PV REPORTER

Welcome to PV Reporter. PV Reporter was created to provide “easy access” to pertinent information on Polycythemia Vera (PV), Essential Thrombocythemia (ET) and Myelofibrosis (MF). These disorders are Myeloproliferative Neoplasms (MPNs), a closely related group of blood cancers where the bone marrow cells that produce the body’s blood cells function and develop abnormally. SUFFERING FROM SIGNS AND SYMPTOMS OF POLYCYTHEMIA VERA Polycythemia Vera has a slow, but insidious progression. As a 70-year-old man, I concluded that my increasing fatigue was due to long working hours and not sleeping enough. I concluded that increasing levels of fatigue were also due to getting older and not retiring when I was 65 years old. High blood pressure became a

problem.

MPN SPECIALISTS

JASON RAPPAPORT'S POLYCYTHEMIA VERA STORY Jason Rappaport is the unusual PV patient who moves quickly in positive traction mode, like a wide receiver sprinting down the field for the game winning touchdown. In fact, he collaborated on the start-up of the fast growing MPN Interferon Forum Facebook group with Christine Santana-Stickelmeyer. The group attracted new members at a

rapid pace

BLOOD CENTERS THAT POLYCYTHEMIA VERA PATIENTS CAN USE As a Polycythemia Vera patient, you can not give blood to the Red Cross. You can go to blood centers where they will accept blood from a PV patient for what is referred to as “therapeutic phlebotomy.”. You will need to check with the respective blood center in your area. Many of the donor centers offer the service as a free community

service.

STRATEGIES TO BEAT ITCHING IN POLYCYTHEMIA VERA One of the best ways to beat itching in MPN may very well be OTC combo of Zyrtec and Zantac (June 2016). 👉 Zantac (ranitidine) however is no longer available but another H2 blocker can be substituted: Pepcid (famotidine) is approximately 8 times more potent than Zantac. (August 2020 update) Here is medical commentary on “Mast Cells and Histamine in MPN Related Itching Explained” – by BONE & JOINT PAIN IN MPN PATIENTS EXPLAINED In MPN, the bone marrow expands outward to the long bones and can be seen even out in the fingers and toes when bone marrow scanning is done. The proliferation within the bone marrow cavity may cause pressure inside the bone that, in turn, causes inflammation of the covering of the bone (periostium). The resulting periostitis may be

painful.

AUTOIMMUNE DISORDERS THAT MAY COEXIST WITH While there are a number of autoimmune conditions, some that are known to coexist with MPNs are: Psoriasis: this is a chronic inflammatory disorder of the skin where T-lymphocytes, or specialized white blood cells cause the production of skin cells to speed up to the point where the patient is covered with itchy, scaling patches. MAST CELLS AND HISTAMINE IN MPN RELATED ITCHING EXPLAINED Itching has been reported in up to 85% of patients with MPN. While the biological basis of itching is not fully understood, the itch sensation is recognized in the brain by signals sent from specific nerve fibers (neurons) within the skin that respond to various types of stimuli. Figure 1. Schematic of a mast cell and the degranulation

process.

ACTOR JEFF BRIDGES REVEALS LYMPHOMA BLOOD CANCER Bridges didn’t say exactly what type of blood cancer he was dealing with, but all lymphomas affect the lymph system, which is a part of the immune system. The lymph system includes the lymph nodes as well as bone marrow, the spleen, and the thymus gland. Lymphoma can also spread from those areas to other parts of the body.

PV REPORTER

Welcome to PV Reporter. PV Reporter was created to provide “easy access” to pertinent information on Polycythemia Vera (PV), Essential Thrombocythemia (ET) and Myelofibrosis (MF). These disorders are Myeloproliferative Neoplasms (MPNs), a closely related group of blood cancers where the bone marrow cells that produce the body’s blood cells function and develop abnormally. SUFFERING FROM SIGNS AND SYMPTOMS OF POLYCYTHEMIA VERA Polycythemia Vera has a slow, but insidious progression. As a 70-year-old man, I concluded that my increasing fatigue was due to long working hours and not sleeping enough. I concluded that increasing levels of fatigue were also due to getting older and not retiring when I was 65 years old. High blood pressure became a

problem.

MPN SPECIALISTS

JASON RAPPAPORT'S POLYCYTHEMIA VERA STORY Jason Rappaport is the unusual PV patient who moves quickly in positive traction mode, like a wide receiver sprinting down the field for the game winning touchdown. In fact, he collaborated on the start-up of the fast growing MPN Interferon Forum Facebook group with Christine Santana-Stickelmeyer. The group attracted new members at a

rapid pace

BLOOD CENTERS THAT POLYCYTHEMIA VERA PATIENTS CAN USE As a Polycythemia Vera patient, you can not give blood to the Red Cross. You can go to blood centers where they will accept blood from a PV patient for what is referred to as “therapeutic phlebotomy.”. You will need to check with the respective blood center in your area. Many of the donor centers offer the service as a free community

service.

STRATEGIES TO BEAT ITCHING IN POLYCYTHEMIA VERA One of the best ways to beat itching in MPN may very well be OTC combo of Zyrtec and Zantac (June 2016). 👉 Zantac (ranitidine) however is no longer available but another H2 blocker can be substituted: Pepcid (famotidine) is approximately 8 times more potent than Zantac. (August 2020 update) Here is medical commentary on “Mast Cells and Histamine in MPN Related Itching Explained” – by BONE & JOINT PAIN IN MPN PATIENTS EXPLAINED In MPN, the bone marrow expands outward to the long bones and can be seen even out in the fingers and toes when bone marrow scanning is done. The proliferation within the bone marrow cavity may cause pressure inside the bone that, in turn, causes inflammation of the covering of the bone (periostium). The resulting periostitis may be

painful.

AUTOIMMUNE DISORDERS THAT MAY COEXIST WITH While there are a number of autoimmune conditions, some that are known to coexist with MPNs are: Psoriasis: this is a chronic inflammatory disorder of the skin where T-lymphocytes, or specialized white blood cells cause the production of skin cells to speed up to the point where the patient is covered with itchy, scaling patches. MAST CELLS AND HISTAMINE IN MPN RELATED ITCHING EXPLAINED Itching has been reported in up to 85% of patients with MPN. While the biological basis of itching is not fully understood, the itch sensation is recognized in the brain by signals sent from specific nerve fibers (neurons) within the skin that respond to various types of stimuli. Figure 1. Schematic of a mast cell and the degranulation

process.

ACTOR JEFF BRIDGES REVEALS LYMPHOMA BLOOD CANCER Bridges didn’t say exactly what type of blood cancer he was dealing with, but all lymphomas affect the lymph system, which is a part of the immune system. The lymph system includes the lymph nodes as well as bone marrow, the spleen, and the thymus gland. Lymphoma can also spread from those areas to other parts of the body. POLYCYTHEMIA VERA PRE-DIAGNOSIS PATIENT REPORT Founder of PV Reporter, a resource for Myeloproliferative Neoplasm (MPN) patients and caregivers. After being diagnosed with Polycythemia Vera (PV) in 2009, I utilized social media to connect with "informed patients" and develop a better understanding of emerging treatment options. My philosophy on patient care is straight forward -

"educating

MPN NEWS FEED

The MPN News feed provides frequent updates on the latest happenings in the MPN World. Fresh content, with brief summary is automatically updated frequently from reliable sources. Just click on the red hyperlink to pull up the complete news item. Make PV Reporter your “starting point” for all MPN related news. Parachuting from a

Crippled

BLOOD CENTERS THAT POLYCYTHEMIA VERA PATIENTS CAN USE As a Polycythemia Vera patient, you can not give blood to the Red Cross. You can go to blood centers where they will accept blood from a PV patient for what is referred to as “therapeutic phlebotomy.”. You will need to check with the respective blood center in your area. Many of the donor centers offer the service as a free community

service.

ROPEGINTERFERON EFFECTIVE TREATMENT FOR POLYCYTHEMIA VERA Founder of PV Reporter, a resource for Myeloproliferative Neoplasm (MPN) patients and caregivers. After being diagnosed with Polycythemia Vera (PV) in 2009, I utilized social media to connect with "informed patients" and develop a better understanding of emerging treatment

options.

ZYRTEC AND ZANTAC HELPING PV PATIENTS GET RELIEF FROM ITCHING! Part 1 in a New Series: “Addressing MPN Symptoms” by David Wallace. Background. A high percentage of polycythemia vera – MPN patients suffer from Aquagenic Pruritus, a fancy clinical term for itching. Few patients presenting with itching are tested for PV, but it is a classic symptom that tags along with a host of other strange bed fellows including fatigue, headache, dizziness A BAD DAY LIVING WITH POLYCYTHEMIA VERA Founder of PV Reporter, a resource for Myeloproliferative Neoplasm (MPN) patients and caregivers. After being diagnosed with Polycythemia Vera (PV) in 2009, I utilized social media to connect with "informed patients" and develop a better understanding of emerging treatment

options.

MPN PATIENTS HAVE HIGHER RISK OF INFLAMMATORY BOWEL Founder of PV Reporter, a resource for Myeloproliferative Neoplasm (MPN) patients and caregivers. After being diagnosed with Polycythemia Vera (PV) in 2009, I utilized social media to connect with "informed patients" and develop a better understanding of emerging treatment

options.

ACTOR JEFF BRIDGES REVEALS LYMPHOMA BLOOD CANCER Bridges didn’t say exactly what type of blood cancer he was dealing with, but all lymphomas affect the lymph system, which is a part of the immune system. The lymph system includes the lymph nodes as well as bone marrow, the spleen, and the thymus gland. Lymphoma can also spread from those areas to other parts of the body. NEW MPN DRUG TREATMENTS IN DEVELOPMENT Find out the latest on combination add-on strategies to JAK inhibitors and other new agents. Two combination therapies for Myelofibrosis look promising as they move into phase 3 clinical trials. They include adding CPI-0610 (a bromodomain, BET, inhibitor) and navitoclax (a BC-XL inhibitor) to ruxolitinib. NAC N-ACETYLCYSTEINE SUPPLEMENT MAY BENEFIT MPN PATIENTS N-acetylcysteine (NAC) supplement has shown to have Antioxidant and Anti-inflammatory Properties. Polycythemia vera, essential thrombocythemia and myelofibrosis make up a class of blood cancers called myeloproliferative neoplasms or MPNs. MPNs are characterized by the over-production of red or white blood cells or platelets in the

bone marrow.

PV REPORTER

Welcome to PV Reporter. PV Reporter was created to provide “easy access” to pertinent information on Polycythemia Vera (PV), Essential Thrombocythemia (ET) and Myelofibrosis (MF). These disorders are Myeloproliferative Neoplasms (MPNs), a closely related group of blood cancers where the bone marrow cells that produce the body’s blood cells function and develop abnormally. SUFFERING FROM SIGNS AND SYMPTOMS OF POLYCYTHEMIA VERA Polycythemia Vera has a slow, but insidious progression. As a 70-year-old man, I concluded that my increasing fatigue was due to long working hours and not sleeping enough. I concluded that increasing levels of fatigue were also due to getting older and not retiring when I was 65 years old. High blood pressure became a

problem.

BLOOD CENTERS THAT POLYCYTHEMIA VERA PATIENTS CAN USE As a Polycythemia Vera patient, you can not give blood to the Red Cross. You can go to blood centers where they will accept blood from a PV patient for what is referred to as “therapeutic phlebotomy.”. You will need to check with the respective blood center in your area. Many of the donor centers offer the service as a free community

service.

POLYCYTHEMIA VERA PV BRAIN FOG Polycythemia Vera Brain Fog. Nutrition and Diet May Reduce Chronic Inflammation while Improving Symptom Burden in MPN patients. Chronic Pain in Over 50 percent of MPN Cancer patients. MPNs and Insomnia – Tips for Better Sleep. About David Wallace. Founder of PV Reporter, a resource for Myeloproliferative Neoplasm (MPN) patients and

caregivers.

ACTOR JEFF BRIDGES REVEALS LYMPHOMA BLOOD CANCER Bridges didn’t say exactly what type of blood cancer he was dealing with, but all lymphomas affect the lymph system, which is a part of the immune system. The lymph system includes the lymph nodes as well as bone marrow, the spleen, and the thymus gland. Lymphoma can also spread from those areas to other parts of the body. STRATEGIES TO BEAT ITCHING IN POLYCYTHEMIA VERA One of the best ways to beat itching in MPN may very well be OTC combo of Zyrtec and Zantac (June 2016). 👉 Zantac (ranitidine) however is no longer available but another H2 blocker can be substituted: Pepcid (famotidine) is approximately 8 times more potent than Zantac. (August 2020 update) Here is medical commentary on “Mast Cells and Histamine in MPN Related Itching Explained” – by

MPN SPECIALISTS

ROPEGINTERFERON EFFECTIVE TREATMENT FOR POLYCYTHEMIA VERA In the PROUD-PV / CONTINUATION PV study, long-term treatment with ropeginterferon alpha-2b (BESREMi) was compared with the standard cytoreductive therapy regarding thrombotic and other adverse events as well as hematological and molecular parameters over a four-year period. The key treatment goals for PV are to prevent thrombotic

events and

MAST CELLS AND HISTAMINE IN MPN RELATED ITCHING EXPLAINED Itching has been reported in up to 85% of patients with MPN. While the biological basis of itching is not fully understood, the itch sensation is recognized in the brain by signals sent from specific nerve fibers (neurons) within the skin that respond to various types of stimuli. Figure 1. Schematic of a mast cell and the degranulation

process.

BONE & JOINT PAIN IN MPN PATIENTS EXPLAINED In MPN, the bone marrow expands outward to the long bones and can be seen even out in the fingers and toes when bone marrow scanning is done. The proliferation within the bone marrow cavity may cause pressure inside the bone that, in turn, causes inflammation of the covering of the bone (periostium). The resulting periostitis may be

painful.

PV REPORTER

Welcome to PV Reporter. PV Reporter was created to provide “easy access” to pertinent information on Polycythemia Vera (PV), Essential Thrombocythemia (ET) and Myelofibrosis (MF). These disorders are Myeloproliferative Neoplasms (MPNs), a closely related group of blood cancers where the bone marrow cells that produce the body’s blood cells function and develop abnormally. SUFFERING FROM SIGNS AND SYMPTOMS OF POLYCYTHEMIA VERA Polycythemia Vera has a slow, but insidious progression. As a 70-year-old man, I concluded that my increasing fatigue was due to long working hours and not sleeping enough. I concluded that increasing levels of fatigue were also due to getting older and not retiring when I was 65 years old. High blood pressure became a

problem.

BLOOD CENTERS THAT POLYCYTHEMIA VERA PATIENTS CAN USE As a Polycythemia Vera patient, you can not give blood to the Red Cross. You can go to blood centers where they will accept blood from a PV patient for what is referred to as “therapeutic phlebotomy.”. You will need to check with the respective blood center in your area. Many of the donor centers offer the service as a free community

service.

POLYCYTHEMIA VERA PV BRAIN FOG Polycythemia Vera Brain Fog. Nutrition and Diet May Reduce Chronic Inflammation while Improving Symptom Burden in MPN patients. Chronic Pain in Over 50 percent of MPN Cancer patients. MPNs and Insomnia – Tips for Better Sleep. About David Wallace. Founder of PV Reporter, a resource for Myeloproliferative Neoplasm (MPN) patients and

caregivers.

ACTOR JEFF BRIDGES REVEALS LYMPHOMA BLOOD CANCER Bridges didn’t say exactly what type of blood cancer he was dealing with, but all lymphomas affect the lymph system, which is a part of the immune system. The lymph system includes the lymph nodes as well as bone marrow, the spleen, and the thymus gland. Lymphoma can also spread from those areas to other parts of the body. STRATEGIES TO BEAT ITCHING IN POLYCYTHEMIA VERA One of the best ways to beat itching in MPN may very well be OTC combo of Zyrtec and Zantac (June 2016). 👉 Zantac (ranitidine) however is no longer available but another H2 blocker can be substituted: Pepcid (famotidine) is approximately 8 times more potent than Zantac. (August 2020 update) Here is medical commentary on “Mast Cells and Histamine in MPN Related Itching Explained” – by

MPN SPECIALISTS

ROPEGINTERFERON EFFECTIVE TREATMENT FOR POLYCYTHEMIA VERA In the PROUD-PV / CONTINUATION PV study, long-term treatment with ropeginterferon alpha-2b (BESREMi) was compared with the standard cytoreductive therapy regarding thrombotic and other adverse events as well as hematological and molecular parameters over a four-year period. The key treatment goals for PV are to prevent thrombotic

events and

MAST CELLS AND HISTAMINE IN MPN RELATED ITCHING EXPLAINED Itching has been reported in up to 85% of patients with MPN. While the biological basis of itching is not fully understood, the itch sensation is recognized in the brain by signals sent from specific nerve fibers (neurons) within the skin that respond to various types of stimuli. Figure 1. Schematic of a mast cell and the degranulation

process.

BONE & JOINT PAIN IN MPN PATIENTS EXPLAINED In MPN, the bone marrow expands outward to the long bones and can be seen even out in the fingers and toes when bone marrow scanning is done. The proliferation within the bone marrow cavity may cause pressure inside the bone that, in turn, causes inflammation of the covering of the bone (periostium). The resulting periostitis may be

painful.

PV REPORTER

Welcome to PV Reporter. PV Reporter was created to provide “easy access” to pertinent information on Polycythemia Vera (PV), Essential Thrombocythemia (ET) and Myelofibrosis (MF). These disorders are Myeloproliferative Neoplasms (MPNs), a closely related group of blood cancers where the bone marrow cells that produce the body’s blood cells function and develop abnormally. BLOOD CENTERS THAT POLYCYTHEMIA VERA PATIENTS CAN USE As a Polycythemia Vera patient, you can not give blood to the Red Cross. You can go to blood centers where they will accept blood from a PV patient for what is referred to as “therapeutic phlebotomy.”. You will need to check with the respective blood center in your area. Many of the donor centers offer the service as a free community

service.

BONE & JOINT PAIN IN MPN PATIENTS EXPLAINED Pearls of wisdom (1995) by the late Dr. Gilbert. Dear Members: For your information re bone and joint pains in MPN. Several of you have mentioned that you suffer from bone and/or joint pains – sometimes attributed to arthritis.I have seen a number of patients who have this complaint and it has been related to very active proliferative disease BREAKING NEWS FOR MYELOFIBROSIS PATIENTS August 2019 Update – Fedratinib receives FDA approval for Myelofibrosis patients. Founder of PV Reporter, a resource for Myeloproliferative Neoplasm (MPN) patients and caregivers. After being diagnosed with Polycythemia Vera (PV) in 2009, I utilized social media to connect with "informed patients" and develop a better understanding

of

MPN PATIENTS HAVE HIGHER RISK OF INFLAMMATORY BOWEL Founder of PV Reporter, a resource for Myeloproliferative Neoplasm (MPN) patients and caregivers. After being diagnosed with Polycythemia Vera (PV) in 2009, I utilized social media to connect with "informed patients" and develop a better understanding of emerging treatment

options.

ZYRTEC AND ZANTAC HELPING PV PATIENTS GET RELIEF FROM ITCHING! Part 1 in a New Series: “Addressing MPN Symptoms” by David Wallace. Background. A high percentage of polycythemia vera – MPN patients suffer from Aquagenic Pruritus, a fancy clinical term for itching. Few patients presenting with itching are tested for PV, but it is a classic symptom that tags along with a host of other strange bed fellows including fatigue, headache, dizziness HOW I TREAT MYELOPROLIFERATIVE NEOPLASMS How I Treat MPN’s. The following research report provides an array of treatment options for Essential Thrombocythemia, Polycythemia Vera, and Myelofibrosis, including interferon therapy, by top experts in the field of Myeloproliferative Neoplasms. Drs. Claire Harrison, Hans Hasselbalch, Richard Silver, and Ruben Mesa share their expertise in JASON RAPPAPORT'S POLYCYTHEMIA VERA STORY Jason Rappaport is the unusual PV patient who moves quickly in positive traction mode, like a wide receiver sprinting down the field for the game winning touchdown. In fact, he collaborated on the start-up of the fast growing MPN Interferon Forum Facebook group with Christine Santana-Stickelmeyer. The group attracted new members at a

rapid pace

NAC N-ACETYLCYSTEINE SUPPLEMENT MAY BENEFIT MPN PATIENTS David Wallace, Publisher Note: Many patients are looking for anything natural (supplements, diet, exercise, etc.) to help relieve symptoms and possibly improve the course of our disease. This article in Blood Advances, N-acetylcysteine inhibits thrombosis in a murine model of myeloproliferative neoplasm makes a strong case for further

investigation.

HOW I TREAT MPNS.

Intermediate risk ET, age 40-60 platelets less than 1500, no risk factors. Thereis little evidence for clinical practice here. We are awaiting results of the intermediate risk arm of PT-1 clinical trial).

PV REPORTER

Welcome to PV Reporter. PV Reporter was created to provide “easy access” to pertinent information on Polycythemia Vera (PV), Essential Thrombocythemia (ET) and Myelofibrosis (MF). These disorders are Myeloproliferative Neoplasms (MPNs), a closely related group of blood cancers where the bone marrow cells that produce the body’s blood cells function and develop abnormally. SUFFERING FROM SIGNS AND SYMPTOMS OF POLYCYTHEMIA VERASIGNS AND SYMPTOMS POLYCYTHEMIA VERAALL SYMPTOMS OF POLYCYTHEMIA VERAEARLY SYMPTOMS OF POLYCYTHEMIA VERASECONDARY CAUSES OF POLYCYTHEMIA VERASYMPTOMS OF POLYCYTHEMIAWHAT ARE THE SYMPTOMS OF POLYCYTHEMIA Polycythemia Vera has a slow, but insidious progression. As a 70-year-old man, I concluded that my increasing fatigue was due to long working hours and not sleeping enough. I concluded that increasing levels of fatigue were also due to getting older and not retiring when I was 65 years old. High blood pressure became a

problem.

POLYCYTHEMIA VERA PV BRAIN FOG Polycythemia Vera Brain Fog. Nutrition and Diet May Reduce Chronic Inflammation while Improving Symptom Burden in MPN patients. Chronic Pain in Over 50 percent of MPN Cancer patients. MPNs and Insomnia – Tips for Better Sleep. About David Wallace. Founder of PV Reporter, a resource for Myeloproliferative Neoplasm (MPN) patients and

caregivers.

BONE & JOINT PAIN IN MPN PATIENTS EXPLAINED In MPN, the bone marrow expands outward to the long bones and can be seen even out in the fingers and toes when bone marrow scanning is done. The proliferation within the bone marrow cavity may cause pressure inside the bone that, in turn, causes inflammation of the covering of the bone (periostium). The resulting periostitis may be

painful.

JASON RAPPAPORT'S POLYCYTHEMIA VERA STORY Jason Rappaport is the unusual PV patient who moves quickly in positive traction mode, like a wide receiver sprinting down the field for the game winning touchdown. In fact, he collaborated on the start-up of the fast growing MPN Interferon Forum Facebook group with Christine Santana-Stickelmeyer. The group attracted new members at a

rapid pace

BLOOD CENTERS THAT POLYCYTHEMIA VERA PATIENTS CAN USE As a Polycythemia Vera patient, you can not give blood to the Red Cross. You can go to blood centers where they will accept blood from a PV patient for what is referred to as “therapeutic phlebotomy.”. You will need to check with the respective blood center in your area. Many of the donor centers offer the service as a free community

service.

ROPEGINTERFERON EFFECTIVE TREATMENT FOR POLYCYTHEMIA VERANEW DRUG FOR

POLYCYTHEMIA VERA

In the PROUD-PV / CONTINUATION PV study, long-term treatment with ropeginterferon alpha-2b (BESREMi) was compared with the standard cytoreductive therapy regarding thrombotic and other adverse events as well as hematological and molecular parameters over a four-year period. The key treatment goals for PV are to prevent thrombotic

events and

STRATEGIES TO BEAT ITCHING IN POLYCYTHEMIA VERA One of the best ways to beat itching in MPN may very well be OTC combo of Zyrtec and Zantac (June 2016). 👉 Zantac (ranitidine) however is no longer available but another H2 blocker can be substituted: Pepcid (famotidine) is approximately 8 times more potent than Zantac. (August 2020 update) Here is medical commentary on “Mast Cells and Histamine in MPN Related Itching Explained” – by ZYRTEC AND ZANTAC HELPING PV PATIENTS GET RELIEF FROM ITCHING!SEE MORE

ON PVREPORTER.COM

NAC N-ACETYLCYSTEINE SUPPLEMENT MAY BENEFIT MPN PATIENTSN ACETYLCYSTEINE BENEFITSN ACETYLCYSTEINE DOSE N-acetylcysteine (NAC) supplement has shown to have Antioxidant and Anti-inflammatory Properties. Polycythemia vera, essential thrombocythemia and myelofibrosis make up a class of blood cancers called myeloproliferative neoplasms or MPNs. MPNs are characterized by the over-production of red or white blood cells or platelets in the

bone marrow.

PV REPORTER

Welcome to PV Reporter. PV Reporter was created to provide “easy access” to pertinent information on Polycythemia Vera (PV), Essential Thrombocythemia (ET) and Myelofibrosis (MF). These disorders are Myeloproliferative Neoplasms (MPNs), a closely related group of blood cancers where the bone marrow cells that produce the body’s blood cells function and develop abnormally. SUFFERING FROM SIGNS AND SYMPTOMS OF POLYCYTHEMIA VERASIGNS AND SYMPTOMS POLYCYTHEMIA VERAALL SYMPTOMS OF POLYCYTHEMIA VERAEARLY SYMPTOMS OF POLYCYTHEMIA VERASECONDARY CAUSES OF POLYCYTHEMIA VERASYMPTOMS OF POLYCYTHEMIAWHAT ARE THE SYMPTOMS OF POLYCYTHEMIA Polycythemia Vera has a slow, but insidious progression. As a 70-year-old man, I concluded that my increasing fatigue was due to long working hours and not sleeping enough. I concluded that increasing levels of fatigue were also due to getting older and not retiring when I was 65 years old. High blood pressure became a

problem.

POLYCYTHEMIA VERA PV BRAIN FOG Polycythemia Vera Brain Fog. Nutrition and Diet May Reduce Chronic Inflammation while Improving Symptom Burden in MPN patients. Chronic Pain in Over 50 percent of MPN Cancer patients. MPNs and Insomnia – Tips for Better Sleep. About David Wallace. Founder of PV Reporter, a resource for Myeloproliferative Neoplasm (MPN) patients and

caregivers.

BONE & JOINT PAIN IN MPN PATIENTS EXPLAINED In MPN, the bone marrow expands outward to the long bones and can be seen even out in the fingers and toes when bone marrow scanning is done. The proliferation within the bone marrow cavity may cause pressure inside the bone that, in turn, causes inflammation of the covering of the bone (periostium). The resulting periostitis may be

painful.

JASON RAPPAPORT'S POLYCYTHEMIA VERA STORY Jason Rappaport is the unusual PV patient who moves quickly in positive traction mode, like a wide receiver sprinting down the field for the game winning touchdown. In fact, he collaborated on the start-up of the fast growing MPN Interferon Forum Facebook group with Christine Santana-Stickelmeyer. The group attracted new members at a

rapid pace

BLOOD CENTERS THAT POLYCYTHEMIA VERA PATIENTS CAN USE As a Polycythemia Vera patient, you can not give blood to the Red Cross. You can go to blood centers where they will accept blood from a PV patient for what is referred to as “therapeutic phlebotomy.”. You will need to check with the respective blood center in your area. Many of the donor centers offer the service as a free community

service.

ROPEGINTERFERON EFFECTIVE TREATMENT FOR POLYCYTHEMIA VERANEW DRUG FOR

POLYCYTHEMIA VERA

In the PROUD-PV / CONTINUATION PV study, long-term treatment with ropeginterferon alpha-2b (BESREMi) was compared with the standard cytoreductive therapy regarding thrombotic and other adverse events as well as hematological and molecular parameters over a four-year period. The key treatment goals for PV are to prevent thrombotic

events and

STRATEGIES TO BEAT ITCHING IN POLYCYTHEMIA VERA One of the best ways to beat itching in MPN may very well be OTC combo of Zyrtec and Zantac (June 2016). 👉 Zantac (ranitidine) however is no longer available but another H2 blocker can be substituted: Pepcid (famotidine) is approximately 8 times more potent than Zantac. (August 2020 update) Here is medical commentary on “Mast Cells and Histamine in MPN Related Itching Explained” – by ZYRTEC AND ZANTAC HELPING PV PATIENTS GET RELIEF FROM ITCHING!SEE MORE

ON PVREPORTER.COM

NAC N-ACETYLCYSTEINE SUPPLEMENT MAY BENEFIT MPN PATIENTSN ACETYLCYSTEINE BENEFITSN ACETYLCYSTEINE DOSE N-acetylcysteine (NAC) supplement has shown to have Antioxidant and Anti-inflammatory Properties. Polycythemia vera, essential thrombocythemia and myelofibrosis make up a class of blood cancers called myeloproliferative neoplasms or MPNs. MPNs are characterized by the over-production of red or white blood cells or platelets in the

bone marrow.

WHAT IS POLYCYTHEMIA VERA? Polycythemia vera (PV) is a chronic, progressive myeloproliferative neoplasm (MPN) primarily characterized by an elevation of the red blood cells. The disease is most common in men over the age of 60, but anyone can develop PV. PV patients typically experience an elevated leukocyte (white blood cell) count, an elevated platelet count and an

MPN NEWS FEED

The MPN News feed provides frequent updates on the latest happenings in the MPN World. Fresh content, with brief summary is automatically updated frequently from reliable sources. Just click on the red hyperlink to pull up the complete news item. Make PV Reporter your “starting point” for all MPN related news. Parachuting from a

Crippled

POLYCYTHEMIA VERA PRE-DIAGNOSIS PATIENT REPORT Founder of PV Reporter, a resource for Myeloproliferative Neoplasm (MPN) patients and caregivers. After being diagnosed with Polycythemia Vera (PV) in 2009, I utilized social media to connect with "informed patients" and develop a better understanding of emerging treatment options. My philosophy on patient care is straight forward -

"educating

BLOOD CENTERS THAT POLYCYTHEMIA VERA PATIENTS CAN USE As a Polycythemia Vera patient, you can not give blood to the Red Cross. You can go to blood centers where they will accept blood from a PV patient for what is referred to as “therapeutic phlebotomy.”. You will need to check with the respective blood center in your area. Many of the donor centers offer the service as a free community

service.

BREAKING NEWS FOR MYELOFIBROSIS PATIENTS August 2019 Update – Fedratinib receives FDA approval for Myelofibrosis patients. Founder of PV Reporter, a resource for Myeloproliferative Neoplasm (MPN) patients and caregivers. After being diagnosed with Polycythemia Vera (PV) in 2009, I utilized social media to connect with "informed patients" and develop a better understanding

of

RIGGINS BLACK POLYCYTHEMIA VERA STORY Founder of PV Reporter, a resource for Myeloproliferative Neoplasm (MPN) patients and caregivers. After being diagnosed with Polycythemia Vera (PV) in 2009, I utilized social media to connect with "informed patients" and develop a better understanding of emerging treatment options. My philosophy on patient care is straight forward -

"educating

HOW I TREAT MYELOPROLIFERATIVE NEOPLASMS How I Treat MPN’s. The following research report provides an array of treatment options for Essential Thrombocythemia, Polycythemia Vera, and Myelofibrosis, including interferon therapy, by top experts in the field of Myeloproliferative Neoplasms. Drs. Claire Harrison, Hans Hasselbalch, Richard Silver, and Ruben Mesa share their expertise in MAST CELLS AND HISTAMINE IN MPN RELATED ITCHING EXPLAINED Itching has been reported in up to 85% of patients with MPN. While the biological basis of itching is not fully understood, the itch sensation is recognized in the brain by signals sent from specific nerve fibers (neurons) within the skin that respond to various types of stimuli. Figure 1. Schematic of a mast cell and the degranulation

process.

CALR MUTATED ESSENTIAL THROMBOCYTHEMIA JAK2 or CALR mutation status defines subtypes of ET with substantially different clinical course and outcomes. Key Points. JAK2 (V617F) mutated essential thrombocythemia and polycythemia vera are different phenotypes in the evolution of a single neoplasm. CALR mutated essential thrombocythemia is a distinct disease entity not only at molecular level but also with respect to clinical outcomes ACTOR JEFF BRIDGES REVEALS LYMPHOMA BLOOD CANCER Bridges didn’t say exactly what type of blood cancer he was dealing with, but all lymphomas affect the lymph system, which is a part of the immune system. The lymph system includes the lymph nodes as well as bone marrow, the spleen, and the thymus gland. Lymphoma can also spread from those areas to other parts of the body.

PV REPORTER

Welcome to PV Reporter. PV Reporter was created to provide “easy access” to pertinent information on Polycythemia Vera (PV), Essential Thrombocythemia (ET) and Myelofibrosis (MF). These disorders are Myeloproliferative Neoplasms (MPNs), a closely related group of blood cancers where the bone marrow cells that produce the body’s blood cells function and develop abnormally. SUFFERING FROM SIGNS AND SYMPTOMS OF POLYCYTHEMIA VERASIGNS AND SYMPTOMS POLYCYTHEMIA VERAALL SYMPTOMS OF POLYCYTHEMIA VERAEARLY SYMPTOMS OF POLYCYTHEMIA VERASECONDARY CAUSES OF POLYCYTHEMIA VERASYMPTOMS OF POLYCYTHEMIAWHAT ARE THE SYMPTOMS OF POLYCYTHEMIA Polycythemia Vera has a slow, but insidious progression. As a 70-year-old man, I concluded that my increasing fatigue was due to long working hours and not sleeping enough. I concluded that increasing levels of fatigue were also due to getting older and not retiring when I was 65 years old. High blood pressure became a

problem.

POLYCYTHEMIA VERA PV BRAIN FOG Polycythemia Vera Brain Fog. Nutrition and Diet May Reduce Chronic Inflammation while Improving Symptom Burden in MPN patients. Chronic Pain in Over 50 percent of MPN Cancer patients. MPNs and Insomnia – Tips for Better Sleep. About David Wallace. Founder of PV Reporter, a resource for Myeloproliferative Neoplasm (MPN) patients and

caregivers.

BONE & JOINT PAIN IN MPN PATIENTS EXPLAINED In MPN, the bone marrow expands outward to the long bones and can be seen even out in the fingers and toes when bone marrow scanning is done. The proliferation within the bone marrow cavity may cause pressure inside the bone that, in turn, causes inflammation of the covering of the bone (periostium). The resulting periostitis may be

painful.

JASON RAPPAPORT'S POLYCYTHEMIA VERA STORY Jason Rappaport is the unusual PV patient who moves quickly in positive traction mode, like a wide receiver sprinting down the field for the game winning touchdown. In fact, he collaborated on the start-up of the fast growing MPN Interferon Forum Facebook group with Christine Santana-Stickelmeyer. The group attracted new members at a

rapid pace

BLOOD CENTERS THAT POLYCYTHEMIA VERA PATIENTS CAN USE As a Polycythemia Vera patient, you can not give blood to the Red Cross. You can go to blood centers where they will accept blood from a PV patient for what is referred to as “therapeutic phlebotomy.”. You will need to check with the respective blood center in your area. Many of the donor centers offer the service as a free community

service.

ROPEGINTERFERON EFFECTIVE TREATMENT FOR POLYCYTHEMIA VERANEW DRUG FOR

POLYCYTHEMIA VERA

In the PROUD-PV / CONTINUATION PV study, long-term treatment with ropeginterferon alpha-2b (BESREMi) was compared with the standard cytoreductive therapy regarding thrombotic and other adverse events as well as hematological and molecular parameters over a four-year period. The key treatment goals for PV are to prevent thrombotic

events and

STRATEGIES TO BEAT ITCHING IN POLYCYTHEMIA VERA One of the best ways to beat itching in MPN may very well be OTC combo of Zyrtec and Zantac (June 2016). 👉 Zantac (ranitidine) however is no longer available but another H2 blocker can be substituted: Pepcid (famotidine) is approximately 8 times more potent than Zantac. (August 2020 update) Here is medical commentary on “Mast Cells and Histamine in MPN Related Itching Explained” – by ZYRTEC AND ZANTAC HELPING PV PATIENTS GET RELIEF FROM ITCHING!SEE MORE

ON PVREPORTER.COM

NAC N-ACETYLCYSTEINE SUPPLEMENT MAY BENEFIT MPN PATIENTSN ACETYLCYSTEINE BENEFITSN ACETYLCYSTEINE DOSE N-acetylcysteine (NAC) supplement has shown to have Antioxidant and Anti-inflammatory Properties. Polycythemia vera, essential thrombocythemia and myelofibrosis make up a class of blood cancers called myeloproliferative neoplasms or MPNs. MPNs are characterized by the over-production of red or white blood cells or platelets in the

bone marrow.

PV REPORTER

Welcome to PV Reporter. PV Reporter was created to provide “easy access” to pertinent information on Polycythemia Vera (PV), Essential Thrombocythemia (ET) and Myelofibrosis (MF). These disorders are Myeloproliferative Neoplasms (MPNs), a closely related group of blood cancers where the bone marrow cells that produce the body’s blood cells function and develop abnormally. SUFFERING FROM SIGNS AND SYMPTOMS OF POLYCYTHEMIA VERASIGNS AND SYMPTOMS POLYCYTHEMIA VERAALL SYMPTOMS OF POLYCYTHEMIA VERAEARLY SYMPTOMS OF POLYCYTHEMIA VERASECONDARY CAUSES OF POLYCYTHEMIA VERASYMPTOMS OF POLYCYTHEMIAWHAT ARE THE SYMPTOMS OF POLYCYTHEMIA Polycythemia Vera has a slow, but insidious progression. As a 70-year-old man, I concluded that my increasing fatigue was due to long working hours and not sleeping enough. I concluded that increasing levels of fatigue were also due to getting older and not retiring when I was 65 years old. High blood pressure became a

problem.

POLYCYTHEMIA VERA PV BRAIN FOG Polycythemia Vera Brain Fog. Nutrition and Diet May Reduce Chronic Inflammation while Improving Symptom Burden in MPN patients. Chronic Pain in Over 50 percent of MPN Cancer patients. MPNs and Insomnia – Tips for Better Sleep. About David Wallace. Founder of PV Reporter, a resource for Myeloproliferative Neoplasm (MPN) patients and

caregivers.

BONE & JOINT PAIN IN MPN PATIENTS EXPLAINED In MPN, the bone marrow expands outward to the long bones and can be seen even out in the fingers and toes when bone marrow scanning is done. The proliferation within the bone marrow cavity may cause pressure inside the bone that, in turn, causes inflammation of the covering of the bone (periostium). The resulting periostitis may be

painful.

JASON RAPPAPORT'S POLYCYTHEMIA VERA STORY Jason Rappaport is the unusual PV patient who moves quickly in positive traction mode, like a wide receiver sprinting down the field for the game winning touchdown. In fact, he collaborated on the start-up of the fast growing MPN Interferon Forum Facebook group with Christine Santana-Stickelmeyer. The group attracted new members at a

rapid pace

BLOOD CENTERS THAT POLYCYTHEMIA VERA PATIENTS CAN USE As a Polycythemia Vera patient, you can not give blood to the Red Cross. You can go to blood centers where they will accept blood from a PV patient for what is referred to as “therapeutic phlebotomy.”. You will need to check with the respective blood center in your area. Many of the donor centers offer the service as a free community

service.

ROPEGINTERFERON EFFECTIVE TREATMENT FOR POLYCYTHEMIA VERANEW DRUG FOR

POLYCYTHEMIA VERA

In the PROUD-PV / CONTINUATION PV study, long-term treatment with ropeginterferon alpha-2b (BESREMi) was compared with the standard cytoreductive therapy regarding thrombotic and other adverse events as well as hematological and molecular parameters over a four-year period. The key treatment goals for PV are to prevent thrombotic

events and

STRATEGIES TO BEAT ITCHING IN POLYCYTHEMIA VERA One of the best ways to beat itching in MPN may very well be OTC combo of Zyrtec and Zantac (June 2016). 👉 Zantac (ranitidine) however is no longer available but another H2 blocker can be substituted: Pepcid (famotidine) is approximately 8 times more potent than Zantac. (August 2020 update) Here is medical commentary on “Mast Cells and Histamine in MPN Related Itching Explained” – by ZYRTEC AND ZANTAC HELPING PV PATIENTS GET RELIEF FROM ITCHING!SEE MORE

ON PVREPORTER.COM

NAC N-ACETYLCYSTEINE SUPPLEMENT MAY BENEFIT MPN PATIENTSN ACETYLCYSTEINE BENEFITSN ACETYLCYSTEINE DOSE N-acetylcysteine (NAC) supplement has shown to have Antioxidant and Anti-inflammatory Properties. Polycythemia vera, essential thrombocythemia and myelofibrosis make up a class of blood cancers called myeloproliferative neoplasms or MPNs. MPNs are characterized by the over-production of red or white blood cells or platelets in the

bone marrow.

WHAT IS POLYCYTHEMIA VERA? Polycythemia vera (PV) is a chronic, progressive myeloproliferative neoplasm (MPN) primarily characterized by an elevation of the red blood cells. The disease is most common in men over the age of 60, but anyone can develop PV. PV patients typically experience an elevated leukocyte (white blood cell) count, an elevated platelet count and an

MPN NEWS FEED

The MPN News feed provides frequent updates on the latest happenings in the MPN World. Fresh content, with brief summary is automatically updated frequently from reliable sources. Just click on the red hyperlink to pull up the complete news item. Make PV Reporter your “starting point” for all MPN related news. Parachuting from a

Crippled

POLYCYTHEMIA VERA PRE-DIAGNOSIS PATIENT REPORT Founder of PV Reporter, a resource for Myeloproliferative Neoplasm (MPN) patients and caregivers. After being diagnosed with Polycythemia Vera (PV) in 2009, I utilized social media to connect with "informed patients" and develop a better understanding of emerging treatment options. My philosophy on patient care is straight forward -

"educating

BLOOD CENTERS THAT POLYCYTHEMIA VERA PATIENTS CAN USE As a Polycythemia Vera patient, you can not give blood to the Red Cross. You can go to blood centers where they will accept blood from a PV patient for what is referred to as “therapeutic phlebotomy.”. You will need to check with the respective blood center in your area. Many of the donor centers offer the service as a free community

service.

BREAKING NEWS FOR MYELOFIBROSIS PATIENTS August 2019 Update – Fedratinib receives FDA approval for Myelofibrosis patients. Founder of PV Reporter, a resource for Myeloproliferative Neoplasm (MPN) patients and caregivers. After being diagnosed with Polycythemia Vera (PV) in 2009, I utilized social media to connect with "informed patients" and develop a better understanding

of

RIGGINS BLACK POLYCYTHEMIA VERA STORY Founder of PV Reporter, a resource for Myeloproliferative Neoplasm (MPN) patients and caregivers. After being diagnosed with Polycythemia Vera (PV) in 2009, I utilized social media to connect with "informed patients" and develop a better understanding of emerging treatment options. My philosophy on patient care is straight forward -

"educating

HOW I TREAT MYELOPROLIFERATIVE NEOPLASMS How I Treat MPN’s. The following research report provides an array of treatment options for Essential Thrombocythemia, Polycythemia Vera, and Myelofibrosis, including interferon therapy, by top experts in the field of Myeloproliferative Neoplasms. Drs. Claire Harrison, Hans Hasselbalch, Richard Silver, and Ruben Mesa share their expertise in MAST CELLS AND HISTAMINE IN MPN RELATED ITCHING EXPLAINED Itching has been reported in up to 85% of patients with MPN. While the biological basis of itching is not fully understood, the itch sensation is recognized in the brain by signals sent from specific nerve fibers (neurons) within the skin that respond to various types of stimuli. Figure 1. Schematic of a mast cell and the degranulation

process.

CALR MUTATED ESSENTIAL THROMBOCYTHEMIA JAK2 or CALR mutation status defines subtypes of ET with substantially different clinical course and outcomes. Key Points. JAK2 (V617F) mutated essential thrombocythemia and polycythemia vera are different phenotypes in the evolution of a single neoplasm. CALR mutated essential thrombocythemia is a distinct disease entity not only at molecular level but also with respect to clinical outcomes ACTOR JEFF BRIDGES REVEALS LYMPHOMA BLOOD CANCER Bridges didn’t say exactly what type of blood cancer he was dealing with, but all lymphomas affect the lymph system, which is a part of the immune system. The lymph system includes the lymph nodes as well as bone marrow, the spleen, and the thymus gland. Lymphoma can also spread from those areas to other parts of the body.

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* 01: Polycythemia Vera Diagnosis, PV Reporter, Day 1, Doomsday or

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* 02: MPN Chronicles – Interview with Dr. Pemmaraju * 03: Learn Benefits of Becoming your own MPN Advocate * 04: First Hematologist appointment for PV patient * 05: Tips to Living Well with an MPN

* Treatment »

* Jakafi

* INREBIC

* Interferon treatment for MPNs

* ASH Interviews »

* Dr. Jean Jacques Kiladjian ASH 2018 RuxoPeg Phase 1/2 Trial of the Combo of Ruxolitinib and Pegasys in Myelofibrosis Patients * Dr. Michael Grunwald ASH 2018 Risk Assessment and Treatment Myelofibrosis Patients at Community Oncology Practices in the U.S. * Dr. J.J. Kiladjian ASH 2018 Headline Research Studies * ASH 2017 Interview with Dr. Michael Grunwald » * ASH 2017 Interview with Dr. Raajit Rampal, part 1 * ASH 2017 with Dr. Raajit Rampal, part 2 * ASH 2017 Interview with Dr. Jean Jacques Kiladjian, part 1 * ASH 2017 Interview with Dr. Jean Jacques Kiladjian, part 2 * ASH 2016 Interviews » * ASH 2016 Interview with Dr Kiladjian * ASH 2016 Interview with Dr Rampal * ASH 2015 Interviews » * ASH 2015 Interview with Dr John Mascarenhas * ASH 2015 Interview with Dr Angela Fleischman * ASH 2014 Interviews » * ASH 2014 Interview with Dr Heinz Gisslinger * ASH 2014 interview with Dr Richard Stone

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PV REPORTER

INTRODUCTION

PV REPORTER WAS CREATED TO PROVIDE “EASY ACCESS” to pertinent information on Polycythemia Vera (PV),  Essential Thrombocythemia (ET) and Myelofibrosis (MF).  These disorders are Myeloproliferative Neoplasms (MPNs), a closely related group of blood cancers where the bone marrow cells that produce the body’s blood cells function and develop abnormally.  If you are a newly diagnosed patient or researching MPNs, MAKE PV REPORTER YOUR STARTING POINT.  While many existing MPN websites provide excellent content, they tend to be internally focused or LACK EXTERNAL SEARCH CAPABILITIES.  PV Reporter solves that problem with MPN SEARCH

, a

“CUSTOM SEARCH ENGINE” retrieving exactly the information you are looking for!  An _internal search engine_ is on the right side bar. ------------------------- IN THE SPOTLIGHT – TOP ARTICLES AND PAGES

*

Autoimmune Disorders that May Coexist with MPNs

*

Chronic Pain in over 50% of MPN Cancer patients

*

Blog - Over 90 pages!....MPN news, articles, patient stories, research

and interviews

*

MPNs and Insomnia: Tips for Better Sleep

*

Well You Don’t Look Sick

*

Learn the Benefits of Becoming your own Advocate

*

Questions to Ask your Doctor for a PV Appointment

*

PV For Newbies – A Patient’s Perspective

*

Bone & Joint Pain in MPN Patients Revealed

*

Mast Cells and Histamine in MPN Related Itching Explained

*

Emerging Drugs for Polycythemia Vera

* 1

* 2

* 3

* 4

* 5

* 6

* 7

* 8

* 9

* 10

* 11

* / 11

*

*

-------------------------

MPN SPECIALISTS

One of the most important things a patient can do is see a true MPN Specialist, the earlier on in the course of your disease, the better.  Here are some important criteria to consider

.

THIS LIST HAS BEEN REVIEWED BY A MPN EXPERT AND EACH ADDITIONAL SPECIALIST ADDED HAS BEEN CAREFULLY VETTED.  A patient recently asked me “what is the difference between your list and another one I found that has far more doctors?”  I explained, the other list is patient recommend and carries far less value and credibility. The reason is that many patients do not even understand what a true MPN specialist is.  Many see their local hematologist or oncologist and think he/she is an MPN specialist because this is the only doctor they have ever seen that will discuss PV, ET or MF with them and treat to the best of their ability.  That is the reason the list has far

more doctors.

CLICK HERE FOR A COMPREHENSIVE, “DOCTOR REVIEWED,” LISTING OF MPN SPECIALISTS IN THE UNITED STATES

.

The list is constantly updated. ------------------------- NEED SOMEONE TO TALK TO?

Would

you like to speak with an Information Specialist to obtain information and resources about polycythemia vera?  THE LEUKEMIA AND LYMPHOMA SOCIETY’S (LLS) INFORMATION SPECIALISTS ARE AVAILABLE 9AM-9PM (EST) MONDAY-FRIDAY VIA PHONE, EMAIL AND CHAT. They can assist you through cancer treatment, finding a clinical trial, financial and social challenges and give accurate, up-to-date disease, treatment and support information.  For more information and to contact LLS, click here

.

-------------------------

MPN SEARCH

The MPN Search page

retrieves

pertinent information from “trusted sources”, while leaving behind the mountains of disconnected data that a standard google search

brings back.

> MPN SEARCH IS A “CUSTOM SEARCH ENGINE” THAT INDEXES RESEARCH > DATA, REPORTS, STORIES, AND NEWS ITEMS FROM SOME OF THE BEST > REFERENCE SOURCES IN THE MPN WORLD. Sources include highly respected sites such as Blood Journal, MPN Research Foundation, Mayo Clinic, MPNforum and more.  If you want to research information on PV, interferon, phlebotomy, Dr. Mesa, Essential Thrombocythemia (ET), Myelofibrosis (MF) or whatever, just

click on MPN SEARCH

, type it

into the search box and you will immediately be served the information you are seeking.  Perhaps, the most comprehensive research tool on the web related to Polycythemia Vera, MPNs, ET, and MF, pulling aggregate data from “trusted authority sites.” ------------------------- MPN DISCUSSION GROUP

This

group is for people with myeloproliferative neoplasms (MPNs).  MPNs include Polycythemia Vera (PV), Essential Thrombocythemia (ET) and Myelofibrosis (MF).  Friends, family members and others are also encouraged to participate in the discussion.  THE FORUM IS MODERATED BY AN MD.  CLICK HERE TO JOIN THE DISCUSSION GROUP

.

------------------------- BLOG PAGE (OVER 90 ARTICLES)

The

BLOG PAGE  provides timely, relevant news items, research reports, “‘patient stories”, presentations, clinical trials and delivers information that will be useful to you, the patient or caregiver

, as well as

doctors and researchers. _PLEASE BE SURE TO SCROLL BACK THROUGH THE MULTIPLE PAGES, there are many posts that provide tips to improve your quality of life, save you money on prescriptions/co-pays

,

teach you how to become your own advocate, new MPN treatments and so

much more._

-------------------------

MPN NEWS FEED

The

MPN NEWS FEED PROVIDES REGULAR, AUTOMATED UPDATES ON THE LATEST HAPPENINGS in the MPN World.  Fresh content served with a brief summary, date and news source.  Check it out on a regular basis.  Please be patient as this page draws information from numerous sources. -------------------------

PATIENT STORIES

Our fellow MPN Patients share their trials and tribulations

with

Polycythemia Vera, Myelofibrosis and Essential Thrombocythemia.  One of the common themes among patient stories featured is patients must learn about their illness, stay informed and advocate for the best treatment available by seeing an MPN Specialist

.

-------------------------

EMPOWERED PATIENTS

MPN

Patients can become EMPOWERED PATIENTS or E-PATIENTS by embracing online patient communities , state of the art research tools

and

shared experiences.  Armed with the proper information, you can go from a patient intimidated by your doctor to someone who demands to be a partner in medical decision making.  Do your research, the more you learn about your illness and appropriate treatment options, the better armed you will be in advocating for better care.  KNOW WHAT QUESTIONS TO ASK YOUR PHYSICIAN

.

> Philosophy for Patient Care – Educating the patient is essential, > so the patient can guide the physician to meet his or her needs. ALWAYS GET COPIES OF YOUR CBC (BLOOD PANEL), TESTS, LAB RESULTS AND

RECORDS FOR YOUR

FILES AT HOME.  Don’t be shy, this is your information and it is crucial for you to learn and understand the test results so you can be properly prepared for future appointments. -------------------------

SITE GOALS & NOTES

> * MAKE PV REPORTER THE STARTING POINT FOR YOUR RESEARCH

> .

>      * Social – click the “sharing is caring” buttons at the > bottom of each page and help us spread MPN Awareness. >      * Well Informed Patients are empowered to make better healthcare

> decisions.

>      * PLEASE VISIT MPN CANCER CONNECTION >  – our non-profit organization > for more resources. >      * WANT TO SHARE YOUR STORY_? – Drop us a note.

> _

------------------------- RESOURCES ON PV REPORTER Numerous MPN RESOURCES can be found here.  A growing list with helpful research tools, support groups and information for all MPN patients.  This page offers a broad selection of resources to continue your research. * CO-PAY AND MEDICATION ASSISTANCE, MPN WEBSITES, AIRFARE, FEDERAL U.S. BENEFITS _(PROVIDED BY MPN CANCER CONNECTION , OUR NON PROFIT ORGANIZATION)_ * Facebook Groups – first hand “shared knowledge” and patient support (request to join) FOLLOW US ON FACEBOOK – 6 years of MPN articles, research studies, personal stories and more. ------------------------- NEW MPN RESOURCES – 2020 UPDATE

*

* Current and Resolved Drug Shortages and Discontinuations Reported

to FDA

* Great site for information on herbs, botanicals, supplements, other complementary medicines * Helpful resources for finding financial assistance in each state (scroll down and choose state) * Local financial assistance * Free or Reduced-Cost Healthcare -------------------------

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2020 UPDATE ON THIS MYTH-BUSTER! ARE MYELOPROLIFERATIVE NEOPLASMS A RARE DISEASE? NEW VIDEOS PAGE – 2020 VISIT OUR BLOG – OVER 90 MPN ARTICLES!

FEATURE POST

ROPEGINTERFERON EFFECTIVE TREATMENT FOR POLYCYTHEMIA VERA NEW MPN RESEARCH GRANT FOR 2020! THE AACR-MPM ONCOLOGY CHARITABLE FOUNDATION ANNOUNCES FIRST GRANTS TO SUPPORT TRANSFORMATIVE CANCER RESEARCH

ABOUT

PV REPORTER WAS CREATED BY DAVID WALLACE, an aspiring web designer, publisher, writer, reporter, patient advocate and chief bottle washer. I have been a PV patient since 2009. PV BECAME A MOTIVATING FACTOR TO PUSH MYSELF TO ALWAYS BE LEARNING SOMETHING NEW. Learning web design and becoming a patient advocate were some of my primary goals. SIGN UP FOR OUR NEWSLETTER!

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Are Myeloproliferative Neoplasms a Rare Disease?

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RECENT POSTS

* The AACR-MPM Oncology Charitable Foundation Announces First Grants to Support Transformative Cancer Research * Ropeginterferon Effective Treatment for Polycythemia Vera * PV Reporter Attends MPN Horizons 2019, 4th Annual Global

Conference

* MPN Caregiver Spotlight

FEATURE POST

NUTRITION AND DIET MAY REDUCE CHRONIC INFLAMMATION WHILE IMPROVING SYMPTOM BURDEN IN MPN PATIENTS

MPN NEWS

* Patient Focused Clinical Trials will Improve Next Generation Drugs Improving the next generation of drugs through patient-centric design for clinical trials by Richard Ghalie (Senior VP for Clinical Development at MEI Pharma) When a process The post Patient Focused Clinical Trials will Improve Next Generation Drugs appeared first on MPN Cancer Connection. * Curcumin induces apoptosis in JAK2‐mutated cells by the inhibition of JAK2/STAT and mTORC1 pathways Open Access Article – Petiti J, Rosso V, Lo Iacono M, et al. Curcumin induces apoptosis in JAK2‐mutated cells by the inhibition of JAK2/STAT and mTORC1 The post Curcumin induces apoptosis in JAK2‐mutated cells by the inhibition of JAK2/STAT and mTORC1 pathways appeared first on MPN Cancer Connection. * Walking Pace Predicts Clinical Outcomes in Older Adults with Blood

Cancers

Slower walking pace linked to a higher likelihood of death and hospital visits; Researchers say gait speed should be used along with other vital signs to The post Walking Pace Predicts Clinical Outcomes in Older Adults with Blood Cancers appeared first on MPN

Cancer Connection.

* MPN Cancer Survivor Self-Care Tips by Scott Sanders (guest author) A cancer diagnosis is devastating but it isn’t a death sentence (in most cases).  Myeloproliferative Neoplasms, MPNs, are treatable and with The post MPN Cancer Survivor Self-Care Tips appeared first on MPN Cancer Connection. 2018 MPN PATIENT GUIDELINES Click on the image above for the New MPN Patient Guidelines! Very detailed, provided by NCCN.

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▼

* Patient Stories

* Podcast

▼

* 01: Polycythemia Vera Diagnosis, PV Reporter, Day 1, Doomsday or

Living with a Plan

* 02: MPN Chronicles – Interview with Dr. Pemmaraju * 03: Learn Benefits of Becoming your own MPN Advocate * 04: First Hematologist appointment for PV patient * 05: Tips to Living Well with an MPN

* Treatment

▼

* Jakafi

* INREBIC

* Interferon treatment for MPNs

* ASH Interviews

▼

* Dr. Jean Jacques Kiladjian ASH 2018 RuxoPeg Phase 1/2 Trial of the Combo of Ruxolitinib and Pegasys in Myelofibrosis Patients * Dr. Michael Grunwald ASH 2018 Risk Assessment and Treatment Myelofibrosis Patients at Community Oncology Practices in the U.S. * Dr. J.J. Kiladjian ASH 2018 Headline Research Studies * ASH 2017 Interview with Dr. Michael Grunwald

▼

* ASH 2017 Interview with Dr. Raajit Rampal, part 1 * ASH 2017 with Dr. Raajit Rampal, part 2 * ASH 2017 Interview with Dr. Jean Jacques Kiladjian, part 1 * ASH 2017 Interview with Dr. Jean Jacques Kiladjian, part 2 * ASH 2016 Interviews

▼

* ASH 2016 Interview with Dr Kiladjian * ASH 2016 Interview with Dr Rampal * ASH 2015 Interviews

▼

* ASH 2015 Interview with Dr John Mascarenhas * ASH 2015 Interview with Dr Angela Fleischman * ASH 2014 Interviews

▼

* ASH 2014 Interview with Dr Heinz Gisslinger * ASH 2014 interview with Dr Richard Stone

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* MPN-CC