Under The Microscope: MPN News

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MPNRF Advancing Research

Exploring blood changes as hints to identify early progression

One of the impacts MPN Research Foundation (MPNRF) has on the global MPN community is the support of young investigators who often bring new ideas and approaches to the study of MPNs. That was true of Dr. Belinda Guo when she received her first funding from us in 2019, for a project still underway.

Her work now focuses on the progression of MPNs from a chronic condition to the more aggressive state of myelofibrosis. Specifically, the current MPNRF-funded project identifies easily detectable changes in the blood’s platelets that could signal a transformative change to a fibrotic state.

Belinda Guo, PhD

University of Western Australia

“It could be used to monitor patients and tell us if and when the disease may be progressing,” she explains.

The hope is that this type of regular monitoring would provide timely, accurate information for patients and their doctors to assess progression risk, and then earlier treatment to manage it. “This could also provide patients with some reassurance and give them back some control over their life,” she adds. Dr. Guo updates MPNRF on what they have learned from the project to date. Read more >

Living with MPNs: Patient Stories

Ignacio’s journey: Empowered patient to advocate

Ignacio Edenburg, Patient

MPNRF Patient Impact Council

Ignacio had been experiencing painful symptoms for two years. His blood counts were anything but normal. Yet, every doctor he went to, whether in an emergency or urgent care setting or a referral physician’s office, told him there was either nothing wrong or he was misdiagnosed.

He remembers the intense frustration well. “I kept asking them over and over. Why is it that my blood tests are coming out so wrong? My white blood cells are insane. And they kept saying, ‘Oh, it could be just any kind of infection. But don't worry about it,’ and they sent me home.”

His own research told him otherwise. He knew something was very wrong. So he decided to go to a specialist “to see if I’m crazy.” Ignacio and his wife went to the Cleveland Clinic to see a cardiologist. The doctor looked at his blood tests for the last 3 years and heard of his numb lips and tingling fingers, dizziness and horrific pain in his then totally purple toes. And his shortness of breath. “I felt like I couldn’t breathe,” Ignacio says.

“It took him 5 minutes. He told me: ‘Let me call somebody upstairs,’ and they sent me from there to the oncology department.” Read more >

MPN News & Resources

In case you missed it: 10-year view of CALR’s discovery

and how CALR impacted the MPN landscape

A historical perspective on the impact of CALR’s identification as a major mutation associated with MPNs recently published in Precision Medicine Online, titled “Years After Genetic Finding, Drugs Targeting CALR-Mutant Myeloproliferative Neoplasms Enter Trials.”

It highlights MPNRF’s role along a collaborative path of CALR discovery and insights that have led to its potential today as a target for immunotherapy and a therapeutic “vaccine-type” approach to treatment. An estimated 20-30% of essential thrombocythemia (ET) and primary myelofibrosis (MF) patients have a CALR mutation.

Find the full MPN Research Foundation white paper here.

Severe itching remains an MPN research challenge

This spring allergy season, if you suffer from the distraction and annoyance of itchy eyes or nose, imagine that intense itch across your entire body — every day of the year. That’s what many people living with polycythemia vera (PV) and other MPNs experience — severe, recurrent pruritus (itching) that becomes an urgent medical need.

A study in Sweden published in Hematologica late last year describes success with omalizumab, a humanized monoclonal immunoglobulin E antibody widely used for other indications since FDA approval in 2003. The investigators propose that it could be a valuable addition to the treatment arsenal for the management of refractory (resistant), chronic pruritus in MPNs.

Why is this finding important when interferons, ruxolitinib, hydroxyurea, and other MPN therapies often relieve even severe itching? Read more>

Medscape partners with MPNRF

How can MF patients better work with their care teams?

In a new educational series on myelofibrosis, people living with MF, their care partners, family and friends can learn more about “Working with Your Doctor and Healthcare Teams on a Treatment Plan for Myelofibrosis.” The goal is to better understand myelofibrosis and to help with routine and sometimes difficult conversations with doctors and others on a care team — throughout diagnosis and management of this chronic blood cancer.