On the occasion of Multiple Myeloma Awareness Month in March we spoke with Lisa Ferguson. She works as a Myeloma Specialist Nurse for the Oxford University Hospitals NHS Foundation Trust in the UK.

What is multiple myeloma?

Multiple myeloma, also referred to as MM or myeloma, is a type of blood cancer which arises from plasma cells in the bone marrow. It accounts for 15% of all blood cancers but only 2% of all cancers which is why a lot of people have never heard of it. It is more common in people over the age of 65 but can be diagnosed in people younger than this.

Plasma cells are involved in the immune system. They produce antibodies which help fight infection. In myeloma, the abnormal plasma cells in the bone marrow produce a large amount of a single type of antibody, known as paraprotein, which has no useful function. In most cases, paraprotein moves out of the bone marrow and into the blood; and it is often through the measurement of this paraprotein that myeloma is diagnosed and monitored.

Treatment is aimed at controlling the disease, relieving the complications and symptoms it causes, and extending and improving the quality of life. Myeloma is not currently curable but in most cases is very treatable, with a lot of effective treatments available. This means that even after successful treatment has provided a period of remission or stable disease, the myeloma will return (known as relapse). Myeloma is a very individual cancer in terms of how people experience complications, as well as how they respond to treatments, which can vary greatly.

For further information about myeloma including common symptoms and how it is diagnosed please click here.

What are the tasks of a Myeloma Clinical Nurse Specialist (CNS) and how does this differ from the role of an Advanced Nurse Practitioner (ANP)?

The tasks of a CNS are to:

• Provide physical & emotional support and advice regarding health concerns, and practical issues.
• Be the patients advocate.
• Promote health & wellbeing by providing education and information.
• Symptom control & management which can in turn reduce admissions.
• Co-ordinate care and be a liaison between different departments and teams involved in patient care; which in turn provides the patient with holistic care.
• Be a resource and support for patients and their carers/families.
• Service development.

The tasks of an ANP and CNS are fairly similar although an ANP has to have a Master in Nursing Practice and will be a non-medical prescriber who can physically assess and independently diagnose patients; however, you can become a non-medical prescriber without being an ANP. They will often run their own nurse-led clinics. That is not to say that nurse-led clinics cannot be set up and ran by a CNS.

What were the major breakthroughs in the treatment of multiple myeloma? What new treatments can be expected in the near future?

The introduction of myeloma-specific treatments such as bortezomib (a proteasome inhibitor) and thalidomide (an immunomodulatory imide drug (IMiD)) were important developments in the treatment of myeloma, as well as the later generations of thalidomide (lenalidomide & pomalidomide). More recently there has been the development of new proteasome inhibitors (PI) such as carfilzomib and ixazomib; and monoclonal antibodies daratumumab, isatuximab and belantamab.

We are also now using quadruplet induction therapy (4 medications) and the use of maintenance therapy post autologous stem cell transplant which is helping to increase length of remission.

Treatments that will be coming in the future include: potential wider use of CAR-T cell therapy, next generation medications of existing medications utilised within myeloma such as iberdomide (IMiD), and clinical trials that will be using bispecific antibodies.

You work with patient organisations, support groups, and charities, such as Myeloma UK or the International Myeloma Foundation (IMF). How do patients profit from this cooperation?

The benefits for patients that come from the cooperation are consistency of information being given to them. Knowing that they are being kept informed about upcoming treatments and/or trials that are relevant to the UK.

Being involved in the support group means that any medical questions can be addressed appropriately. It also helps to build a good relationship between the CNS and the patients, and their carers/relatives. The support group is a more relaxed and informal setting and there are times that queries are raised that might not otherwise be spoken about in a clinic environment.

What are your plans for Multiple Myeloma Awareness/Action Month in March? What will you do to raise awareness of this condition?

With the ongoing pandemic it is hard to organise a stand within the hospital which would be the normal approach. However, we will still be able to display information about myeloma in prominent areas of the hospital; as well as having information that can be taken away.

How has the ongoing COVID-19 pandemic impacted your work as a Myeloma CNS as well as the quality of life of multiple myeloma patients?

Generally, the CNS tasks and role have not changed although we are working more remotely; this is due to limiting the amount of face-to-face clinic appointments. We do still make sure that new patients are seen, and time is spent with them in person to go through the diagnosis and treatments, as well as seeing any patients that need CNS input. In some ways the need to be an advocate for patients has increased, as has the importance of communication within the team.

Patients have felt quite isolated due to the pandemic and for some the fact that clinics have moved to phone clinics where possible has increased this. There has also been an increase in anxiety especially when there have been relaxations in the guidance regarding shielding, face masks etc. There have been some changes to treatment with a focus more on using oral treatments, if appropriate, to reduce visits to the hospital; but this in turn means that they then miss the contact with the medical team that they would have had through DTU (Day Treatment Unit) visits, thus enforcing the potential feelings of isolation.

Many thanks for the interview!