August 2019
I was diagnosed with CLL in June of 2014. Like most CLL patients, I was originally placed on watch and wait, but my cancer progressed aggressively. After only 17 months, my WBC had exploded higher (it peaked at 350,000 cells per cubic millimeter of blood, up from 24,000 at diagnosis). I was prescribed FCR and, not knowing anything about genetic testing or targeted therapy, I followed the advice of my community hematologist and went ahead with treatment. In hindsight, this was a mistake. The chemotherapy was brutally difficult, and my cancer did not respond well. I switched oncologists, underwent extensive genetic testing, and discovered my CLL was 17p deleted, had complex karyotype, and was unmutated. If I had known this information beforehand I would not have undergone FCR therapy. Luckily, I was quickly enrolled in a clinical trial and I am currently 36 months on Acalabrutinib monotherapy. I have responded very well but I watch my genetics carefully, looking for any sign of imminent relapse. I am personally very grateful for all the help I’ve received from the CLL Society during my ordeal. Test before treat is not just a saying – it can literally save your life!
Tammi G
