A Diary Of A Mesowarrior #mesothelioma #asbestos — The story of a Mesothelioma Patient Sunday the 24th Nov 1919 is the 20th anniversary of the banning of White Asbestos.
The story of a Mesothelioma Patient
Sunday the 24th Nov 1919 is the 20th anniversary of the banning of White Asbestos.
White (chrysotile) asbestos was banned in the UK in 1999, nearly 15 years after the first asbestos bans. This 1999 ban made the manufacture and supply of all asbestos products illegal in the UK. But so much had been used through the Industrial world in properties that were being built after the war that the problem was hidden, hidden until someone drilled a hole or renovated a house or even decorated a room. We then had the line of mesothelioma and other Asbestos diseases rise and rise.
I became a victim at the age of 15 as I met Ray and he was working in the Chatham Dockyard as a Shipwright. Ships had so much asbestos in as a fire protection it was right through a ship. When Ray came to meet me in college he had the dust on his clothes and I was breathing it in.
We married after his National Service was finished in 1960 and we had a family so we lived such a normal life until retirement when I was 60. We sold our house, bought a Park Home and a larger Motorhome.
We were set up to go to Spain to our son for winters and Whitstable for summer. WRONG!!!
We went to Spain for Feb 2009 and had a lovely 2 months sharing time with our son and daughter in law, we were in the Benidorm hurricane that caused a fire in the mountain by our sons Villa and had to evacuate so we travelled around and saw so much of the area it was a great day for us in the end except our Motor home was sooted up when we got back to the villa.
Back home I had breathing problems and a numb arm that after going to the Doctors he said I had a trapped ulnar nerve and ordered a x-ray which I had.
Then I went to vote on polling day but just couldn’t breathe but when I got home the phone was ringing and my Doctor told me to get to A&E as a bed was booked for me. The x-ray had shown a mass he said.
I did as I was told and I had 7 Litres of water drained from my lung. It had collapsed. From the fluid they grew cultures that showed Mesothelioma.
I had to travel to Guys Hospital for a Pleurodesis which is a procedure that uses medicine to adhere your lung to your chest wall. It seals up the space between the outer lining of your lung and chest wall (pleural cavity) to prevent fluid or air from continually building up around your lungs My lung inflated and I was OK.
This led to 4 years of Chemotherapy. 4 treatments with grow back each time until I became to toxic—No more treatment.
I couldn’t accept that and when a Professor suggested I get a referral to the Royal Marsden I listened and was soon under the Drug Development Unit with Prof Bono.
He had me in the MK3475-28 trial and I was on the new drug Pembrolizumab — This study will assessed the efficacy and safety of pembrolizumab (MK-3475) administered to participants with incurable advanced biomarker-positive solid tumours that have not responded to current therapy or for which current therapy is not appropriate. 28 Cancers were being tested only 3 places for Mesothelioma.
The trial was for 2 years in 2014 -2016 and I had complete response.
This gave me 2 free years to live so normal.
I had become a Asbestos Advocate talking to all the people involved with Asbestos. I want the younger people to stay safe when working with the dangerous Mineral. I always say “It killed us going in and it will kill us as it is removed”
I found myself travelling to give Presentations all around UK and Europe.
My own Charity was started also so I was fund raising in this time for The Mavis Nye Foundation.
I also kept the Face Book Groups running to help other mesowarriors to find information trials and treatment. I have made so many friends. Its been a full life and then 2018 the day we so dreaded came a scan showed growth. Not from the old Meso but completely new growth.
Lucky enough I had it in my trial papers that I could have the drug for 2 years if if it did grow back so I became the first person in the world to rechallange the drug for Mesothelioma.
A year all was well I had 14% shrinkage in 2 infusions then a scan showed the cancer had got cheeky and stopped the drug working.
I was then offered the New Hyper Trial Phase 1
This trial is for people with a solid tumour that has spread or continued to grow despite treatment (refractory).
Researchers are looking for new ways to help people with solid tumours that have spread or continued to grow despite treatments. In this trial they are looking at a new drug called guadecitabine.
Guadecitabine is a type of drug called a demethylating agent. It helps the immune system to spot the cancer, which helps pembrolizumab to work better.
Guadecitabine is similar to a drug called decitabine. Decitabine is already a possible treatment for people with acute myeloid leukaemia (AML). Doctors think that guadecitabine might work better than decitabine, but they need to find out for sure.
Pembrolizumab (Keytruda) is a targeted drug called a monoclonal antibody. It stimulates the immune system to fight cancer cells. Pembrolizumab is already a possible treatment for people with non small cell lung cancer (NSCLC) and melanoma.
This trial is in 2 parts. In the first part, researchers wanted to find the best dose of guadecitabine that you can safely have with pembrolizumab. This part is now closed. Researchers are now looking for people to join part 2.
In the second part of this trial, everyone has the best dose of guadecitabine and pembrolizumab found during part 1. Doctors want to find out how well pembrolizumab and guadecitabine work and the effect it has on the body.
Im not finding the right level of Guadecitabine and my bloods are to low but they have adjusted the dose and 25% seemed ok but this week i showed it wasn’t working so Im waiting to see what their plans are. Reduction agan I suppose. All the patients on the trial are having the same problem BUT I have stable at the first Scan and Monday i have another scan so pray its shrinkage as the Pembro might have kicked back in to work. We will see.
I have given 3 Bi-Ops where they are looking at my DNA before the trial and during. They want to know how a cancer can turn the drug off what my DNA looks like before this trial but above all why I responded so well to Prembro as I only had 1% PDL 1
So many answers are in my body so Im pleased to help.
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