This online forum – Symptom Management – featured talks from: Claire Woodley, Advanced Nurse Practitioner, Guy’s & St Thomas’ Hospital (GSTT) and Lauren Urwin, Specialist Occupational Therapist, GSTT, and Rachael George, Physiotherapist, GSTT. Programme Welcome from Nona Baker, co-chair MPN Voice, and Prof Claire Harrison, GSTT Symptom overview and tracking – ANP Claire Woodley Focus…
This was the first in-person forum MPN Voice has held since the end of 2019, it was very well attended by MPN patients, with their families and friends, from across Ireland, who were all extremely pleased to meet-up once again in-person, to talk to other people with MPNs and to hear the presentations given by…
Antibody and antiviral treatments for people with blood cancer (updated 22 April 2022) People with blood cancer, which does include people with a MPN (who are taking medication for their MPN – aspirin alone does not count) can now access the latest covid treatments after a positive lateral flow test, rather than having to wait for…
We have some important and very welcome news to share with you about a new drug for myelofibrosis patients. After a long and complicated appraisal process, the Scottish Medicines Association (SMC) has decided that fedratinib is to be made available to NHS Scotland. The drug, to be distributed under the name Inrebic, is the first…
As of 21 February 2022 the JCVI recommends that people aged 12 and above who have blood cancer – MPN – should have five vaccine doses (three primary doses and two boosters). Blood cancer and immunosuppression Most people who are living with blood cancer have a weakened immune system, which makes it harder to fight…
MPN Voice is producing a recipe book designed by and for MPN patients and we need your help! Background Diet is so important in contributing to a healthy lifestyle – we all know that we are what we eat. However, emerging research is looking at the relationship between nutrition and MPNs, and the potential benefits…
Breaking News – Another Treatment Option Approved for MPNs CTI BioPharma Announces FDA Accelerated Approval of VONJO™ (pacritinib) for the Treatment of Adult Patients with Myelofibrosis and Thrombocytopenia Pacritinib a novel JAK2/FLT3 and IRAK inhibitor has been approved for MF patients with low platelets and we hope it will be widely available soon with hopefully…
Have you had COVID 19 infection? We need to find out more about how long covid affects people like you – can you help us? We would like to share with you an opportunity to take part in a study to investigate the impact of COVID-19 infection in people with myeloid blood cancers. What is…
The MOMENTUM study is a global, randomized, double-blind clinical trial evaluating momelotinib (MMB) in myelofibrosis patients who are symptomatic and anaemic and previously treated with an approved JAK inhibitor. The trial met all of its primary and secondary endpoints, achieving statistically significant benefit on symptoms, anaemia and splenic size. Professor Claire Harrison, Guy’s & St…
We have some important and very welcome news to share with you about a new drug for myelofibrosis patients. After a long and complicated appraisal process, the National Institute for Clinical Excellence (NICE) has decided that fedratinib is to be made available to the NHS. The drug, to be distributed under the name Inrebic, is…