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Diagnosing ET, PV & MF: What Testing Is Required?

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Published on January 4, 2017

MPN experts Dr. Srdan Verstovsek and Dr. Olatoyosi Odenike discuss the necessity of blood tests and bone marrow biopsies. Dr. Odenike explains how diagnostic testing is used to confirm the MPN diagnosis and get the precise diagnosis of polycythemia vera (PV), essential thrombocythemia (ET) or myelofibrosis (MF). Dr. Verstovsek explains how frequently one should have lab tests and how these results help doctors to individualize a treatment plan for patients.

This town meeting was sponsored by the Patient Empowerment Network, which received an educational grant from Incyte Corporation. It was produced by Patient Power in partnership with The University of Texas MD Anderson Cancer Center. 


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Transcript | Diagnosing ET, PV & MF: What Testing Is Required?

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:

So what about testing, doctor? How do we know what we’re dealing with? 

Dr. Odenike:       

Most patients present either with a symptom or sometimes they present just because they went to the doctor for a routine medical examination which included blood tests such as blood counts, and they were found to have an abnormality in their blood counts. Because they are considered blood-related cancers, that finding often leads to referral to a hematologist so a specialist in blood and bone marrow-related disorders. And the testing then progresses beyond looking at the blood counts, depending on what the blood counts show; that leads to a series of additional blood tests and/or a bone marrow biopsybeing performed.

And putting all of these things together so talking to the patient, examining the patient, looking at the blood work, looking at the bone marrow findings, we can generally come up with a more precise idea of which of these conditions is at play.

Andrew Schorr:

Okay, Dr. Verstovsek, so you and I have talked before. So maybe can we get a shot of the audience just for a second? I just want to get a show of hands. So let me get set, here. How many of you—just raise your hand—have had a bone marrow biopsy? Whoa. How many have had more than one? Quite a few. Okay, not our favorite test. So Dr. Verstovsek, why would these conditions with some of them, do we need a bone marrow biopsy? Don’t you have something better? Why do you have to stick a needle in our hip? What’s the point? 

Dr. Verstovsek: 

I think the question is outstanding. It does connect with what we’ve discussed so far. First, there is no one test that will diagnosis either ET, PV or myelofibrosis. It is a combination of different factors. And that would, for example for myelofibrosis, involve looking at the bone marrow, looking at the blood cell count, looking at the types of cells in the blood; not just the number. Looking at the chemistry test called LDH, lactate dehydrogenaseand a physical exam. The spleen can be enlarged. You have to put these things together to fulfill criteria for the diagnosisof myelofibrosis.

I think that’s an excellent example of how we come up with distinction between the three entities. But as you alluded to at the beginning, we try to put people in the boxes: you have ET, you have PV, you have myelofibrosis. And people stay in these boxes almost all the time but not always. There are occasional patients that can change and acquire signs or characteristics of a high red bloodcell count when they started only with high platelets.

So there is a possibility—rarely—to change from the box called ET to the box called PV, or from box ET and PV to the box called myelofibrosis. None of this happens very often, but it does happen. And then we get patients here that are confused, and the doctors are confused, and we try to clarify that because the path of change, the transformation, is not overnight. It happens over a period of time and people may come and say I have ET, and now I have two diseases: ET and PV. 

No, you have one disease that is changing over time. So part of the equation therefore to qualify the disease and make sure that we know what we are talking about, especially if you are changing which is not common, again, is the biopsy of the bone marrow. Because that is, after all, a disease of the bone marrow.

Andrew Schorr:

Just so everybody understands, those cellsin your bones like your hip, that’s where we make our blood cells.

So that’s the factory. So you go to the source to see what’s going on. Okay. So you figure out what somebody has. Now, I know in my own case now, I'm on a medicine. I take a JAK inhibitor, ruxolitinib (Jakafi) which is right now the only approved JAK inhibitor. I know we’ll talk about others you’re working on. And so I actually have a blood test once a month where we’re just watching to see if anything changes. And I alluded to I was previously diagnosed with leukemia, so I'm a little more complicated. So, Dr. Verstovsek, what about frequency of testing? How do you decide how often somebody needs to have any of these tests, whether it’s a blood test…what you need?

Dr. Verstovsek: 

This really has to be individualized. Like you were saying, everybody lives in a different spectrum of theirconditions with different characteristics, and no patient is the same? 

The same applies to prescribing medications, assessing risk of blood clot that comes, for example, with ET or PV, or the risk of having anemia, or progression to even sometimes acute leukemia in patients with myelofibrosis. These items or problems that arise with living with the disease, they have to be individualized. And monitoring patients, therefore, depends a lot on what the disease does to a patient. Is the blood cell count really affected a lot? Is there anemia present? 

Then you would monitor more often than otherwise. If the blood cell count is normal and you don’t have any symptoms of spleen, you are kind of early in the disease process; you might monitor the patient every three or four or five months. And then, of course, the therapies, if they are in place, you monitor the therapy’s effect on the body more often in the beginning 

Andrew Schorr:

How’s it doing?

Dr. Verstovsek: 

And then later, less often.

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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