Self-Advocacy: Advice for Being a Pro-Active MPN Patient

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Self-Advocacy: Advice for Being a Pro-Active MPN Patient from Patient Empowerment Network on Vimeo.

How can myeloproliferative neoplasm (MPN) patients be more pro-active in their care? Dr. Brady Stein shares advice to help patients educate themselves about the disease, while finding the right balance of knowledge to prevent them from feeling overwhelmed. 

Dr. Brady Stein is a hematologist focusing on myeloproliferative neoplasms (MPNs) at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more about Dr. Stein, here.

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Transcript:

Katherine:

Let’s talk about patient self-advocacy now, Dr. Stein. Patients can sometimes feel like they’re bothering their healthcare team with their comments and questions.

Why is it important for patients to speak up when it comes to symptoms and side effects?

Dr. Stein:                   

I smile a little bit because patients – I get a lot of patient emails by MyChart. That’s our medical record, and it’s a secure patient email, and a lot of patients will start their message by saying, “I’m sorry to bother you.”

And, I always say, “Why do you think that? It’s my job. Please don’t apologize for reaching out to me.” So, that’s kind of the first thing. Don’t feel like you’re bothering your doctor. There are certain things that we won’t know unless you tell us, and so, I think that’s pretty clear. When we’re in a patient room and there might be a husband and wife together, and whether it’s the husband is the patient or the wife is the patient, we might ask a question, and we might get, “No, everything is fine,” but all doctors kind of sneak over to the partner, and the partner may be saying – they’re making gestures to us. There may be nonverbal forms of communication to tell us there’s something much worse than what the patient is telling you.

So, again, “advocate” meaning you have to tell us what’s going on with you. If you’re worried about something, please don’t be stoic about it. These diseases are treated a lot based on your symptoms, and so, if you don’t tell uls about your symptoms, we won’t know.

And, in terms of advocacy, I think one of the things is that these are pretty rare diseases. In an academic center, no, this is our focus, but if you’re in a community practice where the doctor’s seeing 10-15 different things during the course of a day, it’s basically impossible to keep up with myelofibrosis, especially if you have one patient in your whole practice. I can’t do that for diseases that I see that I have only one patient. The medical literature can be overwhelming.

So, patients can quickly outpace their doctor in terms of their knowledge of these diseases, but I think it’s really important to read, to learn, and to think about the illness because you may find out things through your research that your doctor wouldn’t know are available. You may find a clinical trial, a new strategy, or a new test that they simply haven’t had the time to keep up with or learn about. So, that’s what advocacy is about. Reading is really important, but you have to find a balance. I want my patients reading, but you’ve got to find the right amount because there’s a certain amount of reading where the patients start to get overwhelmed.

All patients kind of get to this point. They take it in – like taking it in like a fire hydrant in the beginning of the disease, and it’s overwhelming, and then they start to find their balance. I think there’s a point where the reading becomes anxiety-provoking rather than ameliorating anxiety, and all patients just generally find their balance.

Understanding High-Risk vs Low-Risk Disease in ET, PV & MF

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Understanding High-Risk vs Low-Risk Disease in PV, ET & MF from Patient Empowerment Network on Vimeo.

When looking at polycythemia vera (PV), essential thrombocythemia (ET), and myelofibrosis (MF), how is risk determined? Dr. Brady Stein explains factors he examines when assessing risk to provide ideal care for each patient. 

Dr. Brady Stein is a hematologist focusing on myeloproliferative neoplasms (MPNs) at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more about Dr. Stein, here.

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Transcript:

Dr. Stein:                  

For ET and PV, when we talk about high versus low risk, we’re talking about vascular complications, risk of having a blood clot. We’re not really talking about risk of transformation. We don’t have, I think, wonderful, widely used toolkits to predict those things. We know they can happen, but our treatment is still really based on clotting for ET and PV.

And, MF – each couple of years, the tools that are available to assess prognosis become more and more. So, in MF, we’re using the most comprehensive approach – of course, taking into account things like age and demographics, but also, looking at symptoms, looking at the depth and severity of blood count changes, looking at bone marrow features like the degree of scarring, looking at the rise in blast counts, and then, looking at chromosomes and novel genetic markers. So, we’re definitely the most comprehensive in myelofibrosis at assessing prognosis.

How Often Should You See Your MPN Doctor?

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How Often Should You See Your MPN Doctor? from Patient Empowerment Network on Vimeo.

Dr. Laura Michaelis discusses how frequently patients with essential thrombocythemia (ET), polycythemia vera (PV) and myelofibrosis (MF) should visit their doctor. 

Dr. Laura Michaelis is hematologist specializing in myeloproliferative neoplasms (MPNs) at Froedtert & the Medical College of Wisconsin, where she also serves as Associate Professor of Medicine. Learn more about Dr. Michaelis here.

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Transcript:

Dr. Michaelis:             

So, the regular follow-up for myeloproliferative neoplasms, whether that is somebody with ET, PV, or myelofibrosis, is incredibly variable. It depends on the risk stratification. It depends on how frequently you’re needing intervention.

For example, somebody with low-risk polycythemia vera whose hematocrit is elevated and gets a phlebotomy – that person I follow relatively frequently.

Maybe every month or so until I know for sure that the phlebotomy frequency, the number of times we are removing blood, and the frequency, the rate at which that happens, is adequate to ensure that that person is not spending too much time with a hematocrit of over 45 percent.

We know that because randomized trials have shown that a hematocrit over 45 percent leads to an increased risk for bad clinical outcomes.

So, early on in that person’s trajectory, I might check their blood counts more often. Once I know that they are stable and can go longer periods of time, we can relax that out. And that may happen, for example, when they become iron deficient, and the need for phlebotomies decreases.

In somebody with essential thrombocythemia that’s well controlled, again, one might do blood counts every three months or maybe, if things are very stable, every six months.

This is something that I usually make sure that I’m following the national guidelines on and that I adjust from a patient standpoint. If somebody is seeing their PCP in three months and getting blood counts, and things have been stable, then there’s no reason to see more frequently.

Now, when do I see people more frequently? For example, if they’ve started a new treatment, and we want to make sure that their kidneys and liver are doing okay. If I’ve noticed a change in one of their organ functions on the basis of something and do a little tweaking of their medicines, then I might see them more frequently.

So, again, there’s no set-in stone. This is part of the art of medicine, and you wanna talk with your doctor about what you should expect and who’s gonna be following up on the tests that are drawn.

MPN Symptom or Treatment Side Effect? Know the Difference

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MPN Symptom or Treatment Side Effect? Know the Difference from Patient Empowerment Network on Vimeo.

How do you distinguish MPN symptoms from side effects? Dr. Laura Michaelis explains the difference, and why it’s important to share any changes with your doctor.

Dr. Laura Michaelis is hematologist specializing in myeloproliferative neoplasms (MPNs) at Froedtert & the Medical College of Wisconsin, where she also serves as Associate Professor of Medicine. Learn more about Dr. Michaelis here.

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Transcript:

Dr. Michaelis:             

So, symptoms and side effects are sort of different things. Symptoms are the characteristics of the disease process. And these are things that often can vary in intensity. They maybe accumulate over time. But those are things like, for example, uncontrolled itching, fatigue, night sweats, fevers at night, unintentional weight loss, discomfort in the abdomen, or feeling full shortly after eating. Those are symptoms that often bring patients to the doctor’s attention in the beginning. And those are symptoms that can tell us that the treatments that we’re using aren’t working very well.

Now, side effects is the term that we use for problems that evolve when somebody starts a treatment for a condition. So, for example, if somebody starts the treatment of ruxolitinib for myelofibrosis, it is known that one of the side effects of this treatment is a small but significant lowering in the red blood cell [count].

That is a side effect of the ruxolitinib and should be anticipated. So, before you start the ruxolitinib, your doctor should sit down with you and talk about some of the side effects. And that might be one that gets mentioned.

In addition, we know that there is uncommonly – but uncommonly, people can have, for example, shingles reactivation once they’re taking treatment for myelofibrosis. And that might be something for which you take a prophylactic antiviral treatment.

Hydroxyurea has side effects. Interferon has side effects. And those are things that you should think about before you start them. They shouldn’t be reasons not to start the treatment because most people who take medicines don’t have the side effects. But it is something to keep in mind. And when then occur, report them to your doctor.

So, rarely, there’s conditions that occur, and you’re not sure. Is this a side effect to the treatment? Or does this mean the disease is progressing in some way? That’s one of the reasons it’s important to report all of these conditions to your physician because they need to know.

One of the things that can be helpful is there’s a common tool called the MPN SAF, which is a symptom assessment form.

If, periodically, you and your doctor fill that out during a clinic visit, you can sort of understand are those symptoms that I had with my disease responding to the treatment? Can we really measure that things have gotten better since I started treatment X or treatment Y?

And in addition, when you sit down with your doctor at your regular checkups, it’s not just about going through your blood counts and doing a physical exam. It’s also about telling them what you’ve noticed in the last two to three months since you saw your doctor with regard to the treatments that you’re taking.

What You Should Know About Progression in MPNs

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What You Should Know About Progression in MPNs from Patient Empowerment Network on Vimeo. 

Dr. Srdan Verstovsek provides an overview of myeloproliferative neoplasm (MPN) progression and reviews indicators that essential thrombocythemia (ET), polycythemia vera (PV) or myelofibrosis may progress.

Dr. Srdan Verstovsek is Chief of the Section for Myeloproliferative Neoplasms in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Verstovsek, here.

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Transcript:

Dr. Srdan Verstovsek:

When we talk about ET and PV, they should be life-long conditions without much of a change. It’s uncontrolled blood cell count and thromboembolic events, which are then subject to a therapy, and the goal of therapy is to decrease the thromboembolic risk.

There is still, in some smaller proportion of the patients, a risk of a disease change on its own. We talk about the genetic testing that can reveal a change in genetic complexity of the disease, which may be responsible for a change down the road. Or abnormalities in chromosomes that can be seen at the time of diagnosis in some of the patients with ET and PV, not very often, which may predispose patients to a change down the road, a change to more aggressive condition.

So, a smaller proportion of the patients, perhaps 10 – 20 percent of the patients between ET and PV, can over time, long time, acquire fibers in the bone marrow.

That can lead to anemia actually, progressive increases in spleen, bone marrow cells in blood, that would be then a change to myelofibrosis. And a very small percent of the patients actually can change to acute myeloid leukemia, with the baby cells in the blood and the bone marrow, these are called blasts.

They should not be in the blood in the wrong person. They should be below 5 percent in bone marrow in normal person, but if they go above 20 percent, we call that acute leukemia.

So, transformation of ET or PV to myelofibrosis or acute myeloid leukemia, are fear, and obviously can lead to a shorter life expectancy. And so, one can certainly worry about that, but again, it is in a smaller proportion of the patients, and we don’t usually worry that much about it. However, the worry does exist, that’s why you are asking me about it, and the problem is we don’t have medication that would be known and proven in prevention of that biological change of the disease in some patients.

In myelofibrosis it’s similar situation, 20 – 25 percent of the patients change to acute myeloid leukemia, and we don’t have real medication that would be preventing that change.

Should MPN Patients be Retested for Genetic Mutations Over Time?

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Should MPN Patients be Retested for Genetic Mutations Over Time? from Patient Empowerment Network on Vimeo.

MPN expert, Dr. Srdan Verstovsek provides insight into what factors determine whether MPN patients should undergo additional bone marrow biopsies and genetic testing over time.

Dr. Srdan Verstovsek is Chief of the Section for Myeloproliferative Neoplasms in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Verstovsek, here.

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Transcript:

Dr. Srdan Verstovsek:

We already know, everybody knows, I would think, that the living tissue does change over time. And when a patients have doubt, I tell them, “Look, my hair has not been grey all my life.” Everybody laughs. That happens with the bone marrow biopsy results, right? They change over time because the bone marrow does change over time. It’s not the same, and if you have the disease, disease cells, let’s call them malignant cells, they may acquire new mutations as they divide. If they already have some mutations that they’re present at the time of diagnosis, they are actually more prone to get more of those mutations over time.

And so, it may then be wise, and that’s what your question is about, to occasionally test patients and see whether there’s any change. Not perhaps in the number of fibers, or number of different cells, but genetically are there any new mutations which would make that disease perhaps more aggressive.

Unfortunately, the situation with repeated testing is complicated by price of the test. The testing can be done on blood, but it’s very expensive. We’re talking about thousands of dollars, and it’s not justifiable at the moment to do that every six months, or once a year for example, to see about any change because, it may not change what we do. It requires a clinical change, not just a genetic change for one to do something different, and something different would be referral to a bone marrow transplant, sooner rather than later.

So, first of all, repetitive testing would be useful in patients that are borderline for the decision of the transplant, not in everybody, because that’s the only intervention that would be affected by that testing. And then, even in these situations, you would need to have a clinically relevant abnormalities beyond just a new mutations.

That means a bigger spleen, or losing weight, or having profound anemia now. So, what basically this comes down to is, we follow the patients closely, and when there is a clinically relevant change, that would ask for a bone marrow biopsy and genetic testing, then we can justify that, and then we change what we do. So, it is cumbersome to sit tight and wait for a change, I understand that, but that’s the reality at the moment.

Which Tests Are Necessary Following an MPN Diagnosis?

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Which Tests Are Necessary Following an MPN Diagnosis? from Patient Empowerment Network on Vimeo.

MPN expert, Dr. Srdan Verstovsek, explains why a bone marrow biopsy is essential following a myeloproliferative neoplasm (MPN) diagnosis and its role in confirming whether a patient has essential thrombocythemia (ET), polycythemia vera (PV) or myelofibrosis (MF).

Dr. Srdan Verstovsek is Chief of the Section for Myeloproliferative Neoplasms in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Verstovsek, here.

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Transcript:

Dr. Srdan Verstovsek:

By and large, we would like people to have a bone marrow biopsy done. In fact, I would say that myelofibrosis cannot be diagnosed without a bone marrow biopsy. Polycythemia vera, in occasional cases, can be diagnosed without the bone marrow biopsy, even by the national guidelines. And essential thrombocythemia, I would say, that should have, although that is not norm in clinical setting, a bone marrow biopsy as a part of the disease diagnostic process.

This is to say that the diagnosis of any of these three conditions, ET, PV, or myelofibrosis, does not depend solely on the bone marrow biopsy.

I’ll give you an example of the myelofibrosis. You have to have a biopsy that shows abnormalities in different cells in the bone marrow. Megakaryocytes are the key. So, cells are different in number, size,shape, and colors, and you have fibers. Sometimes you don’t even have a fibers. But then, you have to combine this.

Maybe, abnormalities in blood cell count. In the blood chemistry there is an LDH, lactate dehydrogenase chemistry test that usually is tested for. And then, you have a physical exam, enlargement of the spleen. And the type of the white cells in the blood. So, you have a combination of the bone marrow, blood chemistry test, and the physical exam that all have to come together for diagnosis to be made for myelofibrosis.

I always ask my fellow, and doctors in training, who actually makes the diagnosis? It’s the clinician. If you just look at the bone marrow, you may say there is myeloproliferative neoplasm and there are some fibers, but you have to have these other factors to make a diagnosis of myelofibrosis. And fibers, for example, do not really say that the patient has myelofibrosis. Fibers can be present in PV, polycythemia vera, in 20 percent of the patient at the time of diagnosis of PV.

So, fibers on its own doesn’t mean myelofibrosis. Of course, there are other diseases that can cause fibers, other bone marrow diseases that have nothing to do with myelofibrosis or polycythemia vera.

So, it is rather complex problem, and it is not easy to make a diagnosis. We actually looked at that, and 15 percent of the patients that come through the door here at MD Anderson, have a change in diagnosis after our own assessment. So, some experience does count, I would say does counts a lot, because of complexity.

MPNs and Coronavirus: What Patients Should Know

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MPNs and Coronavirus: What Patients Should Know from Patient Empowerment Network on Vimeo.

Dr. Srdan Verstovsek provides guidance for patients with myeloproliferative neoplasms (MPNs) related to coronavirus (COVID-19), stressing the necessity of continued communication with their healthcare team.

Dr. Srdan Verstovsek is Chief of the Section for Myeloproliferative Neoplasms in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Verstovsek, here.

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Transcript:

Dr. Srdan Verstovsek:

When we come to the COVID pandemic here, and the effect on our patients with myeloproliferative neoplasms, of course, that is something that is very serious. Our patients, particularly those with advanced myelofibrosis, are at a high risk of having complications from infection if they get infection. Perhaps less so for patients with ET and PV, which are more healthier, if you like, although they have myeloproliferative neoplasms.

So, our focus here is, first of all, like it is for anybody else, including myself, on prevention.

Obviously, that would be common sense and logical to try to prevent getting infected. And then, also to try to be in best possible health. Taking medications as prescribed. Being in touch with your doctor. If you cannot come to a physical exam, which is understandable because of possible increased risk through the transportation perhaps, then being in touch through telemedicine. We call, and we see our patients online. That is fine. We can do the bloodwork from the distance.

So, taking medications, being fit, and being as healthy as you can with the disease. But taking medications and controlling your risks, not allowing disease to take ahold of you, and then you get infection and you’re gonna be in trouble.

So, really communications with the doctors, taking medications, and I would say, occasional, with all precautions, visits.

Because, for example, with myelofibrosis patients, I really need to feel that spleen and the liver and see how is the patient’s weight, and not only ask over the telephone, what’s your symptoms are, or what your blood count is. I can see this on the computer. We really need, occasionally, myelofibrosis patients to come over to our clinic to be examined.

And here, in the clinic, we have extraordinary precautions. No visitors. No people to accompany patients in. So, to minimize any interactions with anybody who possible can bring any undesirable infections through the door, not just COVID, but any other. And the staff is prepared to provide excellent care with protection that is in place.

So, I think that will be my message: Prevention; staying on top of your disease; being in best possible shape with the disease; staying in touch with your doctor; and, occasionally, still visit the doctor if at all possible, particularly for myelofibrosis patients.

An Expert Shares Key Steps to Take Following an MPN Diagnosis

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An Expert Shares Key Steps to Take Following an MPN Diagnosis from Patient Empowerment Network on Vimeo.

MPN expert, Dr. Srdan Verstovsek, provides essential advice for patients that are newly diagnosed with essential thrombocythemia (ET), polycythemia vera (PV) and myelofibrosis (MF).

Dr. Srdan Verstovsek is Chief of the Section for Myeloproliferative Neoplasms in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. 

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Transcript:

Dr. Srdan Verstovsek:

Obviously, it’s very stressful for any patient to be told that there was something wrong with their bone marrow. You’re talking about myeloproliferative neoplasms; these are neoplasms of the bone marrow. And one would like to first make sure that the diagnosis is correct. So, if there is any doubt, second opinion is always very good to do.

And I tell my patients come to me as a first doctor, if they have concerns, ask me questions. If they wanna go for a second opinion, please go.

The second is understand what this diagnosis means. For prognosis, for the lifestyle, educate yourself. Be educated about what this means because it’s lifelong disease. We hardly ever cure anybody. It is possible in some cases with a bone marrow transplant, but in general, this is life-long condition, any of this Myeloproliferative Neoplasms.

And then, number three, involve your family or friends. Family in particular, because caregivers needs to be informed what this means for you if there is any effect on your quality of life or on longevity. So, don’t leave the disease alone. So, these would be my three points to make people aware of what this all means when you have MPN.

Verify, educate, and share that knowledge and experience.  

How Does Genetic Testing Impact Your MPN Treatment Options?

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How Does Genetic Testing Impact Your MPN Treatment Options? from Patient Empowerment Network on Vimeo.

How can genetic testing results impact your treatment and treatment response? Dr. Ruben Mesa provides an overview of common mutations associated with essential thrombocythemia (ET), polycythemia vera (PV) or myelofibrosis (MF) and how identification of these mutations are moving research forward.

Dr. Ruben Mesa is an international expert in the research and care of patients with myeloproliferative neoplasms (MPNs). He serves as director of UT Health San Antonio MD Anderson Cancer Center in San Antonio, Texas. More about this expert here.

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Transcript:

Dr. Ruben Mesa:

We are learning much more about the genetics of Myeloproliferative Neoplasm, as we truly are about the genetics of many diseases. First, when I speak of genetics, these are not the genes we think of of inherited genes that are passed from mother and father, to son or daughter. These are the genes in ourselves that potentially can change over the course of our lives, and those changes or mutations can be associated with diseases.

So, what we have learned is that the genetic changes that are associated with myeloproliferative neoplasms are important, both in terms of predicting how the diseases might behave, and also, potentially in terms of therapies. The genetic changes fall into two different groups.

There’s a first group of the most common mutations that we think are important in driving the disease. The most common is the mutation in a protein called JAK2. That’s a mutation in about half of the patients with ET, half with PV – or half with myelofibrosis, and the majority with polycythemia vera. There is mutations in calreticulin. That’s about in a third of patients with ET, and a third with MF. And then, there’s mutations in MPL, which are present in a handful of patients with ET and with MF.

But in addition to those three mutations that tend to be mutually exclusive; patients tend to only have one of those, and there’s a small group of patients that do not have any of those three. But there’s another group of mutations that we have learned about.

That we are able to obtain on panels of sometimes anywhere from 40 to 100 genes that may or may not be changed or mutated in diseases like MPNs and the implications of what those pattern of changes in those mutations have for those patients. 

Newly Diagnosed With an MPN? Start Here.

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Newly Diagnosed with an MPN? Start Here. from Patient Empowerment Network on Vimeo.

If you’ve been diagnosed with an MPN, such as essential thrombocythemia (ET), polycythemia vera (PV) or myelofibrosis (MF), Dr. Ruben Mesa outlines key steps you should take, including a visit with an MPN specialist.

Dr. Ruben Mesa is an international expert in the research and care of patients with myeloproliferative neoplasms (MPNs). He serves as director of UT Health San Antonio MD Anderson Cancer Center in San Antonio, Texas. More about this expert here.

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Transcript:

Dr. Ruben Mesa:

Patients who have a Myeloproliferative Neoplasm should consider seeing an MPN specialist at least at some frequency. The myeloproliferative neoplasms are not common illnesses. They’re not exceedingly rare, but they’re not common. And there is many nuances in terms of how we best diagnose the disease; the discussion we have with you regarding what are the treatment plans and goals, and then putting that plan into effect.

So, frequently, there’s a value in seeing someone who focuses on MPNs to help to establish that plan, and then frequently, there is a home physician, hematologist, or medical oncologist that works together along with the specialist in terms of managing the patient.

When patients first come for their visits related to an MPN, they have many questions. You know, they’re not common diseases, and people typically don’t have much experience with them. They’ve not had a family member that’s afflicted or someone at work. So, frequently, it comes on out of the blue. People will frequently, sometimes, go online and get a lot of information, but sometimes too much information; information that may or many not be appropriate for them.

So, there are many questions that are valuable, and I always advise patients to write down their questions ahead of time because sometimes in the heat of the moment, having a conversation, particularly with a new physician or provider, those questions may not, necessarily, be top of mind for them. So, we can go through those questions clearly.

I think key questions, I wouldn’t limit it to one key question, but I’d say I would put them in categories. 1.) Truly understanding the diagnosis; what’s the actual diagnosis that that patient has. 2.) What does the physician think are the risks that patient has? With each of the diseases, there are different risk classifications, and that will also help to give patients a frame of reference if they read other information about their disease online from highly reputable sources, or other educational sort of materials.

To understand, what is the recommended treatment plan. The plan may or may not included medications and understand what those medications are intended to do, and what their side effects may be, or what to anticipate.

It may or may not include aspirin, it may or may not include phlebotomy, or it may or may not include other therapies. So, understanding that diagnosis, understanding the risk, and understanding, what is the recommendation in terms of treatment.

MPN Terms Defined: What is Leukocytosis? What is Anemia?

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MPN Terms Defined: What is Leukocytosis? What is Anemia? from Patient Empowerment Network on Vimeo.

Physician assistant, Lindsey Lyle, provides definitions for leukocytosis and MPN-related anemia, both commonly used terms when discussing myeloproliferative neoplasms (MPNs).

Lindsey Lyle is a physician assistant at the University of Colorado Cancer Center, specializing in hematological malignancies with a subspecialty in myeloproliferative neoplasms (MPNs). More about this expert here.

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Transcript:

Lindsey:

There are a few terms that often come up. No. 1 is “leukocytosis.” This often is a term that’s thrown around, especially in relation to myelofibrosis and also polycythemia vera, and this term means an elevated white blood cell count. That is a common thing that, as medical providers, we may just throw around in the room and not necessarily think about the fact that we should explain that a little bit better.

Additionally, “anemia” is a term very often used when talking about myelofibrosis, and that just means a decrease in red blood cells.

Often, people associate anemia with iron deficiency because this is probably the most common form of anemia, but as it relates to MPNs – and specifically, myelofibrosis – it is generally a problem with production that does not have anything to do with iron, but is actually more so just related to the disease and how the red blood cells are impaired because of the fibrosis of the bone marrow.

Essential Lab Tests for Myeloproliferative Neoplasm (MPN) Patients

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Essential Lab Tests for Myeloproliferative Neoplasm (MPN) Patients from Patient Empowerment Network on Vimeo.

 Lindsey Lyle, a physician assistant specializing in MPNs, reviews the lab tests that should be administered following an MPN diagnosis and how the results could affect overall care.

Lindsey Lyle is a physician assistant at the University of Colorado Cancer Center, specializing in hematological malignancies with a subspecialty in myeloproliferative neoplasms (MPNs). More about this expert here.

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Transcript:

Lindsey:

When somebody is diagnosed with an MPN, there are a variety of tests that are important for coming up with treatment strategies. And so, really, before starting treatment, it’s fairly imperative to have a CBC, or complete blood count, which was very likely done that led to the diagnosis of the MPN, but that’s very critical, as well as having a differential. This is basically just looking a little bit deeper at the white blood cells and their components, so that’s a critical part of the CBC, or complete blood count.

And then, having a chemistry panel, just to look at organ functioning, such as the kidney functioning and the liver functioning, as well as different electrolytes that may be indicative of something going on that would maybe impact treatment.

Additionally, having a bone marrow biopsy with molecular testing is advised. This is very critical in leading to the diagnosis of the MPN and then, also, really differentiating what subtype of MPN a patient may have.

The bone marrow is very critical for this purpose, and the genetic testing helps us to understand perhaps if a patient is having a higher-risk disease or a lower-risk disease and can help guide treatment as well. There are a variety of other chemistry tests that are done that can help specifically when looking at patients with polycythemia vera. This may be called an erythropoietin level.

Additionally, iron studies are generally recommended before starting treatment for MPNs, just to assess iron storage, availability, and that sort of component to the treatment may vary depending on that result. Additionally, if patients are having any sort of symptoms related to an enlarged spleen, generally, having an imaging study may be warranted if the symptom is quite severe and causing problems, and getting a baseline prior to starting treatment is generally a good idea.

When looking at a CBC, there are really three main cell lines that we monitor closely in MPNs regardless of the subtype, and this includes the white blood cell count, the red blood cell count or hemoglobin and hematocrit – those are measures of the total red blood cell count – and then, also, platelets. And so, these really are three different types of cells that your bone marrow produces that help with different functions.

And so, monitoring for any sort of changes within these three cell lines – white blood cells, red blood cells, or platelets – can really help us know maybe how the disease is changing, how a patient is responding to treatment, so these three key laboratory values are very necessary and really help us as providers and U.S. patients monitor progress, or for any changes in a positive way, or perhaps in a way that needs to be addressed.