This content was current as of the date it was released. In science and medicine, information is constantly changing and may become out-of-date as new data emerge.
In this issue of the Alert, we deliver updates on a few things you may find helpful.
CLL Society’s New Mailing Address
CLL Society has a new mailing address! Please make a note of it and address all correspondence there. If your financial institution mails your charitable donations, please share CLL Society’s new address with them. Thank you!
1454 Melrose Ave
Chula Vista, CA 91911
COVID-19 Action Plan
As the COVID-19 pandemic continues, the compromised immune status of CLL patients mandates that we stay well-informed in order to plan ahead and strategize how we will obtain the best possible care, should we become infected. CLL Society’s complete COVID-19 Action Plan can be found here. Build your package and keep it by the front door. Tell your caregiver and others about it. Don’t leave home without it!
New Addition to Our COVID-19 Action Plan
Please take note of the newest form that CLL Society has added: Checklist for Known Exposure to COVID-19 Without a Positive Test Result, found here.
Another Helpful Tip
If you need to travel, before leaving please use the NIH map provided in our COVID-19 Action Plan and input the zip code of your destination city, so that you will have a solid plan to know exactly where you can go if you need to receive monoclonal antibodies while out of town should you have known exposure or become infected. We suggest double checking by phone before traveling. Availability of the monoclonal antibodies can be volatile.
Eight Recent COVID-19 Articles
It’s not easy to stay on top of all that is published about COVID-19 and its impact on CLL patients. Dr. Brian Koffman summarizes eight recent articles on research and guidelines to help keep you up to date. Please find this information here.
We recorded last Friday’s COVID-19 Virtual Community Meeting: The Delta Variant and Staying Protected. Stay tuned for the on-demand recording! We did our best to answer as many questions as possible during this event. If we did not have time to answer your question during the event, please feel free to resubmit to Ask the Expert.
Do You Need a Free 2nd Opinion From a CLL Expert?
Patty Koffman and CLL Society’s Expert Access™ Program are in the news. I encourage you to please read my write-up about CLL Society’s Expert Access™ Program for Real World Health Care, a publication of Health Well Foundation and revisit whether a free, expert 2nd opinion on the care you are receiving for your CLL would be helpful to you. To qualify, you only need to have a diagnosis of CLL, be living in the United States, and not currently be in the care of a CLL expert.
Upcoming CLL Society Event
Join us on October 15th for the CLL Society Ed Forum: The Right Tests at the Right Time to learn the basics about testing across the span of your CLL journey. Dr. Ryan Jacobs will explain which tests are appropriate at the time of diagnosis, and which might be harmful, not useful, or should be avoided altogether. Dr. Brian Hill will explain which tests you absolutely must have prior to starting your first treatment and identify those that should be repeated before every subsequent treatment. Learn to avoid the wrong treatment! We think that you will discover that Dr. Hill’s recommendations are right in step with CLL Society’s Test Before Treat™ campaign. CLL Patient Advocates Tammi Garrett and David Klausmeyer will share their personal stories about the importance of getting the right tests prior to choosing treatment. Finally, learn how CLL is monitored over time, and how the evolving role of MRD (measurable residual disease) testing may help determine when to stop CLL treatment.
Special Article on Anemia
Anemia is a common problem in CLL and may be an indication to start treatment. It is not always well understood or managed. The classic symptoms of anemia are fatigue, shortness of breath with exertion, and lightheadedness when getting up quickly. Too many patients self-treat with iron and other supplements that may not only delay proper care but can cause long term problems. Please become informed about this common complication of CLL. Learn more here.
CLL Society Support Group Meetings Coming Up!
CLL Society Support Group meetings have moved to a virtual platform for most locations due to the threat of coronavirus. Support group members will receive an invitation to register for the meeting from the support group facilitator. If you are new to the group, please contact the RSVP email for the Support Group in your region. Once it is safe again, we will resume in-person meetings.
Visit the individual event listings on our website for the most up-to-date information on all CLL Society Support Group meetings.
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