Ask the Doctor Question:
I was recently diagnosed with CLL/SLL after a core needle biopsy of a lymph node from my arm pit. I have seen two CLL specialists and been staged 2-3. I have had extensive blood work, including FLOW and FISH. My doctors have said that “wait and watch” is the appropriate course of action at this time. I have read that IGHV mutational status is an overall good predictor of prognosis. How is this test performed? Why is this test not routine? Is it appropriate for me to request it?
Answer: We have a lot of information on your questions below under the “Test Before Treat” section of our website that can be found here: https://cllsociety.org/cll-101/test-before-treat/. It is always appropriate to advocate for your best care.
You might double check to see if they performed your IgHV test as part of your initial work up alongside your other FISH and Flow Cytometry testing. If they did not, it is because technically testing IgHV only needs to be performed once, so it is typically performed prior to initiation of your first treatment. Since you are still in watch and wait, they may just be waiting to perform it until that time comes. IgVH mutation status almost never changes over time, so it is generally not recommended that it be retested.
Knowing your IgHV status is essential to know which treatments will work (or not) to combat your type of CLL more so than for prognosis. It is important because we know that patients with a “mutated” IgVH immunoglobulin do much better with FCR based therapies than those who are unmutated. Generally, only patients who have mutated IgVH should consider FCR based therapies. Here is a link to a quick one-pager that helps to lay out all of the testing you need prior to both initiation of treatment and prior to any subsequent treatments: https://cllsociety.org/docs/CLL%20ToolKIT%20Test%20Before%20Treat%20Page%20v1R1%20012321_Updated%20PO%20Box.pdf