My life with Mesothelioma
Mavis Nye, author of Five Years a Mesowarrior, shares her story:
"I’m just an ordinary woman who married at 18 and washed my husband’s clothes as he came home from work at the Chatham Dockyard as a Shipwright. I didn’t know the powder on Ray’s clothes was anything other than dust brought home from work. I shook his clothes and then put them in the washing machine. Forty-eight years later I find I have Mesothelioma and a death sentence of three months. That led to me being given three months to live.I didn’t accept that and after my pleurodesis at the Guy’s Hospital in London, I started chemo, Cisplatin and Alimta which is the standard treatment in the UK. This worked for fifteen months then started growing again.
I was offered the NGR-hTNF trial at Maidstone. This clinical trial acts on the tumours blood vessels which I’m afraid didn’t work for me or I had a placebo. So two sessions of Cisplatin and Alimta, I became allergic but it did work and we had stability again for a while... then growth was found in my next scan.
The Life Line
What would I like next as there are no new trials or Chemo? I’m not used to a doctor having no answers. I emailed Saint Bartholomews Hospital and that Friday I attended an appointment where Peter offered me the last place on the ADAM Trial, but it would mean another Bi-opsy and then I might not even be suitable. He threw me a life line of GemCarbo chemotherapy and I could have that locally. Back to Canterbury and I was on chemo again until September.
The October scan was bad news... the chemo hadn’t worked. A scan every three months was showing the growth of three millimetres every three months. I wasn’t happy. So I got right behind the Saatchi Bill (The Medical Innovations Bill) and worked with Lord Saatchi and the doctors. I was also on the committee when it was launched at the House of Commons. Then a Doctor gave me the advice to go to the Royal Marsden where they were starting a trial that might suit me, so I asked my Oncologist and she referred me.
Joining the Meso Warriors Community
I’m now on a Phase 1 trial of Immunotherepy. It isn’t just for Mesothelioma but the trial, MK-3475 is a drug being tested which blocks the interaction of a substance called PDL-1 with PD Inhibitor. When I was first diagnosed with Mesothelioma in 2009, I Googled the word as I’d never heard of the disease, only Asbestosis. All the depressing reports and write-ups gave me a shock as there seemed no hope. I turned to Facebook and completed a search which gave me so many Lawyer sites; however I did come across Debbie Brewer’s Facebook which led me to a wonderful community of patients around the world called The Meso Warriors. Debbie and I became friends and together we created more groups. I started the Q&A page so I could ask all the questions I needed and there are groups for other needs such as: Mesothelioma Articles Groups with new trials and news so we can always be ahead and up to-date and also blogs where warriors can tell their day-to-day stories of their fight.
Meso Warriors and Carers groups to help carers understand the diseases as well as get help when needing to cope. Individual Groups that are secret where each member can put their personal thoughts and stories and share with their own friends and family.
We even have a Tears Page for the partners that have lost a loved one so they share their lives afterwards. It’s amazing how that helps in so many ways. Post-mortems and wills and the day to day help to live again. This has all become so successful that the world has joined in and we have members from America, Australia, and many other countries who learn from each other how the world copes with the disease. Also we fight for the ban of Asbestos and how to manage it in the buildings.
The British Lung Foundation previously ran a campaign called ‘Take Five Stay Alive', which I made a video for as well as appearing as the centrefold in their annual report.
Suffering from Mesothelioma, I wish we could take Asbestos out of our lives or the closest to zero that could be humanly achieved. There is no statistical data as to the amount of fibres breathed in over time that can be medically proven to have caused Mesothelioma. I had my exposure from washing my husband’s work clothing, and many people have suffered and are going to suffer from asbestos as a result of unintended exposure. Although the use and importation has been prohibited in Europe since 1999, people continue to be exposed to asbestos in our built environment. For the sake of future generations asbestos must be removed from the world we live and work in. To do that I believe it requires professional companies operating at the highest standards to continue to remove this category 1 carcinogen safely and make our world a safer place. I fought against it by having chemo and now my last chance is MK3475, an immunotherapy treatment which is shrinking my disease very fast. For how long no-one knows at this point. Although my latest Scan has shown no sign of Mesothelioma in my tumours I can’t wait for my next scan just to make sure that really is true as it seems so unbelievable. I fight on for the future and all our Meso Warriors past, present and future.
To follow Mavis’ journey visit the Ray and Mavis Blog
To purchase a copy of the publication Five Years a Mesowarrior
Read more about the Mavis Nye Foundation
Living with Mesothelioma
February 12th 2014 was the day my life changed. I was 61 and easing myself into retirement by working part-time for what should have been 3 or 4 years.. I had no reason to believe that I had cancer of any type but that afternoon I was hit with the news that I had one of the worst. Mesothelioma. Invariably terminal with average life expectancy 6 – 12 months and only 5% of people living more than 3 years. Immediately I put myself in that 5%. I was relatively young and it had been identified early. There was no way I was going to die yet!
We will never know for sure where my exposure to asbestos was, although it is likely to have been when I worked in a dry cleaning shop in the early 1970’s. Everything was lagged with asbestos back then. But it doesn’t matter really where I got it from, I had got it anyway.
My knee jerk reaction at the time of diagnosis was to have surgery to remove the pleura – the lining of the lung – and with it the cancer. This was a major operation carried out only three weeks later. I was lucky in that my surgeon was able to remove all the cancer he could see. He couldn’t remove what he couldn’t see and he guaranteed that it would come back, he just couldn’t say when.
After eight days in hospital I came home to complete my recovery, within a couple of months I was able to do most of the things that I had done before. I chose not to go back to work.. I planned to make the most of whatever time I had. My good health continued for over 18 months during which time my only problem was nerve pain resulting from the operation. However, a routine CT scan showed that the cancer had come back - it was time for the next stage in my treatment. I put off the chemotherapy for 3 months while I made a trip to Disneyland Florida with my daughter and her family. I wanted to see my grandsons enjoy the experience, - I wasn’t going to miss it for chemo! I also took a short cruise to Iceland with my husband where we saw the Northern Lights – a long held ambition.
I started chemo as part of a trial in March 2016. The trial had a placebo arm but I wasn’t bothered at this stage as without the trial I would only get the same chemo anyway. I was very fortunate that I didn’t suffer too much through the chemo and after four cycles my cancer had shrunk. I always felt I had the placebo and eventually this proved to be the case. I tied myself to weekly treatments and severely limited my life for no further gain. That it the way of trials though.
All was well for another few months but then the cancer started growing again so it was time for another treatment. This time it was another trial drug on its own. There is only one chemo option for mesothelioma so without the trials options are very limited. I started this trial in January 2017 and lasted 12 weeks on it before I was told that the cancer was growing and so I was off the trial again. This particular drug had not suited me well and I gradually deteriorated so that I was unable to lead a normal life and even had to give up driving for a while. At this time I thought that this was where it would end for me.
However, once out of the trial I took a break of about eight weeks during which things were just monitored and, of course, the cancer was growing all the time. I was in severe pain, had tried a couple of morphine drugs before eventually settling on methadone. This seemed to deal with the pain for me, with less side effects. During this time my red blood cell count was falling, I had two blood transfusions to try to rectify it. I was also losing weight due to lack of appetite. In the end during 2017 I lost 2 stones in weight. This was turning out to be a very bad year!
August 2017 I enrolled on another trial, this time an immunotherapy drug. Immunotherapy is giving some excellent results, I was optimistic that this would be the same for me. Unfortunately, I proved to be allergic to something in the drug infusion they were giving, so on the third infusion I had to stop and was again taken off the trial. I was very disappointed but if it had to be then I wanted to go back to chemo to try to reduce the tumour. This proved not to be necessary. The CT scan taken immediately after the last treatment showed the cancer had stopped growing then six weeks later that it had shrunk by about 30%. A totally unexpected result as by then it was several months since I had received any treatment, and then only three doses.
My health improved throughout this time and the pain reduced so that I was able to forgo the methadone at the start of 2018. I am now healthier than I have been in the last two years, although I don’t have the stamina that I had. My last scan at the end of 2017 showed that the cancer hadn’t changed so I now have another 3 months of freedom before I get another scan to see how it is going.
I find it hard to believe that something that I haven’t had for five months can still be working, but the evidence shows that it is and I am eternally grateful. I have broken the three year target and feel that I have a few more years left in me yet. This is a pleasure not given to all mesothelioma patients and in this time I have lost several friends to it. I am not cured but at the moment the cancer is held at bay and I can live my life instead of waiting to die.