The First Steps: What to Do After an sAML Diagnosis

A secondary acute myeloid leukemia (sAML) diagnosis can lead to a number of questions, and there are several options for people living with sAML based on their age, the state of their disease and their overall health.1 But where do you start? The following guide can help you understand how different people navigate sAML, starting with a diagnosis.

1) Understanding Your sAML

sAML affects different people in different ways, which is why it’s important to understand how it’s affecting your body and why. This is why asking your doctor the right questions about your disease is so important. To learn more about the types of questions you can ask your doctor, visit this resource guide to learn more.

2) Finding the Right Care

It’s also important to have a productive relationship with your care team. Take some time to find a doctor that’s right for you. Learn more about the specialists in your area, and connect with others who may be going through similar experiences.

The Myelodysplastic Syndromes (MDS) Foundation, Inc. offers a map of recommended treatment centers across the U.S. known as MDS Centers of Excellence, which have established university (or equivalent) programs, recognized expertise in MDS as well as ongoing research and clinical trials.2 Click here to find an MDS Center of Excellence near you.

3) Understanding Your Treatment Options

There are a number of treatment options that may be right for your sAML. Your doctor will choose a treatment option depending on your health and the state of your disease. Some individuals may also qualify for a stem cell transplant after their initial sAML treatment.1

4) Creating a Support Team

Talk to your family and friends about how they can support you throughout your journey. It’s important to have the right emotional and physical support as you begin to understand more about your disease.

5) Accessing Resources and Assistance

There are several resources available to people living with sAML. There are a number of advocacy organizations dedicated to helping the sAML community, including online support communities, forums, and hotlines that will help connect you with others at different stages of their disease journey. These include:

  • MyLifeLine, a unique online support community for patients and caregivers offered by the Cancer Support Community.
  • MDS Foundation Patient & Caregiver Resources – the MDS Foundation offers a variety of programs that support patients, survivors and caregivers experiencing sAML caused by a prior MDS diagnosis. These include patient Q&As, message boards, the Building Blocks of Hope printed resources, MDS newsletters and more.
  • Cancer Support Helpline (888-793-9355) – this hotline connects you with someone who can help you navigate overall support and assistance in finding ongoing cancer caregiver programs.
  • Cancer Experience Registry – this online community brings patients and caregivers together to share their experiences as well as take surveys and find tips and tricks for the everyday.