Living With Mesothelioma -My Diary- I have started the MK3475 trial today.


Today was the day to go to the Royal Marsden to start the  Trial MK 3475 which is a drug being tested as it blocks the interaction of a substance called PDL-1 with PD Inhibitor. PD-1 is present o the surface of cells of the immune system that fights cancer. However, when these normal surface cells encounter cancer cells PD1 becomes inactive d by PD l1 which is found on the surface of the cancer cells. This has the effect of making the immune cells die or become exhausted, and stopping them from attacking the cancer cells. Blocking PD 1 with MK-3475 means that PDL1 cannot inactivate it and allows the immune system to start attacking the cancer again. Putting it into easy words he said that they have found that tumours  have a switch to turn off   the Immune system and put it to sleep and so the tumour can grow away. We switch the Immune system on and wake it up and they say (come on there is a burglar in the house. destroy )

We got out early this morning as once again we had to meet the M25, which was very good just slight hold ups. They call the Phantom hold ups as you never see why it happened.

Arrived and booked in. We waited to see the doctor who shook my hand and said Mavis Nye I have heard so much about you and all you do for Mesothelioma. I have had a female patient as well and she has sung your praises. Because of protocol I cant name her —-Please you know who you are and you have seen all my writings about the trial and have been to the Royal Marsden to talk about it. Please get in contact with me as you will be the second woman on the trial if your Bi-Op passes..

The Doctor gave me another examination, beating all around my lungs and listening in. He said the bottom of my left lung is restricted but the scan showed that anyway so no surprise there.

I then had to wait and wait. We had coffee and then Dinner.

The company making the drug had not been informed I was starting the trial.

The drug had to be Registered as well. Shambles at that point as I cant see why they weren’t told.

2.30 The drug arrived. I sat down and had bloods taken and the man next to me was having bloods taken. I said have you got Mesothelioma and he confirmed. So we are the first man and woman on the trial. I pulled rank as like twins, one them have to be born first and my line was put up first .

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We both said here we go this is going to be the one.

We swapped stories and I asked if I could put it here on my Blog as a guest blogger.

We will be able to talk about and compare how we feel and any side effects.

So thats it the drug is in so we will  have to wait and see how it goes now.

Rays blog http://mesoandme.wordpress.com/2014/06/16/monday-90/

Guest Blog —

Alistair E Hault, RN Retired

A Stokers Story….

On a cold, wet February morning in 1964, a lone youth stood, suitcase in one hand and travel warrant in the other, waiting for the train which would take him on an adventure of a lifetime.  It seemed forever since the day he had walked into the Naval recruiting office on Green Lane in Derby to join the Royal Marines and for him to come out, an hour later, having taken the Queen’s shilling and joined the Royal Navy.  Some recruiting Chief Petty Officer had persuaded him that, having worked for 3 years, since leaving school, as an apprentice Plater/Welder, he would be better off and more useful to the country as a Stoker.

The long journey from Derby to Plymouth seemed to go very quickly; after all, it was an adventure, like the Enid Blyton’s Famous Five books he had read as a boy or even Biggles.  The train pulled into Plymouth station later that day; new friends had been made on the journey doing the same thing.  Gone were the worries of what lay ahead; we were all in it together and the team feeling had begun.

Outside the station stood a row of dark blue Navy lorries like buses at a foreign holiday destination and we all piled on after being checked off a list by lone Leading Hand.  Over the Tor Point ferry and on to HMS Raleigh for a day of haircuts and knitting out with uniform.  Later on, the relaxation in the NAFFI Bar for the ones old enough to drink and some that were not.

Next day the early start of the beginning of training on the Parole Ground (got to knock the idea of “civvy life” out of you and instil some discipline and did they ever do that!).  This day was put aside for splitting recruits into divisions (named after Admirals) and allocating mess dormitories.  Five weeks of knocking “civvy street” out of everyone and instilling “The Navy Way” into you.  Then the hard work began with the introduction of Trade training and the first introductions to the inside of a ship, although on land.  Pipe work, Admiralty three-drum boilers, system layouts…….all had to be learnt; examinations had to be taken.

Doing the trade introduction was the first time we came across “LAGGING” pipes.  They were covered in a white painted substance.  Little did we know that although it was there to protect us it was a killer waiting, in later life, to creep up and kill us.  During this training period was the time recruits were introduced to the “real Navy”.  The frigates, old WW11 destroyers converted into type 15 frigates with all the old machinery, engines and boilers, all of which were covered in lagging.  Every engine part that got hot was covered in this white covering like plaster of Paris.  Little did we know that this was asbestos and it was a killer.  No-one knew in the 1960’s what asbestos was, just that it stopped you getting burnt by the hot steam pipes throughout the ship and, believe you me, there were a lot of hot pipes, even in a small frigate.

After my trade training and an extended special course to get my rank early I was drafted to my first ship of the line HMS Eagle, a Fleet Aircraft carrier and a big ship.  Duties on board were mainly watch-keeping in the engine rooms, boiler rooms, gear rooms and fridges.  All of these areas of watch-keeping were full of pipes lagged with asbestos.

Two years on board HMS Eagle were some of the best years of my life, travelling the world from Mombasa to New Zealand and beyond; long stays in Singapore, Hong Kong, then back home to get married and go through the problems of living accommodation.  Starting firstly in a one-roomed flat in Southsea in the middle of winter with a one-ringed electric stove to keep warm.  Then the luxury of a three bedroomed flat on Portsdown Hill, Portsmouth overlooking harbour and dockyard.

During this time I was working in Portsmouth dockyard on numerous ships under the flag of Fleet maintenance.  This involved day after day stripping lagging off engine room components to get at them to be maintained and then re-lagging them by a special lagging party.  Two years of this and then a draft to HMS Triumph in Singapore dockyard for 2 years married accompanied and living in Malaya, on call to go to ships needing maintenance in Mombasa, Bahrain, New Zealand, Hong Kong doing maintenance and dealing again with asbestos.  I didn’t really stand a chance!

Did I join the wrong branch of the Navy?   I didn’t believe so at the time.  If I had been a seaman instead of a stoker would I have ended up 40 years later with mesothelioma (asbestosis), probably not.  No-one knew then, not even the Big Boys in Whitehall or did they?  I was proud to serve Queen and Country and wouldn’t change it one iota, but I would have liked to have been looked after better by those who should have known better.

In 1973 by term of service ended and I joined the Derbyshire Constabulary.  I had no further contact with asbestos during the period 1973 to 2002.  I retired from the police in 2002 and it came all too quickly.  My retirement really started then; walking was my big joy – Cotswold Way, Great Glen Way, no problems!  Snowdon, no problem and I don’t mean on the train.

Then came the day walking in the Peak District in Derbyshire.  It was a winter’s day and I came to a hill which normally would have caused no problems but this day caused big problems.  I was unable to breath and I thought that I had caught something but I put it down to a cough and the flu/pneumonia jabs that I had recently been given.

A week later, after I was starting a cruise in New Zealand, when I came to a steep hill in Auckland I had to admit that something was wrong.  Badly wrong!  I carried on with the cruise and came home.

A few days after returning I visited the Nurse Practitioner at my local surgery and was treated for an infection with antibiotics and also had an s-ray.  I was lucky that they had an x-ray department at the health centre.  The results of the x-ray showed high levels of fluid in my right lung.  I was referred to Royal Derby Hospital and I was diagnosed with mesothelioma.  I was lucky again because a thoracic surgeon was there at the time from Nottingham City Hospital.  He offered me certain options, one of which was radical surgery to remove the outer layer of my right lung to try to eradicate most of the cancer developing there.  I went for that option and 4 weeks later, at Nottingham City Hospital, I underwent surgery.  I went through a lot of pain and discomfort but it is now 3 months since the operation and I am on the mend.

I will be going on holiday to America in September; I made this my target right from the outset.  It was always my first question to all the professionals that I have seen.  “Will I be able to go to America in September?”

One person who helped me greatly to sort out what I needed to do was an employee of the Asbestos Helpline, Colin Tunstall.  One thing he told me was to get in tough with the Veteran’s Association.  I completed the claim form and they did all the work that was needed for me to get a War Pension which I was awarded some weeks later and payable for the rest of my life.  As I was a member of the Royal Navy when I contracted this disease I was unable to sue the Crown.  This is because there is immunity to prosecution for anyone exposed to asbestos by them before 1987.

One thing I told Colin was to be positive; it’s not the end of the world if at time it might seem to be.  There is a story in Norse mythology about the “Tree of Life”.  Under that tree sit 3 spinners, spinning everybody’s fate.  If your fate is that your time is up there are no surgeons in the world that can change it.  “Que sera sera!”

 

 

 

2 thoughts on “Living With Mesothelioma -My Diary- I have started the MK3475 trial today.

  1. Hi.
    I like your friend Ray worked in Devonport and also on board the Eagle, which was a big ship with lagging everywhere. I was a fitter and every chance when lagging was being removed I tried to keep clear. I have heard stories that even some office girls ended up in the same trouble.
    Another point is that the dangers of asbestos were known about in 1948 but the powers to be did not act, or provide the protection needed.

  2. Dear Mavis,

    My mother and I are living in Germany. I wish you all the best from the bottom of my heart. I hope so much, that this is the breakthrough.

    My mother was diagnosed with mesothelioma in 2011. I am very interested in the PD-1/PD-L1 trial at Royal Marsden. My mother´s PD-L 1 is significant positive/expressed.

    Would you please get in contact with me?

    Thank you so much and all the best!

    Chris, Germany

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