Diary Of A Mesowarrior Living With Mesothelioma.-No Transport, A Skype Meeting With Some Mesowarriors and My Doctor.Patients Being Listened To.

Yesterday was such a busy day. The car was taken away for the first MOT and the last free service. It was on a collect and return which we was pleased about but then realised we had no wheels for the day. Louis played up as he missed his trip out.

Sulked all day.

I then had arranged for a mesowarrior Skype meeting with my Mesothelioma Team Doctor. I’m his patient rep for Research and he is arranging funding for a trial and wanted a patients view on Chemo, was the trial worth while and had asked me to arrange a meeting with other Mesothelioma Patients.

As we are all on Skype that seemed the best way to do it but my Doctor wasn’t–well he is now and he loved the experience.

I didn’t have my picture on though and I didn’t want to touch and have anything go wrong. Afterwards it was so easy as the symbol was there and I only had to click but anyway he has seen enough of me through the years .

Another problem was that one of the mesowarriors had only just asked me to accept her and so the meeting had started and try as I might I could get her added. I was so sorry and will make sure she is in on the next one we do.

We all had a chance to hear what the trial will entail and we were all able to put our thoughts across. I feel the doctor really did know what a patient of mesothelioma goes though and he listened intently to our views.

He really did love the experience and asked if we would do it again so we are always here to help. we will get minutes of the meeting sent to us which surprised me that it was such an official meeting. It is the way the world has come into the 21 Century and Computers do play a great part as we sit in our own home and yet can have an important meeting like this.

So when it was all finished and turned off I really felt it was a job well done.

I had a neighbour visit and was asking about halogen bulbs why they don’t last long and we had a chat and she went home and we had lunch.

Then I had a phone call to do an Interview for my local paper about the Governments U Turn on the £10,000 up front payment the Government had wanted to charge when a Compensation Claim was made. I said that had happened in July and I had blogged on the 3rd July. He was surprised it was that long ago and I realised that I’m missing out and I really should talk to him more when I have news of things going on.

He also talked about my Drug Trial and how I was doing so he is really going to write a longer piece now for next week.

When the phone was put down I thought I would write an article I had been asked to do for November but I was in the mood and I spent a couple of hours then  writing away. That has been emailed off so I have a empty to-do list.

I have a speech to write for Mesothelioma Uk when ray and I are going to do a duo speech which will be fun. We are all booked in for Stratford -On Avon and a lovely Hotel there

Picture of Macdonald Alveston Manor

Date: Friday 2nd October 2015

Registration: 9.30 am

Venue: Macdonald Alveston Manor, Clopton Bridge, Stratford-upon-Avon, CV37 7HP
Aims to give mesothelioma patients, carers and relatives the chance to meet and share experiences with others, to give up-to-date, unbiased information about mesothelioma and to give patients, carers and relatives the chance to raise issues and ask questions.

Patients, Relatives and Friends can attend free of charge.There is a charge for all other attendees, please see registration form below.

Due to the size of the venue priority will be given to patients, relatives and friends.

The programme for the day will include:

  • Understanding trials
  • Trials update
  • Patient stories
  • “Well being session”
  • Asbestos awareness
  • Fundraising for MUK – a fundraiser’s story
  • The role of the MUK Benefits Adviser

http://www.mesothelioma.uk.com/news/events-conferences/2015/patient-carer-day-2015-stratford/

So I’m really looking forward to this and meeting up with so many friends old and new.

We have some very sick Mesowarriors at the moment and I send all my love to them and their Carers. I hate that they are so ill and hope all the trials we have discussed will help them at the various hospital. Those that have got appointments at the Royal Marsden i hope to meet up with but we are not there on the same day. I always do ask every Tuesday if any one is there with Mesothelioma just so I can then say hello.Most of them are on 3 week cycles and so my 2 weeks means I don’t see them for a while but we do keep in touch.

One Mesowarrior had surgery yesterday and his family are keeping me informed on how he is doing. He wasn’t out last night so I’m on tenterhooks waiting this morning.

Just checked and no news maybe he is sleeping still I wish him a speedy recovery.

Rays Bog https://mesoandme.wordpress.com/2015/09/03/thursday-135/

Diary Of A Mesowarrior Living With Mesothelioma. – Asbestos The Truth 2015 and meeting Fred Dinenage–How??

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What a wonderful day after a very bad start.

We had to get up early to get to London to the Asbestos the Truth 2015 Conference.

We went to the station with plenty of time only to find our train was cancelled. Not because of anything technical but because someone didn’t turn up for work. Ok he might have been ill but why didnt they have spare staff or extra overtime for someone..

You cant imagine the sinking feeling when you have to work out how to get around it.

The ticket office was closed so we couldn’t ask. The next train was going to Blackfriars so it would have meant all the jostle of the work rush. The lady came back to the office and said go to Faversham on the fast train and change there for the connection to Victoria but you wont arrive until 1021 so we had to resign ourselves to being late. Late isn’t in my vocabulary.

We did finally arrive at 10.21 and found the Victoria Park Plaza. very handy so near the Station.

We had Missed  Fred Dinenage and his opening speech and Phil Rozier Director of Lucion Enviromental.

Ross Folley Reginal Manager was a very welcome face and he saw that Ray and I was all sorted out and seated into Our first Carousel Session 1 —-Desired Airflow. Richard Anderson PAT Ltd had a special thickness polythene cages that the men work in as they strip asbestos from buildings. With a smoke test he showed that there are air pockets at the top so although the readings of asbestos showed clear as it was cleaned out at the top asbestos was in the air pocket   went on to talk about the practicalities of achieving the desired airflow for the removal enclosures.

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Out of there we went to Darren Payne Rhodar Ltd who gave a really great talk on what HSE licensed contractors do-What you will hear and see on site. the bits we dont usually see. he talked about all the equipment that is used so many different types. Things that might that may charge the cost and notification

He told us about his firms contract at the South Pole to remove asbestos from a research station.

During their time in the Antarctic the men removed asbestos from a research station owned by British Antarctic Survey BAS, who look at a number of things ranging from the ozone layer to marine biology.

During the first phase of the project in March 2000, the men were faced with temperatures as low as minus 43 degrees Celsius.

It was time to go for a break.

Next we had a talk from Christian Mccale of Innov8 Safety Solutions who spoke about CDM2015 Update Straegy.

CDM 2015 took effect from April and the transition period nearing the end 6th October 2015

Asbestos is one of the most complex hazards facing construction projects, now with the introduction of CDM 2015 many mistakenly believe that the regulations – which came into force in April are only triggered with regard to asbestos removal in certain circumstances.

But crucially the new laws cover the de-commissioning, demolition or dismantling of a structure and the removal of any resulting product or waste.

On the 6th April this year CDM 2015 took effect, with the transition period nearing an end (6th October 2015) Project Director of Innov8 Safety Solutions, Christian McCale aims to tackle the problem head on by clarifying the main changes brought in by the Health and Safety Executive (HSE) and the role of the new principal designer and principal contractor.

Innov8 Safety Solutions, which is part of Lucion Services, are committed to delivering the very best CDM (Construction Design and Management) and construction site safety solutions to a diverse range of clients across the public and private sectors.

Innov8 have recently embarked on a wide-scale campaign to raise awareness within the industry about the implications of the changes, even setting up a CDM knowledge centre on its website.

http://www.innov8safetysolutions.com/cdm-2015-update-strategy-innov8-announced-conference-speakers/

We stopped for lunch where I met some really nice people. Are you Mavis said one. I had an email from Yvonne about you last night. Yvonne Waterman of European Asbestos Forum had wanted to come from Holland but her father was in pain with gout. Hope he is OK x

Fred Dinenage was in the outer room and was having a photo  session. I went up and spoke to him as I have done many interviews for Meridian and yes he knew my name and gave me lots of cuddles. swoon !!

fred2

fred4fred5

Then another two men said Are you Mavis I have read about you. He and his colleague oversee the stripping and management of asbestos  in Leeds Hospitals.

Dr Chris Warburton spoke after Lunch Asbestos related disease medical updateMesothelioma continues to cause misery for families across Merseyside and Cheshire. This is a dreadful disease which was avoidable in most cases. We must continue our vigilance to make sure that future cases are reduced to a minimum. Action Mesothelioma Day is an essential way to raise awareness of this condition in the population most at risk of developing it”

He showed different CT scans and Xrays. as a patient they were very familiar to me but was educating the audiences.

Martin Stear  Workplace Environment Solutions LTD was next and gave a very worry talk. Asbestos management vs removal. Tthe former HSE Principal inspector delivered the session “Asbestos Management vs Removal”. Taking to the main stage Martin looked at the legal and financial implications of managing your asbestos against removing it now. He  discussed why duty holders have been getting this wrong for over 3 decades.

In addition to Martin’s own discussion, event organisers are also welcoming the submission of questions from the audience prior to the event.

Martin is a graduate chemist, Chartered Occupational Hygienist and Registrar of the BOHS Faculty of Occupational Hygiene. He has over 30 years’ experience working in consultancy and for The HSE as a Principal Specialist Inspector with a technical policy role for organic chemicals and carcinogens, including asbestos. He left The HSE in 2004 to set up an independent consultancy, advising companies on all aspects of occupational hygiene and asbestos (Workplace Environment Solutions Ltd). Martin is regularly called upon as an expert in criminal prosecutions and civil litigation.

What he was saying was that companies need  to manage asbestos better. It seem a building can have several surveys that are unnecessary if the first cleaning was done properly. Photos taken to prove it and records kept. for comparing.then a second survey company comes along several years later and the Primary Manager can then show proof an area has been cleaned so no survey needed. What is happening is that if it isnt down properly then a little dust might be in a room and a second and third etc survey picks it up so an area has to recleaned time and time again.

The cost is mounting up when all it needs is a good company bought in for the first clean.

After a break for coffee

HSE, Principal Specialist Inspector Dr Martin Gibson, Over the past 10 years Dr Gibson has been involved in much of HSE’s work on asbestos including: the development of the Control of Asbestos Regulations (CAR)(2006 and 2012); and production of technical guidance on asbestos such as the Licensed Contractors’ Guide” (HSG 247), the Analysts’ Guide (HSG248), and the Survey Guide (HSG 264).

,Changes to the 4-stage clearance procedures

  • Engaging Analysts: Clients expectations
  • Decontamination procedures for Analysts
  • Soil surveying and sampling for asbestos
  • Surface contamination: interpretation of results
  • As the HSE hasnt printed the new rules yet I don’t think I should repeat but I will copy when they have published at the end of month.

Well that was it  Fred Dinenage, who is one of the South’s longest-serving broadcasters whose connections with ITV go back to the 60’s. His television career began in 1964 with Southern Television, and he has worked non-stop as a broadcaster ever since, closed the meeting and we were all on our way home.

We let a train go as it was only going to Faversham but then the next one was so we realised the same problem as this morning was happening and so we got a train to Faversham and changed to a train coming from Charingcross to Whitstable Oh boy we were glad to see the car in the car park.

But yes we have had a great day met so many lovely people and I have shown the face of Mesothelioma to the Trade. I think from what I have seen today, is that they are brave people, who have to dress up in suits with masks on. They cant even have a stubble, as that breaks the air lock, even having dental work, that then changes the shape of the face means they have to be remeasured for a different size. I can see that this all must be done or they face my disease maybe.

I can see it is a very hard job and so grateful they do have such dedication to do the work.

I do understand that I always use the word eradicate but I have been told today that means to remove it all. They are striving to do that but 10 million tons of asbestos has been used 4 million tons have been logged as removed so where is the rest. Buildings yes but some of those reports have been visited more than twice so the figures are distorted. We must manage the removal and keep records.

asbo fred6 fred7

Rays Blog for today https://mesoandme.wordpress.com/2015/09/02/tuesday-157/

Diary Of A Mesowarrior Living With Mesothelioma. August Bank Holiday is a Wash Out.

Oh dear it just hasnt been a good Bank Holiday weather wise.

We didnt go away so Friday we washed walls with sugar soap and all the paint work. Washed ceilings with  a mop and it worked. then out came the paint pot and we have decorated again.

So yesterday I had a lovely day working in the garden cutting back all the summer growth and taking it down in a wheelie bin to the skip. Working together we managed this.

Thought I would get up today and finish but there was a storm all night and then a new storm this morning. Its not the thunder and lightening that worries me its the heavy rain. So monsoon as it beats down and floods everywhere so fast.

Huge puddles are left on the roads that are prayed up like a wall of water as the cars pass through them.

Image result for bank holiday rain whitstable

We went shopping and to walk Louis. The car park was full as everyone must be so bored they thought it would be a good ides to go shopping. So many bored children crammed the isles. I just grabbed some cheese and rolls and was pleased to get back out into the quiet fresh air.Ray had walked Louis so that was OK.

People had been brave and visited Whitstable but nowhere near as many as usual. Business has suffered again.

I had a call from Holland and a  Mesowarrior has told me he is going on a trial of immunotherapy if he is suitable not Keytruda But another drug –Great to hear this as drugs are being used around the world and gradually becoming available.

The World's Fastest Indian (2005) Poster

Just watching The worlds fastest Indian made 2005 and they talk about Asbestos Material I have to allow it as the story is about 1920’s
His bike runs to hot so they used asbestos cloth. We forget how Asbestos did save the lives of so many riders in the Motorbike and Motorcar racing world.

Textile Garments

Asbestos in Textile Garments and Other Safety Equipment

One of the properties of asbestos that made it so useful is the fact that it consisted of fibers which, like those of cotton, jute and even polyester, can be woven into fabrics – with the additional advantage of natural fire resistance. Fire blankets made from asbestos fabric were once a common piece of safety equipment used by fire fighters, the military, racing pit crews and industries in which workers ran the risk of burn injuries. Asbestos canvas was used to wrap boilers and steam pipes. Protective fire suits and headgear worn by firefighters, racing drivers and petroleum industry workers were lined with asbestos, as were the protective gloves and aprons used around blast furnaces in steel mills.

Burn injuries are extremely painful and debilitating, and there is little doubt that asbestos textiles and fabrics have saved thousands of people from suffering. Unfortunately the it was later learned that asbestos exposure led to mesothelioma, an incurable form of asbestos cancer that has affected hundreds of thousands of people over the years.

Textile garments woven from asbestos fabric were in wide use from the late 19th century through the late 1970s in a wide variety of occupations and industrial and military workplaces. They were manufactured by literally hundreds of makers and labels.

Hazards Associated with Textile Garment Products

New, unused asbestos textile garments did not pose any particular asbestos risk to the people who wore them, although textile operators were certainly at risk as they worked the mills and looms to weave large quantities of asbestos into fabric. When asbestos-based textile garments were damaged or became worn with age and use, however, the asbestos fibers in the cloth would begin to degrade and would become so fragile and delicate that they could crumble at a mere touch. Garments in that condition had the potential to release a steady stream of asbestos particles when they were worn or moved, and those fibers would have posed a major health risk to the people wearing the garments as well as anyone in the vicinity. Inhalation of asbestos fibers has been conclusively linked to the development of an asbestos cancer known as mesothelioma.
Link: http://www.mesothelioma.com/asbestos-exposure/products/textile-garments/#ixzz3kPFkTy00

A Mesowarriors Diary -Living With Mesothelioma -Louis at the Vets- Pictures of Asbestos and where it was found

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Oh dear my little Louis has shaken his head over that last two days and we had to make an appointment for 5.10pm today at the vets.

We have spent the day working in the Den on computers. Its been a lovely day talking to many Mesowarriors and helping a couple of new ones. So desperate and lost and its great to be able to come up with links of information and doctors names to contact.by the time they say goodbye they are feeling in control instead of the blind panic felt when we first contact.

We were going away but we had to cancel and sort the dog as he walks around shaking his head. We did put some more Frontline on in case he had a tick in his ears as he did lay in the grass most of last weekend when we were camping.

When it was time to go I thought it would be very bad in town as everyone arrives for the bank holiday weekend, but it wasnt to bad and we got parked up and then the fun began.

The dog began to know where he was going and he become a quivering ball of fright,.We had to drag him into the vets and he sat in the corner right away from the dogs and cats that were in their waiting.

The vet finally called Louis Nye and we did get into the surgery,

The vet looked into his ears and said they were very clean so he thinks he has an allergic reaction to dust. The road to the site last week was very dusty and they were working digging out a new lake.

So an injection was decided.

I held him and in he went on Louis back. He growled that made me jump and the vet bent the needle. Whoops!! he had to  get a new one and we managed that better as he went in the scruff of his neck.

All done and £36.82 was spent.

We have come home and the dog is calmer and isn’t shaking his head. Bless him xx


I really do like the photos of asbestos products that people show and today there were a few good ones.

asbestos flooring

Proof that Tiles had Asbestos in.

https://twitter.com/Remediclean/status/637044734934937600/photo/1

asbestos ceiling 1

Did you guys ever heard about popcorn ceiling?

https://twitter.com/blake…/status/637098478091436032/photo/1

A friend made a comment –I sorry but the linked videos on how to remove popcorn ceilings do not show proper work methods. The first step is to take samples to find out if asbestos is present. The N-95 mask shown in the picture is not being worn properly and is not adequate protection from asbestos.

He is so right I hadn’t noticed.

Then there is this sad Pathe News reel where asbestos was being hailed the wonder material

​Asbestos is a pretty fantastically useful material. A naturally-occuring silicate material that forms in hollow rock formations deep underground, asbestos is a great sound insulator, is terrifically fire resistant, and is relatively affordable to produce. Also it will probably give you lung cancer and kill you.

You’ll see a lot about the good parts and nothing about the bad parts in this retroactively chilling 1942 video from British Pathé:

By the 1940s when this film was made, the dangerous qualities of asbestos were starting to be understood. The death of a factory worker from asbestos-related illness in the UK in 1924 sparked research which lead to the regulation of its use in the UK by the early 1930s. The United States didn’t follow suit until years later, and actively hid the danger from the public.

Asbestos is dangerous when its it is friable, meaning that its natural fibers can be broken apart into tiny strands and inhaled causing mesothelioma. Asbestos garments are not particularly friable, so wearing an asbestos suit like our friend in the video is not necessarily a death sentence.

Producing asbestos cloth on the other hand would definitely expose workers to friable asbestos. In general, folks who are involved in the production of asbestos-related material are most at risk of health problems. Roughly 100,000 people have died due to asbestos exposure in the U.S., mostly thanks to exposure during ship-making.

But as deadly as it is, the stuff sure works

http://www.popularmechanics.com/technology/a17118/look-back-asbestos/

We must have hundreds of films and photos in archives somewhere and I’m fascinated by them all. You can see how deadly asbestos is and the powers that be hid it from us. Still asbestos isn’t banned world-wide.

A Mesowarriors Diary -Living With Mesothelioma- A very Mad Birthday. Spoke on Radio Kent About Asbestos deaths in Kent Have Risen

The postman has been really busy here as he delivered so many cards for my birthday. What a day!!

Face Book announces your birthday as well so my wall was filling up with so many good wishes it was just so emotional but when flowers started coming to the door delivered by some eye candy men my day was really getting even better.

There was lovely charms among the cards and an Elvis Phone charm and a Key Ring and dragon-fly necklace.

My brother sent me a lovely watch as well.

We had to go to Canterbury so we set off and had a walk around all the old quaint streets.

Image result for canterbury pictures

We drove back to a carvery for lunch where you over eat

Punch Tavern 2013

Got back home and more flowers came –what was going on I was getting so puzzled. Then all was revealed and Angela had been up to her tricks again and had arranged a lovely bouquet and cards to be sent bless her.

The phone went and I was asked if I would speak on Radio Kent as an article had been published today

http://www.kentonline.co.uk/kent/news/asbestos-deaths-on-the-rise-42260/

Number of deaths from mesothelioma caused by asbestos in Kent increases

27 August 2015
by Josie Hannett
The number of deaths from lung cancer caused by asbestos in Kent has increased, according to the latest figures.
Last year, 108 people in the county died of mesothelioma – which is caused by exposure to the substance – which is 17 more fatalities than the previous year.

The natural fibrous material was used as an insulator for hundreds of years until 1992, when it was made illegal to make products with in the UK.

Medway had the highest number of deaths in Kent last year with a total of 17, which increased by three compared to 2013.

The figure means Medway has the sixth highest death rate from mesothelioma in the UK.

Swale had the biggest increase last year compared to 2013, where the number of deaths shot up from three to 13.

In Thanet, 12 people were killed by the disease in 2014 but the year before, five people died.

 Dr Alan Mckenna is a law teacher at the University of Kent. He also campaigns against asbestos issues.

He said: “The precise mechanism by which asbestos triggers mesothelioma, we still don’t know. It’s a medical mystery.

“In certain towns such as Ashford and Canterbury the deaths have fallen. Why in Swale and Thanet are we seeing very large increases?

“Unless we look at the individual deaths, I don’t think we can answer why specifically those two parts of Kent have seen massive increases.

Dr Alan McKenna, campaigner for asbestos issues

“For example, it could be that people who worked in Medway in the dockyard where asbestos was used extensively, could have moved to Swale or Thanet and unfortunately passed away in these areas.”

After initial exposure to the material, it takes between 20 to 60 years before a person develops mesothelioma.

Each year more than 2,500 people are diagnosed with the deadly disease in the UK, with men five times more likely to be diagnosed than women.

Dr Mckenna added: “You can strip asbestos out of buildings completely but there is a massive cost issue, and the government aren’t going to fund it.

Exposure to asbestos can lead to mesothelioma

“The argument is that it is perfectly acceptable to block it in as best as you can to prevent the fibres escaping, effectively you cover it up.

“What would be very useful would be to have regular air monitoring in schools so that you get a very accurate picture of the precise level of asbestos fibres at that time when the children are moving around the school.”

Dr Mckenna believes more money should be spent on research to prevent the number of deaths and find a cure for mesothelioma.

There are two types of the prolonged disease, the most common being pleural mesothelioma which develops in the tissue covering the lungs, and peritoneal mesothelioma which develops in the lining of the abdomen.

Click on the link to see the chart.

I was asked what I thought of the report and I said that I was shocked as i thought the figures were levelling but it must be down to the fact that Renovating houses DIY and trade are involved now. We need more education.

Here is my Interview  http://www.bbc.co.uk/programmes/p02z9gm3#play from 02-07-35

What a day it has been mad from beginning to end but it has been a wonderful wonderful day xx

I wrote on face Book Im getting more and more puzzled here so many men knocking on my door with flowers –will there be a kiss a gram next and a delicious man stripping. You have all blown me away today. and made my 74 birthday really something its a day I didn’t even dare to hope I would enjoy 14 months ago. So thanks for making me smile all day you very crazy lot of wonderful people

I still stand by that they are all so wonderful and stick together and help each other daily, no one should feel lonely with mesothelioma or when they lose their warrior as everyone is there to hug each other.

I always say there is no other cancer where the people meet up and have great fun in hotels and out and about. Life is for living and we live every moment.

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A Mesowarriors Diary -Living With Mesothelioma. Drug Day 32 Mk3475, Computers washed out and Fairy Penguins

I had a great sleep last night and actually woke up with the alarm ringing away. yes drug day was here again.

The journey was really great as the traffic moved all the way. just a couple of slow downs but we arrived 7.30 am so we sat with a coffee and woke up.

When we got to the Oak Ward I just knew something was wrong as the sister came out and was telling me about the fact all the computers had gone down in the 2 Marsden hospitals.Water had got into the electric boxes as it had rained so hard yesterday.

They were having to go back to pen and paper for everything.

My bloods were taken and I saw my Greek God of a doctor. He is so sweet and we went through how better I was getting. My Muscles have got stronger and I’m so pleased with a recovery of my legs. The skin is recovering and I havent worn support socks.

I told him I stopped Codeine but back on Paracetamol as I realise I have chest pain and he was happy with that.

In fact he was happy with me.

He couldn’t give me my scan results as the computers were still off.

Off we went for another coffee and then back again to sit and read and chat. 12  the sister woke me to tell me she had to redo a blood test as one had clotted.

That done we went waited in the waiting room but at 2.30pm Carol said the drug will be ready at 3.30pm Oh dear! back to the restaurant to get a roll and a yoghurt as we were getting hungry.

angel

We found the new statue the Angel. i dont know the story behind it but maybe a family of a patient has donated this lovely statue.

The drug was ready at 3.20pm and I was sat down and plugged in and then it was all finished by 4.05 pm.

The Doctor had come in and I asked if you would ask the nurse to print off my results. I really don’t think they are used to a patient so interested in all the details like I am.

When it was printed off I was a little disappointed. After a 81% shrinkage I had a  Stable Appearance. All the marker tumours are the same size and yet Para-mediastinal pleural deposit after 27mm at the beginning of the trial was not Identified –that is now 3 that have done that. Shrunk, gone away.

So I go on with my trial  10mg/kg of pembrolizumab every 2 weeks.

I got home to a mountain of Birthday cards which really cheered me up and A sweet card from Lou in Australia introduced me to Fairy Penguins. I had never heard of them and searched in Google and found a lovely video.

A Mesowarriors Diary -Living With Mesothelioma. — Weekend at Sandwich Lakes. Lou Williams fight for her Drug to go on the Australian Free List. A new Write Up Of My Drug by Nancy Meredith

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We have had such a great weekend at Sandwich Lakes Kent. A lovely country camp site near Ramsgate.

The Fishery is situated in a quiet, peaceful countryside setting with far reaching-views with a wide variety of lakes catering for everyone from beginners and novices to the dedicated Carp angler.

Excellent car parking with toilets on site. Stocks of bait and tackle along with rod hire are available at the fishermen’s lodge.

The waterside cafe serves hot food and drink daily which can be taken away to the lakes.

sadwich lakes 2

We were strolling around all the 5 lakes all weekend with Louis who did nothing but sniff and track all the wild life smells.

Swallows were flying over us all the time from early morning to late evening.

Swallows are small birds with dark, glossy-blue backs, red throats, pale underparts and long tail streamers. They are extremely agile in flight and spend most of their time on the wing. They are widespread breeding birds in the Northern Hemisphere, migrating south in winter.

Swallow

The weather was very warm and we had the Heki open day and night but that meant we heard every noise whilst sleeping, well trying to sleep. The fox’s scream was very unnerving.

Saturday was so hot I just could function in the cool of the morning we walked around all the lakes and talked to the fishermen. They were landing their catch and weighing them and then back they went into the water. I have tried fishing but I was to cruel I never got the hook right. It never went into their mouths and caught on their side or in the lips. I sat there almost crying and promised them I would fish again.

. I sat out all day and moved into the shade, bought an Ice cream. It was lovely though and meant we sat out to very late chatting and laughing away.and ended up having our dinner at 8.45pm.

lakes1 lakes2 lakes3 lakes5

The Horses in the paddock walked around together all weekend especially the white brothers. They were so close and nudged each other and even swished their tails to hit the flies of each other ahhh.

Today the sun shone until about 1.30 and then the rain came over just for a while but we packed up and said goodbye and travelled home.


Lou Williams in Australia has started a campaign to get Keytruda on the Free list in Australia. She is an unusual case as she has managed to get the drug privately as it is passed for melanoma and her Oncologist was able to give it to her. She has had wonderful results on Peritoneal Mesothelioma.

http://www.examiner.com.au/story/3294244/fight-to-see-drug-approved/

But the drug is expensive. $6000 per shot. Lou is hoping it goes on the free list but that will still only be for Melanoma.

I hope something is worked out for her and the other Australian Warriors.We are so much luckier UK to have the NHS we really should treasure it and make sure the NHS survives.

The drug hasn’t been trialled in Australia for Mesothelioma. Only Phase 1 that was the world wide trial that I’m still on.

Phase 2 is going to be a combo trial with another drug as it just doesn’t work for every patient.

It is thought it is a drug to use when nothing else has worked, when after so many chemos the Mesothelioma has mutated and the drug then works better.

The answers have not been found as this is such a new treatment.

We do know that we have to have PD-1 —

  1. Programmed cell death protein 1, also known as PD1 and CD279 (cluster of differentiation 279), is a protein that in humans is encoded by the PDCD1 gene. PD1 is a cell surface receptor that belongs to the immunoglobulin superfamily and is expressed on T cells and pro-B cells.PD1 binds two ligands, PD-L1 and PD-L2.                                
  2. Also the drug criteria is 

    Criteria

    Inclusion criteria:

    • Have measureable disease
    • Have a performance status of 0 or 1 on the Eastern Cooperative Oncology Group (ECOG) Performance Scale
    • Demonstrate adequate organ function
    • Prior therapy criteria must be met

    Exclusion Criteria:

    • Is currently participating in and receiving study therapy or has participated in a study of an investigational agent or used an investigational device within 4 weeks of the first dose of study therapy
    • Has undergone prior allogeneic hematopoietic stem cell transplantation within the last 5 years, has received a live vaccine within 30 days of planned start of study therapy, has received prior chemotherapy, targeted small molecule therapy, or radiation therapy within 2 weeks prior to study Day 1, received a monoclonal antibody within 4 weeks prior to study Day 1 or has not recovered from adverse events due to a previously administered agent
    • Has known clinically active central nervous system (CNS) involvement
    • Has evidence of interstitial lung disease, active non-infectious pneumonitis, a known additional malignancy that is progressing or requires active treatment, an active infection requiring intravenous systemic therapy, an active autoimmune disease that has required systemic therapy, a known Human Immunodeficiency Virus (HIV), Hepatitis B (HBV), or Hepatitis C (HCV) infection
    • Is pregnant or breastfeeding, or expecting to conceive or father children within the projected duration of the trial
    • Has received prior therapy with an anti-programmed cell death 1 (anti-PD-1), anti-PD-L1, anti-programmed cell death ligand 2 (anti-PD-L2), anti-CD137, or anti-Cytotoxic T-lymphocyte-associated antigen-4 (CTLA-4) antibody (including ipilimumab or any other antibody or drug specifically targeting T-cell co-stimulation or checkpoint pathways)
    • Has known symptomatic congestive heart failure, unstable angina pectoris, or cardiac arrhythmia    

      We in the UK have strict rules about Trials to protect the patients  

    • http://www.nhs.uk/Conditions/Clinical-trials/Pages/Introduction.aspx                                                                                                                                                                                                      

Nancy Meredith Wrote this article which also explains more about immunotherapy and the fact they do not as yet understand who will benefit from the drug. They are continual looking at my DNA to see what it is that I have that is giving such great results of over 85% Shrinkage. (I will confirm that on Tuesday when im given my latest measurements.

she has written

Immunotherapy Drug Shown Effective in Fight Against Mesothelioma

Wolchok reported that patients in the Checkmate trial who expressed the PD-L1 biomarker had better results than those who did not. These results point to assessing patients for a PD-L1 expression for best results with a PD-1 inhibitor.

Another PD-1 inhibitor immunotherapy drug proven effective against melanoma has also shown to be successful against mesothelioma in a clinical trial in which Mavis Nye, of England, is a participant. The six-year mesothelioma survivor has been a patient in a Phase I,  no placebo clinical trial for the immunotherapy drug, MK-3475, marketed in the U.S. as Merck’s Keytruda (pembrolizumab). Mavis has been a participant in the trial for over a year and, she says, she has seen “brilliant results” with nearly complete tumor shrinkage.

Nivolumab has also shown success in lung cancer, leading to the FDA’s approval of the drug in March. Nivolumab, is the first and only PD-1 therapy to demonstrate overall survival in previously treated metastatic squamous non-small cell lung cancer.

The use of these immunotherapy drugs is another step towards using personalized medicine in the treatment of mesothelioma. By targeting specific proteins or biomarkers, such as PD-L1, instead of using a one-size-fits-all approach, the chance for survival and quality of life increases.

Pleural mesothelioma, a pulmonary cancer caused by past asbestos exposure, is one of the most difficult cancers to treat. The cancer is aggressive and quickly metastasizes to other organs leaving oncologists with limited treatment options. However, personalized care targeted to a patient’s unique mesothelioma characteristics optimizes the potential for success of the treatment and offers treatment options that may not otherwise have been considered.

“If we understand who to give it to, we can give the right drugs, to the right people at the right time with the right tumor and really dramatically increase the cure rate,” said Dr. Justin Stebbing, Professor of Cancer Medicine and Oncology, Imperial College of London, to Sky News. “And if we can’t cure people, we will increase the number of people living with cancer, as opposed to dying from it.”

“Immunotherapy is very exciting because the immune system is a natural and highly effective tool to fight disease,” said Dr. Axel Hoos, head of the immuno-oncology discovery performance unit at GlaxoSmithKline Pharmaceuticals, in a June 2014 interview with The Atlantic.

“No other drug or course of treatment has been able to generate the long-term benefits and promise for patients seen with cancer immunotherapies,” said Hoos.

njoynature/discoverandlearn/birdguide/name/s/swallow/index.aspx