Sad news.
CLL Society just lost a member due to a fatal fungal blood infection that was not identified until the day after he passed as the test was not drawn until the 4th day he’d been in hospital with fever and chills.
His wife reached out to ask us to remind our community that all CLL patients are immune suppressed, and that vulnerability extends far beyond our increased risk for poor outcomes from COVID-19 to our need to be vigilant for infections from organisms such as fungi that rarely cause problems in folks with normal immunity.
When a CLL patient has an infection, the healthcare team needs to look beyond the usual suspects such as the common bacterial and viral pathogens but also consider fungi and yeasts. Tests for fungal infections are not part of the standard infection workup and will be missed if only routine testing is ordered. Also, they need to be ordered early as they can take several days to read out.
The risk of these “opportunistic” infections may be particularly high for folks during their first six months of ibrutinib therapy as explained in this Blood commentary in which Dr. Kerry Rogers from OSU summarizes several trials: Ibrutinib and fungus: an invasive concern. That was exactly the circumstance with this patient.
Sadly, this again reinforces that CLL can still be deadly. It is the infections and second cancers, not the CLL itself, that often shorten our lives.
It also reminds us of the advantage of being cared for by CLL experts as the unusual risks associated with our rare orphan disease can be overlooked by those who do not care for a large volume of CLL patients.
Chronic lymphocytic leukemia is a cancer of the immune system. This needs to be kept front and center for the patient and healthcare team during any treatment, especially during any critical care.
So sad.
Stay strong. We are all in this together.
Brian Koffman MDCM (retired) MS Ed
Co-Founder, Executive VP, and Chief Medical Officer
