Myeloma UK funded research recently published in Leukemia shows that acquisition of new copy number aberrations is associated with relapse and therefore strongly supports the need for repeated molecular analysis at relapse. Chromosomal changes like copy number aberrations (structural amplifications, gains, or deletions) are a feature of myeloma. However, the relationship between copy number aberrations…
In the last couple of months, Myeloma UK has received two professional accreditations for their patient services. In November, the Myeloma Information Specialist Team received the Helplines Standard accreditation from The Helplines Partnership for the sixteenth year running. The Helplines Standard is a nationally recognized quality standard which defines and recognizes best practice in helpline…
Results from a phase III clinical trial (BOSTON) evaluating selinexor (Xpovio®) in combination with bortezomib (Velcade®) and dexamethasone for the treatment of relapsed or refractory myeloma patients have been published in the Lancet. The data provide evidence to support the use of selinexor for the treatment of relapsed or refractory myeloma patients who had received…
Myeloma UK has initiated a project to analyse the results of the England 2018 National Cancer Patient Experience Survey to better understand the myeloma patient experience. The National Cancer Patient Experience Survey provides a snapshot of patients’ experience of NHS care, from the information they receive to how well they feel their care is delivered.…
The year so far has been particularly busy for the myeloma access pipeline with four new myeloma treatments being appraised by both drug approval bodies, the National Institute for Healthcare Excellence (NICE) and the Scottish Medicines Consortium (SMC). There is also a new treatment for patients with AL Amyloidosis which has begun the appraisal process…
Myeloma UK have developed a series of Digital Infoday Sessions to continue providing information and support to patients following the cancellation of our usual Infoday events programme. The online events take place in a variety of formats, each lasting one hour. This includes panel discussions, Q & A sessions and presentations each centred around a…
Myeloma UK are passionate about ensuring patients have access to the treatments that are right for them. As a result, one of the aims of a recent project in our Health Services Research Programme was to understand how myeloma patients choose between different treatment options and identify what treatment attributes are most important to them.…
Following the cancellation of the British Society for Haematology 60th Annual Scientific Meeting, due to take place this week, the British Journal of Haematology have released all accepted abstracts as a supplement to the most recent issue. You can access the abstract list here. Our two abstracts, which outline our Clinical Service Excellence Programme and…
All myeloma patients have been advised to shield for 12 weeks to protect themselves from COVID-19. At Myeloma UK, we recognise this may cause psychological and emotional stress for many patients and their families and those with related conditions. Our Myeloma Infoline (0800 980 3332, UK or 1800 937 773, Ireland) and Ask the Nurse…
During the COVID-19 pandemic, healthcare professionals looking after myeloma patients face important and difficult decisions about the best way to treat their patients, whilst minimising their risk of infection. Several myeloma specialists have been sharing their experience as they work together to consider the safest and most effective ways to manage this vulnerable group of patients. Here we have compiled a short list of informative webinars, podcasts and articles to keep…
