Question:
Several weeks ago, I was diagnosed with CLL. Today, my oncologist, told me I am in Stage 1. Ironically, my sister was diagnosed with CLL about two-years ago. She is 81 and I am 73. She has started treatment. We were raised in Martinez, California – Shell Oil Company has (had) a refinery about one-mile from our house. There were at least two other refineries in the east Bay Area at the time. I have four questions:
- Do you know of a genetic link regarding CLL?
- Do you know of a link between chemical plants/oil refineries and CLL?
- My oncologist/hematologist has suggested I look at genetic counseling. She says it will not help her treat my disease, but it may help provide information for our three children. What are your thoughts about genetic counseling for CLL patients?
- I had both doses of the Pfizer vaccine. Given the Delta variant, do you have any guidance about COVID, vaccines, and our immune systems? My doctor says the data is limited, so be cautious. What about church, restaurants, travel, etc.?
Answer: Chronic lymphocytic leukemia has not generally been considered to have an inherited genetic basis. However, there is indirect evidence that a small subset of CLL cases may be ascribed to the inheritance of an autosomal dominant gene.
- No known link specifically between chemical plants/oil refineries, but there has been a link to those who were in Vietnam due to exposure to Agent Orange.
- There is a difference between genetic testing and the biomarker testing for CLL patients that we recommend you 100% get before receiving any CLL treatments. This is because your biomarkers can determine whether or not certain therapies will work, or not, for you ahead of time. Genetic testing is extremely expensive and won’t be very helpful to your children when it comes to predicting whether they will have CLL.
- Thank you for getting vaccinated! Unfortunately, it is time for CLL patients to hunker down again (if they can) and be extremely careful! We just put out several articles specific to that question which we would encourage you to read. Please consider having a detailed COVID plan in place. Delta 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 recently that we will share:
- 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/
