Warning! This is a long blog, so if you want news of Steve's check up go straight to "Meso 2" ....but please read "Meso 1" if you have time, especially if you are new to this disease - there is some useful information there!
Yesterday we attended the inaugural meeting of the first ever support group set up especially for people with mesothelioma and their carers in the Oxford/Thames Valley area. It was organised by Melanie one of the specialist lung cancer and mesothelioma nurses at the Churchill Hospital Cancer Centre where Steve receives treatment. The first thing we noticed on entering the room was how many people there were! Never having met anyone here in this area with meso, I've always assumed that there are only one or maybe two others. How wrong can you be?
Two speakers talked to us after lunch, including Liz Darlison Nurse Consultant with Mesothelioma UK - a familiar name and face to us as she organises the annual national Meso Patients and Carers Day. Liz talked to us about the development, work and aspirations of her charity. To find out more more about Mesothelioma UK, click here .
The other speaker was Dr Rahman, a consultant and senior lecturer at the Oxford Centre for Respiratory Medicine, which is based at the Churchill Hospital campus. He talked about new directions in mesothelioma treatment and care, highlighting at the start of his talk the close correlation in the UK between asbestos imports and the number of people being diagnosed annually with mesothelioma - the two graph patterns are an almost perfect match, but time-shifted forward 30 years or so because of the long latency period of the disease.
As asbestos imports in the UK have been banned now for some years, the number of mesothelioma cases is expected to decline in a similar way after peaking in 2020. But it's a different picture in other parts of the world, especially places like India and China which currently import far more asbestos that the UK ever did, but have far less stringent health and safety regimes. So....a BIG international problem for the future, which is why (a) asbestos exports should be banned now - and that includes you, Canada and (b) more resources need to be put into research for a cure because this disease will be getting worse worldwide for many years to come.
Dr Rahman then went on to talk about the four main areas of treatment:
(a) Fluid drainage and management
- Pleurodesis (the operation which drains fluid from the pleural cavity and then sticks the pleura back together with surgical "talc") works for 7/10 patients. If there is no recurrence of fluid within three months of the operation, then it's unlikely to happen again - reassuring news for us as Steve had pleurodesis in 2009 and has been OK since then.
- In future it seems like more patients will be offered an in-dwelling pleural catheter, which they can use at home to self-drain without an operation - research suggests this option is every bit as effective as pleurodesis.
- Agents other than surgical talc are also being tested as a means to stick the pleura back together after fluid has been drained
- Studies are also underway to develop pills and injections designed to "turn off the tap" and stop fluid forming in the pleural cavity in the first place
(b) Oncology treatment - including chemotherapy and radiotherapy
- Over the last 5-6 years, chemotherapy has been much more effective at improving both survival rates and quality of life for people with mesothelioma and further progress is expected in the next 3-4 years
- second line chemotherapy is now being given more often to people who are keen to continue the fight back
- new chemo agents are being developed and tested in clinical trials, including immunotherapy (4 trials open in the UK at present); agents which target only mesothelioma cells not healthy cells (14 targets in the early stages of research at present); gene therapy, which uses especially modified viruses to get genetic material into meso cells and "turn them off" so they stop growing - currently being pioneered in Pennsylvania, USA
- Working with DNA and enzymes
- the big operation - extrapleural pneumonectomy (EPP) - is out of favour - research indicates that the overall survival rates and quality of life is actually worse for most people who have EPP - generally they don't live as long and their quality of life is worse than patients who don't have EPP
- the smaller operation - pleurectomy/decortication ie lung-sparing surgery using video-assisted thoracoscopy (VATS) is more effective and is less intrusive for the patient. This procedure is currently carried out in London, Leicester and Oxford. It is likely to increase in importance as a means of de-bulking tumours to help breathlessness, especially when used in conjunction with chemotherapy and radiotherapy (tri-modal treatment)
- This encompasses regular follow ups; structured assessments; the rapid involvement of specialists when required and parallel quality nursing care. It can also include the use of medication such as steroids, painkillers and medication for the lung/airways, together with radiotherapy targeted at particular areas to reduce pain
- Based on lung cancer research, best supportive care improves a patient's quality of life from the outset. People getting best supportive care also live longer :-) Make sure you get it!
- X-rays v CT scans - Question: If CT scans give a better picture, why are they not used more often instead of X-rays (which are used in Oxford)? Answer: radiation and money - an x-ray is equivalent to the amount of radiation you get from two days exposure to the sun at the seaside. Radiation from a CT scan is 100 times stronger. It is also a lot more expensive. So in Oxford it is used for the initial diagnosis and thereafter only if justified ie if treatment would be likely to change as a result of finding something on the scan.
- Is mesothelioma "rare"? Yes, but it's more common that melanoma (skin cancer) and cervical cancer, both of which have a higher public profile and awareness - we need to spread the word, if we want to attract more interest from researchers and funding bodies!