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.…
Early diagnosis of myeloma relies on primary care clinicians being able to accurately suspect, test and refer patients with suspected myeloma. It is important that GPs are able to distinguish those patients that require urgent investigation in secondary care versus those that likely have lower risk MGUS and so can be monitored in primary care or via discussion…
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.…
These updated guidelines, produced by the British Committee for Standards in Haematology (BCSH) and the UK Myeloma Forum, summarise a national consensus of the haematological community involved in the diagnosis and management of myeloma patients. They should be read in conjunction with the BCSH Guidelines on the supportive care of myeloma patients. Bird et al.…
