I realize that quite a few subscribers to my blog are affected by chronic lymphocytic leukemia (CLL); many signed up after reading my book, n of 1.
Your personal connection to CLL may be the diagnosis you received, or relate to a spouse or other loved one’s diagnosis.
Though treatment options are still not perfect, they have greatly improved, as have the ways to identify the likely course of each person’s disease.
Before I feature Dr. Brian Koffman and the CLL Society, and express how the organization can support your journey, I’d like to share a bit about the evolution of CLL treatment and management during the last 25 years.
When I was diagnosed, in 1991, CLL was essentially tested for and treated as ‘one’ disease without variation. There were no prognostication tests. I was offered an experimental bone marrow transplant, or the new and novel approach of ‘watchful waiting’.
The chemotherapy cocktails in 1991 were largely ineffective, tending to produce short remissions. Bone marrow transplants available at that time were proven ineffective. Watchful waiting—which I coined ‘proactive observation’—proved to be quite powerful for my particular situation as I never did receive chemotherapy, immunotherapy, or a bone marrow transplant.
Years later, when the monoclonal antibody rituximab arrived to complement chemotherapy regimens, there was a marked improvement for many with CLL, but most patients relapsed over time.
And all along my journey, high-quality resources specific to CLL and the CLL community were hard to find…
The Here and Now
CLL is still not considered curable for most cases. However, newer, targeted therapies have come into their own as standard of care for first-line treatment. These therapies are being used to treat and manage CLL as a highly treatable, long-term chronic condition.
There are several new and promising targeted agents in the drug development pipeline, some showing increased effectiveness using combination therapies.
CLL consists of a subset of variations that indicate a patient’s prognosis. There are typically slower-growing types, and there are those that can be quite aggressive and fast-growing.
The reality is that each person’s CLL is different and, at such time as treatment is deemed necessary, should be individualized. Although things are moving fast in the advancement of CLL treatment—in particular, treatment tailored to the individual patient’s specific type of disease—not all oncologists and hematologists are up to date with the latest science and treatment of CLL.
So what is happening in terms of CLL clinical trials and prognostication methods to inform today’s precision medicine treatment options, and who is involved?
Meet Dr. Brian Koffman and the CLL Society
Dr. Brian Koffman is a family medicine physician and co-founder and medical director of the CLL Society. He is also a 12-year CLL survivor.
Since his diagnosis in 2005, Dr. Koffman has tirelessly dedicated himself to educating people with CLL. With a worldwide following, his CLL-specific blog now reaches over 20,000 readers. Put simply, there is no one today more dedicated or advocating harder for the CLL community than Brian Koffman.
The CLL Society is arguably the best place on the web to learn about all things CLL. The latest science, educational programs, clinical trial updates, and emerging therapies can all be found on this incredible site.
From CLL basics—including a glossary of common medical terms—to a deep dive into leading-edge innovation in the field, there is much to learn on this empowering educational platform.
CLL Society has also created a number of CLL support groups that are growing in locations and attendance. Many upcoming meetings of existing CLL specific support groups and CLL educational opportunities are available across the country.
I urge all the CLL clients I coach, and anyone affected by CLL, to utilize the incredible CLL Society resources on CLLsociety.org, and to read Dr. Koffman’s blog, in order to become more empowered patients and survivors.
Active in the industry, professionally and personally, I will continue to share relevant updates with you.