Diane’s CLL Story - Empowered Through Education and Wellness Methods

Diane’s CLL Diagnosis

Diane was diagnosed with chronic lymphocytic leukemia (CLL) on April 2nd, 2022. Months prior, she had received the COVID-19 vaccine booster, during which her body had a bad reaction. She decided to visit her doctor to get checked out. After running some blood tests, they found that her white blood cell count was high. Her primary care provider referred Diane to a hematologist-oncologist (blood cancer doctor) at the Life Span Cancer Center in Rhode Island. The hematologist-oncologist conducted a fluorescence in situ hybridization (FISH) test, confirming the CLL diagnosis. After visiting that doctor, Diane decided to seek a second opinion from a CLL specialist. Through personal research, she found Dr. Inhye Ahn at the Center for Chronic Lymphocytic Leukemia at Dana-Farber Cancer Institute in Boston, Massachusetts. 

Visiting a CLL Specialist

Diane made the trip from Rhode Island to Dana-Farber Cancer Institute and met with CLL specialist Dr. Inhye Ahn. Diane stated that Dr. Ahn was very attentive and spent an extended amount of time answering her questions, going over test results, and explaining to Diane that based on her CLL type of trisomy 12 and del(13q), she would probably need treatment within the next 2-3 years. Dr. Ahn let Diane know that when she did qualify to start treatment, she would coordinate with Diane’s local hematologist-oncologist at the Life Span Cancer Center to implement the treatment plan. 

Diane stated that neither Dr. Ahn nor her local hematologist-oncologist went over what medications Diane could expect to take when the time came for her to start treatment. The reason for this was that there could be more advanced therapies multiple years in the future, and talking about what was available at the present moment was not worth noting. 

Researching CLL Topics to Help Decrease Anxiety 

During Diane’s watch and wait period, she took to reading everything she could find about CLL. She joined CLL community Facebook groups and read content from credible CLL sources to learn more about the disease. This dedicated research approach helped ease her anxiety as she learned that CLL can usually be well-managed with the help of non-chemo targeted therapies if she ever were to need treatment. Diane stated she is very grateful for the resources that the HealthTree Foundation provides to CLL patients. 

Diane’s Preference for a Fixed-Duration Therapy 

Diane stated that if she needs treatment, the therapy she chooses will come down to how long she’ll need to take it, what the side effects will be, and how much it will cost. Based on the currently available CLL treatments, her preference would be venetoclax (Venclexta) + obinutuzumab (Gazyva). She prefers Venclexta + Gazyva over a BTK inhibitor because she does not want to take a long-term pill. She is happy that her CLL specialist will be able to implement any treatment plan through her local hematologist-oncologist so that the therapy is administered near her home, limiting the amount of travel distance. Diane stated she is also open to joining a clinical trial if she qualifies. 

Lifestyle Changes During Watch and Wait - Nutrition and Qigong

While in watch and wait, Diane has turned her focus to improving any lifestyle factors she can to potentially decrease the risk of needing treatment. Some of these include following the advice from Glenn Sabin’s book called “N of 1”, a true story about how he healed from his CLL using nutrition and other wellness methods. Diane joined the Square One program by Chris Beat Cancer, a cancer patient who healed himself through nutrition. Diane also enjoys practicing a Chinese movement technique called Qigong, which involves exercise to improve health and well-being. These wellness techniques help Diane feel in control of her lifestyle, and she hopes that they will reduce the chance of her needing treatment in the future. 

“This is the kind of stuff I like to immerse myself in, it makes me feel good and gives me hope.” - Diane. 

A New Perspective on Life

After her CLL diagnosis, Diane has a different perspective on life now. The most important things to her are spending quality time with her friends and family. She loves spending time with her two grandchildren. 

We are grateful for Diane taking the time to share her CLL story. We appreciate her insight regarding strategies she is using to improve her well-being during watch and wait. 

Are You Interested in Helping Other CLL Patients?

Do you believe you have insight that would benefit other CLL patients? We would love to speak with you and share your story. To do so, please email cll@healthtree.org to set up a time to talk. You are also welcome to email over a pre-written article to publish.