CLL / SLL Is Not Curable with Allopathic Medicine, but Are There Helpful Integrative Oncology Options?
When diagnosed with CLL in 2005 and told there was no cure and no treatments that even prolonged life, I decided to explore integrative oncology approaches. Naturally, I looked “outside the box” of Western medicine when inside the box, my prognosis was so dismal. All that was offered was chemotherapy, which just wouldn’t have worked for my high-risk chronic lymphocytic leukemia (CLL).
So soon after my diagnosis, while I was crisscrossing the country in search of the best possible CLL doctors and care and reading everything I could on CLL / SLL and immunity, I was also researching non-allopathic approaches.
I changed my diet to raw low glycemic vegan, juiced everything, took too many bitter shots of wheatgrass (even grew our own), and countless other supplements and herbs that at times added up to about 100 pills a day, including high dose green tea extract. I had dozens of folks praying for me and offering long distant healing and healing through touch, visited mystical vortexes, increased my exercise, meditation, and sleep. I even saw a few renowned traditional Chinese medicine (TCM) doctors for acupuncture and foul-tasting concoctions of weird Chinese herbs. Later on, I added cold water plunges and intermittent fasting to my routine.
Today, I still try to get my MEDS (meditation, exercise, diet, and sleep) into me daily. I eat a healthy vegan diet, mostly cooked, but lots of raw nuts, seeds, salads, and fruit daily, supplemented with delicious Alaskan salmon at least twice a week. I fast 16 hours out of almost every day and occasionally much longer, and still take some supplements. I often enjoy long walks in nature, swimming in the summer, and pumping iron with a hard-driving trainer twice a week. I am not as good about doing high-intensity interval training, and too often I don’t get as much sleep or meditation as I would like.
But I am blessed to do meaningful work and to have so much love in my life. That makes everything so much better.
Did My Integrative Oncology Efforts Work for Me?
Yes and no. Now, out nineteen years, I have certainly beat the one-in-twenty odds I had of living five years post-diagnosis. Although, I would have to credit that to the luck of new treatments appearing just at the time I needed them and my smart and, at the time, risky choices of grabbing the right therapy when it was early in development in three different phase 1 clinical trials.
Honestly, none of my alternative, integrative oncology, practices ever slowed my aggressive CLL.
PCI-32765 (later known as ibrutinib), JCAR-014, an experimental CAR-T that gave birth to liso-cel, and current clinical trial of epcoritamab have repeatedly knocked back my CLL and saved my life. These treatments have allowed me to see my family grow up and build the CLL Society.
However, lifestyle modifications and herbs have also helped my life in other ways. I have done much better than most with my “experimental” therapies. I have largely dodged the cardiac, renal, hepatic, neurologic, psychologic, or infectious complications often seen with my treatments. I am arguably in better shape today than when I started this wild adventure 19 years ago. It’s tough enough to have cancer; who needs, in addition to having it and its treatments, complications from the heart or kidney or other issues? I do not doubt that I can largely thank my healthy lifestyle for avoiding a “double whammy” medical complication and suspect my judicious use of supplements plays some role. Which exact lifestyle changes and supplements were critical to my success is far from clear.
If you plan to incorporate integrative medicine into your care, do your homework and inform your healthcare team of your choices. I believe it helped me around the edges of my disease, but it has also helped a few drive their CLL into remission and sadly hurt some others badly. Choose wisely.
To read more about my CLL journey, visit my blog which detail my progressions and remissions, my transplant, my lifestyle choices, and my clinical trials.
Stay strong. We are all in this together.
Brian
Brian Koffman MDCM (retired) MS Ed (he, him, his)
Co-founder, Executive VP, and Chief Medical Officer
CLL Society, Inc.
