Ask the Doctor Question:
I am Stage 0, three years after diagnosis, COVID vaccinated 2/2021. I began loosening the strict isolation I had maintained a month after being vaccinated, only to learn that the vaccine might not protect me (own research, not from hematologist/oncologist). I immediately requested an antibody test, but my hematologist refused. My internist twice prescribed a nucleocapsid test which, of course was negative. A friendly neighbor MD finally arranged a Spike protein test which shows some reaction to the vaccine (181) and am aware that the test is not recommended as a decision-making basis for COVID protocols.
During a recent consultation with my hematologist, I expressed concern about the potential risk due to my CLL diagnosis. I repeatedly asked questions about prophylactic monoclonal antibody treatment, booster shots, etc., and how I could be assured of access if approved and if I qualified. The response was basically “I don’t do COVID” and was told to see an immunologist. As a patient, am I unreasonable to expect a hematologist/oncologist to be on top of and ready to assist patients when such unusual circumstances as this pandemic place them at risk, even if the cause may be peripheral to a standard hematology practice?
Answer: Sadly, you are not alone in your experience. In fact, Blood Cancer UK just completed a survey which showed nearly 80% of blood cancer patients were not even told by their healthcare providers that there was a high probability that their vaccines may not have produced an adequate antibody response. That number is shocking to us! But anecdotally, we have heard many reports of this same exact thing happening.
Our first comment would be to make sure you are seeing a CLL Specialist! You can find one here:
Most all CLL Specialists are on board now with ordering the Spike protein for their patients so they can at least have some idea of their antibody status and have a great deal of knowledge regarding COVID as it pertains to CLL now.
The good news is you have had a decent antibody response compared to many other CLL patients! The not-so-great news is that there is no way to tell what percentage of protection or immunity you have at this point in time, based on your results. No one does.
It is important to take into consideration that the maximum value for the Spike antibody response can be upwards of 2,500. So, the 2,500 value is clearly greater than yours which was at 181. While we know that the greater the number equates to more antibodies, at this time we do not fully understand if a lower antibody value equates to a lesser level of protection should you become infected with COVID. It’s true that some immunity is better than no immunity at all, but your low count is unfortunately not ideal.
CLL Society has been urging everyone with CLL, regardless of your vaccine and/or antibody status, to continue wearing a mask in all situations. Also, please continue to adhere closely to social distancing, and keep up with diligent hand hygiene efforts, especially now that the general population is unmasking after the latest CDC guidelines. We also strongly urge you to have household members vaccinated if possible. And please consider having a detailed COVID plan in place. It is so much more infectious with a reported 1000 times higher viral load and requires much less time than the previous 15 minutes of exposure to become infected. There are several articles that we have just published this week for you to look at:
- https://cllsociety.org/2021/07/cll-societys-recommendations-for-covid-19-vaccinated-chronic-lymphocytic-leukemia-cll-patients-based-on-the-cdc-updated-considerations-for-people-who-are-immunocompromised-and-on-the-underl/
- https://cllsociety.org/2021/04/explaining-to-family-and-friends-why-the-cdc-guidelines-for-those-vaccinated-against-covid-19-do-not-apply-to-chronic-lymphocytic-leukemia-patients/
- https://cllsociety.org/2021/07/covid-19-plan-checklists-for-chronic-lymphocytic-leukemia-cll-preparing-for-pre-and-post-covid-19-exposure/
The true interpretation of the Spike antibody test will become known over time as we learn the association between these results and how it correlates to the chance of still getting infected with COVID in the near future. There are currently many researchers with expertise in blood cancer who are looking at this very subject and performing studies. We should be hearing more about this subject in the coming months.
