What the focus group said about pleural thickening and asbestosis

Feedback from the regional meeting for people with pleural thickening and asbestosis  Patients feel their questions, about how their disease might progress, are often left unanswered. Patients would like to see more research into whether or not there is a significant risk that people with other asbestos related diseases will go on to develop mesothelioma.…

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Coughs in Mesothelioma 

Kate Slaven, the Mesothelioma Nurse based at Papworth Hospital in Cambridge, is conducting a study on Cough in Mesothelioma. Kate is looking for patients or carers to help her with this. To volunteer you have to be a patient yourself, or someone who has cared for a patient, who is age 18 or above has…

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Busting the myths about palliative care

The Mesothelioma UK Research Centre at the University of Sheffield has produced an animation aimed at people with mesothelioma and their families. It will also be of interest to anyone who is becoming progressively disabled by an asbestos related disease. It looks at common misconceptions about palliative care.  In particular, it aims to dispel the…

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Ipi/Nivo Immunotherpay Approved by NICE

A year on from its first committee meeting to consider this, NICE has finally approved immunotherapy combining Nivolumab and Ipilimumab for the first line treatment of mesothelioma by the NHS. This treatment is commonly known as Ipi/Nivo. NICE is the National Institute for Health and Care Excellence. What’s the best treatment? Patients often regard immunotherapy…

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If you have asbestosis , pleural thickening or pleural plaques, we want to hear from you!

Dr Gareth Walters, Clinical Director of the Birmingham Regional NHS Occupational Lung Disease Service (hosted by University Hospitals Birmingham NHS Foundation Trust) is looking for patients with the following asbestos related conditions: Pleural plaques Visceral Pleural thickening Asbestos pleurisy Asbestosis to talk about their thoughts, beliefs and experiences on living with asbestos related disease, and…

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My journey with mesothelioma

I first went to my doctors’ in October 2018. I was told that my breathlessness on walking uphill was normal for my age. But in February 2019 an x-ray revealed fluid on my left lung. Three months later I had the fluid removed in the Royal Stoke Hospital. A biopsy confirmed my diagnosis of mesothelioma.…

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Nintedanib: New hope for asbestosis patients

Our cells (including those in the lung) are subject to damage from infections and other abnormal materials (including asbestos). When the repair process is upset or altered in some way this can lead to a change in the structure of the tissue, which we call “fibrosis”. How asbestosis affects patients Some people with asbestosis develop…

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Misleading pledges to tackle cancer

The government has been accused of repeating existing pledges to create an illusion that it is  ‘doubling down on cancer’. The prime minister used a visit to a cancer centre in Kent to announce two ‘new’ care standards to ensure that patients with cancer get diagnosed more quickly. His first pledge was that 75% of…

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Your diagnosis is the start of a journey

Being diagnosed with an asbestos related disease is likely to change your perspective on life. Things that used to matter may no longer seem so important. The relationships and everyday things you took for granted may now take on new value. Understanding what your body needs You will find out what really makes you tick.…

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NICE offers new hope for patients with asbestosis

For the first time, patients and their doctors will no longer need to choose between trying a new medicine which has the potential to extend their life and the alternative of claiming Industrial Injuries Disablement Benefit and a lump sum from the Workers’ Compensation Scheme. Drugs which slow the progression of pulmonary fibrosis were previously …

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