PatientTalk.Org is proud to interview Mavis Nye –a Mesothelioma patient, 67 year old wife and mum diagnosed with mesothelioma in 2008, from  Seasalter, Kent in England

http://www.mesotheliomahelp.org/2013/12/mavis-nye-finds-voice-fights-mesothelioma-community/

You can read Mrs Nye’s blog here http://rayandmave.weebly.com/maves-blog.html

PATIENTTALK.ORG How has Mesothelioma affected your life?

MRS NYE Well, I wasn’t diagnosed for forty-eight years so I had just retired and I was set really. I had bought a motor home and we were going to go camping and then all of a sudden I got fluid in my lung and I couldn’t breathe.

PATIENTTALK.ORG And what has been your treatment journey?

MRS NYE Right, so I had that fluid drained and they drained off seven litres of fluid. They then did a Pleurodesis which is a talcum powder operation that they stick the lining of the lung onto the chest wall so that you can’t fill up with fluid any more. And then I started a cisplatin and a limiter which is the normal one. I managed to get through four of those and I was so ill but I got stable and I got shrinkage. That then grew again after eighteen months and I went on to a trial at Maidstone. That didn’t work and it didn’t stop growing so I had to go back in and have a cisplatin and a limiter but by that time I was too allergic to it. I only took two sessions and we had to stop but I had shrinkage but then it is growing again so I went on to gemcitabine and carboplatin. And that hasn’t worked so I now want fifth line but it isn’t available to me. There is no trial I can have because they are only for phase one or two so there is just nothing for me and I am spending money travelling the country knocking on doors and asking ‘have you got a cure for me?’

PATIENTTALK.ORG And how has it affected your day to day life?

MRS NYE Well I was doing okay but the nerves in my legs were bad, I have to take a nerve blocker and I can’t walk very far now and that is getting less and less because it is poison that they are putting in your body.

PATIENTTALK.ORG And what is your hope for people diagnosed in the future?

MRS NYE Well my hope for people diagnosed in the future really is that this Bill that Lord Saatchi is trying to get through, the Innovation Bill because I say that I should have a phase one trial because why not? I’ve got nothing to lose, I’m terminally ill and so I would like a phase one trial. It might help and I might get another year out of it, it would be lovely because at the moment, I want that Bill today but I could be dead tomorrow.