Understanding Myeloproliferative Neoplasms

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1 Understanding Myeloproliferative Neoplasms Learn about the myeloproliferative neoplasms and their symptoms Start Here Raise Your Voice in Support of MPN Awareness! Take action and get the tools and resources to help you act now. For US residents 18 years of age or older. This information is for educational purposes and not intended to be medical advice. Please consult a healthcare professional for medical advice regarding your health. Visit VoicesOfMPN Now

2 What are myeloproliferative neoplasms? Myeloproliferative neoplasms, or MPNs, are a group of diseases in which the body makes too many or too few mature blood cells. What are three types of MPNs?, or MF Polycythemia vera, or PV Essential thrombocythemia, or ET MYELO PROLIFERATIVE NEOPLASMS MPNs are rare diseases. Treatments are not always available for people with rare diseases. What is a rare disease?

3 What are myeloproliferative neoplasms? What are three types of MPNs? Myeloproliferative neoplasms, or MPNs, are a group of diseases in which the body makes too many or too few mature blood cells. is the Greek word for marrow MPNs are rare diseases. Treatments are not always available for people with rare diseases.

4 What are myeloproliferative neoplasms? What are three types of MPNs? Myeloproliferative neoplasms, or MPNs, are a group of diseases in which the body makes too many or too few mature blood cells. is another word for multiplying MPNs are rare diseases. Treatments are not always available for people with rare diseases.

5 What are myeloproliferative neoplasms? What are three types of MPNs? Myeloproliferative neoplasms, or MPNs, are a group of diseases in which the body makes too many or too few mature blood cells. means abnormal new growth MPNs are rare diseases. Treatments are not always available for people with rare diseases.

6 What are myeloproliferative neoplasms? What are three types of MPNs? Myeloproliferative neoplasms, or MPNs, are a group of diseases in which the body makes too many or too few mature blood cells. MPNs are rare diseases. Treatments are not always available for people with rare diseases. Answer: The definition varies from country to country. In the United States, a rare disease is defined as one that affects less than 200,000 people. That s about 1 in every 1,500 people in the country.

7 What are myeloproliferative neoplasms? What are three types of MPNs? Myeloproliferative neoplasms, or MPNs, are a group of diseases in which the body makes too many or too few mature blood cells. In people with MF, the body makes too many or too few blood cells, scar tissue builds up in the bone marrow, the spleen often gets larger, and many different types of symptoms occur MPNs are rare diseases. Treatments are not always available for people with rare diseases. MF is rare. About 16,000 to 18,500 people in the United States have been diagnosed with MF

8 What are myeloproliferative neoplasms? What are three types of MPNs? Myeloproliferative neoplasms, or MPNs, are a group of diseases in which the body makes too many or too few mature blood cells. MPNs are rare diseases. Treatments are not always available for people with rare diseases. In PV, the body produces too many red blood cells, which can cause the blood to thicken. Thicker blood doesn t flow normally through the arteries and veins. This increased blood thickness and decreased blood flow, as well as defects in blood platelets, increase the risk of blood clots. Blood clots can cause a stroke, heart attack, or blockage of an artery in the lungs or in a vein deep within a muscle in the arms or legs PV is rare. About 100,000 people in the United States are living with PV

9 What are myeloproliferative neoplasms? What are three types of MPNs? Myeloproliferative neoplasms, or MPNs, are a group of diseases in which the body makes too many or too few mature blood cells. MPNs are rare diseases. Treatments are not always available for people with rare diseases. In ET, the body makes too many platelets, the part of the blood that makes it clot when the skin is cut. Too many platelets in the blood can lead to many different types of symptoms and serious health problems, such as heart attack or stroke ET is rare. About 71,000 to 88,000 people in the United States live with ET

10 MPN SYMPTOMS Although MF, PV, and ET are different diseases, they share many of the same symptoms, such as fatigue. MPN symptoms generally get worse over time, but how they affect each patient may vary day by day. How do symptoms affect people living with MPNs? MPN symptoms can affect overall quality of life and make it harder for patients to: Work Do physical activity Participate in social functions Take care of themselves HOW MANY PATIENTS WITH MPNs EXPERIENCE SYMPTOMS? In a study of 1,425 patients with MF, PV, or ET, the percentage of patients who reported these 10 symptoms were: Fatigue: 89% Constantly feeling tired, exhausted, with no energy Night sweats: 53% Excessive sweating during sleep Early satiety: 64% Feeling full quickly when eating Itching: 53% Tingling or irritation that makes you want to scratch Problems with concentration: 63% Trouble focusing attention; being easily distracted Bone pain: 49% Pain spread out over a bone, not joint pain or arthritis Inactivity: 62% Not doing things that require physical movement or energy Weight loss: 31% Losing weight without trying Abdominal discomfort: 54% Feeling pain or uneasiness in the abdomen Fever: 18% Temperature of 100 F (37.8 C) or above caused by inflammation These are not all the symptoms of MPNs. See for additional information about MPN symptoms.

11 MPN SYMPTOMS Although MF, PV, and ET are different diseases, they share many of the same symptoms, such as fatigue. MPN symptoms generally get worse over time, but how they affect each patient may vary day by day. How do symptoms affect people living with MPNs? MPN symptoms can affect overall quality of life and make it harder for patients to: Work Do physical activity Participate in social functions Take care of themselves HOW MANY PATIENTS WITH MPNs EXPERIENCE SYMPTOMS? In a study of 1,425 patients with MF, PV, or ET, the percentage of patients who reported these 10 symptoms were: Fatigue: 89% Constantly feeling tired, exhausted, with no energy Night sweats: 53% Excessive sweating during sleep Early satiety: 64% Feeling full quickly when eating Itching: 53% Tingling or irritation that makes you want to scratch Problems with concentration: 63% Trouble focusing attention; being easily distracted Bone pain: 49% Pain spread out over a bone, not joint pain or arthritis Inactivity: 62% Not doing things that require physical movement or energy Weight loss: 31% Losing weight without trying Abdominal discomfort: 54% Feeling pain or uneasiness in the abdomen Fever: 18% Temperature of 100 F (37.8 C) or above caused by inflammation These are not all the symptoms of MPNs. See for additional information about MPN symptoms.

12 MPN SYMPTOMS Although MF, PV, and ET are different diseases, they share many of the same symptoms, such as fatigue. MPN symptoms generally get worse over time, but how they affect each patient may vary day by day. How do symptoms affect people living with MPNs? MPN symptoms can affect overall quality of life and make it harder for patients to: Work Do physical activity Participate in social functions Take care of themselves HOW MANY PATIENTS WITH MPNs EXPERIENCE SYMPTOMS? In a study of 1,425 patients with MF, PV, or ET, the percentage of patients who reported these 10 symptoms were: Fatigue: 89% Constantly feeling tired, exhausted, with no energy Night sweats: 53% Excessive sweating during sleep Early satiety: 64% Feeling full quickly when eating Itching: 53% Tingling or irritation that makes you want to scratch Problems with concentration: 63% Trouble focusing attention; being easily distracted Bone pain: 49% Pain spread out over a bone, not joint pain or arthritis Inactivity: 62% Not doing things that require physical movement or energy Weight loss: 31% Losing weight without trying Abdominal discomfort: 54% Feeling pain or uneasiness in the abdomen Fever: 18% Temperature of 100 F (37.8 C) or above caused by inflammation These are not all the symptoms of MPNs. See for additional information about MPN symptoms.

13 MPN SYMPTOMS Although MF, PV, and ET are different diseases, they share many of the same symptoms, such as fatigue. MPN symptoms generally get worse over time, but how they affect each patient may vary day by day. How do symptoms affect people living with MPNs? MPN symptoms can affect overall quality of life and make it harder for patients to: Work Do physical activity Participate in social functions Take care of themselves HOW MANY PATIENTS WITH MPNs EXPERIENCE SYMPTOMS? In a study of 1,425 patients with MF, PV, or ET, the percentage of patients who reported these 10 symptoms were: Fatigue: 89% Constantly feeling tired, exhausted, with no energy Night sweats: 53% Excessive sweating during sleep Early satiety: 64% Feeling full quickly when eating Itching: 53% Tingling or irritation that makes you want to scratch Problems with concentration: 63% Trouble focusing attention; being easily distracted Bone pain: 49% Pain spread out over a bone, not joint pain or arthritis Inactivity: 62% Not doing things that require physical movement or energy Weight loss: 31% Losing weight without trying Abdominal discomfort: 54% Feeling pain or uneasiness in the abdomen Fever: 18% Temperature of 100 F (37.8 C) or above caused by inflammation These are not all the symptoms of MPNs. See for additional information about MPN symptoms.

14 MPN SYMPTOMS Although MF, PV, and ET are different diseases, they share many of the same symptoms, such as fatigue. MPN symptoms generally get worse over time, but how they affect each patient may vary day by day. How do symptoms affect people living with MPNs? MPN symptoms can affect overall quality of life and make it harder for patients to: Work Do physical activity Participate in social functions Take care of themselves HOW MANY PATIENTS WITH MPNs EXPERIENCE SYMPTOMS? In a study of 1,425 patients with MF, PV, or ET, the percentage of patients who reported these 10 symptoms were: Fatigue: 89% Constantly feeling tired, exhausted, with no energy Night sweats: 53% Excessive sweating during sleep Early satiety: 64% Feeling full quickly when eating Itching: 53% Tingling or irritation that makes you want to scratch Problems with concentration: 63% Trouble focusing attention; being easily distracted Bone pain: 49% Pain spread out over a bone, not joint pain or arthritis Inactivity: 62% Not doing things that require physical movement or energy Weight loss: 31% Losing weight without trying Abdominal discomfort: 54% Feeling pain or uneasiness in the abdomen Fever: 18% Temperature of 100 F (37.8 C) or above caused by inflammation These are not all the symptoms of MPNs. See for additional information about MPN symptoms.

15 MPN SYMPTOMS Although MF, PV, and ET are different diseases, they share many of the same symptoms, such as fatigue. MPN symptoms generally get worse over time, but how they affect each patient may vary day by day. How do symptoms affect people living with MPNs? MPN symptoms can affect overall quality of life and make it harder for patients to: Work Do physical activity Participate in social functions Take care of themselves HOW MANY PATIENTS WITH MPNs EXPERIENCE SYMPTOMS? In a study of 1,425 patients with MF, PV, or ET, the percentage of patients who reported these 10 symptoms were: Fatigue: 89% Constantly feeling tired, exhausted, with no energy Night sweats: 53% Excessive sweating during sleep Early satiety: 64% Feeling full quickly when eating Itching: 53% Tingling or irritation that makes you want to scratch Problems with concentration: 63% Trouble focusing attention; being easily distracted Bone pain: 49% Pain spread out over a bone, not joint pain or arthritis Inactivity: 62% Not doing things that require physical movement or energy Weight loss: 31% Losing weight without trying Abdominal discomfort: 54% Feeling pain or uneasiness in the abdomen Fever: 18% Temperature of 100 F (37.8 C) or above caused by inflammation These are not all the symptoms of MPNs. See for additional information about MPN symptoms.

16 MPN SYMPTOMS Although MF, PV, and ET are different diseases, they share many of the same symptoms, such as fatigue. MPN symptoms generally get worse over time, but how they affect each patient may vary day by day. How do symptoms affect people living with MPNs? MPN symptoms can affect overall quality of life and make it harder for patients to: Work Do physical activity Participate in social functions Take care of themselves HOW MANY PATIENTS WITH MPNs EXPERIENCE SYMPTOMS? In a study of 1,425 patients with MF, PV, or ET, the percentage of patients who reported these 10 symptoms were: Fatigue: 89% Constantly feeling tired, exhausted, with no energy Night sweats: 53% Excessive sweating during sleep Early satiety: 64% Feeling full quickly when eating Itching: 53% Tingling or irritation that makes you want to scratch Problems with concentration: 63% Trouble focusing attention; being easily distracted Bone pain: 49% Pain spread out over a bone, not joint pain or arthritis Inactivity: 62% Not doing things that require physical movement or energy Weight loss: 31% Losing weight without trying Abdominal discomfort: 54% Feeling pain or uneasiness in the abdomen Fever: 18% Temperature of 100 F (37.8 C) or above caused by inflammation These are not all the symptoms of MPNs. See for additional information about MPN symptoms.

17 MPN SYMPTOMS Although MF, PV, and ET are different diseases, they share many of the same symptoms, such as fatigue. MPN symptoms generally get worse over time, but how they affect each patient may vary day by day. How do symptoms affect people living with MPNs? MPN symptoms can affect overall quality of life and make it harder for patients to: Work Do physical activity Participate in social functions Take care of themselves HOW MANY PATIENTS WITH MPNs EXPERIENCE SYMPTOMS? In a study of 1,425 patients with MF, PV, or ET, the percentage of patients who reported these 10 symptoms were: Fatigue: 89% Constantly feeling tired, exhausted, with no energy Night sweats: 53% Excessive sweating during sleep Early satiety: 64% Feeling full quickly when eating Itching: 53% Tingling or irritation that makes you want to scratch Problems with concentration: 63% Trouble focusing attention; being easily distracted Bone pain: 49% Pain spread out over a bone, not joint pain or arthritis Inactivity: 62% Not doing things that require physical movement or energy Weight loss: 31% Losing weight without trying Abdominal discomfort: 54% Feeling pain or uneasiness in the abdomen Fever: 18% Temperature of 100 F (37.8 C) or above caused by inflammation These are not all the symptoms of MPNs. See for additional information about MPN symptoms.

18 MPN SYMPTOMS Although MF, PV, and ET are different diseases, they share many of the same symptoms, such as fatigue. MPN symptoms generally get worse over time, but how they affect each patient may vary day by day. How do symptoms affect people living with MPNs? MPN symptoms can affect overall quality of life and make it harder for patients to: Work Do physical activity Participate in social functions Take care of themselves HOW MANY PATIENTS WITH MPNs EXPERIENCE SYMPTOMS? In a study of 1,425 patients with MF, PV, or ET, the percentage of patients who reported these 10 symptoms were: Fatigue: 89% Constantly feeling tired, exhausted, with no energy Night sweats: 53% Excessive sweating during sleep Early satiety: 64% Feeling full quickly when eating Itching: 53% Tingling or irritation that makes you want to scratch Problems with concentration: 63% Trouble focusing attention; being easily distracted Bone pain: 49% Pain spread out over a bone, not joint pain or arthritis Inactivity: 62% Not doing things that require physical movement or energy Weight loss: 31% Losing weight without trying Abdominal discomfort: 54% Feeling pain or uneasiness in the abdomen Fever: 18% Temperature of 100 F (37.8 C) or above caused by inflammation These are not all the symptoms of MPNs. See for additional information about MPN symptoms.

19 MPN SYMPTOMS Although MF, PV, and ET are different diseases, they share many of the same symptoms, such as fatigue. MPN symptoms generally get worse over time, but how they affect each patient may vary day by day. How do symptoms affect people living with MPNs? MPN symptoms can affect overall quality of life and make it harder for patients to: Work Do physical activity Participate in social functions Take care of themselves HOW MANY PATIENTS WITH MPNs EXPERIENCE SYMPTOMS? In a study of 1,425 patients with MF, PV, or ET, the percentage of patients who reported these 10 symptoms were: Fatigue: 89% Constantly feeling tired, exhausted, with no energy Night sweats: 53% Excessive sweating during sleep Early satiety: 64% Feeling full quickly when eating Itching: 53% Tingling or irritation that makes you want to scratch Problems with concentration: 63% Trouble focusing attention; being easily distracted Bone pain: 49% Pain spread out over a bone, not joint pain or arthritis Inactivity: 62% Not doing things that require physical movement or energy Weight loss: 31% Losing weight without trying Abdominal discomfort: 54% Feeling pain or uneasiness in the abdomen Fever: 18% Temperature of 100 F (37.8 C) or above caused by inflammation These are not all the symptoms of MPNs. See for additional information about MPN symptoms.

20 MPN SYMPTOMS Although MF, PV, and ET are different diseases, they share many of the same symptoms, such as fatigue. MPN symptoms generally get worse over time, but how they affect each patient may vary day by day. How do symptoms affect people living with MPNs? MPN symptoms can affect overall quality of life and make it harder for patients to: Work Do physical activity Participate in social functions Take care of themselves HOW MANY PATIENTS WITH MPNs EXPERIENCE SYMPTOMS? In a study of 1,425 patients with MF, PV, or ET, the percentage of patients who reported these 10 symptoms were: Fatigue: 89% Constantly feeling tired, exhausted, with no energy Night sweats: 53% Excessive sweating during sleep Early satiety: 64% Feeling full quickly when eating Itching: 53% Tingling or irritation that makes you want to scratch Problems with concentration: 63% Trouble focusing attention; being easily distracted Bone pain: 49% Pain spread out over a bone, not joint pain or arthritis Inactivity: 62% Not doing things that require physical movement or energy Weight loss: 31% Losing weight without trying Abdominal discomfort: 54% Feeling pain or uneasiness in the abdomen Fever: 18% Temperature of 100 F (37.8 C) or above caused by inflammation These are not all the symptoms of MPNs. See for additional information about MPN symptoms.

21 MPN SYMPTOMS Although MF, PV, and ET are different diseases, they share many of the same symptoms, such as fatigue. MPN symptoms generally get worse over time, but how they affect each patient may vary day by day. How do symptoms affect people living with MPNs? MPN symptoms can affect overall quality of life and make it harder for patients to: Work Do physical activity Participate in social functions Take care of themselves HOW MANY PATIENTS WITH MPNs EXPERIENCE SYMPTOMS? In a study of 1,425 patients with MF, PV, or ET, the percentage of patients who reported these 10 symptoms were: Fatigue: 89% Constantly feeling tired, exhausted, with no energy Night sweats: 53% Excessive sweating during sleep Early satiety: 64% Feeling full quickly when eating Itching: 53% Tingling or irritation that makes you want to scratch Problems with concentration: 63% Trouble focusing attention; being easily distracted Bone pain: 49% Pain spread out over a bone, not joint pain or arthritis Inactivity: 62% Not doing things that require physical movement or energy Weight loss: 31% Losing weight without trying Abdominal discomfort: 54% Feeling pain or uneasiness in the abdomen Fever: 18% Temperature of 100 F (37.8 C) or above caused by inflammation These are not all the symptoms of MPNs. See for additional information about MPN symptoms.

22 MPN SYMPTOMS Although MF, PV, and ET are different diseases, they share many of the same symptoms, such as fatigue. MPN symptoms generally get worse over time, but how they affect each patient may vary day by day. How do symptoms affect people living with MPNs? MPN symptoms can affect overall quality of life and make it harder for patients to: Work Do physical activity Participate in social functions Take care of themselves HOW MANY PATIENTS WITH MPNs EXPERIENCE SYMPTOMS? In a study of 1,425 patients with MF, PV, or ET, the percentage of patients who reported these 10 symptoms were: Fatigue: 89% Constantly feeling tired, exhausted, with no energy Night sweats: 53% Excessive sweating during sleep Early satiety: 64% Feeling full quickly when eating Itching: 53% Tingling or irritation that makes you want to scratch Problems with concentration: 63% Trouble focusing attention; being easily distracted Bone pain: 49% Pain spread out over a bone, not joint pain or arthritis Inactivity: 62% Not doing things that require physical movement or energy Weight loss: 31% Losing weight without trying Abdominal discomfort: 54% Feeling pain or uneasiness in the abdomen Fever: 18% Temperature of 100 F (37.8 C) or above caused by inflammation These are not all the symptoms of MPNs. See for additional information about MPN symptoms.

23 MPN SYMPTOMS Although MF, PV, and ET are different diseases, they share many of the same symptoms, such as fatigue. MPN symptoms generally get worse over time, but how they affect each patient may vary day by day. How do symptoms affect people living with MPNs? MPN symptoms can affect overall quality of life and make it harder for patients to: Work Do physical activity Participate in social functions Take care of themselves HOW MANY PATIENTS WITH MPNs EXPERIENCE SYMPTOMS? In a study of 1,425 patients with MF, PV, or ET, the percentage of patients who reported these 10 symptoms were: Fatigue: 89% Constantly feeling tired, exhausted, with no energy Night sweats: 53% Excessive sweating during sleep Early satiety: 64% Feeling full quickly when eating Itching: 53% Tingling or irritation that makes you want to scratch Problems with concentration: 63% Trouble focusing attention; being easily distracted Bone pain: 49% Pain spread out over a bone, not joint pain or arthritis Inactivity: 62% Not doing things that require physical movement or energy Weight loss: 31% Losing weight without trying Abdominal discomfort: 54% Feeling pain or uneasiness in the abdomen Fever: 18% Temperature of 100 F (37.8 C) or above caused by inflammation These are not all the symptoms of MPNs. See for additional information about MPN symptoms.

24 Why is it important to track MPN symptoms? Select each number to view the answers. Tracking symptoms helps the patient and doctor: 1 Understand how MPN symptoms affect the patient 2 Follow how the disease changes over time 3 Discuss options for managing the disease and its symptoms

25 Why is it important to track MPN symptoms? Select each number to view the answers. Tracking symptoms helps the patient and doctor: 1 Understand how MPN symptoms affect the patient 2 Follow how the disease changes over time 3 Discuss options for managing the disease and its symptoms

26 Why is it important to track MPN symptoms? Select each number to view the answers. Tracking symptoms helps the patient and doctor: 1 Understand how MPN symptoms affect the patient 2 Follow how the disease changes over time 3 Discuss options for managing the disease and its symptoms

27 Why is it important to track MPN symptoms? Select each number to view the answers. Tracking symptoms helps the patient and doctor: 1 Understand how MPN symptoms affect the patient 2 Follow how the disease changes over time 3 Discuss options for managing the disease and its symptoms

28 <- - > Why patients might not report MPN symptoms to their doctors Select each number to view the answers. 1 Patients may not know what types of symptoms are caused by MPNs. 2 Patients may think their fatigue, night sweats or aches and pains are associated with aging or medical conditions. 3 Patients may think nothing can be done or nothing needs to be done for their symptoms. Patients are encouraged to report any symptoms they have to their doctor.

29 <- - > 1 Why patients might not report MPN symptoms to their doctors Select each number to view the answers. 1 Patients may not know what types of symptoms are caused by MPNs. 2 Patients may think their fatigue, night sweats or aches and pains are associated with aging or medical conditions. 3 Patients may think nothing can be done or nothing needs to be done for their symptoms. Patients are encouraged to report any symptoms they have to their doctor.

30 Why patients might not report MPN symptoms to their doctors Select each number to view the answers. 1 Patients may not know what types of symptoms are caused by MPNs. 2 Patients may think their fatigue, night sweats or aches and pains are associated with aging or medical conditions. 3 Patients may think nothing can be done or nothing needs to be done for their symptoms. Patients are encouraged to report any symptoms they have to their doctor.

31 <- - > Why patients might not report MPN symptoms to their doctors Select each number to view the answers. 1 Patients may not know what types of symptoms are caused by MPNs. 2 Patients may think their fatigue, night sweats or aches and pains are associated with aging or medical conditions. 3 Patients may think nothing can be done or nothing needs to be done for their symptoms. Patients are encouraged to report any symptoms they have to their doctor.

32 What is the MPN10? The MPN10 is a tool to help keep track of symptoms over time. It tracks the severity of 10 important MPN symptoms. It is a 10-question survey It helps patients show their doctors how their symptoms affect them, which may affect how the MPN is treated. Where can I get the MPN10? Name: Date: Fill out the form below to track the burden of your symptoms. Symptom: 1 to 10, 0 if absent and 10 being worst imaginable Please rate your fatigue (weariness, tiredness) by circling the one number that best describes your WORST level of fatigue during the past 24 hours Fatigue (ABSENT) (WORST IMAGINABLE) Circle the one number that describes how much difficulty you have had with each of the following symptoms during the past week Filling up quickly when you eat (early satiety) (ABSENT) (WORST IMAGINABLE) Abdominal discomfort (ABSENT) (WORST IMAGINABLE) Inactivity (ABSENT) (WORST IMAGINABLE) Problems with concentration - compared to before my diagnosis (ABSENT) (WORST IMAGINABLE) Night sweats (ABSENT) (WORST IMAGINABLE) Itching (pruritus) (ABSENT) (WORST IMAGINABLE) Bone pain (diffuse, not joint pain or arthritis) (ABSENT) (WORST IMAGINABLE) Fever (> 37.8 C or 100 F) (ABSENT) (DAILY) Unintentional weight loss last 6 months (ABSENT) To help you get a clear overall picture of how you are feeling, you can add up all your scores to calculate your Total Symptom Score. You can also fill in this form and find more expert information about myeloproliferative neoplasms online at Total: (WORST IMAGINABLE) Adapted from Emanuel R et al. J Clin Oncol, in press Are there other ways to track symptoms? Yes. No special forms are necessary. Tracking symptoms can be as simple as keeping a daily diary or making notes on a calendar. The key is to keep a record over time. Patients should use whatever method works best for them.

33 What symptoms does it track? Patients can print out this page so that they can keep a record of how their symptoms change over time. They can also take the page to their doctors to discuss their symptoms. The MPN10 tracks the severity of 10 important MPN symptoms. Name: MPN10 Date: 1 to 10 (0 if absent), ranking 1 is most favorable and 10 least favorable Circle a number to rate your fatigue (weariness, tiredness) that best describes your WORST level of fatigue during the past 24 hours Fatigue Circle a number that describes, during the past week, how much difficulty you have had with each of the following symptoms Filling up quickly when you eat (early satiety) Abdominal discomfort Inactivity Problems with concentration (compared to before MPN) Night sweats Itching (pruritus) Bone pain (diffuse, not joint pain or arthritis) Unintentional weight loss in the last 8 months Fever (>100 F) Total Symptom Score: (Absent) (Worst imaginable)

34 More about MPNs Polycythemia vera (PV) Essential thrombocythemia (ET) What are common symptoms of MPNs? Who gets MPNs? PV ET PV ET

35 More about MPNs Polycythemia vera (PV) Essential thrombocythemia (ET) PV ET is a disease of the bone marrow. It occurs when the marrow the soft, fatty tissue inside the bones that makes blood cells is replaced by scar tissue. Scarring of the bone marrow means the marrow is not able to make enough blood cells. The spleen, an organ under the ribs and above the stomach on the left side of the body, tries to compensate by producing blood cells, but this can cause it to swell. A swollen spleen, which is known as splenomegaly (splee-nuh-meg-uh-lee), can cause severe symptoms. MF can also lead to anemia and bleeding problems, as well as a higher risk of infections. No one knows exactly what causes myelofibrosis. Many people with MF have changes in certain genes also called mutations that affect how many of the different blood cells the body makes. What are common symptoms of MPNs? Who gets MPNs? PV ET

36 More about MPNs Polycythemia vera (PV) Essential thrombocythemia (ET) PV ET PV is a rare disease of the bone marrow in which the body makes too many red blood cells. People with PV may also have too many white blood cells and platelets (blood clotting cells) in their blood, but having too many red blood cells causes most of the problems with PV. Too many red blood cells can cause the blood to thicken. Thicker blood doesn t flow normally through the arteries and veins. This increased blood thickness and decreased blood flow, as well as defects in blood platelets, increase the risk of blood clots. Blood clots can cause a stroke, heart attack, or blockage of an artery in the lungs or in a vein deep within a muscle in the arms or legs. While the exact cause of PV is not known, almost all patients have a change in a certain gene also called a mutation that affects how many of the different blood cells the body makes. What are common symptoms of MPNs? Who gets MPNs? PV ET

37 More about MPNs Polycythemia vera (PV) Essential thrombocythemia (ET) PV ET Essential thrombocythemia is a rare blood disease that occurs when the bone marrow makes more platelets than the body needs. Platelets are needed to help the blood clot, but in people with ET, the platelets don t work properly. This results in serious complications such as blood clots that block a vein or an artery and stop the blood from flowing. People with ET may also have excessive bleeding (due to the platelets not functioning properly). Although platelets are mostly affected, red blood cells and white blood cells may also be involved. The exact cause of ET is not known, but about half of all people with ET have a change in a certain gene also called a mutation that affects how many of the different blood cells the body makes. What are common symptoms of MPNs? Who gets MPNs? PV ET

38 More about MPNs Polycythemia vera (PV) Essential thrombocythemia (ET) What are common symptoms of MPNs? Who gets MPNs? PV ET MF occurs about equally in men and women People with MF are usually diagnosed between 60 and 67 years of age PV ET

39 More about MPNs Polycythemia vera (PV) Essential thrombocythemia (ET) What are common symptoms of MPNs? Who gets MPNs? PV ET PV occurs in slightly more men than women PV is most common in people over the age of 60 PV ET

40 More about MPNs Polycythemia vera (PV) Essential thrombocythemia (ET) What are common symptoms of MPNs? Who gets MPNs? PV ET ET occurs in more women than men ET is most common in people over the age of 50 PV ET

41 More about MPNs Polycythemia vera (PV) Essential thrombocythemia (ET) What are common symptoms of MPNs? Who gets MPNs? PV ET PV Fatigue: 96% ET Night sweats: 62% Filling up quickly when you eat (early satiety): 77% Bone pain: 52% Problems with concentration: 69% Itching: 50% Inactivity: 74% Weight loss: 42% Abdominal discomfort: 66% Fever: 22% Additional symptoms Pain under the left ribs Anemia (having too few red blood cells or low hemoglobin) Weakness Everyone is unique. Not everyone with MF has these symptoms, and these are not all the possible symptoms of MF. Patients should talk to their doctors about any symptoms they may have.

42 More about MPNs Polycythemia vera (PV) Essential thrombocythemia (ET) What are common symptoms of MPNs? Who gets MPNs? PV ET PV Fatigue: 88% ET Night sweats: 52% Filling up quickly when you eat (early satiety): 64% Bone pain: 50% Problems with concentration: 65% Itching: 62% Inactivity: 61% Weight loss: 31% Abdominal discomfort: 51% Fever: 18% Additional symptoms Headaches Dizziness Weakness Shortness of breath or problems breathing while lying down Double or blurred vision and blind spots Painful swelling in the big toe (a condition called gout) Everyone is unique. Not everyone with PV has these symptoms, and these are not all the possible symptoms of PV. Patients should talk to their doctors about any symptoms they may have.

43 More about MPNs Polycythemia vera (PV) Essential thrombocythemia (ET) What are common symptoms of MPNs? Who gets MPNs? PV ET PV Fatigue: 87% ET Night sweats: 50% Filling up quickly when you eat (early satiety): 59% Bone pain: 46% Problems with concentration: 59% Itching: 46% Inactivity: 56% Weight loss: 24% Abdominal discomfort: 50% Fever: 17% Additional symptoms Headaches Dizziness or lightheadedness Chest pain Weakness Fainting Shortness of breath Vision changes, such as flashes of light or shimmering spots, that eventually go away Numbness or tingling in the hands and feet Redness, throbbing, and burning pain in the hands and feet Everyone is unique. Not everyone with ET has these symptoms, and these are not all the possible symptoms of ET. Patients should talk to their doctors about any symptoms they may have.

44 Support and Featured resource Voices of MPN is intended for patients in the United States. It provides information and resources to help people raise their voices and make a difference in the care and support of people living with MPNs. Raise Your Voice in Support of MPN Awareness! Take action and get the tools and resources to help you act now. Additional resources These links will direct you to third party web sites. Incyte is not responsible for the content of third party web sites. CancerCare Cancer Support Community Leukemia & Lymphoma Society MPN Advocacy & Education International MPN Education Foundation MPNforum Magazine MPN Research Foundation National Organization of Rare Diseases (NORD) Oncology Nursing Society Patients Like Me Patient Power

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