Dr Amjad Hayat
Consultant Haematologist, Galway University Hospital
Life expectancy for patients with follicular lymphoma is good, but there are significant gaps in knowledge, support and provision that need addressing.
Patients with advanced forms of follicular lymphoma can expect to live 20 years or more. However, given the biological and clinical heterogeneity, research is needed to better understand the complexity of the disease and ensure that patients receive the best possible (and ideally tailored) treatment according to risk factors.
Despite the excellent outcomes for the group as a whole, the life-expectancy of patients who experience a progression of the disease within 24 months is considerably lower: “only 50% overall survival as compared to 90% in patients without early relapse,” confirms Dr Amjad Hayat, Consultant Haematologist at Galway University Hospital.
More needs to be done to identify these individuals early, understand why their outcomes are so much worse, and investigate the best treatment options.
Assessing long-term outlook to tailor therapy
The ability to accurately assess the long-term outlook for each patient and then tailor therapy to the individual is an area of ongoing research in cancer. The Follicular Lymphoma International Prognostic Index (FLIPI), which takes into account five key factors that affect prognosis, has gone some way to providing this but is not used to tailor treatment or predict early relapse. Further refinements of the prognostic score also fail in accurately predicting early progression of disease and prognostic scores remain research tools.
More recently, the use of PET scans at the end of treatment has been reported as an independent prognostic marker. Positive PET scans at the end of immunochemotherapy have been shown to be useful in identifying individuals at high risk of an early relapse. A refinement of PET, that refers to the total volume of active disease pre-treatment ‘total metabolic tumour volume’ (TMTV) could be a useful predicting tool. But there are still many unknowns.
Uncertainty around diagnosis can be very distressing for patients
Even for those patients who go on to live relatively normal lives, the weight of uncertainty that comes with a diagnosis of follicular lymphoma can be hugely detrimental to their quality of life.
Since the early stages of the disease are asymptomatic, by the time a patient seeks help a high percentage will already have advanced stage lymphoma.
As a slow-developing cancer, that remains incurable, despite significant improvements in standard treatment, the first course of action could be ‘watchful waiting,’ which often adds to a patient’s anxiety.
This is an issue that Hayat believes needs to be addressed. “Most patients are waiting for something dreadful to happen and we need to do more to provide psychological support for them,” he says.
Improved funding for clinical trials is needed to improve patient access
When it comes to treatment, there are plenty of effective therapies out there. First line treatments can include radiotherapy, if the condition is localised, along with a combination of chemo-immunotherapy. Maintenance drugs are also commonly given to patients in the two years following treatment.
New options, such as new monoclonal antibodies, immunomodulatory agents, drugs targeting selective cellular pathways and CART-T cell therapy, are on the horizon too, but Hayat believes many patients in Ireland could be missing out on academic clinical trials, allowing early access to these newer developments due to a lack of funding. As part of the Lymphoma Forum of Ireland, Hayat is advocating for greater access, particularly for patients who experience an early relapse.
There is no denying the progress that has been made, but greater research and better support are needed to help patients living with follicular lymphoma.