Action Mesothelioma Day: “asbestos hasn’t gone away – it is in our modern lives even today!”

Mesothelioma sufferer and No Time to Lose supporter Mavis Nye looks back on her experience and why she continues to campaign on matters around asbestos

I was diagnosed with a left epithelioid mesothelioma via a video-assisted thorascopic biopsy in 2009.

I underwent talc pleurodesis and four cycles of cisplatin and pemetrexed. Sixteen months later, I developed progressive disease and was treated on a trial of NGR-hTNF, a selective vascular inhibitor, for four months to slow down the progression of the disease. I underwent rechallenge with four cycles of pemetrexed and cisplatin, achieving disease stability for 11 months, then received six cycles of carboplatin and gemcitabine, achieving disease stability for a further six months.

From June 2014 to June 2016, I received 52 cycles of pembrolizumab (MK-3475), which I tolerated well. In April 2018, 21 months after completing the two years of pembrolizumab, disease progression started which saw me back on pembrolizumab. Stable disease was maintained for 25 cycles when radiologic disease progression was confirmed. This progressed to my spine, and I have just completed System 2 trial for Radiotherapy to control pain, which has been successful.

My experiences prompted me to raise donations through a charity in my name, The Mavis Nye Foundation, which was created to inspire victims of mesothelioma that we can find drugs to beat it. I also wanted to give hope to fellow victims and show a light at the end of the tunnel.

Through the charity, we have raised enough to have our own MesoUK Nurse in Canterbury and East Kent. This really pleased me as I could give something back as the NHS has given me so much, enabling me to carry on with my life after my diagnosis.

Like everyone else, 2020 and 2021 have been weird years for me, as this pandemic has meant we can’t travel and meet up with others. However, I have still been able to visit so many meetings and conferences as Zoom has opened a new world.

I have also been able to give back as a patient rep, playing a part in the Confirm Trial which bought about Nivolumab being passed as second line treatment. Also, I played a part in the Mars Trial. This has made me so proud of our doctors and the wider NHS.

Our lawyers have fought for the funding for private treatment if needed and we must make sure the ‘MesoWarriors’ and their families claim for compensation.

Asbestos hasn’t gone away. It is in our modern lives even today. It may be banned, but it is in old buildings like hospitals and schools!

This year has been good to me. I received the IOSH President’s Distinguished Service Award from President Jimmy Quinn and Chief Executive Bev Messinger, which was a shock, but not as much as the shock that was to come in June on the Queen’s birthday. To receive the BEM was a mind blower.

It has prompted me to work even harder. Together we will help research more drugs and trials for Mesothelioma. We need to keep fighting!

Find out more about Action Mesothelioma Day.