Danielle Barron reports from this year’s Patient and Family Awareness Day
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 the 2017 Multiple Myeloma Ireland Patient and Family Awareness Day, which took place recently in Maynooth. 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, with Tullamore native Liam McManus shared his story of living well with myeloma. Diagnosed in 2006 at the age of 49, McManus emphasised the isolation he felt when he learned he had multiple myeloma; “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, a senior registrar in haematology at St James’s Hospital, then 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.”
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 promotion of 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.
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.”
Professor Michael O’Dwyer, consultant in haematology at University College Hospitals Galway (UCHG), 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. Clinical trials offer an opportunity for patients to gain early access to these ground-breaking drugs, however, with Blood Cancer Network Ireland and Cancer Trials Ireland working hard to bring these trials to Irish hospitals. The professor encouraged attendees at the awareness day to speak to their haematology team about possible participation. “Generally 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 something a little bit different. “A snapshot of mindfulness for self-care” was the title of the presentation given by Barbara Lynch, psychotherapist and mindfulness educator at Beaumont Hospital. 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”.
Orlaith Cormican, an oncology research nurse at UCHG, 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 myeloma to enable them to self-manage effectively. In her presentation, she explained research has shown 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 long-term to cope and manage with the physical and psychological aspects of their disease. 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 for same. Patients discussed a wide range of symptoms, but the most widely mentioned were peripheral neuropathy, fatigue, infection risk, and steroid-induced side effects.
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 for Myeloma” was the final presentation of the day, given by consultant haematologist Dr John Quinn of Beaumont Hospital. He 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 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. 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 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.”
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.”
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.”