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Listening to the myeloma patient voice is difficult – but it still needs to be done

For Multiple myeloma and Myeloma

In an article published by Pharmaphorum written by Amanda Burrell, she speaks to Simon Ridley, director of research at Myeloma UK, on the role of the patient in influencing the healthcare community.

The shift towards including the 'patient voice' is evident in many conditions and by many organisations such as the NHS, NICE and the pharmaceutical industry.

Engaging with patients provides these groups with a view that can be factored into many facets of care, including the identification of important issues that affect patients' lives over and above the standard care models.

About Multiple Myeloma
Multiple myeloma, also known as myeloma, is a type of bone marrow cancer. Bone marrow is the spongy tissue at the centre of some bones that produces the body's blood cells.

It's called multiple myeloma as the cancer often affects several areas of the body, such as the spine, skull, pelvis and ribs.

It's not known exactly what causes multiple myeloma. However, there is a close link between multiple myeloma and a condition called monoclonal gammopathy of unknown significance (MGUS).

Causes of multiple myeloma
MGUS is where there is an excess of protein molecules, called immunoglobulins, in your blood. This doesn't cause any symptoms and doesn't need treatment.

Every year, around 1 in every 100 people with MGUS go on to develop multiple myeloma. There is no known way to delay or prevent this, so people with MGUS will have regular tests to check for cancer.

Multiple myeloma is also more common in:
  • men
  • adults over 60 – most cases are diagnosed at around the age of 70, and cases affecting people under the age of 40 are rare
  • black people – multiple myeloma is about twice as common in black populations than white and Asian populations
  • people with a family history of MGUS or multiple myeloma
Treatment for multiple myeloma
Treatment can often help to control the condition for several years, but most cases of multiple myeloma can't be cured. Research is ongoing to try to find new treatments.

Treatment for multiple myeloma usually includes:
  • anti-myeloma medicines to destroy the myeloma cells or control the cancer when it comes back (relapses)
  • medicines and procedures to prevent and treat problems caused by myeloma – such as bone pain, fractures and anaemia
As part of your treatment, you may be asked if you want to take part in a clinical trial to help researchers develop better treatments for multiple myeloma.

Sources
Pharmaphorum
NHS website for multiple myeloma
Contains public sector information licensed under the Open Government Licence v3.0.
Accessed 31/03/19
Links available in full article

Link to myeloma article in Pharmaphorum

Reporting of suspected adverse reactions

Reporting suspected adverse reactions (side effects) after authorisation of the medicinal product is important. It allows continued monitoring of the benefit/risk balance of the medicinal product. Healthcare professionals or patients are asked to report any suspected adverse reactions via the Yellow Card Scheme at yellowcard.mhra.gov.uk or search for MHRA Yellow Card in the Google Play or Apple App Store.


Disclaimer: This site is designed to offer information for general educational purposes only. The health information furnished on this site and the interactive responses are not intended to be professional advice and are not intended to replace personal consultation with a qualified physician, pharmacist, or other healthcare professional. We cannot provide individual medical advice. You must always seek the advice of a professional for questions related to a disease, disease symptoms, and appropriate therapeutic treatments.


About Multiple myeloma About Myeloma