Helping patients reclaim a life of possibility
Zvika’s journey with myeloma began sixteen years ago with monoclonal gammopathy of undetermined significance (MGUS). Over time, it progressed to smouldering myeloma, and eventually to myeloma. He’s experienced a wide variety of treatments from clinical trials to a stem cell transplant and emerged with unexpected insights about what truly matters. The internet doesn’t tell…
When Kayleigh’s husband was diagnosed with myeloma in October 2020, everything changed overnight. The couple are from Basingstoke, UK, about an hour from London. They both worked together in a shopping centre, meaning they are on their feet all day interacting with the general public. Martin’s symptoms began as a bad back—something Kayleigh initially…
Maria is Greek-Australian and moved from Sydney to London with her adult daughter. A former research centre director, she had always lived an active, independent life. Three years ago, at the age of 64, Maria began experiencing lower back pain. It wasn’t until she went on holiday and was forced to return home in a…
Sandra, 50, lives in Belgrade, Serbia. She’s a mother to two teenagers and worked as an interpreter until recently. “I worked long hours,” she recalls. “Sometimes ten, twelve hours on my computer. Sometimes sleepless nights.” Listening to your body: the diagnosis journey At 48, Sandra developed fatigue, headaches, and anaemia. Like many women approaching fifty,…
More than 65 per cent of people living with an oncohaematological disease experience a deterioration in their employment and financial situation. This is one of the key findings of a report developed and presented by AELCLÉS, one of the Spanish members of Myeloma Patients Europe (MPE). According to the report, over 65 per cent of…
On 13–14 December in Warsaw, the Carita Foundation hosted its Hemato-Oncology Patient Forum, bringing together 150 participants including patients, clinicians, pharmaceutical representatives and volunteers. The event marked the 15th anniversary of the Carita Foundation and the 35th anniversary of the International Myeloma Foundation (IMF), which co-organised the Forum alongside MPE. The programme featured international experts and…
Last week Myeloma Patients Europe (MPE) submitted a response to the European Medicines Agency (EMA) open consultation on their “Reflection paper on patient experience data (PED)”. PED refers to data from patients that includes their perspectives, preferences and experiences with different aspects of their disease and treatments, such as quality of life and risk tolerability,…
Myeloma patients may receive many different treatments throughout their care. Patients’ real-world experiences of treatments tell us how treatments work in everyday life. Myeloma Patients Europe (MPE) wants to hear from myeloma patients about their experiences with some particular treatments: Bispecific antibodies (such as teclistamab or elranatamab) CAR T-cell therapy (such as cilta-cel or ide-cel) Antibody–drug conjugates (such as…