MPN Explanation in Spanish

View Dr. Mesa’s explanation of MPNs in Spanish

Ver la explicación del Dr. mesa de MPN en Español

To view website in Spanish click the language option in the upper right corner of the website

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

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.

Read more


Ruxolitinib therapy appears safe prior to allogeneic HSCT for MF

SALT LAKE CITY — Ruxolitinib treatment prior to allogeneic hematopoietic stem cell transplant appeared safe and aided in the prevention of cytokine release syndrome among patients with myelofibrosis, according to results of a phase 2 prospective study presented at the BMT Tandem Meetings.

“[The implications of the study] will let us know if patients with myelofibrosis who take ruxolitinib prior to undergoing stem cell transplant have better posttransplant outcomes,” Rachel B. Salit, MD, assistant member in the clinical research division at Fred Hutchinson Cancer Research Center and physician at Seattle Care Cancer Alliance, told HemOnc Today. “Almost all patients are starting ruxolitinib for myelofibrosis now and they are delaying transplant. There is likely an optimal time for them to move forward when they would do much better in terms of relapse and nonrelapse mortality.”

Allogeneic HSCT is the only potential cure for myelofibrosis; however, guidelines suggest the risk for transplant-related complications are acceptable only for transplant-eligible patients with intermediate-2 or high-risk disease based on the dynamic international predictive scoring system.

Read more

View Myelofibrosis Clinical Trials

Expanding the Use of JAK Inhibitors and Relevant Clinical Trials

Novel Approaches Show Promise in Targeting JAK Pathway

Following the identification of the JAK kinase family in the late 1980s, the novel enzyme group was colloquially known as “just another kinase.”1,2 Since then, these tyrosine kinases have defied that reputation amid abundant evidence showing that they transmit a variety of signals into the cell with many biological consequences.

Dysregulation of the JAK pathway plays a role in the development of numerous tumor types; it is particularly central to the pathophysiology of myelofibrosis (MF) and has long been recognized as a potentially valuable therapeutic target in that malignancy. Ruxolitinib (Jakafi), the first JAK inhibitor to gain FDA approval, has become a centerpiece in the treatment of patients with MF. JAK inhibition has not proved effective in other tumor types, and thus far, no other JAK-targeting therapies have become available.

That picture, however, may be changing. A better understanding of the complexities of JAK signaling in normal and cancerous cells and the design of rational drug combinations, are poised to expand the use of JAK inhibitors in anticancer therapy for hematologic, and possibly solid, tumors. Ruxolitinib continues to be explored in multiple malignancies, and several promising novel agents are being evaluated in clinical trials (TABLE).

JAK Pathway

Read more

Learn More About MPN Clinical Trials

Novel Agent Active in Refractory Polycythemia Vera

Dr. John Mascarenhas, MD is associate professor of medicine at Icahn School of Medicine at Mount Sinai

Idasanutlin demonstrated clinical activity among patients with refractory polycythemia vera, according to study results presented at ASH Annual Meeting and Exposition.

The agent also appeared well tolerated. Polycythemia vera and essential thrombocythemia are associated with considerable symptom burden. These chronic myeloproliferative neoplasms also are associated with a heightened risk for thrombosis and progression to myelofibrosis.

JAK2 inhibitors, hydroxyurea and interferon are commonly used to treat these conditions; however, hematopoietic stem cell-depleting therapies may offer an alternative option to improve outcomes.

MDM2, a negative regulator of P53, often is overexpressed in CD34-positive, p53 wild-type myeloproliferative neoplasm cells.

Learn more

View Video

Remembering Robert “Bob” Rosen

By Ann Brazeau, CEO, MPN Advocacy and Education International

In 2005, I met with the MPN Research Foundation for a potential job opportunity. Chairman Bob Rosen, Barbara Van Husen, President, and another Board member conducted the invigorating interview. The JAK2 Gene mutation had just been discovered and the energy and enthusiasm in the room was palpable. I was intrigued to say the least. A few months later I began my career there as Associate Director.

As Bob and I learned each other’s work habits and styles, we eventually hit a stride that took the Foundation to new and rewarding places. On any given day, conversations centered on MPN science, fundraising strategies, children, and of course, how we cooked our chicken the night before.

I remember the early days at the office on the river. The logo on the front door said Bridge Development, and I always thought my job was a bridge to another calling. I loved the absolute freedom to be creative, launch a project, or find new ways to increase visibility. Bob never refused to hear me out, look at the facts and inevitably say, “Go for it.” Our travels over the years to meet with donors and other potential partners always ended with a story to add to a growing list for a laugh or two later. I still laugh when I think about meetings he would request with me and Barbara, and we’d sit baffled that no one could quite remember why we were meeting.

We always used the expression, “The earth was moving under our feet.” That has certainly continued to be the case at the Foundation and in the greater MPN Community. Every day offered new hopes and new challenges and none were too mighty for a small group of dedicated people eager to get the job done.

Bob’s legacy will forever live on in the MPN Community. From the innovative, cutting edge, funded science he blessed, to the individual lives he touched, like mine. I would not be where I am without the years of experience at the Foundation. Bob could be fatherly when you needed it, and a big brother. Mostly, he was courageous, hard working, and unwavering in his pursuit for answers to MPN mysteries. Despite his own health issues, Bob always maintained his sense of humor. He will be greatly missed.

Click here to make a donation in his name