Elisabeth Wright was diagnosed with chronic lymphocytic leukemia (CLL) in 2014. Elisabeth’s positive CLL journey highlights three important principles that CLL Society urges everyone to carefully consider:
- The importance of becoming a smart patient and connecting with trustworthy sources of support and education.
- The advantages of building a team that includes CLL expertise.
- The possibility that a clinical trial might be the best choice of therapy
We are grateful to Elisabeth for sharing her story, which you can read below. If you want to share your CLL / SLL story or any hard-earned wisdom, we would love to hear from you. Send us a message at [email protected].
Eight years ago this month, I was diagnosed with chronic lymphocytic leukemia (CLL). My world turned upside down. I knew nothing about CLL but had to get smart on the subject. And I did this with the help of good doctors and organizations such as the CLL Society.
While CLL is considered an indolent cancer, mine was aggressive, and one year later, in August 2015, my hematology oncologist, Dr. John Pagel, said it was time to start treatments. He offered me the opportunity to participate in a Phase 3 clinical trial. I was nervous about participating in a clinical trial because I had always thought of clinical trials as a last resort. I wondered if things were worse than I really understood. Dr. Pagel assured me that was not the case, and after good discussions and much thought, I decided to participate. There were three arms to the study. One arm was the standard of care, the second a combination of the standard of care and the study drug. The third arm was the study drug alone. As it turns out, I got lucky. I drew the 3rd arm. I began treatments immediately under the watchful eyes of an amazing clinical trial team at Swedish Cancer Institute in Seattle. One month into the trial, my blood work showed a dramatic spike in my white blood cell count. I was pretty upset, but Dr. Pagel assured me this was common after one month. Every three months, I would have blood work and a PT/CT. My numbers went down pretty quickly, and six months into the clinical trial, my blood counts were normal, and only a few of my lymph nodes were slightly enlarged. My regimen continues today- 7 years later. I feel great and lead a normal life.
Getting smart about CLL, understanding the value of a clinical trial, the encouragement from Dr. Brian Koffman at the CLL Society, and an amazing supportive hematological oncology team at Swedish helped me put my life back exactly where I wanted it.