We suggest you BOOKMARK this page and visit it often. All content was current as of the date it was published.
In science and in medicine, information is constantly changing. Published content may become out-of-date as new information and data emerge.
Here is a list of personal reflections on what we know and don’t know about COVID-19 and other infections that all immunocompromised folks might want to consider moving forward into the brave new world of increased respiratory infection risk.
Lower COVID-19 Mortality and Hospitalization Rates in CLL and MBL: Do Repeated Vaccination and Anti-Viral Therapy Help?
The overall hospitalization rate was only 5.2%, and the mortality rate (MR) was 1.3% in COVID-19-infected patients with chronic lymphocytic leukemia (CLL) and monoclonal B-cell lymphocytosis (MBL), a CLL precursor.
It’s been a while since our last COVID-19 Update in May when the end of the public health emergency was declared, resulting in a severe lack of funding for tracking the disease metrics
Living with CLL
If you are a veteran, active-duty military, or a care partner and would be interested in joining a CLL Society Support Group for veterans / active-duty military, please complete this brief survey to indicate your interest in participating and help us identify the best time for meeting.
CLL Advocate Network (CLLAN), a global network of CLL patient organizations including CLL Society, surveyed nonprofits around the world to understand what support services and resources are offered to individuals impacted by CLL / SLL. The information collected was used to build a global resource hub. Patients and care partners can access the resource hub for free on the CLLAN website.
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?
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.
SPECIAL FEATURE: The CLL Society YouTube Channel
CLL Society has launched a YouTube channel! We are so excited about this opportunity to connect with our community in a new way and reach a wider audience of individuals impacted by CLL and SLL. The CLL Society YouTube channel will share engaging interviews with healthcare professionals, inspiring patient stories, and feature all our educational programs.
Visit and subscribe to our YouTube channel to stay up-to-date on video content from CLL Society as soon as it is available!
ADVOCACY AND POLICY
CLL Society applauds the FDA for approaching this long standing problem with flexibility that allows patients access to potentially lifesaving medications sooner, while still requiring drugs be appropriately studied in all populations that might benefit.
Join CLL Society and Dr. Veronica Dioverti as we discuss COVID-19, as well as RSV, influenza, and pneumonia. With colder weather and more time spent indoors, respiratory infections become a greater risk. We will review infection control measures, treatment options, vaccinations, and special precautions that are necessary to help mitigate risks for the immunocompromised. The presentation portion of this webinar will be brief, with the remainder of the event dedicated to answering audience questions. Learn more and register here.
If you missed the recent Q&A-style Facebook Live Event, “Ask Me Anything” with Dr. Sameer Parikh and patient advocate Jeff Folloder, you can catch the on-demand replay of here!
Watch Why Policy Matters – Understanding How Your CLL / SLL Journey is Affected to learn the importance of policy decisions for individuals with chronic lymphocytic leukemia and small lymphocytic lymphoma, CLL / SLL.
If you missed the recent webinar, Beyond the Diagnosis: Surviving and Thriving with CLL / SLL, you can catch the on-demand replay of here!
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).
MRI Imaging Shows Changes to Heart Muscle in Some Patients on Ibrutinib for CLL and Other Blood Cancers
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.
The study looked at 5-year overall survival (OS) in treatment naïve CLL (chronic lymphocytic leukemia) patients who were unfit or > 65 years old compared to an age and gender-matched general population (AGMGP) without CLL.
Equitable Access and Regulatory News
New NCCN Guidelines Recommend Pirtobrutinib for Second- and Third-Line Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma (CLL / SLL) Therapy
Pirtobrutinib is a new BTK inhibitor that binds differently (non-covalently) to BTK than the three approved BTK inhibitors, ibrutinib, acalabrutinib, and zanubrutinib.