Covid19: Impact Survey

an international online survey to determine the impact of the COVID-19 pandemic on caregivers and patients with myeloma and precancerous conditions such as MGUS and MBL.

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Myeloma Information

Myeloma (also known as Multiple Myeloma) is a cancer of the blood where there is an uncontrolled increase in blood plasma cells (plasma cells are white blood cells that produce large volumes of antibodies. These antibodies help protect against bacteria and viruses).

Those with myeloma can experience a variety of symptoms including bone pain, extreme tiredness, elevated blood calcium, kidney problems and reduced blood cell levels resulting in anaemia, an increased risk of infection and bleeding.

Although myeloma remains incurable, there have been huge advances in treatments over the past two decades, which has resulted in improved prognosis for patients.

The treatments for myeloma are continuous and long-term and as a result many side effects can occur, especially among older people who may also have other age-related illnesses.

Myeloma can be difficult to diagnose because the symptoms are often vague. If myeloma is suspected many investigations need to be carried out including: a bone marrow biopsy (a small sample of marrow from the bone), bone x-rays and bone scans and many different types of blood tests.

The bone marrow biopsy is examined in the laboratory for marrow cell activity and cell chromosomes. Abnormalities detected in the cell chromosomes in the bone marrow provide important information on how advanced a person’s myeloma is and consequently, what treatment options are best.

There are a variety of treatment options used in the management of myeloma. The treatment choice is individualised to the patient’s disease, performance status (how active and physically well a person is) and how suitable they are for a transplant. Treatment options are also decided based on International
guidelines in the treatment of myeloma, national drug licensing, and the patient’s choice.

Newer drugs introduced over the past two decades have resulted in extended survival rates for myeloma patients. These drugs include a group known as immunomodulatory drugs (IMIDs) (examples of these drugs are thalidomide, lenalidomide and pomalidomide) and another group known as proteasome inhibitors (examples of these drugs are bortezomib and carfilzomib). Drug combinations are mostly used in the treatment of myeloma and all of these drug combinations include a steroid drug.

Haematopoietic stem cell transplantation is also a treatment option for myeloma patients. Autologous stem cell transplantation (ASCT) is where the patient’s own stem cells (that have been previously collected) are given back to the patient. ASCT provides prolonged survival but does not provide a cure.

If a patient would benefit from ASCT, the decision is made early following diagnosis of myeloma. Allogenic transplantation (from a healthy donor to the patient) remains a limited option in the treatment of myeloma and is not routinely considered, because it has been associated with poor results. The decision to undergo ASCT is based on a patient’s age, performance status (how active and physically well they are), other existing illness and patient preference.

How long myeloma patients should remain on treatment is uncertain, and decisions are reached based on evidence-based guidelines and each patient’s needs, such as their response and tolerance to treatments.

Myeloma is a complicated disease requiring patients to undergo numerous tests and treatments over long time periods. Patients often feel isolated because of the ‘unknown’ nature of this illness (many people have never heard of myeloma and many think that myeloma is ‘melanoma’).

Myeloma is an individual cancer affecting patients and carers in many physical, emotional and social ways. Each patient with myeloma therefore needs to be provided with individually tailored information on their disease and their treatment.

Additional Myeloma Resources/Links


Meet the Team behind Myeloma Ireland

Patrick Hayden

Patrick Hayden Chair

Mary Kelly

Mary Kelly Vice-Chair

Maura Dowling

Maura Dowling Secretary

Liam McManuse

Liam McManuse Treasurer

Anne Fitzgerald

Anne Fitzgerald Assistant Treasurer

Peter O’Gorman

Peter O’Gorman

Joe O’Brien

Joe O’Brien

John Quinn

Mervyn Byrne

Helen Brennan