for. Patients who had a transplant for CLL at that time would relapse, and ultimately die.
The evolved standard of care featured the monoclonal-antibody Rituximab, a couple of chemotherapeutic agents, and prednisone.
Dr. Nadler’s words would not leave my head: “Glenn, you are heading over the top of the cliff; you need to be treated. Now!”
I’d felt the decline; had a constant low-grade fever and was extremely weak. I had trouble focusing. At least three times each night I’d wake soaked in a cold sweat.
Extending the Experiment (2003)
Now? No. I told my physicians I would not submit to conventional therapy. At least not immediately.
CLL was still considered incurable. The cocktail of monoclonal-antibody, chemo, and prednisone was a palliative intervention; a way of extending a terminal diagnosis.
The treatment might put me into a partial remission for a year or two, then, on its return, it would likely be resistant to the same drug therapy, plus there were side effects and significant toxicity associated with their recommendations.
Twelve years into my proactive healing experiment, though I had an underlying severe auto-immune hemolytic anemia (AIHA) and a blood count gone awry, my body was in great condition from the extreme lifestyle measures I had incorporated.
I outlined a plan to my physicians: to work together over the coming weeks and to continue monitoring my blood. If I couldn’t impact the course of the AIHA, I’d agree to treatment.
The professional consensus was I was wasting time. I disagreed. I had nothing to lose; the standard of care would only deliver relief from my intense suffering. It wasn’t a cure.
I had learned so much about myself. I understood the relationship between my blood counts and my actual physical and emotional health. I knew which numbers made the most sense to pay attention to. I trusted I would know when to nod to the course of treatment.
Revision to the Regime (2003)
I took a sabbatical from my business, addressing only the most critical aspects of the media company I ran. My nutritional pharmacologist and I reviewed the nutraceutical protocol. We eliminated some agents and added others such as CLA, artemisinin, and a whey-based immunoglobulin product.
I continued walking and swimming despite doctors’ warnings about the strain it would put on my heart. The activities were short, but daily, and all outdoors. It was during walks and swims that I felt the most relaxed—this cardio was the most powerful form of mind/body work, given, alas, I have never been able to develop an effective meditation practice.
Clinical Response (2003)
Complete blood counts were done twice a week—the counts stabilized after several weeks. Thirty days showed a clear trend of improvement. Two months and the CBC indicated my blood chemistry had normalized.
A flow cytometry allowed us to take a deeper look at the blood. From a systemic view, there was no evidence of disease.
As my strength returned, I resumed my previous schedule. Following that, a PET/CT scan at Harvard, additional diagnostics, and a physical exam, confirmed no evidence of disease.
I was in a partial remission without conventional treatment of any kind. The systemic blood was clear of leukemia, but a bone marrow biopsy revealed my marrow was still impacted by leukemic cells, though greatly reduced since my acute episode.
(Note: I later learned I am the only case in the medical literature showing reversal of AIHA without the aid of steroids or other drug agents.)
For six years I’d remained healthy, maintaining my positive lifestyle. Then, in 2009, tests showed an increase in my white blood cells—anemia again, and my absolute lymphocyte count rising.
Psychologically challenging, I pushed myself to separate the emotions from my physical presentation which was asymptomatic. I felt perfectly well.
The first thing I did was review every aspect of my protocol, and I ‘honestly’ reflected on the current amount of stress in my life.
The standard of care had pretty much remained static since 2003; the obvious person to turn to was a new friend and colleague, Keith Block, MD. Dr. Block is arguably the father of modern day integrative oncology, and I was eager to add him to my medical team. Eighteen years after my diagnosis, he became my first integrative physician.
Dr. Block and his team recommended substantial changes to my nutraceutical regimen. These were scientifically informed by my unique biochemical milieu—based on my macro and micronutrient levels, and biomarkers connected to hormones, glucose panels, inflammatory load, circulation, and oxidative stress levels.
I embraced the new protocol; stuck to it for a number of months, but my white blood count continued to elevate, exceeding 50,000. Ten months in, changes included the clinical dosing of green tea extract (EGCG)—following the Mayo Clinic trial dosing of 4 grams daily.
Complete Remission—Achieving Second Clinical Response (Late 2010)
Over a short period of time, after the addition of the green tea extract, my white blood counts stabilized. Soon, all areas of my blood chemistry normalized. Flow cytometry showed NED in my systemic bloodstream. I had achieved a second clinical response without conventional intervention.
In January 2012, I returned to Dr. Nadler in clinic at Dana-Farber. I insisted on a bone marrow biopsy, curious if my actions had had any measurable impact on the marrow.
The note from pathology bears repeating:
“Flow cytometric studies of bone marrow and peripheral blood do not reveal diagnostic features of involvement by a lymphoproliferative disorder”.
There was no evidence of disease. A Harvard pathologist could not tell that I ever had CLL.
Another biopsy in January 2014 informed the same results.
Though I make no claims as to how, specifically, my remission was achieved, what I do know is I applied a deeply comprehensive, bio-synergistic approach to my disease for over two decades. While my outcome does not prove causation, and I do not speculate (because it is not a useful practice), I remain engaged, dedicated to my self-care. I am deeply engaged in promoting the wellbeing of others, and an active proponent of evidence-based integrative oncology.
My story is one of proactivity, perseverance, and resiliency that emphasizes we each host disease and heal from it as individuals. Simply stated, we are unique in our chemistry. Ultimately, as the title of my book suggests, we are each an n of 1.
Purchase n of 1 here.
View peer reviewed, published case report on Glenn’s clinical journey here.
Learn about coaching with Glenn here.