If you've recently been diagnosed with AML, we're sorry that you're in a club that none of us wanted to join. The good news is that you will meet the kindest people in the AML community and the HealthTree Foundation for AML is here for you!
Here are six steps to reduce your anxiety and take meaningful action:
1. Find an AML Specialist
If you do only one thing for your care, it will be to find and consult with an AML specialist. According to several studies, having an AML specialist on your team can add quality years to your life. You can always consult with a specialist periodically and get care closer to home, as your local oncologist and AML specialist coordinate together to give you the best care. Do not leave your sole care in the hands of a local doctor. Your life is worth the effort.
2. Get the Right Tests
Before you start treatment, you should make sure your doctor performs the right tests. These include blood counts, complete metabolic panel, biopsies (bone marrow, fine needle aspiration, core needle), immunohistochemistry, flow cytometry, cytogenetics, fluorescent in situ hybridization (FISH) and possibly imaging tests (PET/CT, MRI). You can start now to become an educated and empowered patient who knows the right kind of tests, labs, and care you should be receiving.
With the results of these tests, you will understand the type of AML you have. Not all AML is genetically the same. The genetic tests must be run before you get treatment, otherwise, there are no AML cells to test. Treatment does differ between the types of AML. You are fighting a war and you want to understand your enemy.
3. Find a HealthTree AML Coach
No one should have to go through their AML journey alone. Receiving help from a more experienced AML patient can reduce your anxiety, help navigate different AML treatments and resources, and provide an emotional connection with someone who is going through a similar experience. A HealthTree AML Coach can be chosen by interest area, geographic area, or type of AML. You can have one or more Coaches and the relationship can be short or long-term. You can also sign up as a HealthTree AML Coach if you are interested in sharing your experience as a mentor. This program has positively impacted many AML patients on both the giving and receiving end of the program.
4. Join HealthTree Cure Hub to Learn What Others Have Done Before You
HealthTree Cure Hub provides a suite of tools to help you stay ahead of your AML.
Track Your Labs
You’ll start getting an overwhelming number of labs run and you’ll want to start tracking your AML markers. Keep everything in a single place, like your genetic reports, AML markers, and other critical information so you can graph your disease. You’ll also be able to access an easy graph showing how each treatment affects your AML that you can share for second opinions.
See Your Clinical Trial Options
View a personalized list of all open clinical trials you would be eligible to join. Review your options in HealthTree Cure Hub, print them out, and take them with you to your appointments to have an informed conversation with your doctor to better understand why he/she may believe a clinical trial is the best option for your care.
Find Your AML “Twin”
In HealthTree Cure Hub, our Twin Machine technology lets you see what other patients like you have received for care, based on their type of AML. Look ahead and find your twins who are years ahead of you in treatment. Who had the longest remissions? Take notes of their treatments and discuss them with your doctor.
Discover Side Effect Solutions
See real-world data of how people are living with their side effects and what they are doing to try and ease them. You can also share your experiences with other patients and vote on solutions that have been successful for you in combating your side effects. By sharing our experiences, we can help each other have a better quality of life.
Contribute to Research *Surveys and Studies Coming Soon*
Add as much information as you can or upload your electronic health records to HealthTree Cure Hub to help AML researchers connect the dots through anonymized patient stories. There are also surveys and studies that you can participate in by AML specialists from around the world. These simple, yet innovative surveys and studies will help AML experts accelerate AML research.
5. Start Learning through HealthTree University
Chances are before being diagnosed with AML, you had never heard of the disease before. It's overwhelming to receive that diagnosis and then be immediately thrown into making treatment decisions.
It is in your self-interest to get educated as quickly as possible because empowered AML patients live longer. Rather than consult Dr. Google, join HealthTree University. We’ve built a comprehensive curriculum in HealthTree University to make getting up-to-speed on AML easy. Start with the AML Basics classes and work your way up. The classes are taught by 38 AML experts and today we have over 246 lectures in 30 courses (with more to come!). We want you to spend your precious clinic time asking your doctor questions about your care, not AML basics.
6. Join the HealthTree Community for AML to Learn More and Make AML Friends
The HealthTree Community for Acute Myeloid Leukemia program consists of the Podcast, Round Tables, Webinars, and News programs. Here are some actions and steps you can take to get involved in this amazing Community:
- Listen to HealthTree Podcast for AML episodes and hear 1:1 interviews with AML experts
- Watch HealthTree Round Tables for AML and hear what's new in the world of AML from top AML specialists across the globe
- Join a HealthTree Community for AML webinar that interests you and connect with others through monthly events
- Join our social media platform called HealthTree Connect
- Join our newsletter to read weekly articles and get familiar with AML terminology, it's a whole new language!
And as always, reach out to us at firstname.lastname@example.org if you need more help. We’re here for you!
Jenny Ahlstrom, Founder of the HealthTree Foundation