Effect of MPN Diagnosis on Work, Employment Status

Many patients experience a negative impact on work productivity and employment status after a diagnosis of myeloproliferative neoplasm (MPN), according to a study published in BMC Cancer.

The clinical adverse effects of MPNs (eg, polycythemia vera [PV], essential thrombocytopenia [ET], myelofibrosis [MF]) are well known; risks for cardiovascular and thrombotic events and various other symptoms are increased. The impact of illness on the workplace and careers, however, have yet to be explored.

For this study, researchers sent the cross-sectional online survey “Living with MPNs” to patients with a myeloproliferative neoplasm. The survey consisted of approximately 100 questions related to MPN, focusing on factors such as diagnosis, symptoms, and changes in employment, work productivity, and daily activities. The Work Productivity and Activity Impairment Specific Health Problem questionnaire (WPAI-SHP) was used to evaluate the effects of MPN on work productivity and activity for currently employed respondents, and the MPN Symptom Assessment Form Total Symptom Score (MPN-SAF TSS) was used to measure symptom burden.

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Learn About MPN Study

Potential Combos With Ruxolitinib in Myelofibrosis

To date, the JAK inhibitor ruxolitinib (Jakafi) is the only FDA-approved therapy for the treatment of patients with myelofibrosis (MF); however, novel agents and combination regimens are in development to address some of the unmet needs in MF, including treating cases of anemia associated with MF and treatment with ruxolitinib, as well as increasing responses to the targeted therapy.

In an interview with Targeted Therapies in Oncology™ (TTO), at the meeting, Prithviraj Bose, MD, assistant professor, The University of Texas MD Anderson Cancer Center, discussed the findings of 2 combination trials with ruxolitinib to optimize outcomes for patients with MF.

TTO: What are the unmet needs that still exist in MF that you would like to see be resolved?

BOSE: Ruxolitinib is a very well-established choice for JAK1/2 inhibition, but we also have some limitations. It is great at shrinking the spleen and improving symptoms, and it extends overall survival [OS], but certain things don’t get that much better. For example, ruxolitinib causes anemia, which can make it hard for patients to stay on or go up to the optimal dose.

The unmet needs are (1) to have a drug that could circumvent the anemia with ruxolitinib, and maybe even the thrombocytopenia, so that patients can stay on ruxolitinib at an optimal dose for an extended period of time, and (2) the fact that ruxolitinib is not a cure. Even though it extends OS, MF is still not curable without allogeneic transplant. We need disease-modifying drugs, which, in combination with ruxolitinib, for example, will hopefully give us more biology-altering benefits.

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Prognostication in MF: Integrating genetics into routine practice

Dr. Gabriela Hobbs

One of the most exciting aspects of clinical research is translating lab-based discoveries into tests and treatments that can be used in daily clinical practice.

The last 2 decades have yielded an explosive amount of information about the genetics of hematologic malignancies, as well as targeted therapies based on this information Myeloproliferative neoplasms (MPNs) are no exception.

Dr. Hobbs will be joining us in Chicago for the 4th Annual Women & MPN Conference Learn More

Prior to the 2005 discovery of the JAK2 V617F mutation in most patients, MPNs were classified as diseases rather than neoplasms.

This semantic difference may seem trivial, but it has tremendous implications on how patients are cared for. It is quite different to tell a patient he or she has a “disorder” than it is to say the person has a malignant neoplasm.

Understanding that patients with MPNs have a genetic marker of disease was the springboard that led to the discovery of additional genetic mutations, primarily in calreticulin (CALR) and MPL among most patients without JAK2 mutations.Read more


PV Treatment Landscape and QOL Challenges


Dr. Jeanne Palmer, MD

While there is not a large number of treatments for patients with polycythemia vera (PV), there are currently regimens in the first- and second-line setting that work well for this population, says Jeanne M. Palmer, MD.

For example, long-term follow-up data from the phase III RESPONSE study showed that patients who responded to the JAK2 inhibitor ruxolitinib (Jakafi) as a second-line treatment maintained those responses for up to 4 years. At 208 weeks, 41 patients (37%) originally on the ruxolitinib arm remained on treatment compared with no patients on the control arm. Additionally, 70% of patients who had clinicohematologic (CLHM) response maintained that status. There were no new safety signals compared with the previous follow-up at 80 weeks.

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View Dr. Palmer’s Presentation @ San Antonio MPN Patient Program

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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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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