In an instant, my life changed. “You have chronic lymphocytic leukemia (CLL). There is no cure but patients can live for several years.” These were the words I received a few years ago at the age of 39 with three small children. I have been on an educational journey of self-discovery, cancer research, and patient advocacy ever since.
Immediately after my diagnosis, I was distraught. I would retreat to my closet where I could cry into a pillow so that my children wouldn’t hear. I mourned the high school graduations I’d miss and the weddings, and the chance to have grey hair and be called grandma. I thought about my husband and his future without me. I wallowed in some intense self-pity for a time and then decided that if I was going to succeed I needed to get smart about my disease and be my own best advocate.
I began researching CLL, its treatments, statistics, and even joined an online CLL support group. The research taught me that at the moment there was little more than one chemotherapy treatment that could be used to treat this blood cancer and after relapse from that treatment. Well, things looked bleak. I learned that my flavor of CLL was complex and most likely would not respond to chemo. I kept searching knowing that if I could find one person, just one person, who had beat my type of CLL that I could hold onto hope.
It was on the online forum that I began to read other’s stories, and I learned about these new, non-chemo treatments that were being tested in clinical trials. I learned about Ibrutinib and ABT-199 (now Venetoclax) and followed these patient’s remarkable journeys from being literally out of options to getting a new lease on life. These oral, targeted therapies were working and I now had something paramount to any survival story, HOPE!
Fast forward to today, I am now receiving my first treatment in a clinical trial combining the novel therapies of Ibrutinib, Venetoclax and Obinutuzumab. Patients in this trial are achieving unprecedented results and many CLL specialists are beginning to whisper the other “C” word, CURE. While only time will tell I know we are on the right path. Thanks to LLS these drugs have gone from a twinkle in a scientist’s eye to saving lives! As an employee of LLS I’m blessed to see and hear from patients frequently, many of whom have beat their “once upon a time” incurable cancer.
It is my personal mission to be part of the cure for all cancer patients and make someday today! “The real glory is being knocked to your knees and then coming back. That’s the essence of it.” -Vince Lombardi
Sonia
CLL Survivor
