MONTHLY QUIZ:  All the following are true about CLL / SLL except: All with CLL / SLL, even those off therapy or who’ve never been treated, are immunocompromised. Some CLL / SLL patients have lived more than 50 years with their cancer. Many CLL / SLL patients will never need treatments and will have a normal life expectancy. Nearly all who do need treatment for their CLL / SLL have a shortened life expectancy. As CLL / SLL patients are living longer, complications such as second cancers (including Richter’s Transformation and MDS (Myeloid Dysplastic Syndromes) and infections are starting ..read more

Hippocrates said: “Art is long, and life is short.” The creation outlives its creator. How does that translate to my work and the work of the CLL Society? Impact on those with chronic lymphocytic leukemia / small lymphocytic lymphoma (CLL / SLL) A good friend reviewing my recent work for CLL Society said the word he chose to describe me was impactful. He remembers that I, with others from CLL Society, had led the charge to save an imperfect but potentially helpful CLL drug (used chiefly for short-term bridging to other therapies) by organizing a persuasive letter to the FDA of 40 experts. That ..read more

I have been mostly silent on my blog as there has not been much to report related to my phase 1 clinical trial for my relapsed chronic lymphocytic leukemia (CLL). No news is good news. Changing the Pace of My CLL/ SLL Treatment After 12 weeks of weekly subcutaneous shots in the belly, my 4th cycle switched to every second week two weeks ago. I was thrilled to skip a weekly trip to City of Hope for the first time since August, though I will more than makeup for it with three visits next week: One for the usual shot of epcoritamab and the associated lab and EKG. One for my IVIG (intravenous imm ..read more

Authored by Dr. Brian Koffman The Bottom Line: Mutations at BTK C481 are the most common mutations seen in pooled trial data of chronic lymphocytic leukemia (CLL) patients on ibrutinib, leading to resistance and progressive disease (PD). Other resistance mutations include ones seen in PLCƔ2, which are much rarer (<5%), and BTK mutations affecting the L528 location that develops in < 1% of patients on ibrutinib. That compared to ∼54% reported with zanubrutinib. Understanding these mutations and how well different BTKi do with each can help us guide the choice of BTKi and appropriate seque ..read more

Authored by Dr. Brian Koffman Sometime late in September 2023, someone whose life has been touched by chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL) wanted to view a helpful page on CLLSociety.org, and their click was the five millionth visit to our website. This is a shared milestone, not a stand-alone CLL Society accomplishment, but more a testament to the strength of a CLL / SLL community that is interested in better lives for themselves and others. What the CLL Society Website Offers Our website has always been the backbone and the hub for all the activities and ser ..read more

By: Susan Bottega As a caregiver to my husband who currently has three cancers, I can truly say that the most significant help I have gotten has been from CLL Society. The life of a caregiver becomes significantly more lonely as the disease progresses. You start out just fine and probably remain so if the disease does not progress intensely. This, however, was not the case for my husband. His disease started to advance quickly, and he developed many complications as time went by. This changed my life in many ways as a caregiver.   My first change came about as I delved into the scien ..read more

The CLL Society COVID-19 Action Plan is brilliant! I’ve kept my filled-out copy of the COVID-19 Action Plan pinned to my home office bulletin board for the past couple of years. It seemed superfluous since I have a very responsive oncologist who is a CLL expert.  Then last month, after all my years of caution, I caught COVID-19 on a camping trip with friends. The fever hit me fast, and I was really out of it. I was wandering around like a zombie, not knowing what to do with myself. My doctor was on a long flight and didn’t return my call for several hours. Having the Action Plan ready hel ..read more

Medically Reviewed by: Dr. Brian Koffman The Bottom Line: A newly published paper in JAMA Oncology found that among cancer patients with suspected ibrutinib-related cardiotoxic effects, the presence of heart muscle injury and scarring is high, and this is associated with an increased risk of developing future cardiovascular adverse events. Who Performed the Research and Where Was it Presented: Dr. Benjamin Buck from the Ohio State University and colleagues published their findings in JAMA Oncology in 2023. Background: Ibrutinib is a Bruton tyrosine kinase (BTK) inhibitor that has revolutionize ..read more

Authored by Dr. Brian Koffman Bottom Line: Epcoritamab, a novel subcutaneous (an under-the-skin injection) CD3xCD20 bispecific antibody, resulted in a 62% response rate in high-risk, difficult-to-treat relapsed or refractory (R/R) CLL patients that so far appears to be durable. Who Performed the Research and Where Was it Presented: Dr. Arnon Kater, Amsterdam UMC, Cancer Center Amsterdam, University of Amsterdam, Amsterdam, Netherlands, presented the results at iwCLL 2023 (international workshop on CLL) in Boston, MA. Background: Despite the progress in CLL therapies, new therapies are needed f ..read more

Authored by Dr. Brian Koffman The Bottom Line: For most CLL (chronic lymphocytic leukemia) patients who have received six years of continuous ibrutinib treatment, the levels of residual disease decrease or remain stable for the subsequent 6-12 months after stopping ibrutinib. Who Performed the Research and Where Was it Presented: Andy Rawstron, PhD from Leeds, UK, and colleagues presented the results at iwCLL 2023 (international workshop on CLL) in Boston, MA. Background: Bruton’s tyrosine kinase inhibition (BTKi), including ibrutinib (IBR), has significantly improved progression-free survival ..read more