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Acute Myeloid Leukemia Treatment: Things to Consider

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Published on January 13, 2020

Key Takeaways

  • The Internet is filled with vast information on AML and it's changing.  The Internet  isn't always helpful in the beginning of an AML diagnosis. 
  • If  your current health center doesn't treat a lot of AML, see if your doctor is wiling to collaborate with an AML specialist in a larger center.
  • Talk to your doctor about testing options including genetic testing and then focus on your AML diagnosis.  

Acute myeloid leukemia expert Dr. Gail Roboz and Patient Power host and advocate Carol Preston sit down to discuss how patients often hit the Internet and focus on the worst possible prognostic subtype that they may not even have. Watch to learn why it’s important to make sure to have the right testing and talk to your doctor and focus on your specific AML diagnosis from there.

This program is sponsored by AbbVie, Inc., Genentech, Inc. and Adaptive Biotechnologies. These organizations have no editorial control. It is produced by Patient Power. Patient Power is solely responsible for program content

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Transcript | Acute Myeloid Leukemia Treatment: Things to Consider

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Carol Preston:              

Ann’s question who says, “What do I need to know to get educated on my treatment decisions?” You mentioned the alphabet soup of acronyms or initializations and patients have enough to deal with without trying to remember all of that. So, is there a primer as it where for patients?

Dr. Roboz:                   

No, I mean I think that the information on the Internet is so overwhelming and vast that it is very, very difficult candidly to direct people well, because there’s so much changing information, and somehow with this disease almost invariably in my experience patients are led down a very grim road somehow. I don’t know what it is about the searches, but they end up with a lot more scary information at the beginning of the diagnosis than what they should be thinking of. It’s drinking out of a fire hose, and I think it’s very not helpful to immediately go down the road of the worst possible prognostic subtype that you may not have.

Start out by figuring out if you’re in a center that treats a lot of AML or not and then try to establish with your doctor that maybe if you’re acutely ill and if you’re in a small hospital that doesn’t work with a lot of AML, maybe the doctor there could collaborate with a bigger center that treats a lot of AML. Figure out that the right testing has been sent, both cytogenetically and in terms of mutations, and then break it down for you so that what you’re looking up on the internet is what you have. Not what’s theoretically possible for a million patients on Earth because you want to focus on you? You don’t need to learn about everybody else’s AML.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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