In this episode, Neil and Ian are joined by Mavis Nye and Paul Cook representing ActionMeso.
#ActionMeso is a campaign that brings together the diverse mesothelioma community with a single voice.
It is the first time that so many patient support groups and charities have joined forces to raise awareness of mesothelioma.
Their aim is also to get the rest of the mesothelioma community on board including patients, carers, healthcare & legal professionals together with the asbestos removal firms and the construction industry.
Paul Cook - Bio
"In 2017, I was diagnosed with pleural mesothelioma. At that time I was running a business, was fairly active nut then got pneumonia and my lung collapsed. I was then informed that I had terminal cancer. During various treatments including chemotherapy, surgery to remove the lining of my lung and radiotherapy I decided that, if I made it through, I would start a charity dedicated to find raising funds for research into a cure or at least maintenance of this terrible illness.
Since starting Erase Meso along with my wife, Jill and the other Trustees we have come into contact with some amazing people including mesowarriors, carers, supporters or people within the medical profession. We believe we can make a real difference as mesothelioma research is dreadfully underfunded.
My best moment so far was cycling over 900 miles across the UK last year. The support was incredible and so many people helped me get there. In 2020, I am excited that we will be making our first grant which will be the start of many!"
https://www.erasemeso.org/
Mavis Nye - Bio
“My journey with Mesothelioma began as so many Patients find with the day I couldn’t breathe. I was rushed to A&E and they had found a bed for me,where they drained 7ltrs of fluid. So my lung had collapsed, and my diaphragm had bent. They found Mesothelioma cells when testing the fluid. And I was given a 3 months Prodgnosis. After going to Guys hospital, where I had a pleurodesis, I came home with a drain. The Bi-op that had been carried out at the same time confirmed the Diagnosis.
4 Years of Chemotherapy then followed with shrinkage then regrowth 4 times within those years. I became too toxic and I was told there was no more treatment. I had already made it known I was interested in any trial and Immunotherapy was just being investigated. MSD had this trial at the Royal Marsden and I was referred there on my request as Dean Fennel thought it would suit me. Prof De Bono agreed, and I was one of 3 patients to start MK3475-28. I had complete response. It was only because I had Sepsis right at the end of the 2 year trial that I didn’t get that result included in the final figures in time so I'm under the heading of ongoing. That was disappointing.
I had 2 years freedom but then last March new growth showed. The old Meso was still in remission though. The new growth was bi-oped and it was found it was full of PDL1 whereas I only had 1% before. I became the first patients in the world to re-challenge the drug. Within 4 infusions it shrunk 14% and then stopped. It is growing again very slowly, not enough to bi-op yet. The Royal Marsden have matched my DNA to a drug that they can use to boost Pembro and maybe kick it in to work again. That is in the future.
I keep busy raising awareness of Asbestos and the dangers to Health and Safety today as the tradesmen work where the asbestos is hiding and the awareness of how important it is to use the right mask and to have Face/Fit training. Also the Awareness of Mesothelioma and how we need to talk to each other. I run the Social Media as well as My Charity The Mavis Nye Foundation.”
https://www.mavisnyefoundation.com/
Get help with asbestos - https://www.acorn-as.com/
