Chronic Lymphocytic Leukemia - CLL: When Being Fully Vaccinated for Covid-19 Doesn’t Mean Fully Protected

[KatieBlue]

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Recent studies have shown that the Covid-19 vaccine provides less protection for those with blood cancers, such as CLL, compared with healthy individuals. In some instances those with CLL and certain treatments have even lowered protection from the vaccine against the virus. More details can be found here:

Efficacy of the BNT162b2 mRNA COVID-19 Vaccine in Patients with Chronic Lymphocytic Leukemia available on the ASH (American Society of Hematology) publications website: ashpublications.org/blood/a...

Studies suggest people with blood cancers may not be optimally protected after COVID-19 vaccination by ASH:

eurekalert.org/pub_releases...

At the same time, those of us with CLL also have an increased risk for severe Covid-19 disease, including mortality.

So where does that leave those of us with CLL? Unfortunately, with more questions than answers. Research is being done on this all over the world, from how to get the best response to Covid-19 vaccines for CLLers, to how to accurately measure vaccine response. Organizations such as The CLL Society, Blood Cancer UK, and the Leukemia and Lymphoma Society are working to help find answers. This post will take a look at some of those questions and what we currently know.

Q: I have CLL and am considered fully vaccinated. Am I as protected against Covid-19 as those who were in the vaccine trial of the vaccine I received?

A: The initial trials did not include individuals with CLL and other immuno compromised conditions. The research article above (Efficacy of the BNT162b2 mRNA COVID-19 Vaccine in Patients with Chronic Lymphocytic Leukemia explains that the antibody response to the Pfizer mRNA Covid-19 vaccine in those with CLL is "markedly impaired and affected by disease activity and treatment." The article continues, "In patients treated with either Bruton's tyrosine kinase inhibitors or venetoclax ± anti-CD20 antibody, responses are relatively low." Results are expected to be similar for those with CLL regardless of the type of vaccine.

Q: We've been dealing with Covid-19 more than a year-- now that I'm vaccinated, can I at least ditch the mask?

A: It is recommend that those with CLL continue mitigation measures such as masking, social distancing, shielding, avoiding large crowds, and good hand washing practices, even after vaccination.

Q: After getting the vaccine I felt run down and had muscle aches, fever and chills. Doesn't this mean my immune system is responding to the vaccine and I have protection against the virus?

A: No. There is no correlation between having (or not having) a reaction to the vaccine and vaccination efficacy (or lack of efficacy).

pbs.org/newshour/health/wha...

Q: How do I know how protected I am from getting Covid-19?

A: This is one of the most-asked questions once learned vaccine efficacy is lower for CLLers. Unfortunately there is no good measure of our immunity at this time. There are some tests available done to assess one's antibody response to the vaccine, but currently no one actually knows what the results mean with regard to protective immunity levels.

One of the well-known testing labs in the US, Labcorp, has this description for its SARS-CoV-2 Semi-Quantitative Total Antibody test: “Values generated with this assay cannot be used to determine whether or not an individual has developed protective immunity against infection and cannot be directly compared to other assays until a universal standard is established for assay calibration.”

The Labcorp test results include this disclaimer: “It is yet undetermined what level of antibodies to SARS-CoV-2 spike protein correlates to immunity against developing symptomatic SARS-CoV-2 disease.”

That said, individuals are opting to get tested for their antibody response. Some are choosing to participate in the Leukemia and Lymphoma Society (LLS) Covid-18 antibody research study in the US, or in UK studies sponsored and run the University of Birmingham. Still others are paying for the test out of pocket. The LLS and the University of Birmingham will arrange the testing. If you decide to get tested, you will want to be sure to get the SARS-CoV-2 Semi-Quantitative Total Antibody or SARS-CoV-2 Total Antibody, Spike, Semi-Quantitative test.

Q: I got the SARS CoV2-Semi-Quantitative Total Antibody test. The results are 250 and it says I'm positive for antibodies. That's really good, right?

A: Since no one currently knows how to interpret the test results, whether someone has great results or terrible results is also unknown. The universal standards aren't there yet. Yet being the operative word. Hopefully as more data is gathered and more research done, we will get a better sense of what the tests mean or a better measures of immunity will be found. Further, antibodies are only one aspect of the immune system. Researchers are looking at the whole picture.

Regardless of your results, please bear in mind the following from the CLL Society: “there are no data in CLL patients to suggest that presence of antibodies confers protection, or even lack of antibodies means no immunity.”

Q: I got the SARS CoV2-Semi-Quantitative Total Antibody test. The results are 20 and it says I'm negative for antibodies. That's really bad, right?

A: See answer to the question directly above.

TL;DR: Until we know more of the answers and until there are better measures of immunity available to the public, those of us with CLL— even those who’ve gotten a positive semi-quantitative test result— need to know that the vaccine likely has not protected us as well as a healthy, vaccinated individual. Please don't be swayed into a false sense of security because you are fully vaccinated or because you tested positive for antibodies to the SARS-CoV-2 spike protein. Alternatively, don't be discouraged if you are vaccinated and tested negative for antibodies SARS-CoV-2 spike protein. There is more to the immune system than antibodies. Research continues and we are all looking forward to the day when we have the answers we need.

Date posted: 17th May 2021