I was a war baby born in 1941 and I had lived a childhood that was just normal and happy. I met the love of my life at 15. Ray was an apprentice shipwright in Chatham Dockyard and as his apprenticeship was completed at 21 he was called up to do National Service. In those 2 years I was finishing my education at a Technical School and then became a trainee chef at the Bull Hotel Rochester. We married in 1960 as Ray had returned to the Dockyard and we settled down. He used to come home covered in a white dust that I brushed out of his hair, then shook his clothes and washed his clothes. Yes I had a washing machine in those days. We now know that the asbestos he worked with in the ships was to have such awful consequences.
2009 Forty-eight years later I found I couldnt breath and was ruched in to have 7 litres of fluid drained from my Lung I was diagnosed with Mesothelioma and a death sentence of 3 months. I didn’t, I couldn’t accept that and after my pleurodesis at the Guy’s Hospital in London, I started my chemotherapy, Cisplatin and Alimta which is the standard treatment in the UK I got shrinkage and this worked for fifteen months then started growing again. I was offered the NGR-hTNF trial at Maidstone, a clinical trial that 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 again, I became allergic to the chemo 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.
2013 I emailed Saint Bartholomew’s Hospital and that Friday I was in an appointment where they offered me the last place on the ADAM Trial, but it would mean another Bi-op 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. The marker tumour was 17mil. 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.
2014 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. I was on the Immunotherapy drug from Merck (MSD) a Phase 1 trial. It isn’t just for mesothelioma but 30 other Cancers but the trial, MK-3475, is a drug (Keytruda) being tested as it blocks the interaction of a substance called PDL-1 with PD Inhibitor. Cancer switches off the Immune System and the drug swtches it back on so you can fight the cancer cells. With Journeys to the Royal Marsden at Sutton Surrey for 2 years I had 53 Infisions infusions and the drug and no side effects as it isn’t Chemo and I showed a gradual shrinkage of of 100% with tumours disappearing. On my last Scan I didn’t need to get a print off this time. My Doctor said there is no active Mesothelioma in my Lungs. The tumours are there, very small but there is no active Mesothelioma in them.???
We couldn’t take that in, there was a silence and we just looked at one another. My thoughts on all this is now Why! Why me?? There were about 3 Mesothelioma Patients that started the trial in the UK and sadly Im the only one to still be on it. The others failed so proving it isnt a drug for everyone. My bloods were taken every two weeks and my DNA was looked at by Merck but I haven’t had a clear answer as to why me ? The drug has been very kind with no side effects except very dry skin that causes a itch and a rash but Steroid cream is working on that. Constipation, I cant see anything else has been a problem.
It builds up a little army that remembers when it see’s the Mesothelioma again and attacks. So the effects should last a long time and stop any tumour from progressing again. If it did show I can go back on the drug for another year which is so good to hear I have a back up plan. Being honest the treatment has worked for me and currently there is no active meso but there is still a long way to go to getting a cure for this terrible disease, but this is a step in the right direction The fact is that all the Mesothelioma patients that started the trial with me have now all passed We mustn’t give false hope. But We can give hope xx
So now I have thrown myself into my work as a patient rep within the NHS and Cancer research even approving new trials as a patient rep.I also have pushed Asbestos Awareness speaking in Holland at the European Asbestos Forum and in the UK, as this is where the Awareness is needed, although Asbestos is banned it is in so many places in buildings built before 2000 and 85% of our schools.Even The House of Commons and Buckingham Palace we are still surrounded by the deadly material and it has to be managed an removed safely.
Rays Story of Guilt
After Mavis had twisted my arm into talking to you today I put together these notes.
So This is my brief account of how mesothelioma has impacted on me. It started 7 years ago in 2009. After returning from a 3 month stay in spain Mavis began having breathing problems. An urgent appointment with our GP and An emergency admission was quickly arranged. This was to be the beginning of 7 years of heart ache. A diagnosis of Mesothelioma was made. We were told its Terminal there is no Cure. Prognosis was around 3 months. That’s 12 weeks. 12 short weeks. Can you imagine how that news exploded in my brain. We had been together 52 years . since Mavis was 15 years old we have grown up together. Now something that I unwittingly brought home on my clothes over 50 years previously was going to be my thank you for all those years. Her death sentence… So now I became Mavis`s carer. I don’t have to tell you what this insidious disease can do. We were never told that it was dangerous never given protective clothing. In shipbuilding It was just an every day substance that we worked with , worked around. And worked amongst. I am sure that if we were told Wow watch that stuff it could kill you. Most of us would have run a mile. This mental pain has been with me through 4 different chemo regimes . and 3 trials and a pleurodesis. I was Powerless to stop it or make her pain go away. Can you imagine how useless that made me feel Watching the person you love the most slowly dying. Some time later an avenue of hope was offered a trial in Maidstone. But this was cut short After a few sessions It did not work. It was such disappointment. Next a last chance offer of a trial in London. Several more weeks of consultation and tests and biopsies only to be told sorry you do not fit the criteria. Devastated we were referred back to our Local Hospital for one more go at chemo. You know the score A 12hour day connected to a bag of chemo every 21 days for 10 months. Each infusion gave us about 10 days of sickness with her head down the loo. Then 10 days recovering only to start over again. At the end of those 10 months a scan .We get the news sorry its just not working Your tumors are growing again. We have nothing else we can give you. Go home and do what you need to do. Stunned silence. Followed. But Mavis was not prepared to sit back and just die. She said I will not accept this.She set out in search for something else.
She is heavily involved as a mesowarrior and in helping fellow sufferers By doing this she has many contacts. Now due to a chat with Prof Dean Fennel with whom she had become friends ,he advised her to talk to the Royal Marsden As there was a trial geared to mesothelioma. It took a few more agonising weeks But We travelled to Sutton to speak with prof De Bono. MORE Agonising weeks passing in which I could only sit and watch her condition deteriorating fast. She was by now in a bad place. Unable to walk ,supported by a walking frame and sticks. Constantly falling over. On one occasion she fell flat on her face on the pavement. Her glasses smashed narrowly missed her eye as the stem dug deep into her face. Our Dog just sat down beside her watching. I am sure he was thinking this is not the place to sleep mum. We ended up in the accident centre for treatment. She then had to explain to friends where she got the. Black eyes and scars. . . Eventually the Marsden letter arrived YES she had been offered a place on the mk 3475 trial now known as the keytruda. We can start in May 2014. Without going into detail it was an infusion every 2 weeks and would last for 2 years. We are now only weeks away from the end of that 2 years. You can see for yourself how well Mavis looks. Yes she still has issues Lots of Meso and chemo damage she has suffered is not visible or repairable. During this trial each scan result had good results with various degrees of shrinkage or stability. Up to August 2015 we were so happy with 80% shrinkage. BUT We were un prepared for The scan results we had in November 2015 they were stunning. Quote” Some of your tumors are no longer visible and those that remain have shrunk to 1mm or less. And those tumors show NO evidence of mesothelioma. OMG that’s the best news we have had in over 7 years. Continuing with fortnightly treatment and a further scan in January of this year. The results which we were dreading because Mavis said This good news cant continue. But the results were NO evidence of meso and no additional tumors visible. Fantastic News! Once more we continued with treatment Now today I can bring this ,journey up to date The latest scan results taken on 19 April only a few days ago show It was described as THE PERFECT RESULT. That’s a nice way of saying Remission. Now we hope to live the rest of our lives in happy cancer free days.
And now to end this journey on a lighter Note: During this period of becoming a Carer. I have become quite domesticated. Those bits of crockery sitting in the bowl . I can now wash them up. Not only did I find a hoover in the cupboard I can work that too. I have mastered the washing m/c and the tumble drier. Top of my domestic degree is using the microwave. But saving the best till last. I began learning to cook now for me that was worth a cap and gown. My general housework skills now are second to none. My diploma must be imminent.
I now just want to conclude by adding my eternal gratitude to ALL the Doctors and nurses that we have met along this journey . my heart felt thanks is un measurable. They will never fully know how grateful we are for our treatment. Without your dedication Mavis would not be standing here today. Bless you. All.Finally I have a special thank you to Peter Rawlings from MSD .The company that made the Drug Keytruda. Thank you Peter to you and your team, for without the intervention of this wonder juice The Doctors and Nurses could not perform this miracle . And Mavis wouldn’t be here with me today.
Thank you Peter
So! This is How Mesothelioma has Impacted on Me.
-Mavis & Ray Nye