Navigating Acute Myeloid Leukemia (AML): Key Considerations for Patients

Dr. Eunice Wang shares the importance of staying informed about AML subtypes and genetic mutations like FMS-like tyrosine kinase 3 (FLT3), getting tested and engaging your caregiver team

Imagine sitting in the exam room as you receive the news from your doctor. You have AML. It doesn’t seem real. How could this be your new reality? What does this new reality mean for you? Your family? What kind of leukemia is this? Just as your heart begins to race and your mind begins to spin, you feel your partner’s hand squeeze yours and focus on your doctor’s kind eyes, ready to guide you through the journey ahead. While the reality of your AML diagnosis sets in, you realize that you can take control by developing a plan of action.

Each year, more than 20,000 people across the United States are diagnosed with AML, one of the most common leukemia types in adults.1,2 AML is an aggressive type of cancer in which the bone marrow makes a large number of abnormal blood cells.2 These abnormal cells can be red blood cells, white blood cells and platelets, also known as leukemia cells or blasts, and can advance the cancer quickly if not treated.3

However, AML is more than just a diagnosis. It’s an ever-changing journey for both patients and caregivers filled with emotions, challenges and hopes. To navigate the path ahead, it’s important to be equipped with knowledge and information to better understand the disease at hand. With the right information, patients can be prepared for what their AML diagnosis entails, or in other words, “Be AML Ready”.

With more than 25 years as an oncologist treating patients with leukemia, Dr. Eunice Wang, Chief of Leukemia at Roswell Park Comprehensive Cancer Center, has seen firsthand the impact knowledge can have not only on diagnosis but also treatment. “While it is crucial to stay informed about what patients can do to take their AML diagnosis into their hands with the support of their health care team, patient empowerment is a key component. It’s for this reason that it’s necessary to understand how diagnosis and genetic testing go hand-in-hand, and how this information can shape the patient and treatment journey.”3

Understanding AML Subtypes

AML is caused by harmful mutations in genes which tell blood cells how to work.4 These genetic mutations can occur in several different genes, resulting in different subtypes of AML.5

FLT3 is just one of many gene mutations that can be present in AML, but approximately one-third of newly diagnosed patients with AML may test positive for a FLT3 mutation.4,6 Some patients with AML may experience relapsed/refractory (R/R) AML, which occurs when the disease comes back after a period of improvement or when there is no improvement after treatment(s).7 The overall survival of those with R/R AML is poor, as the overall survival of patients with relapsed AML remains dependent on several prognostic factors.8,9 As a result, the ability to get patients into remission is critical.10

The question now is, how are gene mutations like FLT3 discovered in patients with AML? The answer: genetic testing.

Unlocking the Importance of Genetic Testing

Dr. Wang explains, “the first step to treating R/R AML and getting patients into remission, is testing; specifically, genetic and biomarker testing to truly understand the biology of the cancer.11 With this information, health care teams can make more informed treatment decisions.”5

It is also important to remember that gene mutations can develop over time.12 Even though testing may have been conducted at diagnosis, AML mutation status like FLT3 can change over time, highlighting the importance of re-testing.5,12 “This is why, while testing is recommended at diagnosis of AML, it is also recommended at every sign of disease recurring in an individual because the biological disease of AML could be completely different at relapse and refractory compared to diagnosis,” Dr. Wang shares.

People with AML should have frequent conversations with their doctors and discuss topics such as genetic changes, chromosome tests and biomarker or molecular testing.12 Once the care team has the genetic profile or genetic makeup of the cancer from tests like these, the information can be used to have a more accurate diagnosis and guide the patient treatment journey.12

Preparing for the Journey Ahead

While the AML journey may not be easy, you are not alone. Your support system, including caregivers, health care providers and broader AML community, are championing your treatment. Here are some steps you can take along the way:

Talk to your health care team: Discuss any questions 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.

Consider genetic testing throughout the treatment course: Knowing your genetic mutation status may impact your treatment options. Ask your health care team about getting tested and consider retesting at relapse or if your disease progresses.11

“Knowledge is power, as they say,” says Dr. Wang. “When it comes to AML, this saying couldn’t be truer. If you’re interested in learning more about AML subtypes 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.”

References

  1. Siegel RL, Miller KD, Fuchs HE, Jemal A. Cancer statistics, 2021. CA Cancer J Clin 2021;71(1):7-33. Erratum in: CA Cancer J Clin (Epub) 04-19-2021.
  2. American Cancer Society. About acute myeloid leukemia (06-24-2019). https://www.cancer.org/content/dam/CRC/PDF/Public/8674.00.pdf. Accessed 07-15-2022.
  3. National Cancer Institute. Acute myeloid leukemia treatment (PDQ®): patient version (03-04-2022). https://www.cancer.gov/types/leukemia/patient/adult-aml-treatment-pdq. Accessed 03-28-2022.
  4. Hospital MA, Green AS, Maciel TT, et al. FLT3 inhibitors: clinical potential in acute myeloid leukemia. Onco Targets Ther 2017;10:607-15.
  5. Referenced with permission from the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for Acute Myeloid Leukemia version 2.2022 (06-14-2022). ©National Comprehensive Cancer Network, Inc. 2022. All rights reserved. Accessed 06-14-2022. To view the most recent and complete version of the guideline, go online to NCCN.org. NCCN makes no warranties of any kind whatsoever regarding their content, use or application and disclaims any responsibility for their application or use in any way.
  6. Patel JP, Gönen M, Figueroa ME, et al. Prognostic relevance of integrated genetic profiling in acute myeloid leukemia. N Engl J Med 2012;366(12):1079-89.
  7. Leukemia and Lymphoma Society. Relapsed and refractory AML. https://www.lls.org/leukemia/acute-myeloid-leukemia/treatment/relapsed-and-refractory. Accessed 04-04-2022.
  8. Ganzel C, Sun Z, Cripe LD, et al. Very poor long-term survival in past and more recent studies for relapsed AML patients: the ECOG-ACRIN experience. Am J Hematol 2018;93(8):1074-81.
  9. Brandwein JM, Saini L, Geddes MN, et al. Outcomes of patients with relapsed or refractory acute myeloid leukemia: a population-based real-world study. Am J Blood Res 2020;10(4):124-33.
  10. Cancer.net. Leukemia-acute myeloid-AML: treatment options (06-2017). https://www.cancer.net/cancer-types/leukemia-acute-myeloid-aml/treatment-options. Accessed 04-27-2022.
  11. Referenced with permission from the NCCN Guidelines for Patients (NCCN Guidelines®) for Acute Myeloid Leukemia version 1. 2021. (2021). ©National Comprehensive Cancer Network, Inc. 2021. All rights reserved. Accessed 12-16-2021. To view the most recent and complete version of the guideline, go online to NCCN.org. NCCN makes no warranties of any kind whatsoever regarding their content, use or application and disclaims any responsibility for their application or use in any way.
  12. American Cancer Society. Precision or Personalized Medicine (04-24-2020). https://www.cancer.org/treatment/treatments-and-side-effects/treatment-types/precision-medicine.html. Accessed 11-01-2021.