Ask the Doctor Question:
I think it was on the CLL Society site that I read that IV chemo is NOT the current recommendation for initial CLL treatment. Am I remembering correctly?
Answer: Yes, you are absolutely correct. There are some rare instances for those who are diagnosed with CLL when they are very young and otherwise healthy that chemotherapy may be appropriate. But generally, with the development of all the new novel therapy treatments within the past few years that have far less side effects and oftentimes have better outcomes than chemotherapy, it should no longer be a standard treatment for the majority of CLL patients.
If your physician has recommended chemo as an option, we recommend two things:
A. Make SURE you have had all the appropriate biomarker (genetic) testing performed first, as this is an easy way to determine whether chemotherapy will even work or not on your particular form of CLL. You can read more about this in our Test Before Treat section of the website found here: https://cllsociety.org/cll-101/test-before-treat/and a very helpful document that you can print off and take to your healthcare provider on the necessary testing before each new therapy is started can be found here:
B. It is never a bad idea to get a second opinion, especially from a CLL Expert. We have a free program that anyone living in the US is eligible for called our Expert Access™ Program. It does take about 30 days to obtain all your medical records. But once that part is completed, a CLL Expert will review all your lab results and medical history-then arrange for a 30-minute virtual appointment to go over the findings and what treatment or additional testing (if any) they would recommend. They will write up a report with their recommendations for you provide to your healthcare provider for review. You can find more information on that program here: https://cllsociety.org/cll-society-expert-access/