My name is Alison Lee, and I was diagnosed with Lupus at 16 years old.
My only symptoms at the time were raised skin lesions on my back and abnormal bloodwork, so I could easily ignore my lupus diagnosis. I was able to function normally throughout college and my first few years working.
But in 2008, my Lupus started to flare, and one by one, different parts of my body acted up. I landed in the hospital several times a year with anemia, shortness of breath, congestive heart failure… you name it. I became the walking definition of the havoc Lupus can cause. I fought so hard to pretend everything was normal, working full-time in marketing and continuing to travel and socialize. But in 2014 it all caught up with me.
Lupus attacked my kidneys and I could no longer maintain any sense of normalcy. I left my job, one I truly enjoyed, to start dialysis. It was the hardest thing I’ve ever had to do. I felt like I was letting Lupus win, I had to come to grip that my health was now my full-time job.
In June of 2016, I was lucky enough to receive a kidney from my amazingly selfless mom. Although the transplant went smoothly, a month after, I found a mass growing behind my ear that was an aggressive lymphoma (DLBC) triggered by the drugs that prevented my body from rejecting my mom’s kidney.
I spent the next 5 months that year in and out of the hospital for chemo (R-EPOCH) treatments and various infections. Luckily, I have incredible family and friends, who were constantly by my side, bringing me yummy food, entertaining me, and keeping my mind off of any worry that crept into my mind. While it wasn’t the ideal situation, I made the best of it and found some enjoyment during that time.
While the chemo treated the cancer, it also suppressed my lupus which allowed me to fully enjoy life for the first time in years. I ended up having a relapse of cancer in the fall of 2018 (the journey never seems to end, huh?). This time it was thankfully slow growing and limited to a small area behind my ear which could be easily and painlessly eradicated with some radiation.
Today I feel better than I have in years. I’m working as a marketing consultant part-time, practicing and teaching yoga regularly, and trying my hardest to lead a healthy lifestyle. I find so much support from not only my close friends and family, but also the greater patient community. You all give me strength and show me that I’m not alone out here!
Justis was a normal teenage kid. He played soccer and video games, loved math and the Philadelphia 76ers.
In 2015, Justis graduated from Notre Dame De Lourdes in Swarthmore, PA. He loved hanging out with his classmates and enjoyed making them laugh as much as possible. He was a connector and he always made sure that everyone was included. After Justis graduated 8th Grade, we moved from our lifelong home in Delaware County, Pennsylvania to our new home near Atlanta, Georgia. Justis acclimated well to his new surroundings and school and began making friends within a few months. He maintained a 4.0 GPA at South Forsyth HS and continued playing soccer for the next 2 years but on Tuesday, January 24th, 2017, our lives were changed forever.
Justis had been vomiting all day and complaining of a severe headache. A visit with his primary doctor that afternoon failed to find a cause. As the evening progressed, Justis’s condition worsened and he was unable to keep even the smallest sip of water down. Fearing he was becoming too dehydrated, we prepared to take him to the hospital. It was at this point that our son began to seize. We immediately called 911 and Justis was rushed by EMS to the emergency room where doctors quickly evaluated his deteriorating condition. Through a CT scan of his head, the doctors discovered bleeding and pressure in the brain.
The situation became dire so the doctors called for a neurosurgeon that was thankfully just minutes away at a nearby hospital. A drainage tube was placed in Justis’s brain to relieve the pressure before they airlifted him to Children’s Healthcare of Atlanta.
Essentially, these doctors saved his life. Our son had no prior symptoms yet we almost lost him that same night.
The following day, an MRI revealed a large tumor in the right thalamus of Justis’s brain. Though the tumor was considered operable, the doctors knew they would not be able to remove it completely.
Justis’ tumor was classified as a Grade IV Glioblastoma Multiforme (GBM) — the most aggressive and life-threatening form of brain cancer. This was a terminal diagnosis as Glioblastoma does not typically respond to traditional cancer therapies. Although we were faced with the worst possible diagnosis, we were determined to fight the disease through every natural and holistic method possible.
We hiked, we laughed, we enjoyed every moment. We held onto hope and Justis fought with everything he had but on May 11, 2017, less than 4 months after being diagnosed, Justis left this earthly world to live in light, eternally.
Justis was good kid. He was an intellect with a wonderful sense of humor. He was our beloved son, but he was also a big brother, grandson, nephew, cousin and friend. He was a jokester, an athlete, a gamer, — a most extraordinary 15-year-old young man. A month before he was diagnosed, Justis received academic letters from his High School for a 4.0 GPA — all the while, having a brain tumor the size of a tennis ball in his head.
Wireless Radiation in Justis’ Room
Our dog Leia died from cancer 6 months before we found out about Justis’ deadly brain tumor.
Leia had a tumor the size of a baseball in her head. She spent most of her time with Justis in his room while he played video games and streamed his favorite shows. Justis was only 4 when we got Leia and they were such close friends.
Justis had a Wi-Fi extender in his room to boost the signal from the router downstairs and he would play video games for hours. His headset and controller were wireless and the game console had an antenna in it as well.
One of Justis’ friends didn’t have a headset to communicate while they were playing so Justis would use his cell phone for the entire duration of the game to chat with him.
Justis would do his homework on his laptop prior to playing video games and then after playing he would use his tablet for another hour or two before bed.
Please understand that we are telling you this information with good intention.
We are positive that our dog and our son met the same fate due to our lack of understanding.
There is no wireless in our home now. Everything is wired including the computer with which we are making this post.
Looking Back with Joy
Even though memories are all we now have of Justis, we are learning to look back with joy rather than sorrow. It’s hard but we are learning. His short yet impactful life continues to inspire us every day.
Justis was smart, funny, honest, caring, hard-working and courageous. If he was scared about what he was faced with, he certainly didn’t show it. True courage is moving forward in the face of fear. It is not the absence of fear.
Justis taught us so many things throughout his short life. Before he left us, he taught us one last thing; that it’s our connection to each other that makes this world a special place. More often than not, we must put our phones away and really look at each other. We are not alone. Each and every one of us has suffered, is suffering or will suffer at some point in our lives. But the connections we make in this life are what will help to ease us into the next life. After everything that Justis’ journey has taught us, this fact is one of the most important takeaways. So please, remember to love your neighbor. Love is the most important part of life.
The grief we feel after losing our son is nothing more than love with no place to go. We will never stop loving our son, but we will try to find a way to redirect that love so that the grief will fade, and the love will continue. We will always be proud of him and we cherish the memories we have stored in our souls every day. – Mike & Christen James
In 2005 I discovered I have a rare sporadic autoinflammatory disease called Muckle-Wells Syndrome that causes me chronic pain and many health challenges. The incidence of Muckle-Wells Syndrome has been reported to be approximately 1 in 1,000,000 people in the United States.
I had a banking career going strong. I was doing some modeling; I had a good life with my daughter and my parents. All of the sudden pain. Lots of it, and it was unrelenting. Every day by noon, I felt like I had the flu. I would develop fevers, extreme fatigue, blurry vision, swollen ankles, red sore lesions, and inflammation throughout my entire body.
Many doctors and specialists later, I was able to find a highly-skilled rheumatologist who diagnosed me based on my symptoms, clinical data, bloodwork, full-screen genetic tests, and a biopsy-proven Muckle-Wells Syndrome positive NLRP3 mutation. Together we created a suitable treatment plan accommodated with the right medication to improve my life quality. I slowly started to feel better for more extended periods.
I eventually recognized how devoting myself to fitness gave me control over the pain. It put me back in charge of my life’s priorities. I embraced that control with fierce determination. In fact, by 2013, I took the top trophy in a fitness competition. I was 36 then, and as I posed on stage with women who were 15 years younger than I was, I had no idea that I was only six months away from a stage 3 breast cancer diagnosis. It turns out that breast cancer was a more formidable challenger than the 21-year-old competitors I posed with on stage that year. And as hundreds of thousands of women know, breast cancer treatments are just as deadly as the pathology.
I want to tell you that I beat the living daylights out of cancer and rose above the hardships of chemo, and moved on to the balance of my life with restored wellness, hope, and happiness. But life had other plans for me, mostly in the form of a cancerous thyroid nodule, genetic chronic basal cell carcinoma, ALCL breast implant illness, a hypoglycemic condition, and continued challenges with my old partner, Muckle-Wells Syndrome.
I have been wracked by illness and disfigured by more than twenty operations since 2013. Fear nearly overwhelmed me. Emotional scars accompanied physiological scars. My self-image wavered, relationships faltered, and I thought resistance was futile. Control, once again, eluded me.
But something kept nagging at me. It was as irritating as my chronic pain because I couldn’t put my finger on it. I couldn’t quite hear the whisper in my head that was dying to give me the encouragement that would save my life.
Then I saw it.
It was an old photograph. It was one of the pictures of me on stage back in 2013, accepting the trophy for a fitness level that few women ever achieve. My eyes were closed in the picture, and I was breathing in the victory. Profound happiness was all over my face. That day I took first place in three divisions: Figure Novice, Figure, and Tall. I won the Overall Championship, earning the title Ms. USBF 2013!
It occurred to me that victorious day, one of the most incredible days of my life, was eight years after my Muckle-Wells diagnosis. I stared down that son-of-a-bitch disease and its despicable chronic pain…and I won.
So I had to do it again.
Determined to get back in shape, I rediscovered my passion for fitness, and it has served me well. Fitness has a tremendous impact on my self-esteem, and it helps manage the symptoms I live with every day. Exercise isn’t just about building big muscles and looking good. Exercise is about the decision to be the best version of myself I can be. I want to be healthier, feel better, and get stronger inside and out every single day. And that, ladies and gentlemen, is in MY control. Nobody else’s control, and certainly not in some nasty disease’s control. MY control.
Now, while I still deal with my disease daily, I’m teaching others how to use fitness to regain control of their lives. I’m writing a memoir, launching an online presence, and I am determined to be a spokesperson for people with rare diseases. I am living proof that we can take back control of our lives despite illness and focus on wellness instead of illness! If you don’t take care of yourself, what else do you have? My memoir will prove to people that they can do what I’ve done…twice.
Through my journey, I found my purpose. My purpose is to prove that anyone can control challenges and see hope and happiness!
In February of 1999, Saranne Rothberg, a single mother of a 5-year old daughter, was diagnosed with an aggressive stage 2 breast cancer that would later develop into a stage 4 Triple Negative breast cancer diagnosis.
Devastated by the news, Saranne remembered an article that she had read about a man named Norman Cousins. Norman authored the book, “Anatomy of An Illness;” a book about how the power of laughter and positivity can heal the body. With Norman in mind, Saranne ran hastily to the local video store and loaded up on comedy videos.
It took tremendous courage to hold back the floodgate of tears as she put her little girl, Lauriel, to bed. “How many more bedtime stories will I read to her?” “Will I be strong enough to bathe her after chemo starts?”
Saranne laughed and cried as she watched comedians like Eddie Murphy, Jackie Mason, Robin Williams and Jerry Seinfeld. She was thrilled to know that she still could laugh as she could feel the laughter loosening the knots in her stomach while praying for a miracle.
The next morning Saranne had deemed her daughter, Lauriel, her “Humor Buddy” and they made “An Appointment to Laugh” every day.
The ComedyCures® Epiphany
Saranne organized “A Chemo Comedy Party” to take place during her first chemotherapy treatment. Saranne provided the patients with six hours of stand-up comedy along with refreshments and party favors. Everyone was welcome including the doctors and nurses. It was then, while she was getting treatment, that she had the epiphany to start The ComedyCures Foundation. It would be a non-profit organization geared toward bringing hope, joy and comedy into the trenches of treatment. Her LaughLine® would be 1-888-Ha-Ha-Ha-Ha. Saranne spent the next two and a half years manifesting her vision while enduring three surgeries, forty-four radiation treatments and ongoing chemotherapy.
In addition to laughter, Saranne let go of negative emotions and toxic people while replacing them with positive ones. She then focused on her relationship with G-d and instead of saying “Why me?” she wondered how her diagnosis could help her to help others. Deep down, she believed that she wouldn’t have gotten cancer unless she could use it to help the world.
Using Tibetan Medicine to Awaken Her Immune System
Saranne made changes to her diet and along with her traditional treatments and she was willing to try anything in the hopes of healing and awakening her immune system.
Going into her third year of treatment, Saranne was scheduled to have her fourth potentially life-threatening surgery when she learned about the Dalai Lama’s doctor, Dr. Yeshi Dhonden. Dr. Dhonden had been featured on NBC’s “Dateline” because of his Tibetan medicinal treatments for late stage cancer patients. Saranne tried desperately to get an appointment with Dr. Dhonden.
For weeks, Saranne asked everyone that she came into contact with if they had any connections to Dr. Dhonden. As fate would have it, Saranne happened to be telling a patient about ComedyCures® when she learned that that patient could help her! The patient knew someone affiliated with Dr. Dhonden and she was able to get Saranne an appointment just days before Saranne’s scheduled surgery.
During her visit, Dr. Dhonden examined Saranne telling her that she was “very, very well” despite the fact that she was living with stage 4 cancer. Instinctively, and by reading her pulse, he pointed to various places on her body where she currently had cancer; as well as where she had had in the past.
Dr. Dhonden explained that Tibetan herbs work differently than Western medicine. Western medicine destroys cells quickly while Eastern medicine builds in one’s system and creates energy in one’s immune system.
When Dr. Dhonden asked Saranne if she would be willing to take his herbs, she humorously replied, “Sir, if you asked me to hang naked off the Statue of Liberty and sing God Bless America, I would do it!” He laughed and told her that wasn’t necessary and all she needed to do was to take the herbs and follow his protocol.
Within 36 hours, Saranne’s major symptoms started dissipating and she made the decision to cancel her 4th surgery. Three weeks later, her scans showed that the cancer growth had slowed. Her six-week and three-month scans both showed that the cancer was regressing. After taking the herbs for eighteen months, Saranne’s prayers were answered. There was no evidence of disease!
Saranne believes that her cure was multifold: Comedy cured her spirit and gave her strength to fight the physical battle of cancer. She also feels that she created a new environment that supported her emotional, spiritual and medical well-being while the Tibetan medicine awakened her immune system; and combined that helped her body to heal.
“It’s been almost 22 years, three surgeries, 44 radiation treatments and too many chemo cocktails since my all-night comedy marathon. My most severe personal challenge became my greatest professional accomplishment. Since the launch of our ComedyCures Foundation, we have entertained more than one million people worldwide at more than 1500 events. My ComedyCures Co-Founder, (Saranne’s daughter) Lauriel, and I have shared our programs, strategies and comedians with the United Nations, Marines, orphanages, women’s shelters, schools, hospitals on several continents and families impacted by the September 11 attacks. The punchline is that I am cancer-free, and my funny bone healed.”
Saranne’s journey inspired Dr. Kelly Turner’s New York Times Best Selling Book and Hay House’s Docu-series “Radical Remission”, plus many other articles, books, and videos.
Saranne launched The ComedyCures Foundation from her chemo chair in 1999. ComedyCures is an award-winning 501(c)3 non-profit organization that brings joy, hope, laughter and therapeutic entertainment programs to the ill and underserved around the globe. Through live ComedyCures events and digital outreach, ComedyCures entertains, educates and unifies grown-ups and kids living with illness, their families, and medical caregivers. Audiences experience the benefits of a community, comic perspective and hope.
For more information, please visit https://comedycures.org or call 1-888-300-3990
For a laugh, call the 24/7 LaughLine 1-888-Ha-Ha-Ha-Ha (1-888-424-2424)
My name is Larry Indiviglia and I am a cancer survivor. I was diagnosed with stage 1 colorectal cancer in 2015.
My cancer experience led me to a woman named Gayle, who I met online on Jan 6, 2020. For two actively aging seniors, in our sixties, we fell madly in love against all odds; Gayle was battling Stage 4 breast cancer (4 years).
We both made the choice to live and love in the now and enjoyed a fabulous, fun-filled, passionate, respectful, and loving relationship for 75 days before Gayle’s cancer spread to her brain.
Gayle told me on our first meeting that she had stage 4 cancer and although logic and societal norms say ‘stay away’…I stayed and was captivated by her tremendous spirit and inner and outer beauty.
Gayle transitioned at peace on May 12, 2020. Gayle inspired me to write “126 Days, 11 Minutes: Our Love Story” to honor her life. The most profound experience of my 65 years of life; I am a better person today because of my powerful relationship with Gayle. I followed my heart, and so did Gayle.
In the fall of 1991 at the age of 28, a routine physical exam with my primary care physician swiftly changed from its predictable pattern and transformed into a shocking diagnosis of Chronic Lymphocytic Leukemia (CLL).
I was given a dire prognosis: six months to live.
Apparently I’d had the disease for some time; my spleen was significantly enlarged. A normal spleen weighs about two-and-a-half pounds. Mine was seven—infiltrated by five pounds of leukemic cells. Two months later, I underwent a splenectomy to de-bulk the tumor burden.
After recovering from the splenectomy, I sat down with my hematologist to discuss my prognosis and options for treatment. Given my age, he suggested I obtain a second opinion from a major cancer center. It was arranged and carried out with Lee M. Nadler, MD, a leading CLL clinician investigator at Harvard’s Dana-Farber Cancer Institute.
I was offered two choices: watchful waiting or bone marrow transplant.
1991 had ushered in a shift in the standard of care from an immediate cocktail of chemotherapeutics to the option of watchful waiting—basically observing the course of disease. The theory was, when the disease made a more aggressive move, it would then receive a violent assault in the form of multiple chemotherapy agents and steroids.
At that time, bone marrow transplants were essentially experimental as potentially curative intervention, carrying with it the risk associated with graft versus host disease—and a 20% mortality rate. My siblings had their blood tested for matching purposes, but since none matched, allogeneic transplant was ruled out. For reasons I do not recall, we never looked at the marrow registry.
That left the option of an autologous bone marrow transplant—removing some affected marrow with biopsy needles, after which my entire immune system would be wiped out with high dose chemo and radiation therapy; my marrow would be eliminated; I would be isolated for an extended period of time, then, once the marrow was destroyed, my own ‘cleaned’ marrow would be reintroduced into my system and further stimulated to repopulate. Furthermore, I would be rendered sterile and have to bank sperm if I wanted children.
CLL is an older person’s disease. I was in my late twenties, newly married—prime of life. I was told my condition was terminal, but that I could live a number of years by managing the disease with various interventions, as needed; a palliative approach.
But how could I, a forward-leaning type-A, get comfortable with the two options? Watchful waiting seemed incredibly passive—essentially a sitting duck. And the bone marrow transplant appeared incredibly invasive. And there was that 20% mortality rate.
Ultimately I chose neither option and went with what I call ‘proactive observation’. I would not simply wait for the other shoe to drop. I would learn what I had to do to become the center of my own healing, playing a meaningful role in the management of disease. After all, I was told that the science of CLL was evolving quickly; apparently new cures were on the horizon. Perhaps I could hold my disease at bay until a curative intervention became available?
I shared my preferred care approach with my esteemed oncology team and asked important questions. What proactive measures could I take to become more involved in my own care? What lifestyle change might positively impact my immune function, or possibly alter the biology of the CLL?
There was unanimity in their response: Nothing I could do would positively affect the course of disease. The leukemia was caused by a genetic malfunction; it was not my fault; diet and exercise would make no difference; I should focus on trying to live the best life I could.
Soon I would understand that my oncology team was not all that interested, or trained, in nutrition and other lifestyle approaches to cancer care. At the time of my diagnosis, the literature was largely void of studies showing the benefit of diet, physical activity, and stress reduction on helping to prevent disease, let alone to control its growth, or to better ensure long-term survivorship.
It was incredibly discouraging that my well-regarded oncology team saw zero value in the behavioral change I planned to investigate. I decided to look for others who could support me.
Earliest Days of Integrative Oncology
My diagnosis, in 1991, came a dozen years before the founding of the Society for Integrative Oncology; a full decade before major cancer centers launched integrative medicine clinical programs. It was early innings, and the pushback within academia, and across the private practice community within oncology, was intense. The terms ‘alternative medicine’, ‘CAM’ and ‘integrative oncology’ were largely conflated by the majority of healthcare professionals.
Suffice it to say, as carefully as I approached the management of my disease, I often felt stranded on a deserted island.
If I was going to create a comprehensive program to affect the biology of my disease—or, at a minimum, supercharge my immune function—I would need to figure it out on my own.
And so began my journey to find sensible, evidence-based approaches to improving my overall health and quality of life. These were pre-Internet days. Libraries and bookstores held books and articles on the biology of CLL, and some pioneering works on the impact of lifestyle changes on disease.
Ross Pelton, RPh, CN, became my first ‘integrative health’ mentor. After reading Ross’s Alternatives in Cancer Therapy, I went to his home in San Diego for a consultation. He taught me various lifestyle approaches to increase my immune function and to create an internal environment less hospitable for cancer growth.
Over time, I would learn about the connection between malignant disease and nutrition, inflammation, oxidative stress, insulin-like growth factor, hydration, metabolism, stress hormones and more.
I became a pescatarian, focusing on a plant rich diet along with cold-water omega-rich fish. My exercise regimen was increased: more frequency and a lot more cardio. I installed a whole-house water filtration system, and I arranged for the drinking water supply at my home and office to be outfitted with reverse osmosis system. I began learning meditation and other forms of stress reduction.
Though I had taken various supplements since I was 17-years-old, Ross provided guidance around a regimen of supplements and fermented soy to which I closely adhered.
I worked with Ross for almost five years, before moving on to another, what I have coined, ‘nutritional pharmacologist’—a pharmacist who is also a clinical nutritionist.
I met Irwin “Irv” Rosenberg, RPh, CN in late 1999. Irv is the co-founder of what is now called Village Green Apothecary, a single-location sprawling ‘compounding pharmacy’ located across the street from The National Institutes of Health in Bethesda, Maryland. Irv reviewed my protocol and made several recommendations to fortify my program.
Irv invested significant time reviewing the literature for scores of natural products showing anticancer activity. He had relationships with all of the major pharma-grade supplement brands and a finger on the pulse of dietary supplement products and development pipeline. It would take a couple of months to review and understand all of the changes Irv recommended, and put those into place in early 2000.
Though my bone marrow had steadily become more involved with leukemic cells, my blood counts were stable and I felt quite well. I was living a full and active life.
That would change in the summer of 2003, a dozen years after my diagnosis. I became ill with a coombs positive hemolytic anemia. My hematocrit dipped to 22. My bone marrow was now infiltrated by over ninety percent leukemic cells, crowding out remaining healthy cells.
I made clinic appointments with my local oncologist, Dr. Kressel, MD, and the CLL specialists at Hopkins’ Sidney Kimmel Cancer Center in Baltimore. From there I went to Harvard for an appointment with Dr. Nadler at Dana-Farber.
The consensus was clear among my oncology team: I needed to be treated. Immediately. The standard of care had evolved some, and featured the promising new monoclonal-antibody Rituximab, in addition to a couple of chemotherapeutic agents and prednisone.
An autologous bone marrow transplant was no longer offered. Unfortunately, it had not been the curative intervention that people had hoped for. Everyone who had an autologous transplant for CLL would relapse.
The experts pushed for therapy to start within a week. Dr. Nadler’s words echoed in my head: “Glenn, you are heading over the top of the cliff; you need to be treated. Now”
In truth, I felt horrible. I had a constant low-grade fever, was incredibly weak, and woke drenched in a cold sweat three or four times each night. My quality of life was disintegrating. I had a hard time focusing. I needed relief.
Extending the Experiment
I told my physicians that I would not submit to conventional therapy. At least not immediately.
This decision was based on one simple fact: CLL was still considered incurable. The cocktail of monoclonal-antibody, chemo, and prednisone was essentially a palliative intervention—a Band-Aid until future treatment. It might put me into a partial remission for a year or two, but the leukemia was certain to return. And at that point it would most likely be resistant to the same drug therapy. I was also aware of the potential, lifelong side effects associated with the recommended schema.
I was now a dozen years into my healing experiment. Though I had an underlying severe auto-immune hemolytic anemia (AIHA), and a blood chemistry gone awry, my body was well-conditioned from my extensive integrative oncology regimen.
What are the limits of the body’s innate capacity to heal?Could I possibly positively affect my immune function to change the course of this acute situation?
I told my physicians that while I was not refusing conventional intervention categorically, we would work together over the coming weeks and monitor my blood. If I was unable to impact the course of the AIHA, I would agree to treatment.
My oncologists clearly felt I was wasting my time with this approach. However, I had nothing to lose; the standard of care was not curative. But it could deliver relief from my intense suffering. Still, I understood the relationship between my blood chemistry and my feelings well enough to hold off. I trusted that I’d know if and when to nod to that course of treatment.
Sabbatical and Revised Regimen
I took a sabbatical from the media company I was running, addressing only the most critical aspects of the business decision-making process. I then revisited my nutraceutical protocol with Irv Rosenberg, eliminating some agents and adding others, such as CLA, artemisinim, and a whey-based immunoglobulin product.
Though my anemia was severe, and I was warned about the strain it was having on my heart, I continued with my daily cardio routine of walking and swimming. The activity was short, but happened every day, all outside. It was during these walks and swims that I felt most relaxed. For me, this was the most powerful form of mind/body work. I am simply not the type to sit still and meditate. I tried that early on, and struggled to ‘turn off the noise’.
Achieving First Clinical Response
Complete blood counts were being done a couple times each week. After several weeks my counts stabilized. After 30 days, there was a clear trend showing improvement. After a couple months the CBC showed that my blood chemistry had completely normalized.
With that news, I had a flow cytometry done locally in order to take a deeper look at the blood. From a systemic view, there was no evidence of disease.
Some months later, as my full strength returned and I returned to working my previous, regular schedule, I went up to Harvard for a PET/CT scan, additional diagnostics, and a physical exam. All confirmed no evidence of disease.
I had achieved a partial remission without conventional treatment of any kind. While the systemic blood was clear of leukemia, a bone marrow biopsy revealed my marrow was still impacted by leukemic cells, though greatly reduced since my acute episode.
(NOTE: I would later learn that I am the only case in the medical literature showing reversal of AIHA without the aid of steroids or other drug agents.)
I remained in good health and in a partial remission status for six years, until 2009, when the disease recurred.
My white blood cells starting increasing; I was anemic, and my absolute lymphocyte count began to rise.
From a psychological standpoint it was a challenging period. But I was able to separate the emotional impact from how I was doing physically: asymptomatic and feeling perfectly well.
I would approach this news as I had dealt with my illness over many years. I revisited the current standard of care, which had virtually remained static since 2003. I reviewed every aspect of my protocol. I honestly reflected on the current amount of stress in my life.
Earlier, in the summer of 2009, I’d heard a lecture by Keith I. Block, MD and Penny B. Block, PhD. Thoroughly impressed by the presentation, I read Dr. Block’s book, Life Over Cancer. Within weeks I was at the Block Center for Integrative Cancer Treatment in Evanston, Illinois (since relocated to Skokie).
At that point I was not ‘sick’, but had a growing interest in research models. Specifically, I was interested in exploring non-reductive whole systems integrative oncology clinical study designs. There was interest at Harvard, and other institutes, to explore a program for CLL, and I felt that bringing in Drs. Keith and Penny Block to collaborate would be a terrific complement for the type of study I envisioned.
Later that year, when I relapsed, I didn’t have to give much thought about who I would turn to for help. It was at that point, in the fall of 2009, that I started working with Dr. Block as his patient. He would become my first integrative physician since the onset of my disease 18 years earlier.
Recalibrating the Investigation
Dr. Block and his team suggested significant changes to my nutraceutical regimen. And, unlike my work with Ross Pelton and Irv Rosenberg, the recommendations Dr. Block made were scientifically informed by my unique biochemical milieu—based on my macro and micronutrient levels, and various biomarkers connected to hormones, glucose panels, inflammatory load, circulation, and oxidative stress levels.
I adhered to the new supplement protocol for a number of months, but my white blood count continued to elevate, exceeding 50,000. Ten months into the new protocol, additional changes were made that included clinical dosing of green tea extract (EGCG). We followed the Mayo Clinic dosing of 4 grams daily, which was tolerated well in a phase I study.
Achieving Second Clinical Response—Complete Remission
After the green tea extract was added, over a relatively short period of time, 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 see Dr. Nadler in clinic at Dana-Farber. Although not clinically indicated, I insisted on a bone marrow biopsy. From a scientific standpoint it was well-indicated, and, again, I was quite curious if my actions had had any measurable impact on the marrow.
The pathology came back with the following note:
“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 by phenotype or morphology. A Harvard pathologist could not tell that I ever had CLL.
In January 2014, I repeated a bone marrow biopsy that showed I was in a complete, durable remission.
I make no claims as to how this complete remission was achieved. I applied a comprehensive, bio-synergistic approach to my disease for over two decades. My outcome does not prove causation.
I do not speculate on pathways, because I do not find it a useful practice. Was it modulation of gene expression, apoptosis, a sustained cytotoxic-like affect from clinical dosing of agents such as EGCG and turmeric? Did the cells simply normalize on their own? I will never know.
Furthermore, for this article, I have chosen not to share specificity of natural agents, dosing, and how they were informed. It’s not been my intention to be prescriptive, but to share my journey purely from a patient’s perspective. Mine is a story of empowerment and self-efficacy, with a simple message: we are each an n of 1.
Editor’s note: You can learn more about Glenn Sabin and his book “n of 1” at www.glennsabin.com