Welcome to Cancer Chat Croaky although I'm sorry about your diagnosis and how long it's taken to get it.

We have some information about mesothelioma on our website but I'm sure some of our members will be along soon to share their advice and experiences with you.

I see you've asked some questions about treatment. The best people to discuss this with would be your medical team but our cancer nurses are available on 0808 800 4040, Monday - Friday between 9a.m -5.pm if you'd like to have a chat with them about this as well. 

Kind regards, 

Steph, Cancer Chat Moderator

Hi Croaky, 

My dad was diagnosed with pleural mesothelioma at the start of March this year. He had a severe pleural effusion on his left lung which lead to the diagnosis. When they went into do the biopsy they put in a PlureX catheter for the fluid. He had a lot of pian on the draining of the fluid for a period of a few weeks, then ended up with an infection in the pleural fluid and pneumonia. To say it was a rough few months, would be putting it mildly. However, the infection actually ended up being a blessing in disguise and helped get rid of the pleural fluid. Dad was able to get the drain removed. We went and saw a doctor in London, as his oncologist in Belfast was that helpful or knowledgeable about the options available for mesothelioma patients (I felt like I was more aware than she was after getting blank looks from her for my list of questions for our first appointment). The doctor was a complete breath of fresh air and while dad's diagnosis did not change, he actually reviewed him as an individual, assessing his condition particular to him. He also gave us huge amounts of info on possible clinical trials and contacts for those trials. To qualify for any trials however required completion of your chemotherapy. Dda has been through this and although tough, he weathered it fairly well. His attitude has always been never to miss a meal and to get up every day and do what he normally does. His disease is considered stable after his 4 sessions of chemotherapy (cisplatin and pemetrexed). He has put on weight and has more energy than me. I feel like I'm tempting fate, but he really is doind well at this moment. I know this is considered a terminal disease but there are people who has been coping with it for a number of years. I have done A Lot of research and there are definitely options within immunotherapy which may work for you.. But chemo is always the first step. 

Hi, thank you for your reply. I also had the fluid drain (VATS surgery) when I had the biopsy done, it's the only thing, in all of this, that has made me feel unwell. That was a month ago and I'm all heeled up from it now. I'm back to how I was before. I'm fitter than most of my friends and family! 

I'm thinking I don't want to go through trial therapy while I'm feeling so well. I feel it's quality over quantity, in my case. 

I have to say all the doctors and nurses I've encountered in London have been great. Very informative at every stage. 

I'd love to hear from anybody whose also made the choice not to have chemo/trial therapy and how they coping without it.