Arthritis Medicine May Move on to PV Treatment Scene

Can a drug used to treat arthritis also be a way to treat polycythemia vera (PV), and save patients with the blood cancer money?

Researchers at the University of Sheffield in England believe that the chemotherapy agent and immune system suppressant, methotrexate (MTX), would benefit tens of thousands of people affected by the disease.

The reason an arthritis treatment may work to treat the rare cancer type is because they both have connections to the Janus kinase/signal transducers and activators of transcription (JAK/STAT) pathway. In patients with arthritis, it sparks up inflammation and an autoimmune response, and for PV, mutations in the pathway account for the majority of diagnoses.

Read more

Registration-Atlanta MPN Patient Program

Atlanta MPN Patient Education Program

Thank you for registering for the Women & MPN Patient/Caregiver Education Program on October 26, 2017 in Atlanta, GA.  We look forward to seeing you.  To complete the registration you can use the link below to pay the registration fee.  Follow the brief instructions to link to the PayPal account.

NOTE: You do not need a PayPal account to make this payment, you can select the “Pay with Debit or Credit Card” option.

 If you are registering for you and a guest or 2 guests please use “Select Registration Option” from the drop down menu provided on the registration page

Select Registration Option

Mayo Clinic and ASU Seeking MPN Patients for Pilot study in Meditation

Mediation Flyer

During 2015 and 2016, Arizona State University, in partnership with the Mayo Clinic and Udaya Entertainment, successfully conducted two 12-week, home-based, online-streamed yoga interventions in MPN patients. Through these studies, we demonstrated both the feasibility of online yoga in MPN patients as well as the ability for yoga to improve MPN patient symptom burden (e.g., fatigue, anxiety, depression, sleep quality, pain) and quality of life. The data generated from these studies led to the submission of a large effectiveness trial to the National Institutes of Health, National Cancer Institute, which is currently in review. The success of our online yoga studies combined with an interest in meditation amongst MPN patients has led to the expansion of our non-pharmacological research umbrella to include an examination of the effects of meditation on MPN patient symptom burden and quality of life. We are hoping you could share the below information. Note that we don’t mention meditation below as we would like all potential participants to try the intervention and we will determine their perceptions about it afterwards. Here is the information to share:

We are currently conducting a study that explores the practicality and the impact of different strategies (i.e., mobile app, education) to reduce fatigue, MPN-symptom burden and improve quality of life. We are seeking MPN cancer patients, ages 18 and up, to participate. Participants must be willing to be randomized to one of four different groups that includes a combination of materials/resources and/or two different smartphone-based applications to help manage fatigue and stress associated with MPN. Participants will be asked to complete questionnaires at three different time points and wear a Fitbit device throughout the study, which they will keep at the end of the study in gratitude for their participation. This study, much like our previous online health studies, will include a limited number of MPN patients (N=90). The results of this study will provide the data needed to submit a large effectiveness trial to the National Institutes of Health, National Cancer Institute. This research will be conducted through a partnership between Mayo Clinic and Arizona State University (ASU) and may help advance our understanding on the potential role of non-pharmacological complementary approaches to symptom management in MPN patients.

If you are interested in learning more about or joining this study, please contact us by phone (602-827-2314), email or visit this link to complete eligibility survey: (case sensitive)


CTI BioPharma Announces First Patient Enrolled in Phase 2 Trial of Pacritinib in Patients with Myelofibrosis who have Thrombocytopenia and who have been Previously Treated with Ruxolitinib

SEATTLE, Aug. 1, 2017 /PRNewswire/ — CTI BioPharma Corp. (NASDAQ and MTA: CTIC) today announced that the first patient has been enrolled in PAC203, a Phase 2 clinical trial of pacritinib in patients with primary myelofibrosis who have failed prior ruxolitinib therapy. PAC203 is designed to evaluate the dose response relationship for safety and efficacy (spleen volume reduction at 12 and 24 weeks) of three dose regimens: 100 mg once-daily, 100 mg twice-daily (BID) and 200 mg BID. The 200 mg BID dose regimen was used in the Phase 3 PERSIST-2 trial of pacritinib in patients with myelofibrosis. The trial is expected to enroll up to approximately 105 patients.

Read more

Everyone’s MPN Is Different: What You Should Know About Genetic Mutations

Should you get a genetic test? Myeloproliferative neoplasm (MPN) experts, Dr. Alison Moliterno and Dr. Stephen Oh, help patients understand the driver mutations associated with MPNs such as JAK2V617F, calreticulin (CALR), MPL and others. The experts explain why you should know your genetic mutations and how this knowledge can impact your care and treatment. The panel also discusses if MPNs are hereditary and what causes mutations. You’ll also hear from Marsha, a patient advocate, as she shares her own story.

Read more

Registration-Women & MPN

View Flyer

3rd Annual Women & MPN Patient Education Program

Thank you for registering for the Women & MPN Patient/Caregiver Education Program on September 29, 2017 in Los Angeles, CA.  We look forward to seeing you.  To complete the registration you can use the link below to pay the registration fee.  Follow the brief instructions to link to the PayPal account.

NOTE: You do not need a PayPal account to make this payment, you can select the “Pay with Debit or Credit Card” option.

 If you are registering for you and a guest or 2 guests please use “Select Registration Option” from the drop down menu provided on the registration page

Select Registration Option

Agent Orange’s Possible Link to Rare Cancer Type Sparks Advocacy Efforts

Exposure to Agent Orange — a toxic chemical combination used for deforestation during the Vietnam War — may be the cause of myeloproliferative neoplasms (MPNs) for hundreds of war veterans, according to MPN Advocacy and Education International.

“There was evidence very early that its use to exfoliate the jungle in Vietnam and other parts of the territory was having a grave impact on the health and safety of those exposed, including civilians,” Ann Brazeau, CEO of MPN Advocacy Network and Education International said in an interview with CURE.

Read more

MPNs: Translating New Discoveries Into Better Outcomes, Better Quality of Life

Despite the identification of JAK mutations and the development of targeted inhibitors, there remain significant unmet needs for patients with myeloproliferative neoplasms. Identification of the myeloproliferative neoplasm populations not currently benefiting from JAK inhibitor therapy highlights the therapeutic deficits still present in this heterogeneous stem cell malignancy. While JAK inhibition has provided significant benefits for patients with intermediate-2 or high-risk myelofibrosis and in patients with polycythemia vera in the second-line setting, JAK inhibitor monotherapy is not approved and not appropriate for all patients with myeloproliferative neoplasms. Continued investigation into additional JAK inhibitors, combination therapy, and novel pathway therapeutics remains key to improving outcomes for all patients with myeloproliferative neoplasms. While therapeutic advances in the JAK inhibitor arena or involving alternative pathways are crucial to improving outcomes in myeloproliferative neoplasms, it is also important to reconsider the role of constitutional symptoms in affected patients as an indication for treatment with agents, such as JAK inhibitors, that can mitigate these debilitating symptoms. In this review, we demonstrate the evolving landscape of clinical investigations that address the important therapeutic needs of patients with myeloproliferative neoplasms.


Myeloproliferative neoplasms are a group of myeloid malignancies caused by a hematopoietic stem cell clonal proliferation, the main result of which is primarily either erythrocytosis in polycythemia vera, thrombocytosis in essential thrombocythemia, or progressive cytopenias and splenomegaly in primary myelofibrosis.[1] This group of neoplasms is characterized by a lack of the BCR-ABL fusion protein[2] that is associated with chronic myelogenous leukemia; instead, they are identified with one of three mutually exclusive mutations: JAK2 (Figure),[3] CALR,[4] or MPL.[5] The identification of these mutations has led, through the subsequent development of JAK inhibitors, to changes in diagnostic paradigms,[6,7] prognostication,[8,9] and therapeutic interventions.

Read more

Participants Needed for Patient-Centered MF Study

Dear MPN Community:

Re: Additional MF Focused QoL study focused around Stem Cell Transplant

We would like to invite you to participate in the steering committee for a new study in which we seek funding from the federal Patient-Centered Outcomes Research Institute (PCORI).  This effort is separate (i.e. different PCORI funding mechanism and different trial), but complementary to the efforts of Ruben Mesa and his team focus focusing on alleviating MPN Fatigue in a randomized clinical trial.   This parallel effort includes representatives from the National Marrow Donor Program, and the Center for International Blood and Marrow transplant registry, and MPN investigators focused on stem cell transplant.

Our goal in this study is to comprehensively understand the quality of life in patients who have advanced myelofibrosis to help inform patients and caregivers regarding different therapeutic options they have.  As many patients consider different therapeutic options for advanced myelofibrosis, including clinical trials, standard supportive care, or allogeneic stem cell transplant, there is very little to guide them about the relative impact these options will have on their quality of life.  Although, as providers, we can give estimates of survival, we cannot advise how that survival will look.  In a disease such as myelofibrosis, where symptoms play a major role in the disease, what the patient experiences if often unknown.

We would like to understand this experience.  We plan on doing this through several efforts.  First, to guide our approach, we would like to survey patients regarding their feelings on transplant (link below).  This will explore what factors are important to them when considering a transplant, and why they have or have not considered this therapeutic option.  Using this information, we then will design a clinical trial that will evaluate the trajectory of symptoms and quality of life in patients with myelofibrosis.  This will help identify which patients are likely to benefit from transplant, and who may be likely to benefit from standard supportive care or clinical trials.  We may also identify different areas of concern that could be addressed by interventions or policy change.

The input from the MPN community at large will be critical in designing a subsequent trial to obtain the most relevant information to help patients.  We look forward to your insight and suggestions as they will be of tremendous help in designing the most informative trial we can.

Thank you in advance for your time and consideration.

Here is the link to the live survey:


Jeanne Palmer, MD

Director of MPN Transplant – Mayo Clinic in Arizona


Ruben A. Mesa, MD Director, UT Health San Antonio Cancer Center

Novartis Survey Reveals Burden of MPNs on Patients’ Daily Activity and Ability to Work, Calling for More Proactive Symptom Assessment

  • Findings show more than a quarter of myeloproliferative neoplasm (MPN) patients are managed with watchful waiting at diagnosis, despite one in five (22%) reporting moderate to high symptom burden[1]
  • Survey highlights potential disconnect between perceived symptom severity among UK patients and clinicians[2]
  • Data presented at 22nd Congress of the European Hematology Association (EHA) in Madrid, Spain

Novartis today announced new data from the MPN Landmark survey, with clinicians reporting more than a quarter of their MPN patients are managed with watchful waiting at diagnosis[1]. Although most patients in the survey reported low symptom burden, more than one in five (22%) reported moderate to high burden, highlighting the need for proactive and standardised symptom assessment at diagnosis and during the course of treatment[1].

Read more