Published on June 28, 2019
During this Ask the Expert segment, Dr. Daniel Pollyea, from the University of Colorado School of Medicine, explains what testing is recommended to identify key features of an individual’s acute myeloid leukemia (AML) before starting treatment. Dr. Pollyea also discusses the value a second opinion from an AML specialist can bring to a patient’s care, and why it’s helpful to partner with an academic medical center in the early days of diagnosis. Watch now to learn more.
This program is sponsored by AbbVie, Inc and Genentech, Inc. It is produced by Patient Power in partnership with The Leukemia & Lymphoma Society (LLS) and NeedyMeds. These organizations have no editorial control, and Patient Power is solely responsible for program content.
Transcript | What Testing Is Recommended Before Starting AML Treatment?
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.
Okay, so for our viewers, family members, and patients, it sounds like if you're dealing with AML, it's crucial to have the right testing so that you and your doctor know of these different options, now, in ones that are investigational in clinical trials, what may line up with your personal situations, is that right?
That's absolutely right. So, this disease is very complicated. And so different from person to person. So, AML is one disease, but everyone's case of AML is unique to them. It really is. So, for a long time, for many years, that was a barrier because of those that heterogeneity; the differences in the disease. But over time, we've become able to really identify some key features of individual disease, and everyone has a unique disease, but we're using sort of the same parts.
And so, we're able to identify commonalities between patient's diseases, and that has to be done at the time diagnosis. So, the only time—and here I'm really talking about gene mutation testing, almost every AML patient has at least one gene that is mutated that is responsible or contributing to their disease. And most patients have several. And we've developed mutation gene panels, you know, 50 different genes that we can test for, at the time diagnosis to determine what unique features a patient has.
Because if a person has a combination of three of the 50 genes, that's likely to be unique from another patient who has another three genes, and the prognosis, and even the treatment plans are gonna differ based on what constellation of gene mutations you have. The only time to get that information, is at the time of diagnosis. We also repeat it if people relapse, but really, the time to really understand a person's disease is that very first bone marrow biopsy. That's an important message we’re trying to get out.
Okay, so some people may have gone to a community hospital because they were really sick and then suddenly, you're in a hospital, there may not be an AML program or a specialist there. So, let's acknowledge that people could be anywhere, not necessarily at the University of Colorado at your big medical center. So, what can patients and family members be asking so that this revolution in AML care can be brought to bear for them?
Yeah, so that is a great point. And resources are not the same all over the country. I think all of us have a preference for patients at the time of diagnosis to be treated at a large academic medical center. I think there is some data that outcomes are probably better when that is a possibility. So, we often will take newly diagnosed patients as transfers to our center from all over the region. And sometimes that's appropriate.
And so, that's a question that could be asked if you're at a smaller community center, whether or not it would be appropriate to be transferred over to a larger regional center, if you're already inpatient. If you're outpatient and things are going at a pace at which it's not so much of an emergency, then seeking a second opinion at a large center where a lot of AML experience is had would be important.
Sometimes a person finds themselves, like you said, in a smaller regional hospital without much leukemia experience, and there really aren't options to go to a bigger place because there's limitations based on safety or maybe just insurance and things like that can be barriers. So, then you'd want to just nicely ask whether the treating physical, you know, if they don’t have a lot of experience with this disease, which is understandable, it's a rare disease, only 30,000 new cases in the United States each year, whether they have a colleague at another institution who they feel comfortable talking to and sharing the case with, and getting some advice, or having a discussion about.
That's a very regular routine thing that most community-based oncologists are very amenable to. Most of them have that resource, that partner that they work with at a larger center. And so, just making sure that they're speaking to them in the early days of your diagnosis would be important.