The Benefits of Jakafi for Patients with PV

Jeanne M. Palmer, M.D., hematologist oncologist at the Mayo Clinic in Arizona discusses the benefit of Jakafi (ruxolitinib) for patients with polycythemia vera (PV) – a type of myeloproliferative neoplasm.

Patients with PV tend to be very symptomatic, and Jakafi provides good symptom control compared to some other PV treatments that have their own set of risks and side effects.

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Learn more about PV

Pacritinib Can Fill Unmet Need in Myelofibrosis

The investigational agent pacritinib (CTI BioPharma) holds promise as a treatment option for patients with myelofibrosis and baseline thrombocytopenia, and previous concerns that led to a hold on clinical trials have now been dispelled.

In a pivotal trial, PERSIST-2, pacritinib was significantly more effective than the best available therapy, including ruxolitinib (Jakafi, Incyte), in reducing splenomegaly and trended toward a reduction in total symptom score in patients with myelofibrosis and thrombocytopenia.

The study was published online March 8 in JAMA Oncology. Ruxolitinib, which was approved in 2011 and the first drug ever approved for myelofibrosis, is not safe for patients with low platelet counts.

“The label on ruxolitinib states it is for patients with platelet counts above 50,000, so it isn’t a viable option for those with thrombocytopenia,” said lead author, John Mascarenhas, MD, associate professor of medicine, hematology and medical oncology, at the Tisch Cancer Institute, Icahn School of Medicine at Mount Sinai in New York.

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View Dr. Mascarenhas’ presentation at MPN Advocacy’s San Antonio Patient Program

Recruiting: New Phase 2 Clinical Trial for MF Patients on Ruxolitinib

People with myelofibrosis who are currently receiving ruxolitinib therapy may be eligible for a new phase II clinical trial led by Dr. Ellen Ritchie.

Navitoclax is an investigational agent that inhibits a family of BCL proteins. These proteins block some of the enzymes that keep cancer cells from dying and by inhibiting these proteins, navitoclax may cause the cancer cells to die.  Ruxolitinib is approved by the FDA for the treatment of myelofibrosis. Ruxolitinib blocks a protein called Janus-associated kinases (JAK) which may help keep abnormal blood cells or cancer cells from growing.

The purpose of this study is to evaluate the addition of navitoclax to ruxolitinib in patients who have been receiving ruxolitinib alone. Ruxolitinib treatment alone has not been fully controlling disease which is evident by an enlarged spleen. Preclinical data suggest that the combination of navitoclax with ruxolitinib are synergistic and that navitoclax may help to overcome disease resistance to ruxolitinib.

The study will help to determine the effect of the combination of navitoclax plus ruxolitinib on your cancer. The study will evaluate how the efficacy and safety of the drug.

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View MF Clinical Trials



MPN Explanations in Multiple Languages

MPN Advocacy & Education International’s website can be translated into multiple languages.  From the home page, select the language from the drop down menu in the upper-right hand corner.

Below are brief explanations of MPNs by MPN Specialists in various languages.


Ver la explicación del Dr. mesa de MPN en Español

Para ver el sitio web en Español Haga clic en la opción de idioma en la esquina superior derecha del sitio web


الدكتور الجنادي ، رئيس قسم أمراض الدم ، جامعة ولاية ميشيغان ، يقدم شرحًا موجزًا ​​عن الأورام النقوية (MPNs) باللغة العربية.

Study Finds Nutritional Changes Can Improve Symptom Burden

Patients with MPNs have increased inflammatory cytokines, which contribute to symptoms such as fatigue, night sweats and bone pain, as well as low cholesterol and weight loss related to nutritional deficiencies.
BY Katie Kosko
PUBLISHED March 05, 2018
DIET AND SUPPLEMENT USE can help alleviate some of the symptom burden experienced by patients with myeloproliferative neoplasms (MPNs), according to a study conducted by Mayo Clinic researchers.

Patients with MPNs have increased inflammatory cytokines, which contribute to symptoms such as fatigue, night sweats and bone pain, as well as low cholesterol and weight loss related to nutritional deficiencies.

To examine the habits, needs and preferences among this population, researchers used an internet-based survey through the Mayo Clinic Survey Research Center and promoted it on many MPN-focused websites and communities in February 2017. The survey included data on demographics, disease characteristics, nutritional habits, supplement use and symptom burden using the Myeloproliferative Neoplasm Symptom Assessment Form and Total Symptom Score.

The 1,329 patients who responded to the survey represented 37 countries and had the following types of disease: myelofibrosis, 24 percent; polycythemia vera, 37 percent; and essential thrombocythemia, 38 percent. Of those patients, 1,131 consented to taking the survey. The average total symptom score was 31.

Survey results showed that 34 percent of patients endorsed using diet to help control their symptoms or disease, 23 percent had food allergies or intolerances and 31 percent followed a specific or restricted diet.

Nearly all patients who responded (96 percent) said they would be willing to eat only certain foods if it helped to control symptom burden, stabilize their disease or reduce the risk of it worsening (98 percent). Over-the-counter supplements were used by 72 percent of patients, more often by women (74 percent) than men (66 percent).

Supplement users also were more likely to be older, have lower self-reported body mass index and engage in at least 30 minutes of physical activity.

Lower symptom score was associated with alcohol intake, baked foods, dairy and pasta; higher score, with fast food, premade snacks, soda and refined sugar. Symptom burden was significantly lower among patients using amino acid supplements and N-acetylcysteine, but significantly higher in those taking Bach flower remedies

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Video Presentations: San Antonio Patient/Caregiver Program 2/24/18

MPN Advocacy and Education International hosted its very first patient and caregiver program in San Antonio, Texas on February 24. Dr. Ruben Mesa, our scientific advisor and frequent speaker, initiated and assisted with this program’s agenda. Drs. Mesa, Michaelis, Verstovsek, Scherber, Mascarehnas, Gotlib, Palmer and Lyons presented to a packed audience. We will return to San Antonio in 2020.

Click the video screen below to view each presentation

Ann Brazeau, CEO, MPN Advocacy & Education International

Dr. Jason Gotlib, MD, MS, Stanford University Medical Center

Dr. Laura Michaelis, MD, Medical College of Wisconsin/Froedert Hospital


Dr. John Mascarenhas, MD, Icahn School of Medicine

Dr. Srdan Verstovsek, MD, PhD, MD Anderson Cancer Center


Dr. Jeanne Palmer, MD, Mayo Clinic


Panel Q & A


Dr. Robyn Scherber, MD, Mayo Clinic, Arizona


Dr. Ruben Mesa, MD, UT Health San Antonio Cancer Center

A Veteran’s Story: The Frustrations of Filing a Claim with the VA

By Wayne E.

MPN Patient and Vietnam Veteran Wayne E.

I served in the USAF Security Service, 6924th Security Squadron, stationed in Da Nang, Vietnam for one year (1970-1971) and was exposed to the deadly Agent Orange/Dioxin. In 2007, after a simple pre-op blood test, I was diagnosed with essential thrombocythemia (ET). Upon further study I was told I had an incurable, but manageable, blood cancer, coupled with a gene mutation (JAK2). The word cancer scared me. I had never heard of ET and I was at a loss for what to do. I didn’t know where to go next. After much reading about these potentially deadly diseases, I found out I was one of many Vietnam Veterans who had an MPN.

In 2011, I filed my first claim with the VA. Until this filing, I was unable to get any substantial information from my primary care physician (PHP) or my hematologist/oncologist, as to what may have caused or contributed to my ET. They knew virtually nothing about Agent Orange. I contacted the National Institutes of Health, The Centers for Disease Control, and as many online medical sites as possible, all ending with a bigger question mark. Nothing could be explained to satisfy my inquiry.

It was by chance that I connected with a most remarkable group, MPN Advocacy and Education International. I could never thank them enough for the compassion and the understanding they extended to me.

After my initial rejection from the VA, I filed three more times and each time I was denied because MPNs are not on the “presumptive” list of Agent Orange-related illnesses. The same message I kept getting was I needed “clinical rationale” to support my claims. My doctors have not been able to provide me with this needed information. I don’t know what to do today. I understand there are many Vietnam vets that have won their appeals and now get benefits, but there are many others who were not approved and just gave up. I don’t plan to give up.

To my fellow Vietnam Veterans who may be dealing with one of these MPNs, don’t give up. If you have been denied, file an appeal. There is hope, comfort, and assistance available. With the help of MPN Advocacy and Education International.

 Learn more about filing a claim with the VA

 Learn more about Veterans and MPNs

A Physician’s Perspective on the use of Social Media

By Dr. Naveen Pemmaraju, MD, MD Anderson Cancer Center

“The forum of social media is for information that is meant to be a general outline, not personalized therapy for an individual.”

For physicians who are balancing a heavy workload, how do you view the role of social media?

I think at least a working knowledge of social media usage is essential in today’s modern era of information. I know many hematologists and other physicians who get a good chunk of information for the day from social media such as Twitter, including myself. In five minutes, one can quickly glean important items for the day in the hematology/oncology-specific areas of interest. These posts can be “liked,” saving it for later reference when more time permits, serving as a personal bookmarking tool. Dr. Mike Thompson, my own Twitter mentor, published two really nice primers on this exact topic, and they provide a nice guide to getting yourself involved:

Twitter 101 and beyond: introduction to social media platforms available to practicing hematologist/oncologists.

Social Media and the Practicing Hematologist: Twitter 101 for the Busy Healthcare Provider.


What are your thoughts on the use of social media for patients? Pros and Cons? 

We live in an era of readily accessible information. Overall, this is a wonderful thing for our patients and providers alike. With this, it means we have information readily available, 24-7 at our fingertips. This includes online formats in the newer platforms such as social media.

For patients the pros include the ability to see up-to-the-minute information and announcements from key opinion leaders and professionals in the MPN field via twitter using #MPNSM (this is a grassroots twitter community started by me  along with other academic investigator); the access to online support groups such as on facebook for interaction, support, group discussions, information, comfort, and caregiver help; the ability to contribute one’s own valuable experiences to the public using blogs, websites, private facebook groups. (go to MPN Advocacy’s twitter page)

On the con side, one must understand that what you post comes great responsibility. Myself and others have written in the medical literature about the potential pitfalls and unknowns in this space. As with any form of media, we all need to be very careful and mindful of what we post (all is archived!), and that we treat others with the utmost respect. We must always remember to obey HIPAA and other privacy rules /laws. One must be vigilant about misinformation and be ready to identify and report spam, and any incorrect postings.

There are many different ways a person can participate on social media, from using it to gather news, information and opinions, to re-tweeting posts (twitter) or sharing (fb) items that resonate with an individual. Ultimately, one must be comfortable enough to post original content. Take your time, follow others on topics you care about, and assess and re-assess what sources are providing you with relevant, helpful information.

How do you and should you advise others on what they post on social media?

One rule I try to follow and advise others to follow is to remember to keep things accurate and keep things general. What I mean by this is always strive to give authentic, truthful accounts – whether it is about your impressions from a meeting, detailed scientific analysis, or experiences. Remember, all items on social media are archived-they are forever. Refrain from giving specific medical advice for specific situations. Instead, direct patients to make a formal appointment.

Dr. Pemmaraju has been a pioneer in the early stages of developing social media and its interface with hematology/oncology. We are pleased to have him offer his insights on the use of social media for both patients and medical professionals.
Dr. Pemmaraju will be joining us at the MPN Patient/Caregiver Program in Cleveland, learn more.

Blood Cancers are Outsmarting the Immune System, But How?

Researchers have discovered how some of the blood cancers known as myeloproliferative neoplasms (MPNs) evade the immune system. Their findings reveal that a subset of MPNs might be susceptible to treatment with immune checkpoint inhibitors that specifically target the PD-1/PD-L1 pathway (a signaling network that normally functions as an “off switch” that blocks T cells from attacking other cell types), such as the currently marketed therapies Keytruda™ and Tecentriq™.

Certain cancers hijack the PD-1/PD-L1 pathway to prevent T cells from eradicating malignant cells, and scientists have remained uncertain if MPNs (a group of diseases where bone marrow makes too many red blood cells, white blood cells or platelets) avoided the immune system through similar mechanisms. Many patients with MPNs have abnormally activated versions of a signaling protein named JAK2, and Alessandro Prestipino et al. determined that the mutant molecule helps activate PD-L1 production – exposing a potentially promising therapeutic vulnerability. In a patient with the MPN polycythemia vera who had undergone a stem cell transplant and subsequently relapsed, treatment with an anti-PD-1 checkpoint inhibitor led to improved symptoms.

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