Danielle Barron reports from the recent Multiple Myeloma Patient and Carer Information Day, where new treatments and future research were discussed in addition to practical concerns for those with the blood cancer

At the recent Multiple Myeloma Patient and Family Information Day 2016, Bob and Ann McConnell discussed Bob’s journey with multiple myeloma, and Ann’s role as carer. Saying he would “tell it like it is”, Bob outlined the circuitous route to his eventual diagnosis in 2012. Initially suffering from back pain, a suspected dislocated shoulder eventually led to his diagnosis. Aggressive treatment followed with triplet and later doublet therapy, of which Bob had almost five courses. He discussed the reality of his treatment – he lost 20 kg during this period, and explained it took him almost another year to get “healthy and fat”. Infection was a major issue resulting from Bob’s treatment – including getting shingles twice – while a clot near his left eye was yet another complication. Yet he told attendees that he feels extremely lucky, as he has benefited from the plethora of treatments that are currently available.

This set the scene for the rest of the day’s presentations, each of which had a positive conclusion. The various speakers, who came from all steps of the treatment pathway, outlined the changing face of myeloma treatment and the very real prospect of improved outcomes for a disease that still has low awareness and has only in recent years become the focus of intensive research.
Consultant haematologist at Mid Western Regional Hospital Limerick, Dr David O’Keeffe discussed the newly diagnosed patient, of which there were several in the audience. He admitted that a diagnosis of multiple myeloma is not only a challenge for the patient, the family, but also the treating physicians and nursing team. “Treatment has become more complex but also more fascinating, as we have many more options for patients.”

Age, mental and physical fitness, other illnesses and the social support structure surrounding the patient will dictate the treatment pathway that they follow, explained Dr O’Keeffe.
“For many people, this is a disease they will be treated for the rest of their lives,” he said.
According to Dr O’Keeffe, an autologous stem cell transplant, while a crude treatment and also a tough one for the patient, remains a cornerstone of treatment, despite the ongoing availability of new therapies. Indeed, complete remission after transplant is the best indicator of long term survival, he noted.

Many patients will find themselves on maintenance treatment, and while this will delay disease progression, it comes with a price – fatigue, risk of infection, risk of blood clots, etc. Dr O’Keeffe concluded by saying the future is hugely optimistic for multiple myeloma patients.
Moving from the newly diagnosed, the relapsed refractory patient was the subject of Dr Ezzat El Hassadi’s presentation. The consultant haematologist at University Hospital Waterford explained that almost all patients with multiple myeloma who undergo initial treatment will eventually relapse and require further therapy. It is typically identified on routine surveillance performed during treatment or after the completion of therapy; “however many patients will have achieved a durable disease-free period,” he advised.

Refractory myeloma is defined as disease that is non-responsive while on therapy, or that progresses within 60 days of last therapy, while relapse is hallmarked by the “CRAB” criteria – calcium elevation, renal insufficiency, anaemia and evidence of bone disease.
Treatment selection should be based on specific patient and disease features, and patients should be risk-stratified, and their previous therapy considered, noted Dr El Hassadi. He admitted that with increased treatment options, it can be difficult to choose the “best” treatment for the patient. Guidelines exist to guide this decision, which is ultimately based on a wide array of factors.
Treatment options for patients with relapsed or refractory multiple myeloma include hematopoietic cell transplantation, a re-challenge of the previous chemotherapy regimen, or a trial of a new regimen. To this end, clinical trials should be considered as a care option, particularly before organ damage has occurred, he added.

Triplet combination approaches should be considered when appropriate, and Dr El Hassadi noted that combination treatment with either bortezomib, carfilzomib, and/or pomalidomide with dexamethasone is “active and well-tolerated”. Novel agents in combination can achieve prolonged responses even in relapsed disease, he added.

“Optimal management approaches should emphasise improving quality of life by identifying the potential complications of therapy and minimising long-term toxicity,” he said.
New classes of agents and second-generation agents have shown significant activity and are of considerable interest, concluded Dr El Hassadi.

Kathleen Scott of Cancer Trials Ireland followed, and she outlined the growing number of clinical trials available and relevant to multiple myeloma patients, and gave patients practical information on enrolling and participating in a trial.

Particular focus is finally being given to research in haematological cancers, explained Ms Scott. Blood Cancer Network Ireland (BCNI) is a new national clinical research network which was established in 2015. It is led by Professor Michael O’Dwyer of NUI Galway and has centres in Galway, Cork and Dublin.
“The goal of the Network is to offer early stage clinical trials including Phase I trials to blood cancer patients including myeloma patients, and aims to establish a biobank and blood cancer registry. These are two very important initiatives and we are working closely with them.”

The Cancer Trials Ireland myeloma trials portfolio involves a number of trials into therapies for all types of myeloma, including smouldering myeloma, newly-diagnosed myeloma (transplant eligible and non-transplant eligible), as well as relapsed/refractory myeloma. Ms Scott discussed a number of open trials for which multiple myeloma patients may be eligible.

An ongoing trial into smouldering myeloma is the ECOG 3A06 Study, which is investigating lenalidomide or observation in the treatment of patients with asymptomatic high-risk smouldering multiple myeloma. This is currently open for registration, and there are two Irish sites, namely Galway and the Mater Hospital.
The CyBorD DARA Study is opening for registration soon, added Ms Scott. This is a Phase Ib study that will attempt to assess the safety and effectiveness of weekly cyclophosphamide-bortezomib-dexamethasone (CyBorD) with daratumumab (DARA) in newly-diagnosed transplant-eligible patients. This particular study is sponsored by NUI Galway/BCNI, and co-ordinated by Cancer Trials Ireland, and will have a number of Irish sites. For those patients that are newly-diagnosed but transplant ineligible, the MAIA study remains open for registration, and this is a Phase III study comparing the combination of daratumumab, lenalidomide, and dexamethasone with lenalidomide and dexamethasone.

Ms Scott concluded by urging patients and carers to direct eligibility questions relating to clinical trials to their consultant haematologist.

Breakout sessions during the afternoon allowed attendees to tailor the day’s programme to their own particular queries and concerns.

Miriam Flatley, senior physiotherapist in oncology and haematology at University Hospital Galway, outlined the key role of exercise in multiple myeloma. According to Ms Flatley, research has shown exercise to be safe and effective during cancer treatment, and it can improve quality of life, fatigue, depression, as well as physical functioning.

Yet, there are significant barriers to exercise such as weakness/anaemia, fatigue, peripheral neuropathy, as well as issues of bone pain and fractures, she acknowledged.
With peripheral neuropathy a known side effect of chemotherapy, Ms Flatley explained that the tingling, numbness and/or burning sensation that this can cause in the hands or feet may be alleviated somewhat by gentle exercises to maintain movement and strengthen muscle groups.

Increased risk of falls is a major consideration for the treating physio – coupled with the bone damage that multiple myeloma can cause, this mean minor traumas can often cause fractures. This is also a double-edged sword – fear of falls may result in patients not moving. Removing risk factors from the home is the obvious first step, but weight-bearing exercise is key to improving strength and balance exercises are also sued a strategy to prevent falls. Postural and flexibility exercises are also essential. Ms Flatley warned patients to avoid any jerking or rapid movement, and to avoid bending and twisting, especially if holding a weight.

“The important thing to remember is that there is a level and a type of exercise for everyone with multiple myeloma,” she finished.

In the second breakout session, Liz Higgins, Autologous Transplant Co-Ordinator, St James Hospital, Dublin outlined the procedure of autologous peripheral blood stem cell rescue, otherwise known as a bone marrow transplant.

She explained that the term “transplant” is something of a misnomer, as the bone marrow transplant/peripheral blood stem cell transplant involves eliminating an individual’s bone marrow stem cells. High dose chemotherapy is given, then bone marrow/stem cells previously harvested from the individual’s own bone marrow or peripheral blood stem cells are used to replace the cells i.e. are “transplanted”. It is used to facilitate high dose therapy in some malignant conditions, and can be unpleasant, if not downright difficult; “we have to make you sick before we can make you better”, Ms Higgins told attendees honestly.

She also echoed earlier speakers, however, by saying that it is still a crucial element of treatment if a patient is suitable.

“All of the literature will tell us that the chance of remission is far better with a transplant than without.”

Ms Higgins outlined the practical issues involved for patients. Significant work-up is required, including pulmonary function tests, an echocardiogram, a dental assessment, and a skeletal survey, among other tests. The procedure itself takes roughly five to six hours and side effects will kick in a few days later; these are primarily issues of infection, as well as gut irritation including vomiting and nausea.

The final breakout session as given by Geraldine Daly, a clinical nurse specialist in haematology working in University Hospital Limerick, and dealt with managing the side effects of treatment and complications of myeloma.
She emphasised that while multiple myeloma is an incurable but treatable disease, the effective management of symptoms effectively can improve a patient’s quality of life and increase survival. While there are debilitating physical symptoms such as pain, and reduced mobility, a patient’s physical well being will also impact significantly on their psychological health and quality of life.
“There is also the anxiety and fear of recurrence constant concern,” she noted.

Supportive care is an important component of myeloma management, provided concurrently with treatment and Ms Daly provided practical advice on managing issues such as pain arising from bone disease, as well as renal impairment. Avoiding infection is of paramount importance, and she urged patients to wash their hands often, and avoid close contact with people who have chicken pox, shingles, or measles.

She echoed Ms Flatley’s earlier points about peripheral neuropathy, saying it is a common side effect that may be present at diagnosis, but can also be caused by certain medications. This may cause profound distress for patients, who often describe it as like “walking on nails”. “This requires close clinical monitoring and prompt action, such as modifying the dose of the drug or stopping it, where appropriate.”
Ms Day concluded by urging patients to be “positive but also realistic” about treatment and outcomes.
“New treatments mean there is a positive future for myeloma patients,” she concluded.

Dr Patrick Hayden, consultant haematologist at St James’s Hospital concluded the day’s proceedings with his presentation on “Future Strategies in Myeloma”. He explained to the audience that for the 235 patients who will be diagnosed with multiple myeloma each year in Ireland, long-term survival is the best it has ever been with major advances in the treatment of all age groups with the disease.
“While 10-15 per cent have very aggressive disease that is difficult to manage, the data shows that the majority of people are alive and well after five years,” he said.

The haematologist outlined some of the data in relation to the newer therapies, such as pomalidomide, daratumumab, and carfilzomib and also outlined the current trend from intravenous to subcutaneous administration of bortezomib (Velcade).

Dr Hayden asserted that there have been major advances in the treatment of myeloma in all age groups, with not only the same drugs being used in smarter ways, but also a promising pipeline of novel agents to look forward to.

He concluded by telling multiple myeloma patients that it is “so important” to keep socialising, seeing family & friends.

“The wrong thing to do is wrap someone in cotton wool for fear of getting an infection. You must live your life as normally as possible.”

The presentations from all the day’s talks are available in the “Resources and Apps” section of the website

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