Your doctor is an expert in oncology, but you’re an expert in you. By working together, you can create a list of treatment goals based on your specific needs, preferences, and situation.
Below are some ideas for goals that may be helpful as you go through your journey. Don’t feel like you need to take on all of them at once. Work through the process with your healthcare team at a pace that works for you.
Make it a goal
There are many
for CLL. From how the treatment works to how long you need to take it, learn the specifics of each option. This will help you make an informed decision with your healthcare team and choose the treatment that’s right for you.1,2
The best therapy for each person may depend on many factors including2,3:
Meeting with your doctor can be intimidating, especially at the beginning. You may want to write down your questions and concerns ahead of time so you don't forget anything.4
This discussion guide will help you plan ahead for each visit and cover important topics while you have your doctor's attention.
Download the discussion guide that's most relevant for you.
Make it a goal
It is helpful to understand the terms you may find in your research or hear when you talk with your doctor about CLL. Here are some terms that may be used in discussions about your or a loved one’s response to CLL treatment.
To evaluate if a person has achieved a PR or CR, the doctor will perform tests before and during treatment.
These include measuring5:
To qualify for a PR, these measures are partially improved. For a CR, these measures are completely improved to normal.5,6
Make it a goal
MRD stands for minimal residual disease. When someone has CLL, their doctor may use a highly sensitive test to measure the MRD in their blood or bone marrow. If MRD is found in the sample that is tested, it means that there are still CLL cells remaining. If no MRD is found, it's considered undetectable MRD (uMRD)—sometimes referred to as MRD negativity—which means CLL cells cannot be detected in the blood. uMRD is defined as having fewer than 1 cancer cell per 10,000 white blood cells.2,9
Interpreting results of MRD testing is complex. Due to limitations of MRD testing, there may still be cancer cells hidden in the body. It is not yet known whether making treatment decisions based on MRD status is beneficial, and some treatment options can provide a meaningful PFS and OS benefit even without achieving uMRD.10-12
Talk to your doctor to see if achieving uMRD may be a goal of your CLL treatment plan.
For some people who receive CLL treatment, cancerous B cells may be lessened but still detectable in the body.13
1. Leukemia – chronic lymphocytic – CLL: types of treatment. Cancer.Net. October 2017. Accessed July 2, 2020. https://www.cancer.net/cancer-types/leukemia-chronic-lymphocytic-cll/types-treatment 2. Brander D, Islam P, Barrientos JC. Tailored treatment strategies for chronic lymphocytic leukemia in a rapidly changing era. Am Soc Clin Oncol Educ Book. 2019;39:487-498. 3. National Comprehensive Cancer Network. NCCN Guidelines for Patients: chronic lymphocytic leukemia. Accessed November 3, 2020. https://www.nccn.org/patients/guidelines/content/PDF/cll-patient.pdf 4. Doctor, can we talk? Tips for communicating with your health care team. CancerCare. Accessed August 27, 2020. https://www.cancercare.org/publications/53 5. Hallek M, Cheson B, Catovsky D, et al. CLL guidelines for diagnosis, indications for treatment, response assessment, and supportive management of CLL. Blood. 2018;131(25):2745-2760. 6. National Cancer Institute. Definition of complete response. Accessed June 2, 2020. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/complete-response 7. National Cancer Institute. Definition of progression free survival. Accessed June 2, 2020. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/partial-remission 8. National Cancer Institute. Definition of overall survival. Accessed June 2, 2020. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/overall-survival 9. Leukemia & Lymphoma Society. Minimal residual disease (MRD). Accessed July 30, 2020. https://www.lls.org/sites/default/files/National/USA/Pdf/Publications/FS35_MRD_Final_2019.pdf 10. CLL Society. ASH 2018: Dr William Wierda MRD undetectable in CLL (chronic lymphocytic leukemia). Updated May 27, 2019. Accessed October 26, 2020. https://cllsociety.org/2019/05/ash-2018-dr-william-wierda-mrd-undetectable-in-cll-chronic-lymphocytic-leukemia/ 11. Furstenau M, De Silva N, Eichhorst B, Hallek M. Minimal residual disease assessment in CLL: ready for use in clinical routine? Hemasphere. 2019;3(5):e287. 12. Del Giudice I, Raponi S, Della Starza I, et al. Minimal residual disease in chronic lymphocytic leukemia: a new goal? Front Oncol. 2019;9:689. 13. Leukemia & Lymphoma Society. Comparing outcomes in patients with chronic lymphocytic leukemia with detectable and undetectable minimal residual disease (CLL). October 3, 2019. Accessed October 26, 2020. https://communityview.lls.org/articles/comparing-outcomes-in-patients-with-chronic-lymphocytic-leukemia-with-detectable-and-undetectable-minimal-residual-disease-cll 14. Cheson BD, Mato AR. The evolving use of minimal residual disease (MRD) assessment in chronic lymphocytic leukemia. Clin Adv Hematol Oncol. 2020;18(6)(suppl 10).