Smart Patients Get Smart Care™

The World’s Leading Authority for Chronic Lymphocytic Leukemia Patients

Test Before Treat is one of the most important things you can do for your CLL / SLL!

Predictive and prognostic testing are critical before choosing any therapy for your CLL. Your life may depend on getting the appropriate testing before treatment, as these tests will determine which therapies will work and which will not. Incorrect treatment can be tragic.

Prognostic markers help predict the likely outcome of cancer for a group, but less so for any particular individual.

Predictive markers help predict the likelihood of benefiting from any particular therapy.

CLL is very heterogeneous or variable in how it behaves. It is important to understand the specific type of CLL that you have.  Its ability to resist certain therapies and its sensitivity to others will be critical in tailoring the appropriate therapy.

Most prognostic and predictive factors can change over time, and so you need to be retested before starting treatment, even if you were tested at diagnosis or after the last treatment. CLL can evolve over time.

Action Items for Test Before Treat™

Read it. Print it out. Share it with your healthcare provider. 

Before starting your first treatment, and prior to every subsequent treatment, know which tests you absolutely must have, which we strongly advise through CLL Society’s Test Before Treat™ campaign. Two patients share their stories about the importance of getting the right tests completed prior to choosing which treatment will be best for them. Click here.

Have you been concerned that you might not be receiving the best treatment for your CLL or SLL? Apply today for a free, HIPAA-compliant, expert second opinion consult through CLL Society’s Expert Access™ program. 

Read it. Print it out. Share it with your treating physician. Click here.

From point A to Z, CLL Society will share which tests you should be advocating for to ensure you are receiving the best possible care.

Join CLL Society for this important Ed Forum to learn the basics about testing across the span of your CLL journey. At the time of diagnosis, find out which tests should be performed, which might be avoided, and why. 

Before starting your first treatment, and prior to every subsequent treatment, know which tests you absolutely must have, which we strongly advise through CLL Society’s Test Before Treat™ campaign. Two patients will share their stories about the importance of getting the right tests completed prior to choosing treatment. Finally, learn how CLL is monitored over time, and how the evolving role of MRD (measurable residual disease) testing may help determine when to stop therapy in CLL. Click here.

Awake worrying that you are receiving the wrong treatment for your CLL? Stop worrying and take action. Apply today for a free, HIPPA-compliant Expert 2nd Opinion consult through CLL Society’s Expert Access™ program. Click here.

PROGRAM FEATURES

What Doctors Say About Test Before Treat

What critical concern could compel these CLL experts from some of the top research centers around the world to come before our cameras and speak so urgently to you, our readers? The answer: Test Before Treat™! The truth is that critical tests which can predict which patients will do well or fail on certain medications and which should be done before each and every treatment decision, are often not being done… or are being done and the results are ignored. Take our patients’ stories to heart. Print out our one-pager. Share it with your doctor. Smart Patients Get Smart Care™. Read more.

Test Before TreatPatient Stories

Whatever the stage of your journey with CLL, chances are good that your fellow CLL Society readers have walked or are walking that very road. Through the generous sharing of their stories we can gain strength, courage and information.

Please read and act at all times as your own best advocate. 

Smart Patients Get Smart Care™. Read More.

This program is made possible in part by grant support from Genentech, Janssen Oncology, and Pharmacyclics.

ADDITIONAL READING

As new and better treatments are developed to treat Chronic Lymphocytic Leukemia, and Small Lymphocytic Lymphoma (CLL / SLL), testing for subtypes of the disease is becoming more important for prognosis and selection of the best treatment options.
Patient, Know Thyself Mark Hoffman is a long-time CLL patient advocate and facilitator of the CLL Society Patient & Caregiver Support Group in San Diego, CA. In this article from Cancer Health, Mark echoes the importance of the Test Before Treat™ campaign by sharing his story. When Mark was
At the American Society of Hematology’s (ASH) 2020 conference, there was research on looking at the genome of CLL and how different genetic markers might have predictive and value. Dr. Brian Koffman, Chief Medical Officer and Executive Vice President of CLL Society, interviewed Dr. Adrian Wiestner, a senior investigator at
CLL Society On Demand Ed Forum: ASH 2020 Comes to You – Session 1: Encouraging Updates on Drugs in Development + the Sad State of Test Before Treat Recorded Thursday, February 4, 2021 https://youtu.be/U9f7OCdcJcs Continue to Session 2: CLL Treatments: Chemotherapy, Immunotherapy, and Targeted Agents CLL Society Resources Download