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HWN Suggests

A blood cancer diagnosis helped me find true happiness

December 2017, and the Christmas party season is in full flow. Everywhere I look are scenes from some hilariously awful Dickens pastiche: revellers squeezed into warm pubs; joyful chatter spilling out on to the street; the sound of carols and the scent of mulled wine in the air. It’s as if I am peering in at it all through frosted glass, wishing my own Christmas could be as carefree.

Instead, I have spent a morning turned on my side on a hospital bed while a nervous-looking young doctor works up a sweat attempting to force a long needle into my hipbone. He needs it to go deep enough that he can suck out some of the marrow inside, but my tough bones are making life difficult for him.

I…

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Featured

 Drug Could Be Repurposed To Treat Deadly Blood Cancer

A drug used to treat certain advanced breast cancers may offer a new treatment option for a deadly blood cancer known as myelofibrosis, new research from UVA Cancer Center suggests. The drug, palbociclib, may be able to prevent the scarring of bone marrow that existing treatments for myelofibrosis cannot.

 Nobody Wants Cancer. But a ‘Big C’ Label Has Surprising Upsides.

Classifying a rare blood disorder as a cancer opened new doors for disease investigation, treatment and hope for a cure.

Articles of Interest

Discovery Could Boost New Therapies for Myeloproliferative Neoplasms

Blood cancers called myeloproliferative neoplasms (MPNs) are driven by mutations in a gene called JAK2. Current drugs that inhibit the protein made by mutated JAK2 don’t work as well as initially hoped. A new compound that targets this protein when it is in an inactive structural state appears to be more effective and less toxic, raising hopes that this will lead to better drugs for MPNs.

The history of myeloproliferative disorders: before and after Dameshek

In 1951, William Dameshek described the concept of ‘myeloproliferative disorders (MPDs)’ by grouping together chronic myelogenous leukemia (CML), polycythemia vera (PV), essential thrombocythemia (ET), primary myelofibrosis (PMF) and erythroleukemia; he reasoned that a self-perpetuating trilineage myeloproliferation underlined their pathogenesis.

Resources

Voices of MPNs

People impacted by rare, chronic blood cancers like myeloproliferative neoplasms (MPNs) may often lack access to the resources they need. Voices of MPN is an education and awareness initiative developed by Incyte Corporation. It was created to build upon an idea originated by advocacy groups in the MPN community. These groups believe that raising the voices of those with MPNs such as polycythemia vera (PV), essential thrombocythemia (ET), and myelofibrosis (MF) will shine a light on these rare diseases and encourage unity, connection, and support for people affected by MPNs.

MPN Advocacy and Education International

MPN Advocacy and Education International is dedicated to providing the knowledge, support, and resources patients will need as they adjust to living with an MPN through educational symposia in several cities each year, website access, free webcasts of each program, collateral materials, and direction to people, resources and other organizations that can help.

MPN AN

MPN Advocates Network was founded in 2013 by representatives from several MPN patient support groups as a way of creating and maintaining collaboration between these organisations and providing a platform for joint activity. MPN AN is a leading international organisation that operates for the benefit of MPN patients and acts independently of any other organization or company.

MPN Cancer Connection

Welcome to MPN Cancer Connection, where a brighter future for MPN patients shines on the horizon with opportunity, new treatments and resources for improved patient care.

MPN Education Foundation

The MPN Education Foundation is a 501(c)(3) non-profit organization run by volunteer MPN patients. It was incorporated in early 2004 at the urging of Dr. Ayalew Tefferi of Mayo Clinic (Rochester). The initial thrust of the Foundation was to continue the information/education/support goals of Dr. Harriet Gilbert through her MPN Research Center, which unfortunately died when she did in 2003. Our co-founder, Joyce Niblack(who passed in 2009), was a patient volunteer for Dr. Gilbert’s center and Editor of the MPD VOICE newsletter.

MPN Research Foundation

Partner. Advocate. Friend. At the MPN Research Foundation, we’re committed to standing with you in the fight against polycythemia vera (PV), essential thrombocythemia (ET) and myelofibrosis (MF) – the group of blood cancers collectively known as myeloproliferative neoplasms.

MPN Voice

MPN Voice offers a unique buddy system, supported by healthcare professionals, putting MPN patients in contact with other patients who can provide a sympathetic and supportive ear for when things are new, tough or confusing.

Myelofibrosis Research

Learn about research studies for a study medication targeting Myelofibrosis.

You and MPN

This educational activity has been designed to meet the educational needs of patients and caregivers affected by myeloproliferative neoplasms. This educational activity has been developed by MPN Research Foundation in collaboration with Mechanisms in Medicine Inc.

Jakafi

Jakafi is a prescription medicine used to treat adults with polycythemia vera who have already taken a medicine called hydroxyurea and it did not work well enough or they could not tolerate it. Jakafi is used to treat adults with certain types of myelofibrosis.

Walter and Eliza Hall Institute of Medical Research

Myeloproliferative disorders – sometimes called myeloproliferative neoplasms – are cancer-like diseases in which too many blood cells are produced in the bone marrow. This hinders the normal production of blood cells. The excess blood cells can also disrupt the function of the blood.

GARD

Chronic myeloproliferative disorders are a group of slow-growing blood cancers in which the bone marrow makes too many abnormal red blood cells, white blood cells, or platelets, which accumulate in the blood.