By Rick Conner – Patient
When my regular cholesterol blood tests came back in November 2015 with a slightly elevated Absolute Lymph Count (ALC) of 6.53 (vs range of 2.3-3.6), my primary care physician suggested that I take it again in December. When it was still above normal, he suggested I meet with a hematologist.
When I called the hematologist’s office to make an appointment for January 2016, they answered “…… Cancer Care” so I mistakenly thought that I had dialed the wrong number! After having the usual flow cytometry, FISH test and bone marrow biopsy done they arrived at my diagnosis of Stage 0 CLL Del 13q, IGVH mutated. I am currently in Watch & Wait mode.
I settled into the “watch and wait” mode, seeing my primary CLL specialist (hematologist/oncologist) at Emory Winship Cancer center every 4 months for blood tests and general status. I also searched out and found the various CLL information sites/groups (with great help from my resourceful wife) and subscribed to these. One of these is the CLL Society. I attended a few CLL information-related sessions in the Atlanta area, and was pleased to have a chance to meet Dr. Brian Koffman at one of these sessions. I also joined the local LLS support group for CLL patients and have attended several of the monthly meetings.
In late December 2016, my wife pointed out a review of a 2016 published book called “n of 1, One man’s Harvard-documented remission of incurable cancer using only natural methods”. I decided to download a sample to my kindle to take a quick look. After doing this, I went ahead and bought the kindle book so I could continue reading that weekend. It was so intriguing!
The verbiage from the inside of the dust jacket flap says:
“In 1991, Glenn Sabin was a 28-year-old newlywed diagnosed with chronic lymphocytic leukemia (CLL)-a disease doctors called “uniformly fatal.” Treatments could buy him some time and eventually ease his discomfort, but there was no conventional cure. Glenn’s prognosis was clear: he was going to die.
Although Glenn and his wife, Linda, continued to consult with doctors, cancer specialists and top oncologists, Glenn made a monumental decision: he would become his own health advocate. While he continued to “watch and wait,” Glenn would figure out how to stay alive.
No one could predict when a large-scale clinical trial would discover a cure for CLL, so Glenn began his own, medically monitored and carefully researched lifestyle changes. He would conduct his own, single patient clinical trial.
He would become an “n of 1.”
Today, Glenn is not only alive, but a 2012 biopsy at Harvard confirmed that his bone marrow contains no leukemic cells. His case is now part of the medical literature.”
The book, which was co-authored by Dawn Lemanne, MD, MPH, a Stanford trained oncologist and “renowned authority on integrative oncology”, is an easy read, particularly for those of us who are living with CLL and have an interest in this topic.
When Glenn was diagnosed with CLL at such an early age 28, his spleen had already grown from a healthy 2 pounds, to 7. He had the spleen removed, and went on a mission to determine how to “cure” his CLL.
After getting a referral by his primary oncologist to Dr. Lee Nadler at Harvard, he was given choices of either an experimental Bone Marrow transplant, or Watch and Wait. The transplant option was discarded after assessing the high risk.
Glenn and his wife totally changed his nutrition to include only whole organic foods. He also resumed a rigorous, regular exercise regimen.
After researching many “natural cancer cure” books/websites, Glenn concluded that they were mostly self-serving “pseudoscientific schlock”. He ended up consulting with a couple of different nutritional pharmacologists/pharmacists/nutritionists who helped develop which supplements to take for his situation. Glenn also installed a reverse osmosis water filtration system in his home and office.
He was continuing to see his local oncologist for blood tests and exams several times per year, and having a bone marrow biopsy at Harvard every year or two. He also kept both up-to-date on his diet, supplements, and exercise routine.
In 2003, twelve years after his initial diagnosis, Glenn developed many of the symptoms of CLL. He was diagnosed with Autoimmune Hemolytic Anemia, which basically meant that his immune system had been hijacked by CLL, which had turned his immune system against his red blood cells.
After several consultations and second opinions, the result was recommendation to start chemotherapy (the initial 1991 option of bone marrow transplant was now ruled out as not being a cure for CLL).
Glenn decided to stall treatment, tweaked his “nutraceutical” supplements (with the help of his nutritional pharmacist) and upped his exercise program (daily walking, swimming). Teaming with his oncologist, he went in twice weekly for blood tests.
After three weeks and over several months, his blood tests improved, and finally his fevers and night sweats went away. Then his blood tests completely normalized. His doctor, who could not explain what had happened, recommended a flow cytometry test, only to find out that there were no CLL cells in his blood (even though, as he found out a little while later, there were still some lurking in his bone marrow).
Three years later, when he visited Dr. Nadler at Harvard, Glenn shared details of his incredibly healthy diet, meditative walks, long swims, weight workouts, and the nutraceuticals program. A quote from Dr. Nadler that resonated with me was “patients who are involved in their care generally do much better that those who have a more passive approach to their illness”.
Dr. Nadler connected him with another Harvard doctor (Dr. David Rosenthal) who had established in 2000, an integrative medicine clinic, complete with massage therapists, nutritionists, and Chinese medicine practitioners, at Harvard’s Dana Farber Cancer Institute (and also co-founded the Society for Integrative Oncology in 2003).
Over the next few years, Glenn began to tell his story to those interested. This was mainly about his basic principles of health that he had followed: drinking lots of water, exercising regularly/daily, practicing meditation or mindfulness in ways that worked best for him, and eating a plant-strong, chemical-free, whole foods diet. For those who wanted more details, he suggested they start by doing three things faithfully: drink plenty of clean water each day, take a 30-40-minute walk daily, and cut out all sugared beverages. If they stuck to this for three weeks, then he would discuss diet, specifically lightening up on animal products, and emphasizing whole foods, vegetables, and fruits. He would also refer them to reading materials he had thought were helpful. These discussions eventually led him to a new career, in advancing the field of integrative medicine. He spent the next several years attending medical conferences and meeting with various medical professionals in this area.
From the conferences he attended, he met Dr David Servan-Schreiber (MD, PhD), who discovered he had a brain cancer tumor when one of his study group didn’t show up for a brain scan, so he had it done on himself. After surgery and radiation, and a later relapse, Dr Servan-Schreiber began investigation, and eventually adopted, extensive lifestyle changes, including a plant based diet, regular exercise, and restorative sleep. He subsequently wrote a book, “Anticancer: A New Way of Life”, which detailed the measures he took to extend his survival at that point for over 10 years, what should have been a quickly fatal brain cancer (I have now read this book, and can highly recommend it for the diet and nutrition guidance). Glenn tells of how he described in his lectures about how agriculture and the American food supply chain have changed over the decades. A lot of focus was given to food now given to livestock, changing from grass to grain. How grass, or pasture, contains beneficial omega-3 fatty acids, and how beef from cattle grazing on grass contains the same beneficial fatty acids as does wild salmon! By contrast, corn oil and soybean oil are very inflammatory, full of omega-6 fatty acids. These inflammatory fatty acids accumulate in the flesh of cows feeding in grains containing these oils.
Another speaker that had a profound impact on Glenn was Dr Keith Block, medical director of the Block Center for Integrative Cancer in Evanston, Illinois. They combine conventional treatments with integrative approaches such as Chrono modulated chemotherapy and targeted supplements, along with diet, exercise, and stress reduction techniques. Block uses various “terrain” blood test panels to assess nutrient levels, inflammation, blood sugar levels, oxidative stress (free radicals), and stress hormones. His book, “Life over Cancer: The Block Center Program for Integrative Cancer Treatment” is also a good read.
In 2009, when Glenn’s CLL became active again, he became a patient of Dr. Block at his center in Illinois. They did all the various blood tests, and tweaked his diet and various supplements accordingly. Despite all that, in six months, his white blood cell count had risen to 47,000, and his anemia was worsening. So, in late 2010, Dr. Block increased the amount of EGCG (Epigallocatechin-3-gallate, an Extract of Green Tea) in his regimen. .In about 3 months, his white blood cell began to drop, and continued to do so. By November 2011, about a year later, his white blood cell count had dropped to 5,600, at the low end of normal. In addition, every single number in his “terrain” reports had returned to normal levels. A complete blood count and flow cytometry of the blood found no CLL cells, making his blood normal. He convinced his Harvard doctor to also do a bone marrow biopsy, to see what may or may not exist.
When the BMB report came back, it stated “Flow cytometric study of bone marrow and peripheral blood do not reveal diagnostic features of involvement by a B cell lymphoproliferative disorder are not seen (Clinical: 48-year-old male with history of chronic lymphocytic leukemia with no prior medical treatment) i.e., he was in full clinical remission!
The book ends with a discussion between Sabin and his Harvard doctor discussing what he can share about his great results without conventional treatment; the lifestyle choices and whole person approach. They discussed possibly sharing his robust response after increasing EGCG. But there were also the other lifestyle and supplement interventions, which was all he was doing at the end of 2003 when he recovered from CLL-related anemia.
Sabin finally calls on conventional physicians and investigators to put serious resources to work considering cases like his, where an unexpected recovery occurs. Also, to conduct rigorous research needed to learn how to best use diet, exercise, stress reduction techniques, herbs, and supplements to help people with serious illness. He calls on patients and their loved ones to support the doctors on the front line of this approach: integrative physicians.
On a personal note, this book has served to open my eyes to the many steps I can take to turn “Watch & Wait” into “Watch & Investigate”. It has served to whet my appetite to best understand what I can do to improve the “terrain” of my body through diet, exercise, supplements where appropriate, and stress reduction. The other books referenced served as great foundation for this as well. Many of the steps taken can serve a totally healthy person as well as someone with various infirmities.
During his journey, Glenn discovered that:
- No two cancers are exactly alike. Our bodies, minds and diseases are unique, and need to be treated as such.
- Knowledge and empowerment are your best allies against a life-limiting diagnosis.
- Lifestyle changes are a powerful way to help prevent, manage and reduce the recurrence of disease–and to improve your quality of life
- A strong support system and a clear mind may significantly improve your health.
Rick is 65-year-old healthy (except for the CLL diagnosis) man, living with his wife Debbie in the metro Atlanta area since 1996. He currently is Senior Managing Partner for Javalin Group, which does global IT consulting focused on aiding early-stage companies in the Healthcare, Communications, and Media industries. He also focuses on enabling US-based companies who desire to expand into international markets. Rick is a proud father and grandfather of two daughters, and three grandchildren. In his spare time, he enjoys golfing, tennis, hunting, and backpacking (and of course, spoiling grandchildren!). Rick can be reached at firstname.lastname@example.org or 678-361-1783.
Originally published in The CLL Tribune Q1 2017.