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Living longer with multiple myeloma

Multiple myeloma may not be one of the more common cancers, but there is a close-knit community of patients, supporters and healthcare professionals. This was evident at this year’s Multiple Myeloma Ireland Patient and Family Awareness Day, which took place on 9 November in Maynooth, Co Kildare. A broad range of speakers covered all angles of this multi-faceted disease, from diagnosis to treatment, as well as future strategies for the incurable blood cancer.

Fittingly, the morning began with a view from the patient perspective, as Tullamore native Liam McManus shared his story of living well with multiple myeloma. Diagnosed in 2006 at the age of 49, McManus emphasised the isolation he felt when he learned he had the disease: “I didn’t know what it was, I had never heard of it. I was the only patient in the hospital with the disease and there wasn’t a lot of information available back then.”

Mr McManus said while the word ‘cancer’ was the last thing he wanted to hear, being told it was highly treatable gave him hope. He has been through the entire gamut of treatment, including an autologous stem cell transplant (ASCT), but is now in remission and no longer on medication. “I am well again now, with no aches or pain. My life no longer revolves around my myeloma.”


Dr Siobhan Glavey, SpR in Haematology at St James’s Hospital, Dublin, delivered an overview of multiple myeloma treatment. She acknowledged its status as a complex disease and one of the lesser-understood malignancies. “I agree with Liam that it is something of a vague concept for a lot of people — when they are dealing with a tumour in a certain organ such as the breast or the bowel, it’s more of a solid concept in their mind as to what it is, has it spread, has it gone now?”

Multiple myeloma begins in the bone marrow but Dr Glavey noted that the disease is “smart”; even when taken out of the bone marrow, it will find a way to grow elsewhere. An extensive whole-body assessment is needed in order to definitively diagnose the disease. This includes blood and urine tests to check for abnormal antibodies, or paraproteins, bone marrow tests such as aspirates and biopsies, and imaging such as MRI and/or PET scanning.

‘CRAB’ is the acronym for the most common symptoms of multiple myeloma — elevated Calcium, Renal failure, Anaemia, or Bone problems.

Dr Glavey added that cytogenetics is critical — this assesses the genetics of the myeloma cells themselves and may indicate more about the biological signature of the disease. “This has proved to be the most important tool to predict outcomes in multiple myeloma,” she said.


The principles of therapy in multiple myeloma are to stop the production of abnormal plasma cells, strengthen the bone and prevent fractures, treat anaemia and reduce fatigue, as well as promoting wellbeing and quality of life. The balance between treatment and quality of life must be found, said Dr Glavey: “There is no point in giving a patient the strongest drug we have if it makes them feel dreadful and severely impacts their quality of life.” Hence, individualised treatment in multiple myeloma has become a priority in recent years and the influx of new drugs has made this increasingly possible, she added.

ASCT remains the most effective therapy in eligible patients, providing the best chance of  “deep and durable remission”, Dr Glavey continued. However, this is not suitable for all patients, as there are significant associated side-effects such as risk of infection and psychological distress.

Dr Glavey emphasised the importance of supportive care in multiple myeloma, calling it the “backbone” of treatment. “This allows patients to be cared for in a completely holistic way. It is essential to ensure the maximal benefit from treatment and quality of life.”

Preventive care is also critical, such as prevention of infections via vaccines and prophylactic antibiotics, the prevention of bone problems using calcium and vitamin D as well as bisphosphonates, and the prevention of kidney problems by staying adequately hydrated.

Multiple myeloma is a disease with widespread effects in the body — each patient is different and treatment needs to be tailored to the individual, concluded Dr Glavey. “Patient are living longer and better with multiple myeloma in 2017 than ever before and that points not only to the better treatments, but the better supportive care available now.”

New developments

Prof Michael O’Dwyer, Consultant Haematologist at University Hospital Galway (UHG), gave a talk on new developments in multiple myeloma. He explained that the last decade or so has seen a number of new drugs added to haematologists’ armamentarium when it comes to treating multiple myeloma. “These have had very real impact on the survival of patients in the relapse setting,” he told attendees. While for many years, chemotherapy was the only real choice of therapy, the arrival of thalidomide and the new class of immunomodulatory drugs changed the face of treatment in multiple myeloma. “This class of drugs has proven very useful in the relapse setting and they are now frequently used in combination with traditional therapy.”

The proteasome inhibitors have also had a major impact, but Prof O’Dwyer noted that the second-generation drugs in this class are not readily available in Ireland due to funding issues. Similarly, there are issues regarding access to the monoclonal antibodies such as daratumumab.

Clinical trials offer an opportunity for patients to gain early access to these ground-breaking drugs, however, with Blood Cancer Network Ireland (BCNI), which Prof O’Dwyer is the Director of, and Cancer Trials Ireland working hard to bring these trials to Irish hospitals. He encouraged attendees at the awareness day to speak to their haematology team about possible clinical trial participation. “Generally, patients who go onto clinical trials tend to do better, as the standard of care provided within a trial is very good and international evidence supports that even if you go onto a trial and just get the standard treatment, patients will still benefit significantly.”


The medical presentations were interspersed by a session on self-care. ‘A snapshot of mindfulness for self-care’ was the title of the presentation given by Ms Barbara Lynch, psychotherapist and mindfulness educator at Beaumont Hospital, Dublin. Ms Lynch explained to the audience that while the brain has a “negativity bias”, neuroscience has shown that the brain is remarkably plastic and can be trained to be resilient and optimistic. She explained that self-care can be as simple as having some quiet time, watching television, taking exercise, or doing some meditation. “There is a difference between being selfish and being self-caring… it’s not being indulgent.” Engaging the audience in some simple mindfulness exercises, Ms Lynch asserted that in the future, ‘brain hygiene’ will become “as natural as brushing your teeth”.

Ms Orlaith Cormican, an oncology research nurse at UHG, is the recipient of a HRB Cancer Nursing Research Grant, of which the overall aim is to develop a symptom management healthcare app for those with relapsed multiple myeloma to enable them to self-manage effectively. In her presentation, she explained research has shown that myeloma patients have the highest symptom burden and problems in comparison to other haematological malignancies. Yet symptom management remains complex due to the array of treatments given.

Ms Cormican noted that self-management may be beneficial in helping patients diagnosed to cope and manage with the physical and psychological aspects of their disease long-term. She explained the pilot project in Galway involved holding focus groups with multiple myeloma patients in order to determine their most difficult ongoing symptoms, as well as their coping strategies. Patients discussed a wide range of symptoms but the most widely mentioned were peripheral neuropathy, fatigue, infection risk and steroid-induced side-effects. It was found that the majority of patients want to live life to the full and “keep going”, while patients with a longer diagnosis tended to have less fear, worry and discouragement about their health and life and tended to just “get on with it”, said Ms Cormican.

Patients also said, however, that they have to push for interventions or seek alternatives due to lack of continuity in their care and a lack of emphasis on the chronic problems they experienced, she added. In addition, participants reported discrepancies in the information they received from different healthcare professionals.

“Patients with chronic illnesses need effective clinical, behavioural and supportive treatment, as well as the information and support to help patients become competent managers of their own health and illness. Co-ordination of care across settings and professionals is also key.”

The final part of the research is the development of a symptom management tool (or app) developed for patients’ home utilisation when experiencing symptoms or side-effects. It is hoped that the app will be completed by the end of this year and piloted in early 2018, Ms Cormican concluded.

Future strategies

‘Future strategies for myeloma’ was the final presentation of the day, given by Dr John Quinn, Consultant Haematologist, Beaumont Hospital, Dublin, and investigator with BCNI, where he is actively involved in recruiting patients to several early-phase multiple myeloma clinical trials.

Dr Quinn reiterated earlier positive statements, saying response rates to treatments have reached 95 per cent and thus survival continues to improve for myeloma patients. Yet this brings new challenges, namely how to care for this ageing myeloma population, the “hyper-elderly” aged 85 years and over.

Efforts are also ongoing to further improve outcomes, either by developing enhanced versions of existing drugs, or elucidating new treatment targets and methods, Dr Quinn explained. For example, carfilzomib is a more potent version of bortezomib and a number of studies have examined its effectiveness in multiple myeloma when combined with other drugs. The ASPIRE study published in the New England Journal of Medicine in 2015 showed a significant improvement in progression-free survival and overall survival for patients given carfilzomib plus standard treatment of lenalidomide plus dexamethasone, versus those given lenalidomide/dexamethasone alone. The head-to-head ENDEAVOR study of bortezomib vs carfilzomib affirmed this, even in patients with high-risk disease, he added. “This is a medication you will see more of but as things stand, it is not currently reimbursed, but it is a medication we would like to see made available for patients.”

‘Immunotherapy’ is the major buzzword across cancer medicine at the moment, allowing for targeted treatment, continued Dr Quinn. Monoclonal antibodies developed in recent years have shown efficacy in multiple myeloma; these include daratumumab, which targets CD38, a protein expressed exclusively on myeloma cells. Other monoclonal antibodies in development for use in multiple myeloma include elotuzumab and isatuximab, and while there are infusion-related reactions associated with the first cycle of treatment, these can be easily treated with paracetamol and are typically not repeated, he noted.

Other immunotherapy agents include the PD-1 inhibitors such as nivolumab and pembrolizumab. These have been the subject of much media attention due to their efficacy in other cancers; “they have been trialled in myeloma and it is less clear that they are as effective in myeloma”.

B-cell maturation antigen (BCMA), in contrast, is showing significant promise as a target for an investigative agent currently being trialled in patients with relapsed/refractory multiple myeloma; Ireland hopes to act as a site for one of these clinical trials in mid-2018, advised Dr Quinn.

Chimeric antigen receptors (CAR) T-cells, where immune cells can be genetically engineered to better recognise myeloma cells and deliver targeted therapy, are also showing promise in multiple myeloma, he added.

The crux of current multiple myeloma treatment is now whether doctors should be aiming for “cure or control”, according to Dr Quinn. “With currently available treatments, we are probably curing a subgroup of patients given the durable responses we are seeing but really you need an awfully long follow-up to show cure, as opposed to a long remission — you need 15-to-25 years to really know that.”

Lessons can be learned from curable blood cancers such as chronic myeloid leukaemia and acute myeloid leukaemia, although these are very different diseases to multiple myeloma. “These approaches are not going to work for multiple myeloma but what we do know is that where we do cure blood cancers, we need an early, deep response, and we need to learn how to reduce long-term toxicity of medications, such as secondary cancers.”

Right now, learning how to best “package” the currently-available drugs for multiple myeloma remains the biggest challenge, he concluded. “What we know is that three drugs are better than two drugs in the majority of cases, but we have learned there is too much toxicity when we use four drugs. We also have to be careful as we add in monoclonal antibodies and other immunotherapies.”


Also addressing the meeting, Ms Mary Kelly, advanced nurse practitioner in haematology and Chairperson of Multiple Myeloma Ireland, explained that the charity’s mission statement is one of information, education, support and public awareness — this includes an increasing amount of advocacy, as well as running various support groups around the country. The charity has been working closely with the Irish Cancer Society, as well as Multiple Myeloma UK, she explained.

The meeting served as the launch event for the updated and expanded version of the Multiple Myeloma Ireland patient information leaflet Living with Multiple Myeloma. See for information on the charity’s meetings and support services and resources for patients.

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