Thanks so much to all our brave contributors below..
If you'd like to contribute your own hopeful story/experience of mesothelioma, please email here with a picture and short story.. Thank you.. we are all about spreading HOPE!
In 2009 Mavis found she couldn't breathe when walking up the road to the polling station. Lucky enough she had already been to the GP with a pain in her back and her arms were twisting. The GP thought it was a trapped Ulmur Nerve and he had arranged an ex-ray.
When she got in the phone was ringing and the GP said get to A&E at Kent and Canterbury There is a bed waiting for you to have your lung drained.
On arriving at hospital they drained 7 litres of fluid and gave her the devastating news she had mesothelioma and a prognosis of 3 months.
After 4 years of Chemotherapy in 2014 Mavis went to the Royal Marsden for the first immunotherapy trial Mk3475-28 and had complete response.
2 years free of treatment 2018 saw complete new growth. Mavis re-challenged pembrolizumab but the meso carried on growing very slowly.
The Hyper Trial was then tried, guadecitabine dose escalation With Pembrolizumab but her bloods kept dropping so the dose was lowered twice but that is the last time at 25%
Research is needed as the answer hasn't been found yet although Mavis has played a huge part and has live Bi-Ops to discover how the cancer can turn off Pembrolizumab. Her DNA is also being studied so there is hope that many questions will be answered.
Mavis is an inspiration to all of the team here at Erase Meso. She has supported us since inception and we think she is amazing!
She and her husband Ray have tirelessly campaigned against asbestos.. and to support her meso-warrior friends GLOBALLY.
Mavis Nye, 78
Hello, I’m a 51 year old pleural mesothelioma warrior and a 22 year Survivor who was diagnosed with pleural mesothelioma September 1998. At the age of 28 at that time I was living on Long Island New York. I had an open lung biopsy at Columbia Presbyterian Medical Center, New York City. I was back a week later to have to have my left lung removed and half my diaphragm. I spent 2 1/2 weeks in the hospital and was back a month later which happened to be my 29 birthday to start chemotherapy. Then that Christmas time 1998 did scans only to find out in January 1999 that Meso had metastasized to the other lung. I was told by my oncologist at the time I had five years approximately to live to which I said no way started chemo again finish bottom line is I and here over two decades later. I am today living in Arizona at the ripe old age of 51 and want to say to everybody who reads this is you must stay positive and strong. Because nothing is certain in life so like I said stay positive stay strong. All my best to everyone.
Christopher De Santis, 51
Hi! I’m Natalie, and I was diagnosed with advanced pleural epithelioid mesothelioma in my right lung in August 2017 at 34 years old. I’m British, but I live and am treated in Spain. I was diagnosed out of the blue off the back of a persistent dry cough and 8kg weight loss. The month post diagnosis was a total whirlwind of scans, biopsy, lung drain, results and then informing friends and family, which was one of the most difficult things. I started chemo in September and had 4 rounds of the standard Cisplatin/Pemetrexed chemo, which was rough, but I tolerated it well and it kept me stable. After that I was put straight onto Pemetrexed alone as maintenance chemo for 8 months, which is lighter, but I actually found more exhausting. After a small amount of growth in August 2018 I was then put onto Carboplatin/Pemetrexed, which I have been having every 3 weeks ever since, with stable PET scan results every 3 months up until now. I have innumerable side effects, which have increased in their variety the longer I’ve continued with chemo, but I’ve learnt to manage them and know my variations throughout a cycle. I’ve managed to maintain a relatively normal life up to now, just with a lot more siestas! I am lucky to have a great support network, both from my husband and family here in Spain, my parents and friends and family back in the UK, an excellent oncology team here in Spain, and support from Mavis Nye’s Facebook support groups and charities such as SWASAG, Meso UK and Erase Meso back in the UK. I hope to continue on my current chemo for as long as possible, as the next steps after that are into the unknown – especially in times of Covid. But positivity is the key! And we remain positive and encouraged by the recent advances in treatment and the development of new trials.
Natalie Woodward, 37
Dave had life changing surgery with his left lung fully removed in Nov 2015 (known as EPP). This was followed by 4 rounds of Chemotherapy (cisplatin and pemetrexed) from January to April 2016. Latest scan in Jan 2020 showed there is no sign of the disease and the specialist advised to move from 6-monthly scans to every 12months!
In order to raise awareness and vital funds for research he cycled 100 miles on the prudential Ride London in July 17, raising £15k. He also continues to help others & raise awareness through speaking at various support groups & conferences.
Dave continues in good health, is back in work full time, and leading a busy family life with 2 kids whilst trying to keep fit through regular gym sessions. He is hoping to take part again in fundraising activities in 2020, watch this space.
Diagnosed October 2015
David Staley, 44
Nigel underwent a two year Immunotherapy clinical drug trial. The immunotherapy has shrunk the Mesothelioma to barely visible under CT a scan. Nigel was proud to be part of a team cycling from Lands End to John O Groats with his friend Paul Cook raising money for mesothelioma research.
Nigel has now completed the drug trial and is back at work full time as a radio engineer in the mobile telecoms industry. However he is still training hard. This year he has a few sporting challenges in mind. In July he is swimming the Solent to the Isle of Wight. In August he hopes to participate in a Long distance triathlon.
Nigel Shaddick, 52
When I first heard the word mesothelioma it went straight over my head ... what did he say? How do you pronounce it, what did it mean!
I sat there just dumbfounded, I had a pesky cough that wouldn’t go away... four visits to my doctor over a year where I was always told same thing, “your lungs sound fine, no infection you’ve probably developed a habit” forth visit i was frustrated and said sort this out and they referred me for a X-ray, that lead to a biopsy that resulted in me sat in a white small room with the word mesothelioma being said, feeling totally stunned until the tears flowed.
I was advised not to google mesothelioma as it wasn’t a very positive read, not that I could have as I couldn’t even remember what it was called once I left that room.
I was told it’s terminal, no time frame given but we are gonna throw all we have at it, (onto the conveyor belt I blindly jumped, scared, worried and wanting to be saved )
So I went through surgery where a fantastic team of surgeons went in and removed my pesky lump, followed by radiotherapy and lastly the dreaded chemo.
I was plainly told no cure, but chemo may give me longer. I asked if there were any clinical trials and I was told not at the moment. So I followed the treatment plan.
I found a wonderful support group on Facebook that was set up by some beautiful ladies who helped me so much and I think of these ladies often, they were hope and understood everything I felt and was going through. The sort of things you don’t want to talk to your loved ones about.
Once chemo finished I looked into mesothelioma a little more and the name professor Fennel kept coming up ...and as I typed in his name I felt hopeful , someone who knew more about my cancer, I reached out and he promptly replied ... and that is where I feel a little ray of hope entered my life..
The care, the information and the support.. was over whelming ... a whole team of people that were positive.
I was informed it had grown since finishing treatment and while the idea of more chemo so soon filled me with dread, I agreed to do it, ... after two lots of chemo scan showed some reduction , after a further small hole, the decision was made to pause chemo and see how things went... and I was so relieved.
Five years later and I’m still stable !
No treatment needed - just 12 weekly scans and a catch up with the beautiful people in clinic who are there to support me when it starts to grow again!
I still get scan anxiety where I question every little pain I’ve had, or a cough that’s lasted a week too long, what’s this scan going to show but when it does happen to show me bad news I feel a much stronger person this time around to deal with it, things are always changing and new clinical trials starting who knows what’s around the corner, but for now I spend all those weeks in between scans with family, having holidays and appreciating all the good days we have. I do have days where the clouds descend and I have a blue day but I always try not to let it linger and have a cry if it’s needed then settle in for some love and snuggles with my new best friend Mabel
ERASE MESO is the brainchild of Paul Cook, who was diagnosed with Malignant Pleural Mesothelioma in November 2017 at 43 years old.
He has endured 6 rounds of chemo, surgery and radiotherapy since then. He has changed diet and exercises every day.
Paul now has 1.5 working lungs, has been in remission since June 2018 and is grateful for every day.
He and Nigel cycled the length of Britain in 2019 raising funds for mesothelioma research.
He is now working on Action Mesothelioma Day 2021 and is bringing the UK's meso support groups and charities/asbestos associations together to raise awareness & petition the government.
Paul Cook, 45
We are currently only fundraising for mesothelioma research. However we are working in collaboration with The Mavis Nye Foundation and Mesothelioma UK who are wonderful charities and provide superb PATIENT AND CARER SUPPORT.
If you are currently caring for someone with mesothelioma or personally battling it, please do get in touch with them via their websites