I was diagnosed with chronic lymphocytic leukemia (CLL) in 1997 at age 40. Although my genetic factors indicated non-aggressive disease (13q14 del), my white count rapidly rose to about 2,000,000. I was noticeably fatigued. Treatment started with Rituxan® monotherapy. Lower white counts reduced the fatigue. After a decade on Rituxan®, I was severely immunocompromised. I had sepsis and streptococcal pneumonia several times. I finally started on replacement intravenous immune globulin (IVIV). During one of my sepsis episodes, I almost died; I ended up on a ventilator. I ended up on weekly Hizentra® (subcutaneous immune globulin infusions administered at home) to keep IgG levels high.
Throughout my CLL journey, I continued exercising, running six marathons, 14 half marathons, bicycle riding, and lifting weights while working as an electronics engineer. Exercise gave me the energy and fitness to survive the medical challenges.
A two-year course of Gazyva® and venetoclax resulted in a three-year remission, which I'm still enjoying.
Lessons learned:
- Go to an NCI-accredited center of excellence, at least for a second opinion.
- Keep active!
- Assume CLL isn't curable and find a treatment plan that controls the disease.
- Have your immune globulin levels checked routinely, and adjust replacement immune globulin levels accordingly.
- Routinely use a nasal sinus rinse to control bacterial growth in the sinuses.
Malcolm
chronic lymphocytic leukemia (CLL)
