An Ever-Changing Journey: Life With Relapsed/Refractory AML
After an initial diagnosis and undergoing treatment for acute myeloid leukemia (AML), you may hit a roadblock — you are faced with relapse or refractory (R/R) AML. This means people with AML, a hard-to-treat cancer impacting the blood and bone marrow, may experience a relapse, which is when the disease comes back after a period of improvement, or their disease may not improve after previous treatments, also called refractory disease. To navigate the path ahead, it’s important for you and your loved ones to be equipped with knowledge and information to better understand the disease at hand and “Be AML Ready”.
When a patient is informed and knowledgeable about their diagnosis, they may feel empowered to advocate for themselves and be an active participant in their treatment journey, in partnership with their health care team. For patients diagnosed with R/R AML, this knowledge is important because the disease could look different than the initial diagnosis, as AML genetic mutations can change over the course of their journey.
Understanding the Role of AML Genetic Mutations and Mutation Testing
AML is caused by harmful mutations in genes that tell blood cells how to work. While AML has been associated with various genetic mutations, one of the most common is FMS-like tyrosine kinase 3 (FLT3). Genetic mutations, like FLT3, can develop over time, making mutation testing at diagnosis and retesting at relapse or disease progression crucial. If you or a loved one are impacted by R/R AML, understanding the role of mutation testing can help pave the path ahead.
Historically, the overall survival rate for R/R AML has been poor and dependent on several prognostic factors. As a result, mutation testing, specifically genetic and biomarker testing to truly understand the biology of the cancer, is critical. By determining the presence of FLT3 or other genetic mutations through mutation testing, health care teams can use the test findings to make a more accurate diagnosis and guide your treatment journey.
Harnessing the Evolution of Innovation
Though R/R AML has been associated with poor outcomes, innovation has changed the treatment paradigm and resulted in additional treatment options for those with hard-to-treat cancers. For example, some AML mutations can be addressed through targeted therapy. However, there still remains many unmet needs faced by those impacted by AML, which is why the field must continue to transform and innovate to improve patient care.
Planning Ahead and Taking Proactive Steps
It’s estimated that more than 20,000 people across the United States will be diagnosed with AML in 2023, based on SEER 12. With the right information, you can be ready to face R/R AML. Supported by your caregivers, health care providers and broader AML community, there are steps you can take to advocate for your care and seek the treatment you need:
Talk to Your Health Care Team: When it comes to health care, good communication is always important. Discuss any questions you may have with your health care team. Write them down ahead of time and bring the list to your appointments. Visit BeAMLReady.com to access a discussion guide with foundational questions to help start the conversation.
Ask About Mutation Testing: Knowing your AML genetic mutation status may impact your treatment options. Have frequent conversations with your health care team and discuss topics such as genetic changes and mutation testing. Ask your health care team about getting tested and consider retesting at relapse or if your disease progresses, as mutation status has been shown to change throughout the disease continuum. Keep in mind, a negative result at AML diagnosis does not necessarily mean you will still be negative at relapse and vice versa.
If you’re interested in learning more about R/R AML and FLT3 mutations and/or ready to talk to your doctor about next steps in your cancer journey, you can visit BeAMLReady.com for more information.