Nicole’s Chronic Lymphocytic Leukemia (CLL) Story
Nicole, a nurse and single mother of three from Florida, was diagnosed with chronic lymphocytic leukemia (CLL) a week before her 39th birthday. She initially attributed her symptoms—extreme fatigue, night sweats, and persistent lumps on her neck—to the demands of her job during the pandemic or possibly pre-menopause. After a series of misdiagnoses, including post-COVID fatigue and infections, Nicole’s OB/GYN referred her to an ENT, triggering a series of tests that led to her leukemia diagnosis.
Interviewed by: Taylor Scheib
Edited by: Katrina Villareal
Despite the emotional and logistical challenges, Nicole adopted a pragmatic approach, focusing on understanding her disease and navigating her treatment plan. Nicole underwent an initial six-month treatment with a BCL-2 inhibitor and monoclonal antibody. While the therapy brought her into remission temporarily, symptoms such as night sweats and fatigue resurfaced, prompting renewed treatment of the BCL-2 inhibitor.
Financial struggles and logistical hurdles with insurance and medication access compounded the difficulties of her chronic lymphocytic leukemia diagnosis. However, Nicole relied on support from family, friends, and her children, alongside advocacy and connection with others facing similar challenges, to maintain her resolve.
Throughout her experience, Nicole emphasized the importance of self-advocacy, understanding her diagnosis, and not comparing her circumstances to others. Her coping mechanisms included leveraging social media to share her experiences, seeking guidance from a CLL specialist, and shifting her perspective on life to prioritize meaningful moments with her children. Nicole’s ultimate hope is for greater awareness and resources for CLL and blood cancers, and encourages others facing similar situations to advocate for themselves, seek help, and live in the moment.
- Name: Nicole B.
- Age at Diagnosis:
- 38
- Diagnosis:
- Chronic Lymphocytic Leukemia
- Symptoms:
- Extreme fatigue
- Night sweats
- Lumps on neck
- Rash
- Shortness of breath
- Treatments:
- BCL-2 inhibitor
- Monoclonal antibody
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
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More Chronic Lymphocytic Leukemia (CLL) Stories
Nicole B., Chronic Lymphocytic Leukemia
Symptoms: Extreme fatigue, night sweats, lumps on neck, rash, shortness of breath
Treatments: BCL-2 inhibitor, monoclonal antibody
Symptoms of CLL
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Susan K.
Symptoms: Swollen lymph nodes on the neck, high white blood count
Treatment: Venetoclax & obinutuzumab
