Ten key facts about myeloma
Myeloma is an incurable blood cancer that affects more than 24,000 people in the UK.
It is a complex and very individual cancer, that is difficult to diagnose and has a high symptom burden.
As a less common cancer, accounting for 1.6% of new cancer cases every year, some healthcare professionals working outside of haematology might not know a lot about it.
Here are 10 key facts about myeloma we feel every healthcare professional should know to ensure all myeloma patients get the best possible care and support.
- Myeloma is a blood cancer that occurs in the bones
Myeloma is caused by abnormal plasma cells in the bone marrow that proliferate uncontrollably and secrete high levels of non-functional immunoglobulins (paraproteins or monoclonal protein). As the myeloma cells multiply and spread throughout the bone marrow, they weaken the bones and inhibit normal blood cell production.
- It has some of the longest delays to diagnosis of any cancer
1 in 4 myeloma patients wait for more than 10 months before getting the right diagnosis and a third are diagnosed through an emergency route. The symptoms and signs of myeloma are vague and non-specific. They commonly include pain, fatigue and recurring infections which can be dismissed as old age or stress-related rather than something serious. This makes it difficult to suspect.
- There are two main precursor conditions
Patients with active myeloma will, at some stage, have passed through two earlier phases of disease, monoclonal gammopathy of undetermined significance (MGUS) and smouldering myeloma. In both MGUS and smouldering myeloma, a paraprotein is present and there is evidence of proliferation of clonal plasma cells in the bone marrow, patients usually show no symptoms.
- It is a relapsing and remitting cancer
While myeloma is treatable in most cases, it is incurable. Treatments are given to achieve remission, slow progression and manage symptoms. Even after successful treatment, the myeloma will come back. Most patients relapse multiple times and with every relapse, the myeloma gets more resistant to treatment and more likely to cause severe complications.
- Myeloma has a major impact on emotional and mental health
Every myeloma patient is different and there is no way to accurately predict how long remission will last. Some patients relapse for the first time within a year of treatment and others don’t relapse for years. Living with this uncertainty is challenging for patients, their friends and family. Every new pain or quarterly blood test can cause anxiety. Healthcare professionals should make sure myeloma patients and their families are aware of local psychological support services including those specifically for cancer patients.
- Myeloma causes long-term immunosuppression
Myeloma patients, even those in remission, are immunosuppressed. This is because myeloma reduces and/or disrupts normal immune function. Immunosuppression is further increased in patients who have active myeloma and are undergoing treatment. This means all myeloma patients are considered clinically extremely vulnerable to COVID-19 and are eligible for COVID-19 treatments. Patients are also more likely to get cold sores, urinary infections, shingles, the flu and pneumonia. They may need additional vaccinations or supportive treatment to manage recurring infections.
- Myeloma can cause long-term pain and mobility issues
Approximately 90% of patients have myeloma bone disease at some point during the course of their myeloma. It is the most common and often most debilitating feature of myeloma. As myeloma develops it causes osteopenia and lytic lesions which weaken bones. This can result in pain and pathological fractures including vertebral fractures. There are no treatments that repair the bone damage caused by myeloma, but supportive treatments or surgical interventions can be used to limit further damage, reduce pain and improve mobility. Patients often need support from other teams such as palliative care and physiotherapy, to help manage pain and mobility issues.
- Myeloma can cause renal problems
Myeloma can affect the kidney for a variety of reasons. The paraproteins produced by myeloma cells can block the renal tubules and damage the kidney. Other complications of myeloma, such as dehydration and hypercalcaemia also cause or contribute to myeloma kidney disease. Renal problems can be present at diagnosis or develop at relapse. Myeloma kidney disease can be reversed by myeloma treatment, however, in about 10% of patients, ongoing dialysis is needed.
- Patients aren’t always aware of general cancer support services in their area or hospital
Patients are often managed through haematology rather the oncology department. Their regular hospital appointments may be in a completely different part of the hospital. This can mean patients are less aware of the support services available to them as a cancer patient (e.g. Macmillan Cancer Support). Ensuring myeloma patients have access to their Clinical Nurse Specialist to be informed about support services relevant to their holistic needs is key.
- Patient care needs to be coordinated and managed by multiple specialists
Due to the wide-ranging effects of myeloma and its treatments patients are often managed by a number of specialists and attend different clinics and departments... This can include renal teams, orthopaedic teams and pain teams. Well-connected multidisciplinary teams and coordinated care can make a huge difference to the patient experience.
Representatives from Myeloma UK will have a stand at Oncology Professional Care (24-25 May), with more information about our resources and services so come visit us if you want to find out more.
If you can’t wait until then you can visit the Myeloma UK website and check out the comprehensive library of Patient and family resources. You can also find resources for healthcare professionals on the Myeloma Academy website. These include early diagnosis resources for healthcare professionals, tools and guidelines and the RCPath accredited Myeloma Nurse Learning Programme.