Ask the Doctor Question:
Our mother has had CLL for almost 20 years and has not yet needed treatment. We recently had her tested (from two different labs) and she is showing zero immunity to the COVID vaccine. What should be the steps moving forward? Should she get revaccinated? We would like to come up with an action plan. Finally, how do we join your group? We have heard such wonderful things about it.
Answer: We don’t have any membership process, but we encourage you to become as familiar with our website as you can to learn about the numerous free programs and services we offer for our patients and their caregivers. Since you mentioned it, we have numerous fundraising campaigns throughout the year and would love it if you would jump on board with us! We are much smaller than LLS, but we pack a strong punch for our specific community because we only focus on CLL. Nothing else.
While the news of your mother not responding to the vaccine is very discouraging, there are many of us in the same situation. We want to encourage you to continue hanging in there just a while longer! We believe better things will be coming, possibly as soon as the end of the year. Specifically, preventative monoclonal antibodies are looking very promising for CLL patients. Unfortunately, emergency use authorization has not been given to any companies producing these monoclonal antibodies just yet for COVID prevention. You can (and should) request them immediately if she becomes infected though post-infection is the only “use” they have received approval for so far. So that is one thing you can have as part of your plan – to know where the nearest infusion center is that provides this treatment since timing will be of the essence.
In the meantime, we are still urging CLL patients (regardless of vaccine and/or antibody status) to have continued diligence by wearing a mask in all situations. If she absolutely must go out in public, a tightly fitted N-95 is highly recommended. Also, she needs to continue to adhere closely to social distancing, and keep up diligent hand hygiene efforts, especially now that the general population is unmasking. We also strongly urge that all household and close family members are vaccinated if possible.
There are currently many researchers with expertise in blood cancer who are looking at this very subject and multiple studies are finally being performed worldwide. We should be hearing more about possible new therapies and early results of clinical trials that include the immune compromised population later this year, so please stay tuned to CLL Society’s website, specifically the COVID section which can be found here:
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Thank you for advocating for your mother! Keep up the great work.