It is no criticism of the consultants and surgeons who work hard to treat this terrible disease, however in an age where we have driverless cars and robotic vacuum cleaners it struck me as odd that we cannot offer more treatment options to those diagnosed with mesothelioma.
What is Mesothelioma?
Mesothelioma is a cancer of the mesothelium, the thin membrane which surrounds the organs in the chest and abdomen. The cause of mesothelioma is exposure to asbestos, and the symptoms can be shortness of breath or chest pain.
Every year, mesothelioma rates are rising. In 2014, there were 2,502 recorded cases of pleural mesothelioma, and the charity organisation Mesothelioma UK reports that this deadly cancer kills one person in the UK every five hours.
Although we do not yet know when the diagnosis rate will peak, given that the latency period between exposure to asbestos and developing mesothelioma or any other asbestos related illness may be 40 years or more, this may not be for some time yet.
Mavis Nye’s Story
(Image via BLF)
At this same conference, it seemed as though Mavis Nye was a virtual ray of sunshine with her enthusiasm and willingness to share her story.
When she was first diagnosed with mesothelioma in 2009 Mavis explains that she googled the word. She was shocked by all of the reports and articles which she said had a depressing tone.
Generally the treatment options available for mesothelioma are radiotherapy, chemotherapy, a surgery to remove part of the affected lung tissue, or in some cases, a selection of drug trials.
Although Mavis had never worked with asbestos, her husband, Ray worked at the Royal Navy Shipyard in Chatham from the age of 18, initially as an apprentice and then as a shipwright. Throughout his working day he was exposed almost constantly to asbestos dust.
Throughout his work, Ray was never provided with any protective clothing or mask, so the dust would settle on his hair, clothes, and skin. The dust would come home with him and Mavis would wash his clothes, often shaking them out before putting them in the tub. It was not until many years later that Mavis and Ray would actually know how deadly that dust could be.
Mavis told me:
‘When I walked out of my consultant’s office after that initial diagnosis I was given three months. If I had listened to the prognosis I was given I would be dead.’
After her diagnosis, Mavis started knocking on doors and she got in touch with the charity organisation Mesothelioma UK.
Mavis initially underwent pleurodesis surgery to remove some of the fluid from her lungs and then had four rounds of chemotherapy over a period of four years, each of which promised hope. She began to investigate the possibility of clinical trials but one of them was cancelled and she was turned down for the other. Eventually she was told that the tumours were not going away.
In May 2014, she was accepted for the MK-3475 clinical trial at the Royal Marsden Hospital under the care of Professor Dean Fennell, which involved two years of travelling to the Hospital every 14 days to receive the immunotherapy trial drug pembrolizumab (also known as Keytruda).
It was a punishing trial, but Mavis explains that virtually straight away that her tumours began to shrink, and eventually in June 2016 she was told that there was no active mesothelioma. Mavis recounts this moment, saying:
‘We couldn’t take it in, there was a silence and we were shocked.’
Some of the tumours had disappeared altogether and others had shrunk by 81%. It was a wonderful moment when she was eventually told she was in complete remission. Mavis does make it clear that this isn’t a drug for everyone:
‘My bloods are taken every two weeks and my DNA is monitored. I seem to be the only person in the world who can say I am in remission from mesothelioma. The drug has built up an army that attacks mesothelioma in the blood.’
It is perhaps fitting then that Mavis has created her own army of ‘Meso-Warriors’ online through a foundation she established, sharing with each other their own fight against asbestos related disease and discussing information about treatment.
What’s next?
The options available for treatment do vary throughout each Hospital trust and not everyone is eligible or able to participate in the clinical trials for immunotherapy. There is still a long way to go in getting a cure for this terrible disease but Mavis remains positive saying that:
This is a step in the right direction. This drug is not for everyone. We shouldn’t give false hope but we can still give hope.’
Mavis is keen to let sufferers know that they are allowed to get a second opinion, although of course, any treatment options should always be discussed with the treating consultant.
What we at Shoosmiths can continue to do is raise awareness about mesothelioma and the options available to those who are suffering with it. Through continued research it is hoped that one day there will finally be a cure for this terrible disease.
For any further information on help and care for those suffering with mesothelioma, please visit http://www.mesothelioma.uk.com/
For anyone looking for more information on Mavis’ story, her website is www.onestopmesothelioma.com
As a final piece of advice, Mavis stressed to me that having a good carer was an important part of both her treatment and recovery. She citied her husband Ray, who looked after her when she was very unwell and she credits him with helping her fight mesothelioma.
Disclaimer
This information is for educational purposes only and does not constitute legal advice. It is recommended that specific professional advice is sought before acting on any of the information given. © Shoosmiths LLP 2024
