Patient Experience

Patient Experience

Introduction

Myeloma is a malignancy of plasma cells. These are the cells of the immune system that normally produce antibodies to protect us against infection. Patients with myeloma commonly present to their general practitioners with bone pain and fatigue. Laboratory tests to investigate these symptoms may reveal anaemia and damage to the kidneys. X-rays often show fractures.

Myeloma is commonly diagnosed in older people. The average age at diagnosis is about 70 years. The incidence of myeloma in Ireland is approximately five per 100,000 per year. There are, therefore, about 240 patients diagnosed with myeloma annually in Ireland.

The treatment of myeloma has greatly improved over the last 15 years, and it is considered one of the success stories of modern cancer treatment. New types of drugs have been developed, including proteasome inhibitors such as bortezomib (Velcade) and immune-modulatory drugs such as lenalidomide (Revlimid). These are now in widespread use in Ireland, allowing patients to live much longer with the disease. Many patients diagnosed this year can expect to live for a decade, if not longer.  

The Haematology Service at St James’s Hospital is the largest in Ireland and includes the National Adult Stem Cell Transplant Centre. There is a dedicated Myeloma Service, which looks after patients with a range of plasma cell disorders, including symptomatic myeloma, solitary plasmacytomas, light chain amyloidosis and monoclonal gammopathy of uncertain significance. There are currently over 70 patients with myeloma and amyloidosis attending our clinic.

The specialist myeloma clinical team consists of two consultants, Dr Patrick Hayden and Professor Paul Browne, a clinical lecturer and a clinical nurse specialist, Ms Emma Hayes. There is a dedicated myeloma multidisciplinary team meeting at which newly diagnosed patients are discussed and treatment options are reviewed.

There is one Myeloma Clinic each week and another for Myeloma Transplantation Counselling.

  • Myeloma is a malignancy of mature B-lymphocytes, or plasma cells. These are the cells of the immune system that normally produce antibodies to protect us against infection. When a plasma cell becomes malignant, it often continues to produce an antibody in excessive amounts. This antibody can be measured as a ‘paraprotein’ in the blood and is a useful indicator of the amount of disease within the body.

    The diagnosis of myeloma is made when an antibody-type protein is found in the blood or urine and a bone marrow biopsy reveals a large number of plasma cells. The term symptomatic myeloma is used when blood tests or X-rays reveal that the protein and cells are starting to damage the body. Sometimes, a patient may be anaemic, a sign that the normal cells in the bone marrow are not functioning properly. Occasionally, the kidneys are affected. Often, X-rays or special scans will show damage to the bones. Any of these changes indicate the need to start treatment.

  • There is a dedicated consultant-delivered Myeloma Service at St James’s Hospital.

    Diagnosis

    All patients referred with possible symptomatic myeloma will be seen within two weeks. General practitioners are welcome to call directly to discuss patients about whom they are concerned.

    Early investigations include laboratory tests, a bone marrow extraction and biopsy and a whole body MRI scan. Cytogenetic analysis (referring to the study of the structure and function of the cell) is performed at diagnosis in all patients. There is a dedicated myeloma multidisciplinary team meeting at which newly diagnosed patients are discussed and risk-modified treatment pathways are chosen.

    Most patients diagnosed with myeloma will not need to be admitted to hospital. All investigations and treatment can be done on a day-ward setting.

    Treatment

    Most treatment protocols consist of a combination of several drugs, which work together to kill myeloma cells. Some, such as corticosteroids or immunomodulatory drugs, are tablets that will be prescribed by your doctor and filled out at your own pharmacy. Others are given either intravenously (into the vein) or subcutaneously (injected into the skin) by specialist nursing staff on our day ward. Our clinical nurse specialist will be able to talk you through all of these issues.

    The first few months of treatment often involve weekly visits to the day ward and a monthly review with the consultant. Treatment is provided by experienced nursing staff on the Haematology Oncology Day Ward. Nurse-led clinics are held for both the administration of chemotherapy and of bone-strengthening agents such as Zometa. Patients attend the Myeloma Clinic on Thursday mornings for routine medical review.

    Younger patients who may be eligible for an autologous stem cell transplant (the transplant of their own healthy cells) can have a three-week admission to hospital. This does not happen at diagnosis, but is generally discussed as an option after four months of ‘induction’ chemotherapy. There is a dedicated Myeloma Transplant Counselling Clinic at which all relevant issues are discussed in detail so that patients can make an informed decision as to whether they wish to pursue this treatment.

    Those patients for whom autologous transplantation is deemed appropriate are admitted to Denis Burkitt Ward, the inpatient facility for the National Adult Stem Cell Transplant Centre. The centre performed 45 autologous transplants for myeloma in 2013.

  • We encourage patients to enroll in clinical trials and are supported by an active Clinical Trials Unit. This ensures that patients have early access to new treatments that may not yet be licensed for routine use.

  • Medical Staff

    • Dr Patrick Hayden, BA MD FRCPI FRCPath, Consultant Haematologist, with an interest in myeloma, stem cell transplantation and acute leukaemia.
    • Professor Paul Browne, MB FRCPI FRCPath, Consultant Haematologist, with an interest in myeloma, stem cell transplantation and acute leukaemia.

    Nursing Staff

    • Ms E. Hayes, Clinical Nurse Specialist in Myeloma.
    • Ms E. Higgins, Clinical Nurse Specialist in Myeloma.
  • The Irish Cancer Society funds a Daffodil Centre at St James’s Hospital. This is located beside Private One Ward on the ground floor of the main hospital near the concourse. The centre provides cancer information, support and advice in a hospital setting and is an extension of the society’s Cancer Information Service.

    International Myeloma Foundation

    Myeloma UK

    The Myeloma Beacon

    Multiple Myeloma Ireland

    Irish Cancer Society