How Likely Is It for a Patient's Myelofibrosis or MDS to Transform Into AML?

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Topics include: Diagnosis and Understanding

What percentage of people with myelodysplastic syndrome (MDS) or a myeloproliferative neoplasm (MPN) disease transform into acute myeloid leukemia (AML)? What symptoms can patients look for that indicate disease development? Our expert panel including Dr. Ross Levine and Dr. Gwen Nichols explain the signs of disease progression, and share what tests are done for patient risk assessment. Watch now to learn more. 

This is a Patient Empowerment Network program produced by Patient Power, in partnership with The Leukemia & Lymphoma Society (LLS). We thank Astellas, Celgene Corporation, Novartis, Pfizer and Seattle Genetics for their support.

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Transcript

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. 

Andrew Schorr:          

Okay. So, we mentioned, in your case, MDS, some others of our viewers, they have these other conditions that may lead to AML. You talked about all of these different types, Ross. Maybe 20 different types of AML. What percentage of those are people who have transformed from something else? Do you have any sense of that?

Dr. Levine:                   

It’s a substantive minority, but it’s a minority. Meaning that more patients come in and don’t have a history of MDS or MPN. But it’s probably in the order of 20 or 30 percent. So, it’s a vocal minority.

Andrew Schorr:          

Okay. Let’s ask the reverse question is, if I have myelofibrosis, or someone has MDS, what’s the likelihood that we will be at risk of transforming to…

Dr. Nichols:                 

…the two are different.

Dr. Levine:                   

Great question. The good news there is it’s also still a minority. However, we can measure certain things in patients. And there are slightly different measurements we do that would indicate a higher risk. So, for example, starting to see slightly increased number of immature cells in a patient with either myelofibrosis or MDS, the last number we follow. If it goes up, it’s a warning sign that maybe the disease is starting to act up. We watch patients with myelofibrosis who develop worse and worse anemia. So, as your red count goes down, and you need more and more transfusions, that’s a warning sign.  

And then, the other thing we do is between genetic tests, molecular tests, and measuring the chromosomes, different patients have different risks. So, that’s the kind of thing, again, that an expert who can plug all of that in to very good formulas can actually give different people who both have MDS or both have myelofibrosis, very different answers that can be tenfold difference in risk.

So, there’s no one answer for all patients, even for those diseases. And that’s why you’ve got to—and you need to know that, as a patient and your family. 

Andrew Schorr:          

So, Gwen, how about this then, speed? So, we talked about being acute. Let’s say some of this stuff starts showing up. Let’s talk about the people transforming. So, he thought he had MDS. And then, they said, oh, no, it’s changing or for me or my community in the myeloproliferative neoplasm community, things are changing. How quickly do we need to move, whether it’s to one of these new approved treatments or a clinical trial or a transplant? How quick do things need to happen? Or is that not a one size fits all? 

Dr. Nichols:                 

It is not a one size fits all. And I just need to reinforce what Ross has said. 

The people who understand what the markers are of higher risk versus lower risk will tell you what the speed is likely to be and how often you need to be followed up, how much you should prepare for what the next steps would be. There are people where they have myelodysplastic syndrome, and they have that their entire lives. And there are people with myeloproliferative diseases where it is very slow. And that is not their major health problem. You need someone who can look at that and look at all the risk factors and tell you specifically for you. And that’s what we mean by precision medicine.  

Precisely for you, what is your risk, and what’s the likelihood. And a good doctor will tell you how worried you need to be. And that’s really what’s important for a given patient because I think we underestimate how much being anxious about your diagnosis impacts the quality of your life.

And so, I’d encourage people to get the information to decrease that anxiety level so that they can have their life back. 

Dr. Levine:                  

I think that’s absolutely right. However, once the disease becomes AML, there is an element of urgency in everybody. I think a general rule is that week is the longest we want to sit on that, probably, right, Rick. And for this trial we’re doing with the molecular profiling, we make our treatment assignments in seven days. And that’s indicative of the kind of pace, once somebody has AML, that we’d like to begin treatment. Roughly within a week, maybe 10 days, at the most.

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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Page last updated on May 10, 2018