When I'm reviewing a CBC, first of all, I am looking at the hematocrit because I do know that strict control of hematocrit less than 45% is key for reducing thromboembolic events and cardiovascular events. This is based on the CYTO-PV study.

The next thing I look at is white blood cell count. So there was a multivariate analysis within the same study that showed that white blood cells greater than 11,000 was also associated with increased risk of thrombotic events.

My goals for patients with advanced polycythemia vera are to manage their counts, to reduce risk of thromboembolic events, ensuring that their hematocrit stays less than 45% and their white blood cells stay less than 11,000.

So I have to look at what treatment strategy we're using and then, monitoring the trends is really the most important thing. And so, if I have a patient that I'm seeing weekly, for example, and their hematocrit is going up and up and up, then maybe in a month I'm saying, "Okay, we need to maybe implement some new strategies here." Also, in patients perhaps who have been very stable for a while, you know, maybe 3 months of increasing hematocrit levels to the point of needing phlebotomy or perhaps increasing white blood cells, that would really indicate to me that there needed to be perhaps a change.

When I am looking at a patient over time, it actually varies per patient. So I have to look at what treatment strategy we're using and then, monitoring the trends is really the most important thing.

When I'm caring for a patient with advanced polycythemia vera, I'm looking at them comprehensively.

In the Landmark survey, 66% of patients reported having significant symptoms that impacted their quality of life. And the biggest one of these was fatigue, which was reported in 73% of these patients.

Additionally, in another study of over 1300 patients that looked at hydroxyurea use in patients, we saw that the majority of patients, despite treatment with hydroxyurea, were still having symptoms. So in these patients with advanced polycythemia vera, monitoring them for symptoms is a big part of what we do because we know that hydroxyurea doesn't necessarily hone in or target the cytokine-related side effects.

Assessing symptoms in patients with advanced polycythemia vera is a very important part of my care plan of the patient. These patients aren't maybe necessarily able to work or to function in their home life as well as they used to in the past.

It's important to ask patients pointed questions about their symptoms as some of the symptoms related to polycythemia vera can be quite vague. Patients may not actually know that the symptoms they're experiencing are a part of their disease or a manifestation of their disease. It's also very important to try and quantify as much as possible these symptoms, especially such as fatigue.

So if a patient comes to me and tells me they're tired, I have to really try to dig into what does that mean for the patient. Are they able to walk up a flight of stairs? Are they able to unload the dishwasher? Are they able to cook dinner? How many naps are they taking a day? So you have to dig a little bit deeper into the specifics of these symptoms that are reported from the patient.

Additionally, when talking to the patients about these specific events that may be occurring, involving the caregivers as they are sometimes more objective about how the patient is actually feeling.

There is a short 10-question form that the patients can use in collaboration with their providers to track how their symptoms have changed over time.

So assessing the spleen in polycythemia vera is just as in any other disease process at its start. So in a routine physical examination and abdominal exam, we'll be palpating for a spleen. In polycythemia vera, only about perhaps up to 30% of patients have splenomegaly. However, on routine exams, if on palpation you're noticing that the spleen is getting larger and larger, that may indicate progression to perhaps myelofibrosis or more advanced state of their polycythemia vera.

It is important to actively monitor patients with advanced polycythemia vera because this can be a dynamic disease process and things can change over time, patients may develop symptoms—or the symptoms that they currently have may worsen. So it's very important to keep a close eye on these patients.

When a patient walks through my door with a new, worsening symptom, my primary thing is to think of what could be the contributing etiologies to this change in symptom burden. It’s one thing to have fatigue that maybe impacts how you feel in the afternoon. It’s another thing to have fatigue so severe that you can’t get out of bed. So when there is a change in symptom, I need to know about it.

One of the things I think about is whether or not in polycythemia vera: is there a change of blood counts that could be related to this symptom change? Another thing is whether or not this could be related to a change in therapy. Specifically, phlebotomy over time can lead to iron deficiency and patients can actually be symptomatic of that iron deficiency, can manifest with fatigue, restless leg syndrome, problems with concentration, or cognitive issues.

Hydroxyurea is another drug that can lead to severe symptoms or problems in symptoms. So gastrointestinal upset, nausea, diarrhea, can have cutaneous symptoms that are worrisome. It’s very important, too, to monitor for disease progression, and the symptoms can help clue us in to that.

In general, it’s important to know the resistance and intolerance guidelines for polycythemia vera as these changing symptoms might actually lead to a change in therapy or a change in management.

Patients with polycythemia vera can experience a continuum of symptoms that impact how they live with their disease. There can be constitutional symptoms like fevers, chills, night sweats, weight loss. There can be symptoms related to blood clots, things like shortness of breath, chest pain. There can be symptoms related to the abdomen, especially related to enlarged spleen like abdominal pain or discomfort, or feeling full easily.

In general, when we look at symptoms it’s important to see that some symptoms will give us a whole picture of the patient, like fatigue, whereas other symptoms might be more specific, such as night sweats. It’s important to note, too, that although one or two symptoms may not seem bothersome, when taken in aggregate, these can severely compromise patient’s quality of life and ability to function.

Polycythemia vera is a chronic myeloid stem cell disorder characterized by excessive red blood cell production. In these patients, they can live a long time, so our primary aim is to try to mitigate the major causes of mortality. The prevalence and severity of symptoms in polycythemia vera makes managing symptoms a primary treatment priority.

In polycythemia vera, blood counts and symptoms can be independent factors. We know that regardless of what a patient’s blood counts are or whether or not their disease is well controlled, they can still have severe symptom burden. So this means that those patients that we otherwise might think look good on paper might have problems going home and seeing their kids, going to work, or even just doing activities that they enjoy.

Symptoms should be monitored early in the disease course as well as over time, as symptoms can plateau, increase, decrease, or just change with therapies.

For healthcare providers, symptoms should be of paramount concern. This is because symptoms are the clues that will help to guide our management decisions in polycythemia vera.

The important thing about symptoms is that they can clue us in to the overall picture of the patient. We know that symptoms can be related to specific features of the disease.

We also look at organ dysfunction. A large spleen is something that a lot of patients with polycythemia vera deal with. We also know that treatments can be related to symptoms, so potentially hydroxyurea and phlebotomy have been shown to have higher symptom burden than patients who are not undergoing those treatments for polycythemia vera.

And you have to take in the whole picture. We have patients who are of different comorbidities, baseline health status, nutrition.

So in general, symptoms can help clue us in to the larger picture of the patient, but also to disease-specific features that we should be paying attention to.

Dr Shammo: Polycythemia vera is a hematological malignancy that may become advanced in a subset of patients despite treatment with hydroxyurea and phlebotomy, resulting in ineffective disease control.

Narrator: Clinical characteristics of advanced PV may include hematocrit greater than or equal to 45% plus one additional risk factor despite treatment with hydroxyurea and phlebotomy. Specifically, clinical characteristics of advanced PV may include hematocrit greater than or equal to 45% plus elevated white blood cell count greater than 11 × 10⁹ per liter or burdensome disease-related symptoms such as fatigue, early satiety, inactivity, concentration problems, and itching.

Dr Shammo: Well, anytime you have a patient who has PV and has a hematocrit greater than 45%, you can correctly assume that the risk of thrombosis is definitely elevated. And the same could be said, although somewhat hampered by the retrospective nature of that finding, but I think it would be reasonable to also say that leukocytosis can also represent another factor for the increased risk of thrombosis. I think the symptom burden of patients who have PV have been largely underrepresented and underappreciated.

Narrator: Actively monitor for hematocrit plus in your patients with polycythemia vera.

Narrator: Clinical characteristics of advanced PV may include hematocrit greater than or equal to 45% plus one additional risk factor despite treatment with hydroxyurea and phlebotomy. Specifically, clinical characteristics of advanced PV may include hematocrit greater than or equal to 45% plus elevated white blood cell count greater than 11 × 10⁹ per liter or burdensome disease-related symptoms such as fatigue, early satiety, inactivity, concentration problems, and itching.

Dr Shammo: The CYTO-PV study was a prospective, randomized study of patients who have PV with the idea of identifying the appropriate hematocrit cutoff level as it relates to the risk of thrombotic events, primarily fatal cardiovascular events, and major thrombosis.

Narrator: In the Cytoreductive Therapy in Polycythemia Vera (CYTO-PV) study of 365 adult patients with PV treated with phlebotomy, hydroxyurea, or both, patients were randomized to 1 of 2 groups—either the low-hematocrit group (with more intensive therapy to maintain a target hematocrit level less than 45%) or the high-hematocrit group (with less intensive therapy to maintain a target hematocrit level of 45% to 50%). The composite primary end point was the time until cardiovascular death or major thrombosis. Baseline characteristics were balanced between the groups. Approximately 50% of patients had received an initial diagnosis of PV within 2 years prior to randomization. 67.1% of patients (n = 245) were at high risk because of age greater than or equal to 65 years or previous thrombosis.

Dr Shammo: And what was shown in this study as it can be seen in the graph, that patients who had looser control of their hematocrit, ie, between 45 and 50%, had 4 times higher chances of developing a thrombotic event and that was statistically significant. It's also worth pointing out too, that the median, the difference between the hematocrit in both groups was on the border of about 3 points. I think it's very important to have a goal of attaining a hematocrit below 45% in every newly diagnosed patient who have PV, and of course, throughout their disease course.

Narrator: Actively monitor for hematocrit plus in your patients with polycythemia vera.

Current guidelines for therapy of polycythemia vera aim to normalize the red blood cell count as well as normalize the white blood cell count and platelets along the way. This is important because even on the cytoreductive therapy, we are decreasing the risk of thrombosis, but we are not eliminating it. That may be in part explained by not looking or paying attention to a white blood cell count. We know that the white blood cell count or leukocytosis, particularly progressive leukocytosis, has implications on the thrombotic risk of the patients.

Traditionally, we have been using two factors that would assess the thrombotic risk. That would be age 60 or over or a history of blood clotting. If one or the other is present, then that particular PV patient has a risk of thrombosis and requires introductional cytoreductive therapy – not only a baby aspirin and phlebotomy. The goals of that effort is to normalize the hematocrit below 45% and maintain it below 45% hopefully without any need for phlebotomy. The other factor will be to control progressive leukocytosis. White cell count increase over 3 or 4 measurements will certainly identify patients at a high risk of thrombosis. And the final factor would be increased thrombocytosis, increase in platelets where you would also like that to normalize.

A thrombotic episode in PV patient is of a major concern because that leads to increased morbidity and mortality. In other words, complications from having impaired circulation in a body leads to impairment of the organ, which can be a brain or a heart, and also leads to untimely death. Even in the cases of a cytoreductive therapy, although we are reducing the risk of thrombosis, there is still underlying risk of thrombosis.

Hi. I’m John Mascarenhas, a Professor of Medicine and the Director of the Center of Excellence for Blood Cancers and Myeloid Disorders.

You may have been diagnosed with polycythemia vera, or PV. Then it's important to know that the majority of patients living with PV have symptoms, but these symptoms sometimes go unrecognized because they are often associated with getting older or may even slowly become worse over time. This can cause confusion and lead you to think that these symptoms are your new normal, but they are not. And these symptoms may be due to your PV.

Also, consider that new or worsening symptoms could be a sign that the disease is progressing, even if your blood counts are well controlled. This is why it’s important to understand your symptoms and make sure you are communicating them with your healthcare professional. When these symptoms are caught early on, they may be easier to manage.

One of the things that I do to make sure we don’t miss these symptoms is to ask my patients with PV to track their symptoms between visits. It’s important that I understand the symptoms they’re feeling so that I can ensure we have the treatment plan that’s right for them.

The PV Symptom Assessment Form will help you communicate your symptoms to your healthcare professional and give them a better idea of which PV symptoms you’re experiencing so they can make an effective treatment plan for you. Make sure you print the form to bring it to your next appointment.

You can download the form from voicesofmpn.com. You can also use the QR code on the screen that will take you directly to the PV Symptom Assessment Form.

Print it out, grab a pen, and let’s get started.

There are three important words you need to know to understand how your PV is affecting you:

Symptom: Which symptom are you experiencing? Severity: How severe is the symptom? Impact on quality of life: How is it affecting your daily life?

When we go over the PV symptoms mentioned in this video, first ask yourself, “Do I have any of these symptoms?” Then, “What is the frequency and severity of my symptoms?” And finally, “Are there activities I once enjoyed but am no longer able to do because of my symptoms?”

You need to be detailed and thorough in explaining them. This will give your healthcare professional a more complete picture of how PV is affecting you.

You will see that the form asks you to rate your PV symptoms. How bad are they? For example, if you are fatigued, how fatigued are you? Is it a mild fatigue? Is it a moderate level fatigue? Or is it “I don’t have the strength to do what I normally do?”

How many times a week do you experience it? What does this fatigue make you miss out on in your daily life? Remember, now’s not the time to hold back. Be as honest as possible with your answers. They will be valuable when talking with your healthcare professional at your next visit.

Let’s start with fatigue. Fatigue is the most common symptom of PV. In a study of patients with PV, the most frequently reported symptom was fatigue with 73%.

If you are feeling fatigue, this may be your PV, and you need to tell your healthcare professional that you have fatigue, how severe it is, and how much it’s affecting your life.

Write down your answers to the following questions to help understand your fatigue and the severity of it. Take your answers with you on your next office visit to talk about them with your healthcare professional.

First, how much does your fatigue or inactivity influence your day-to-day activities? Your work around the house? Your time spent with friends or loved ones? The things you do for fun? Your employment or life?

Do you get short of breath?

Are there activities that you were able to do 3 months ago that you struggle with now?

Next, let’s talk about night sweats, which is a very common symptom of PV. In one study, 45% of patients reported night sweats as a PV-related symptom. They happen due to overproduction of something called cytokines.

If you are having night sweats, this may be your PV. Write down your answers to the following questions so you can communicate the severity of your night sweats and how much they are affecting your quality of life.

Do you experience sweating, particularly at night or in the evenings? Does this require you to change your sheets or clothing? Does this wake you up or affect your sleep? How often has this happened in the past month?

Itching is another common symptom of PV. In a study, 55% of patients with PV reported itching and considered it severe. If you do have itching, the answers to the following questions may help you communicate the severity of the itching to your healthcare professional.

Have you noticed changes in your skin, particularly itching? When you shower, do you ever feel itchy afterward? How often? Have you found yourself taking shorter, fewer, or cooler showers to try to avoid itchiness? What are the other instances when you tend to feel itchy?

Bone pain is another symptom that has been reported in patients with PV. In one study, 23% of patients reported experiencing bone pain. PV-related bone pain is different from the joint pain in your arms and legs that you would feel with arthritis. It’s a deep ache throughout your body. If you have this type of bone pain, these questions may help you share how it’s affecting you to your healthcare professional.

Have you felt any deep achiness throughout your body? Does bone pain ever cause you to change or limit your activities?

Another common condition related to PV is hyperviscosity. Put simply, your blood is flowing slower in the smaller blood vessels due to the overproduction of red blood cells. Elevated blood counts may be putting you at risk for thrombosis.

Thrombosis is when blood clots form in your blood vessels, which can lead to further complications. So, if you are experiencing one of the following symptoms, which may be due to hyperviscosity, such as headaches or visual changes, it’s important that you communicate them to your healthcare professional as soon as possible.

Concentration problems were reported in as many as 36% of patients with PV. Like other PV symptoms, this symptom can be confused for something that happens as you get older—or some other problem entirely. That’s why it’s important to identify when this is happening, and using the following questions to keep track of how often you experience it and how long it lasts.

How often have you felt brain fog, such as memory lapses or problems remembering words or dates, the inability to pay attention for long periods, or problems concentrating that interfere with your ability to work or perform other relevant activities? How has this affected your life? Have you had to change school plans, work, or how you function at home?

If you have any of these symptoms, there’s a good chance that it is your PV, and you should communicate to your healthcare professional the severity and how much they are affecting your life.

Moving on to the spleen. An enlarged spleen is common with PV. As your spleen works harder, it can get bigger. This can cause pain under your left rib or a feeling of fullness

One of the symptoms associated with an enlarged spleen is abdominal discomfort, which occurs in 35% of patients.

Besides pain, here are some other spleen-related PV symptoms to look out for. The answers to the following questions can help you and your healthcare professional determine if your spleen may be enlarged.

Do you have abdominal discomfort, particularly after eating? Do you experience abdominal discomfort at any other time—for example, when laying down flat on your back?

You may also find that you can’t eat a full meal because you’re experiencing a feeling of fullness. PV can cause your spleen to get bigger. Since your spleen is right near your stomach, it can press on it and make you feel full faster than you did before. Some questions that may help you communicate this to your healthcare professional can include:

Do you feel full quickly after meals? Are you losing weight, and if so, how much weight have you lost over the last 6 months?

Another less common symptom is unplanned weight loss. If you’ve experienced this, make sure you share your answers to the following questions with your healthcare professional at your next visit.

Have you been losing weight without trying? Have you lost so much weight that your regular clothes do not fit you anymore?

Another important symptom to identify is fever. This is a sign that your body is fighting off something. Frequent fevers can be a sign that your PV is progressing.

Are you experiencing fevers over 100 degrees? How often are you experiencing a fever and for how long?

If taking your temperature has become so much a part of your daily routine that it seems normal, report it to your healthcare professional.

As you can see, some PV symptoms are easier to spot than others. That’s why it’s important to take a step back, give it some thought, and then track your symptoms. This PV Symptom Assessment Form is one way to do just that. Pay extra attention to anything that is making you feel out of sorts. Even small differences can affect your quality of life.

Remember the three words you need to know to understand how your PV is affecting you:

Symptom Severity, and Impact on quality of life

Once you’ve filled out the PV Symptom Assessment Form, take it with you to your next appointment with your healthcare professional.

Remember, any one of these symptoms can stop you from doing the things you love. If you have any of these symptoms, it is important to communicate them to your healthcare professional, as this may mean that your disease is progressing. Your healthcare professional has treatments that can help, so don’t wait.

Thank you for watching this video.

Hi. I’m John Mascarenhas, a Professor of Medicine and the Director of the Center of Excellence for Blood Cancers and Myeloid Disorders.

You may have been diagnosed with polycythemia vera, or PV. Then it’s important to know that the majority of patients living with PV have symptoms, but these symptoms sometimes go unrecognized because they are often associated with getting older or may even slowly become worse over time.

This can cause confusion and lead you to think that these symptoms are your new normal, but they are not. And these symptoms may be due to your PV.

Also, consider that new or worsening symptoms could be a sign that the disease is progressing, even if your blood counts are well controlled.

This is why it’s important to understand your symptoms and make sure you are communicating them with your healthcare professional. When these symptoms are caught early on, they may be easier to manage.

It can all seem a little confusing.

So, let’s remove the confusion and replace it with confidence by helping you learn more about the most common symptoms of PV, how to spot them, where they come from, and how to communicate with your healthcare professional.

There are three important words you need to understand to know how your PV is affecting you:

Symptom: Which symptoms are you experiencing? Severity: How severe is your symptom? And, Impact on quality of life: How is it affecting your daily life?

When we go over the PV symptoms mentioned in this video, you should first ask yourself, “Do I have any of these symptoms?” Then, “What is the frequency and severity of my symptoms? And are there activities I once enjoyed but am no longer able to do because of my symptoms? And how are these symptoms affecting my quality of life?” This is what you should be sharing with your healthcare professional. This will give your healthcare professional a better picture of how PV is making you feel. And remember, your healthcare professional may be able to help you, but you must tell them about your symptoms.

There are different types of PV symptoms. You may be feeling one or more of these.

Some of the most common PV symptoms are cytokine-related. Cytokines are signaling molecules secreted by blood cells that have an effect on your body.

When you have PV, your cytokine levels are elevated, which causes you to have symptoms.

An example of how cytokines work is when you get sick, say, with a cold, and you feel unwell. It’s the cytokines that activate your own immune response to fight the infection that makes you feel sick. The symptoms of PV are caused by similar cytokines.

Many of these symptoms can be present even if your blood counts are well controlled.

Here are the most common cytokine-driven symptoms to look out for.

The first one is fatigue. In one study, chronic fatigue was reported by 73% of patients with PV. This is not feeling tired from time to time. This is “I don’t have the strength to do what I normally do.” For example, are there activities you once enjoyed but are no longer able to do because you feel too tired?

Experiencing fatigue means missing moments that matter. You may miss out on being with friends; you can’t contribute around the house; and in severe cases, you can’t even get out of bed because of your fatigue.

Shortness of breath is also common. I’ll ask my patients, “Do you get short of breath?” And they’ll say, “No.” I’ll then ask them, “Did you take the stairs to get here?” and they’ll often say, “No. I took the elevator.” Why? “Because I get out of breath when I climb stairs.”

If you are feeling fatigue 2 or 3 times per week, this may be your PV and you should tell your healthcare professional the severity of the fatigue.

In a different study, 24% of all PV patients reported an inactive lifestyle.

Maybe your favorite chair has become more of a home base for you. Staying home has become your new normal. Other people may have noticed too and mentioned it to you.

If you are noticing your inactivity, it’s very likely that it’s your PV. Tell your healthcare professional. Mention the things you are no longer able to do that you could do three or six months ago.

Let’s now talk about night sweats. It is normal to sweat at night if the room temperature is too hot or if you have too many blankets on. But if it’s happening under normal conditions, it may be a cause for concern.

The number of nights each week you wake up with night sweats is also something you should be keeping track of.

You might find yourself waking up during the night with damp or even soaked clothes or sheets.

Are you experiencing night sweats that you weren’t experiencing a month ago? It is very possible that this is due to your PV, and you should mention it to your healthcare professional.

Another symptom associated with PV is itchiness. And everybody gets itchy and everybody scratches. But itchiness due to PV is different.

If you are itching every couple of minutes after you shower or bathe, get out of a swimming pool, or even after you put on a sweater, there is a good chance that it’s your PV. Tell your healthcare professional how often you are itching and what activities are limited due to itching. This type of itching can be severe—like an itch that can’t be satisfied no matter how much you scratch.

Tell your healthcare professional how many activities you used to do that you just don’t do anymore because of Itching. Also, mention how many activities you have missed because of your itching since your last appointment.

Let’s turn now to another PV symptom: bone pain. PV-related bone pain is different from the kind of joint pain in the arms and legs that you would feel with arthritis. It’s a deep ache throughout your body that you may feel all the time. And sometimes this pain may come and go and sometimes it can be steady.

If you are feeling bone pain more than two times a week and it’s keeping you from doing activities, or if you are experiencing other symptoms such as unplanned weight loss or fever over 100 degrees, you should report these to your healthcare professional.

Another common condition related to PV is hyperviscosity. Put simply, your blood is flowing slower in the smaller blood vessels due to the overproduction of red blood cells. Elevated blood counts may be putting you at risk for thrombosis.

Thrombosis is when blood clots form in your blood vessels, which can cause further complications. So, if you are experiencing one of these symptoms, which may be due to hyperviscosity, such as headaches or visual changes, it’s important that you communicate them to your healthcare professional as soon as possible.

Now, let’s talk about concentration problems. I think everyone has experienced walking into a room, forgetting why they’re there, forgetting words, dates, or having brain fog. These are common symptoms of PV, and like other PV symptoms, can be confused for something that happens as you get older—or some other problem entirely.

So it’s important to keep track of how long it lasts and how often it happens. Is it once a week? Two or more times a week? Also, let your healthcare professional know how it’s affected you at your job, at school, or at home, and what you’ve been missing out on doing in your life because of it. This could be a sign that your blood counts are elevated and should be managed as soon as possible.

Let’s now turn to PV symptoms related to an enlarged spleen. With PV, the bone marrow produces too many red blood cells, white blood cells, and platelets. The spleen works overtime to filter the increased number of blood cells but also becomes a source of blood cell production. As a result, the spleen gets larger. And since the spleen is near the stomach, you may feel the following symptoms.

You may find that you can’t eat a full meal because you’re experiencing a feeling of fullness. This could be a recent feeling or maybe it’s been slowly sneaking up on you. You might even feel pain or pressure under the left rib. Remember, eating shouldn’t be painful and it could be a sign that something is not right.

How often are you feeling this way when eating? More than 2 times a week? At every meal? It’s important that you mention this to your healthcare professional.

Another related symptom of an enlarged spleen is abdominal swelling and discomfort. An enlarged spleen because of PV can also affect your quality of sleep and your appearance. Maybe your belly looks a little bulgy and different than it used to. Maybe you’re trying to hide it by wearing looser-fitting clothes. You may even find that your seat belt is painful to put on. These types of things could have happened so slowly that now you think of them as normal and part of your daily life.

But take a step back. Tell your healthcare professional when and how often you feel abdominal discomfort, such as after you eat or when laying down. Your healthcare team needs to know this and may need to examine your spleen size.

Remember, there are three important words you need to understand to know how your PV is affecting you:

Symptom Severity, and Impact on quality of life

It’s important to know which symptoms you are feeling and then write them down so that you’ll be able to talk about them with your healthcare professional.

An easy way to keep track of your symptoms is by using a tool called the PV Symptom Assessment Form. You can use this tool to note each symptom and include details, such as the severity of the symptom; how the symptom affects your life; and whether the symptom is stopping you from doing normal, everyday things such as work, sleep, or exercise. The PV Symptom Assessment Form will help give your healthcare professional a better idea of which PV symptoms you’re experiencing so they can develop an effective treatment plan for you.

You can download it from voicesofmpn.com or use the QR code on the screen, which will take you directly to the PV Symptom Assessment Form.

You are the key to noticing your PV symptoms so that they can be managed. So be honest with yourself and your healthcare professional. That means talking about all of your symptoms because any one of them can affect your quality of life. If you’re having any of these symptoms, it is important to tell your healthcare professional, as this could mean that your disease is progressing—no matter your blood count or the medication you’re taking. Your healthcare professional may recommend treatments that can help you, so don’t wait.

I invite you to watch the next video where I will go through the PV Symptom Assessment Form with you, like I do with my patients, so you can think about it and discuss your PV symptoms with your healthcare professional. When identified early, they can be better managed.

Thank you for watching this video.