Living With Mesothelioma -My Diary- ADAO Asbestos Awareness Week Starts -British Lung Foundation Letter and Lou’s Message

Tomorrow is April 1st and ADAO start their Asbestos Awareness week in the US. I will be playing a part alongside The British Lung Foundation

British Lung Foundation

I was their centerfold In their annual review 2012/2013 and also made a Video for their Take Five Stay Alive. Campaign

Im very proud of this work so when I was asked to help with a letter they will be sending out to all the Working Mans Clubs to ask for club members to consider supporting the British Lung Foundation.

Dear Sir/Madam,
“I never gave a second thought to washing my husband’s work clothes back in the 1960’s. Little did I know that it would cause me to develop mesothelioma 50 years later.” Mavis Nye, diagnosed with mesothelioma in 2009.
Unfortunately Mavis is not alone. 2,400 people die of mesothelioma each year in the UK.
Mesothelioma is a type of cancer which affects the chest and lungs, mainly caused by past exposure to asbestos dust. The disease takes a long time to develop and in the majority of cases people were innocently exposed to asbestos dust in their workplace many years ago. Hardworking carpenters, plumbers, painters and builders were unknowingly risking their lives on a daily basis to provide for their families. Sadly, like Mavis, their families were also put at risk through the fibres they carried home on their clothes.
There is no currently no cure for mesothelioma and over the next 30 years 60,000 people will die from this devastating disease unless new treatments are found. Despite this, funding into research is extremely low. Here at the British Lung Foundation we feel passionately that more should be done. We are committing at least £1million into research over the next two years, but to do this we need your help.
We’d be very grateful if you and your club members would consider supporting the British Lung Foundation. Perhaps you could organise a raffle at your next Club meeting, or hold a collection to raise funds. Every penny raised will make a real difference. As well as funding research into mesothelioma and other lung diseases, we also support anyone affected by any lung condition by providing support services and campaigning for change. If you’d like any more information, or would like to talk to us about your fundraising plans then please call the fundraising team on 020 7688 5615 or email
Support us and you will be making a real difference to the life of someone like Mavis and the millions of other people affected by lung disease in the UK.
With best wishes,

I was so pleased to help and then ADAO wanted to alsoAdd BLF to their Global Asbestos Awareness Week

Look at Day 4 so that has all worked out so well.

Another message was published as well it was from Lou. I dont like to believe that she is dieing and so I find the dieing message very hard to take. We have lost far to many Warriors and Lou Messaged me once for talking about her getting so bad. But she has the same Meso as Our wonderful Warrior Jan Eggerton who we lost 2014.

Jan like Debbie was so close to me and we nattered away on the Computer until the day before their deaths. Its not easy to talk about staying positive when you know the end is so near. I miss them both and now here we have Lou talking the same way,

Posted on March 31, 2015

“I Will Not Die in Vain” – Louise’s Story

Ruby & Louisa Aug 2013

I want to start this blog with the facts. I’m dying from mesothelioma. But I refuse to die in vain. If there is one wish I have, it’s that the main legacy of asbestos warriors like me will be that we helped create a foundation for a global ban on asbestos. I lost my father to it. I’ve attended over 60 funerals of victims who died from asbestos disease. Enough is enough.

Since my father was first diagnosed in 1985 at the age of 54, dying less than a year later, I was determined to do something to make a difference. Since my own diagnosis in 2003 and subsequent battle with meso, I have continued my passion for global awareness and unity. Only in unity can we truly ban this horrific and lethal mineral.

As I write this, enjoying each moment of each precious day – which have become even more precious to me as I reach the final stages of my journey – I am struck with hope. I still have hope that we will one day, in the not too distant future, see a world without asbestos.

Global Asbestos Awareness Week is coming up April 1 – April 7.  As the Australian Director of the Global Ban Asbestos Network (GBAN), Social Media Awareness Officer of the Asbestos Diseases Foundation of Australia (ADFA), and volunteer for the Asbestos Disease Awareness Organization (ADAO), I am passionate about how powerful this effort really is. Asbestos knows no geographic boundaries. It doesn’t discriminate. It is a killer. And it’s time to stop it in its tracks.

There are a series of presentations and many opportunities to get involved over the course of this week. I want to share the “Top Five Asbestos Facts” –  as they  highlights some of the most important facts about asbestos and why we need a ban:

FACT 1:  Asbestos is a known human carcinogen and there is no safe level of asbestos exposure.

FACT 2:  Only 55 countries have banned asbestos. The United States and Canada are the only two industrial western nations not to ban asbestos.

FACT 3:  Top 4 asbestos producers reported by USGS in 2014 are:  Russia (1,050,000), China (400,000), Brazil (291,000), Kazakhstan (240,000) *metric tons.

FACT 4:  More than 107,000 people die each year from asbestos-related diseases.

FACT 5:  While promising research continues, prevention remains the only cure for mesothelioma and other asbestos-caused diseases.

I will not die in vain. Asbestos, one day your funeral will also come, and it will be a time for rejoicing and bidding you a very hearty farewell.

Remember, there is power in unity. And with unity, we will one day see a global asbestos ban.

With Love,

Lou Williams

I pray we will still have Lou here with us next year to write a message for 2016. Stay Positive Lou.

Rays Blog

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Living With Mesothelioma-My Diary-yet another talking shop on chrysotile (white) asbestos.’ ADAO Asbestos Awareness Week 1st April

Sunday was such a wash out for me as the weather was awful. So much rain and cold wind just makes my outdoor life impossible. I really have got to get myself into shape and stronger. I had resigned myself to dieing and yet I have survived 6 years now. I have got to resign myself that Im living that I do have a future if only another year I need to really get a hold of my life and turn it around to really having a good time.

Camping will help soon but really I have allowed old age to take my body over when I had been so active before and had really worked at getting through old age with a fit body.

I should make a plan and stick to it.

Keep fit Acorn

My story is featuring in the ADAO Advertising for their conference that will start off with Asbestos Week

Hear Asbestos Think Prevention GAAW Square

Treatment is at the Royal Marsden in Surrey.Every two weeks I have a half hour infusion. of the MK3475 and I will carry on as long as I get shrinkage which so far is almost 60%, and my body still tolerates the drug

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 bought 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 3 months.

Something is going on today and tomorrow

On Monday and Tuesday of next week, March 30 and 31, 2015, asbestos lobbyists will be hosted in Geneva at the expense of European taxpayers.1 The European Union is underwriting the costs of bringing nineteen asbestos industry and government stakeholders to Europe to take part in yet another talking shop on chrysotile (white) asbestos. Given the unproductive outcome of so many previous encounters, it belies belief that yet more money – and OUR money at that – is being thrown at people who represent an industry which peddles death and pollution around the globe.2 Amongst the guests are individuals representing asbestos industry trade associations from India (Mr. Vivek Chandra Rao Sripalle, Asbestos Cement Products Manufacturers Association), Ukraine (Mr. Oleksandr Sierkin, Association Ukrainian Chrysotile Corporation) and Zimbabwe (Mr. Shame Chibvongodze, Zimbabwe National Chrysotile Taskforce).

The Technical Workshop on Chrysotile Asbestos is being organized by the Rotterdam Convention Secretariat for countries which produce, export and/or consume chrysotile asbestos. Of the twelve stakeholder countries taking part,3 seven – Russia, Ukraine, Kazakhstan Zimbabwe, Kyrgyzstan, Vietnam and India – blocked the inclusion of chrysotile asbestos on Annex III of the Rotterdam Convention in 2013; substances on this list are subjected to minimal global trade regulations.

An article about next week’s meeting entitled: “Farcical Technical Workshop on Chrysotile in Rotterdam Convention” was uploaded today (March 26, 2015) to the website of the Building and Woodworkers International. It is quite explicit about its view of the industry freebie:

“The asbestos mafia will ensure that the concerns of the industry are heard and will shout down anyone who disagrees with them. Their vested interests prevent them from accepting the international scientific consensus on the need to use safer substitutes for deadly chrysotile asbestos. Just like the tobacco industry, the politics of denial of risk and the drive for profits blinds them to reasoned arguments.”4

The European Union is underwriting the costs of bringing nineteen asbestos industry and government stakeholders to Europe to take part in
Comment: Hard to come to grips with this, realistically it is a good opportunity to lock these industrial murderers up and throw away the key! It is not rocket science to understand that asbestos kills people, so therefore, those who supply it and proliferate its use, are nothing less than murderers! – Rod Smith BBF

Rod is so right and it infuriates me when UKIP have added to their Manifesto that they are going to

The ‘UKIP Agriculture Policy: Overview’ published in March 2014 states that ‘UKIP will get rid of unnecessary regulations’ specifically including the ‘Hazardous’ classification of asbestos cement.

After months of investigation UKIP experts have confirmed that the HSE’s regulation for the handling and disposal of asbestos cement products, as found in large quantities on farm buildings nationwide, was based on totally false science.  The ‘UKIP Agriculture Policy: Overview’ published in March 2014 states that ‘UKIP will get rid of unnecessary regulations’ specifically including the ‘Hazardous’ classification of asbestos cement, whereas blue and brown asbestos will, quite rightly, remain under strict control.
I came up with a good advert for DIY in the home as

Matty Dixon is selling these items ——-This is what you need today working with Asbestos and yet we do DIY with just a cloth mask. The ordinary House Owner when Dry Stripping Artex etc etc puts themselves in so much dangerasbestos gear

Its Easter this weekend and so a timely remind to protect yourself against Asbestos as you work around the house DIYing.

Rays Blog –

Living With Mesothelioma -My Diary- A very quiet day. Canada figures, imports of asbestos-related items rose. North East has a Mesothelioma UK clinical nurse specialist

 Not a lot happened today. The wind is just to cold and it holds me in doors. Im walking around again on my foot so that is a relief.
The washing is all done and dried as Im beginning to master the dryer at last.…/imports-o…/article23675154/

Since the whole story began money was the engine to drive Asbestos then greed and then a disregard of people’s lives when they found out that it did kill people. How can they live with themselves

Their money must numb feelings or respect for life. Its a sad story that will never end.

A mechanic changes brake discs on a Ford Focus vehicle. (Horus/The Canadian Press/Action Press)

Despite rising fears of asbestos-related illnesses, imports of products containing asbestos show little sign of slowing.

According to Statistics Canada figures, imports of asbestos-related items rose to $6-million last year from $4.9-million in 2013. The bulk of these goods consisted of asbestos brake linings and pads, which hit $3.6-million in imports in 2014, a seven-year high. Other imports included raw asbestos, friction materials and some items containing crocidolite, which is considered the most dangerous form of asbestos.

The dollar amounts may not seem like a lot of money given Canada’s overall trade, but in terms of brake pads that translates into hundreds of thousands entering the Canadian market each year. The World Health Organization and other agencies have said that all forms of asbestos are carcinogenic and the best way to eliminate asbestos-related diseases is to stop using it.

Asbestos is by far the top on-the-job killer in Canada, accounting for almost 5,000 death claims since 1996. Many victims die of mesothelioma, asbestosis and lung cancer, though it may take 20 to 50 years after exposures to materialize. And yet Canada continues to allow imports and exports of asbestos, unlike other dozens of countries such as Australia, Japan, Sweden and Britain, which have imposed a ban.

asbestos advert
 Add that would shock today but goes to show it was in so many odd places

Local campaigner to fund first ever mesothelioma specialist nurse in North East

Local charity the Mick Knighton Mesothelioma Research Fund (MKMRF) – part of the British Lung Foundation – is to fund the first ever Mesothelioma UK clinical nurse specialist in the North East.

MKMRF, working in partnership with Northumbria Healthcare NHS Foundation Trust, has appointed Leah Taylor to the role. She will be in post for an initial two years and will be available to offer support to people diagnosed with mesothelioma in the North East, one of the worst affected areas in the UK.

Leah, who has had considerable experience caring for patients with mesothelioma during her 20-year nursing career, will treat patients in Northumberland and North Tyneside and work with other regional teams to improve access to support groups, treatments and information. As nurse lead for mesothelioma, she will also be responsible for ensuring mesothelioma issues are raised regionally.

Mesothelioma is a type of cancer of the lung lining caused by exposure to asbestos. It has a very poor prognosis – most patients will die within months of their diagnosis and fewer than one in ten will survive three years. Mesothelioma nurses perform the invaluable role of providing care and guidance to patients, allowing them to have access to specialist care and information about this devastating disease. There are currently only six mesothelioma clinical nurse specialists in the country.

Chris Knighton MBE, founded the MKMRF in memory of her husband, Mick, who was diagnosed with mesothelioma in August 2000 at North Tyneside hospital. He died seven months later. At the time there was no information or support.

Leah Taylor, mesothelioma clinical nurse specialist in the North East who is based at North Tyneside General Hospital, said: “Having a mesothelioma nurse specialist for people affected by this terrible disease in the North East has the potential to significantly transform the care people receive here. For many people the prognosis is very poor however with the right support, care and access to information about new research and treatments, quality of life for people diagnosed with this disease and their families can be greatly improved.

“I am honoured to be a part of this new chapter in mesothelioma care and I look forward to working with Mesothelioma UK, the MKMRF and the British Lung Foundation – to provide the much-needed support for these families.”

Chris Knighton, founder of the Mick Knighton Mesothelioma Research Fund, said: “I realised the desperate need for more support for people with mesothelioma after Mick was diagnosed in 2000. We had no idea what this cancer was, we were simply told he had six months to live and to go and spend quality time together.

“Having a mesothelioma nurse available means that other families won’t have to go through what we did. We still have a long way to go in terms of improving mesothelioma care in this country but I see this as a significant victory for patients in the North East and I know that Mick would be so proud.”

Halloween Gas Mask

Most people know that asbestos can be dangerous. So nobody expects to find it in part of a Halloween costume.

But asbestos is exactly what Utah lab technician Steve Dixon of Dixon Information claims he discovered after testing a gas mask he bought for his grandson’s Halloween costume at an army surplus store, according to a report from KUTV of Salt Lake City.

The CBS television station reported last week that the Russian GP5 mask purchased by Dixon and tested by him was found to have 7.5% asbestos in the filter cartridge. The Russian gas mask is sold in army surplus stores and it is a popular item for Halloween costumes. Four other laboratories tested the mask and confirmed Dixon’s finding.

Asbestos is a mineral that was once commonly used in construction materials and consumer goods to increase durability and fire resistance. However, asbestos is now known to be a serious threat to human health. Asbestos-related illnesses include lung cancer and mesothelioma, a rare and aggressive cancer that attacks the cells lining the lungs, abdomen, and heart.

Military gas masks have been made with asbestos in the past. During World War II, many were made with filter pads that contained asbestos, which was considered a good filtering material. Unfortunately, workers who manufactured the masks as well as soldiers who wore them were exposed to the toxic material. Many developed mesothelioma and other asbestos-related diseases.

KUTV contacted several army surplus stores which had sold out of the Russian GP5 mask and were unaware that it contained asbestos. Trick-or-treaters who purchased the masks as part of their costumes are advised not to use them.

Living With Mesothelioma-My Diary- ADAO Press Release- Kent Cigarettes and Asbestos Claims

I have had to have a day indoors to rest a silly painful heel. Ever since we walked in London the heel has got more and more painful. Ray had a look and there is a small cut. Sometimes they are more painful than a huge gash. We have taken the hard skin from it and it feels better so i have just got to let it heal now.

We have a dog thats had a hair cut. far to short and he is running around trying to hide until it grows.


Oh dear will he ever forgive us.

Its been a busy day on the computer a lot of chatting done and phone calls.

Alistair Is on oxygen but is coming home Monday. Im so sorry his trial hasn’t worked. Immunotherapy hasn’t worked for him  and he must be so disappointed the next trial they offered hasn’t worked. He has only had 1 session so I don’t think its the trials fault.

I wish him all the luck. His Oxygen and wheel Chair have been delivered ready for his return home.

ADAO had a press release today

Senator Boxer Statement on National Asbestos Awareness Week 

For Immediate Release: March 27th, 2015

Asbestos Disease Awareness Organization (ADAO) Praises Senate for Passing the Bipartisan 11th Annual “National Asbestos Awareness Week” Resolution”

Important Educational Effort Coincides with Global Asbestos Awareness Week

Washington DC, USA – March 27th, 2015 – The Asbestos Disease Awareness Organization (ADAO), which combines education, advocacy, and community to prevent exposure and ensure justice for asbestos victims, today praised the Senate for the passage of a resolution establishing the Eleventh Annual “National Asbestos Awareness Week.” This important educational week raises public awareness about the prevalence of asbestos-related diseases and the dangers of asbestos exposure and coincides with the international educational campaign – Global Asbestos Awareness Week.  The Senate Resolution is led by Senator Edward J. Markey (D-MA) and cosponsors – Senators Cory Booker (D-NJ), Barbara Boxer (D-CA), Ben Cardin (D-MD), Mike Crapo (R-ID), Steve Daines (R-MT), Dick Durbin (D-IL), Dianne Feinstein (D-CA), Kirsten Gillibrand (D-NY), Johnny Isakson (R-GA), Patty Murray (D-WA), Harry Reid (D-NV), Chuck Schumer (D-NY), Jon Tester (D-MT), and Elizabeth Warren (D-MA).

Despite its known dangers, asbestos remains legal and lethal in the USA and imports continue. Exposure to asbestos can cause mesothelioma, lung, gastrointestinal, laryngeal, and ovarian cancers; as well as non-malignant lung and pleural disorders. The World Health Organization estimates that 107,000 workers around the world will die every year of an asbestos-related disease, equaling 300 deaths per day.

Linda Reinstein, President and Co-Founder of ADAO, expressed her gratitude commenting: “On behalf of ADAO, I would like to thank Senator Markey, Co-Sponsors, and full Senate for unanimously passing the 11th Annual ‘National Asbestos Awareness Week’ Resolution. We are extremely pleased to have such strong bipartisan backing of this critical resolution once again so that we can continue our concerted efforts to educate the public on the dangers of asbestos and build a legacy of hope for victims of asbestos each year.” She continued, “Most Americans can’t identify asbestos or manage the risk associated with repairs, renovation, construction, or disasters. The powerful 15 facts outlined in the resolution underscore the dangers of asbestos. Since 1900, the USA has consumed 31 million metric tons of asbestos, which has caused one of the largest man-made disasters. Each year, 10,000 Americans die from preventable asbestos-caused diseases. We are hopeful and encouraged by efforts to reform the outdated Toxic Substances Control Act (TSCA) from 1976 that has failed to ban asbestos and protect Americans from nearly 84,000 chemicals that have been grandfathered into commerce.”

“My decision to lead the sponsorship of this resolution was an easy one to make as I firmly believe that the key to ending asbestos related deaths is education and prevention and I applaud ADAO for its work to help further this important goal,” stated Senator Edward Markey. “The establishment of the Eleventh Annual Asbestos Awareness Week comes on the heels of my co-introduction, with Senator Barbara Boxer, of another important piece of legislation – the Alan Reinstein and Trevor Schaefer Toxic Chemical Protection Act, S. 725 – which seeks to protect children and communities from the dangers of toxic chemicals and specifically calls for a ban on asbestos. I remain enormously encouraged by the bipartisan efforts taking place to end exposures to toxic substances like asbestos.”

Senator Barbara Boxer said:  “Asbestos is one of the most dangerous substances known to humankind – it takes 10,000 lives a year.  National Asbestos Awareness Week is an important reminder of why we need to fight to ensure that our families and children are protected from this lethal hazard.  That is why Senator Markey and I recently introduced S. 725, the Alan Reinstein and Trevor Schaefer Toxic Chemical Protection Act, which specifically addresses the threat posed by asbestos.”

ADAO has worked with members of the Senate since its founding in 2004 to unanimously pass annual asbestos awareness resolutions and has secured three U.S. Surgeon General asbestos statements in 2009, 2013, and 2014 educating Americans about the dangers of asbestos and steps to prevent exposure. A copy of the resolution can be found here.

ADAO will hold its 11th Annual Asbestos Awareness Conference on April 17 – 19, 2015, at the Crystal Gateway Marriott in Arlington, VA. More than 40 renowned medical experts and asbestos victims from ten countries will speak on the latest advancements in asbestos disease prevention, treatment for mesothelioma and other asbestos-caused diseases, and global ban asbestos advocacy.  To register for ADAO’s 2015 conference,









Mesothelioma victims unknowingly inhaled deadly asbestos fibers into their lungs on their jobs, typically through materials used for building construction or auto parts.  Another large group of mesothelioma victims are family members who breathed in those asbestos fibers from clothing and other asbestos dust-covered items those who worked with asbestos brought into the home.

Now a new group of mesothelioma victims has emerged – people who smoked Kent cigarettes during the 1950s. Mesothelioma, a lethal lung disease, typically takes decades to produce symptoms signifying its malignant presence.

Kent cigarettes, produced by Lorillard Tobacco, had filters packed with deadly asbestos fibers. This was a selling point for the cigarettes touted as a safer alternative to other cigarettes by the company, according to a new article by, a Los Angeles-based nonprofit investigative news organization focused on public health and safety issues, and published in the consumer advocate magazine Mother Jones.

“It’s hard to think of anything more reckless than adding a deadly carcinogen to a product that already causes cancer—and then bragging about the health benefits. Yet that’s precisely what Lorillard Tobacco did 60 years ago when it introduced Kent cigarettes, whose patented ‘Micronite” filter contained a particularly virulent form of asbestos,” the article states.

Lorillard allegedly added the filters to the cigarettes as a marketing gimmick, according to the article, to  relieve consumers’ fears of the harmful effects of tobacco and nicotine and keep them from quitting.  The harmful effects of smoking had just started to become public knowledge at that time.

The health benefits of the asbestos filter would prove false, but it  avoided the potential loss of millions of customers, according to the article.

Although it was already known that asbestos caused lung disease in miners and plant workers, the cigarette company reportedly banked on the reputation of asbestos as an effective filter material. It contracted with Hollingsworth & Vose to supply asbestos for the cigarette filter it called Micronite.

“What is ‘Micronite’?” one of its ads asked. “It’s a pure, dust-free, completely harmless material that is so safe, so effective, it actually is used to help filter the air in operating rooms of leading hospitals.”

Now six decades later, both companies face numerous lawsuits from former workers in its factories as well as former smokers who say they inhaled the asbestos fibers when they smoked. The company denies that enough asbestos fibers escaped from the filter to cause mesothelioma in smokers. But last month a Florida jury awarded $3.5 million in damages to a former Kent smoker with mesothelioma. In addition, Lorillard, based in Greensboro, NC, settled 90 cases in the last two years and has 60 more cases pending, according to its filings with the Securities and Exchange Commission.

Living With Mesothelioma.-My Diary- Visit to London to the HSE’s Asbestos Artwork-Meeting Verastems CEO Robert Forrester

They detonated the bomb in a Kent Quarry today

Ministry of Defence handout photo of the Bermondsey bomb being destroyed by the Army near the River Thames at Cliffe in Kent

It shook Kent but I was off to London today so I missed this.

Caught the train at 9.15am and sat down but had to move. People talking doesnt usually worry me but they were Italian students and they were all trying to talk above each other. Two stations and I moved when ray agreed.

Arrived in London and the mayhem began. We were only traveling from Victoria to Charring Cross but the train was so packed Victoria to The Embankment. It was easier from there to Charring Cross and then I walked to far as it was raining and went past Bedford Street. I asked a lovely French man that works on the Visitor Direction Booth they set up He had us walking in a square back past Covent Garden and There was St Pauls Church (The Actors Church named because its in Theater Land)



judy 2

HSE Every Job Beware Asbestos campaign – Artwork briefing – case studies

Thank you for your involvement in the Health and Safety Executive’s (HSE) Beware Asbestos Campaign. This document tells you more about your role and the key campaign messages which you can use to weave into your interviews with the media.

Dust to Dust – launch of artwork for the HSE’s Every Job Beware Asbestos campaign
Health and Safety Executive
The Actor’s Church in Covent Garden
Tuesday March 24 2015

Your role

As one of the message contributors to the artwork, you will serve a central role in illustrating the personal story behind the installation. Your main responsibility will be to tell the media how you and your family have been affected by asbestos and its unforgiving side effects. By telling the media your personal story, we hope to encourage tradespeople working today to take the right safety measures to protect themselves and others against the dangerous material.

Please rest assured that we’ll be doing everything in our powers to make any potential interviews as easy and comfortable for you as possible. Please don’t hesitate to call a member of the Kindred team if you have any questions or queries in the meantime – you’ll find the appropriate contact details at the end of this document.

Artwork information

Scores of heart-wrenching messages, written by people who have lost husbands, wives, fathers and children to asbestos-related diseases, are at the centre of a hard-hitting public art installation aimed encouraging tradespeople to take safety steps to protect themselves and others.

Artist Joe Joiner, whose own great-grandmother died after being exposed to asbestos, has been working with the Health and Safety Executive (HSE) to create Dust To Dust – an interactive installation unveiled today in the garden’s of St Paul’s Church in Covent Garden to honour the thousands of people who die every year after coming into contact with the killer substance.

More than 50 grieving family members have added their own personal messages to the piece, created as part of HSE’s Every Job Beware Asbestos campaign. The artwork is made up of two huge glass boxes, inside which the messages float around representing a breathing pair of lungs. The messages themselves symbolise the microscopic asbestos fibres that can be unknowingly breathed in if tradespeople do not take the right safety measures to protect themselves. These fibres can prove lethal causing deadly diseases such as mesothelioma, an aggressive form of lung cancer.

Campaign information

The HSE is Britain’s national regulator for workplace health and safety and aims to reduce work-related death, injury and ill health. The aim of this campaign is to help tradespeople recognise that asbestos is still a real and current risk, helping them to work more safely on jobs that might disturb asbestos and to ensure they know how to protect themselves against the dangers.

Asbestos contains microscopic that cause lung disease and cancer. Mesothelioma is the most common asbestos related disease (ARD). HSE estimates that 1.3 million tradespeople are at risk of being exposed to asbestos. This is based on current estimates of employment in Great Britain in construction-related occupations which are most likely to involve coming into contact with asbestos.

The HSE has created a free web app that helps people work more safely with asbestos while on site. The web app can found at :
Key messages

Messaging relating to the artwork
My family and I have been affected by asbestos exposure and we are passionate that no-one else falls victim to it
This artwork represents the many families who have been affected by asbestos exposure and is a way to highlight the devastating impact it has on families like us
This artwork and the many families who have contributed serve as a warning to tradespeople to beware asbestos on every job

Broader campaign messaging
20 tradespeople, on average, die every week from asbestos related diseases
Every tradesperson is likely to come into contact with asbestos at work
Asbestos can be in any house or building built before the year 2000
Asbestos remains in millions of homes, business premises and public buildings today
Asbestos can be found in walls and ceilings and places like floor tiles, boilers, toilet cisterns, guttering and soffits
Over a million tradespeople are still potentially at risk of being exposed to asbestos in their work.
Awareness of where asbestos can be found and how to appropriately tackle it is low
When done regularly, even small jobs like drilling a hole can expose you to the danger
The free Beware Asbestos web app can help you work safely and protect yourself against the risk of asbestos
Exposure to asbestos can lead to lung disease and cancer

We said goodbye to Keith of the agency Kindred who has run this event.


A wonderful Lunch was had in a Restaurant  in Covent Garden. I said it was Parsnip the waitress said Pea but it was lovely.

We walked around and market window shopping and saw this man

How did he do it

and then went to the Church to meet the CEO of Verastem.

There is so much history to this church so I have put the Wiki Link,_Covent_Garden

Then in the very quiet church Rays phone went –oops !! We went outside and as Robert was talking to me he came in view walking down the long pathway to the church. “Is that you in the red coat ” he said. So I waved. I didnt have to wear a rose in my hair then ha ha !!

We had a great talk about my trial and he was chatting about Verstems trials. They are getting good results. We talked about how I met Brian Sullivan and the wonderful day we spent with Dean Fennel and Lord Saatchi.

Then we parted company. We had a good journey home and was so pleased to have a cuppa at home.


Verastem Appoints Robert Forrester as Chief Executive Officer

-Christoph Westphal, M.D., Ph.D., to Transition to Executive Chairman as of July 1, 2013

-Conference Call Scheduled for 8:45am ET on Thursday, June 6-

Cambridge, MA – June 6, 2013 – Verastem, Inc., (NASDAQ: VSTM) focused on discovering and developing drugs to treat cancer by the targeted killing of cancer stem cells, today announced that Robert Forrester, President and Chief Operating Officer, will be named President, Chief Executive Officer and a Director, and that Christoph Westphal, M.D., Ph.D., Chairman and Chief Executive Officer, will be transitioning to Executive Chairman. These changes will be effective on July 1, 2013.

“Building on Dr. Weinberg’s work in targeting cancer stem cells, Verastem has the potential to revolutionize how we treat cancer,” said Dr. Westphal. “It continues to be my mission to help realize this potential by setting a clear scientific, clinical and strategic path forward and by assembling an extraordinary team to ensure effective execution. Robert’s experience and expertise are perfectly suited to advancing our company through clinical development and creating value for shareholders, making this an ideal time to effect this transition. As the largest investor, and with an active 10b5-1 buying plan, Verastem will remain my principal focus. Robert and I will continue to work closely with the Board of Directors to implement our strategy.”

“On behalf of the Board of Directors, I congratulate Robert on his appointment as Chief Executive Officer,” said Henri Termeer, Lead Director of Verastem. “The strong partnership between Robert and Christoph has allowed them to build an extraordinary company at the cutting edge of cancer research and drug development. The Board has recognized that, as Chief Operating Officer and, more recently, as President, Robert has been instrumental in the design and execution of Verastem’s strategic plan, a fact that will make this transition a seamless one.”

“Led by our commitment to patients, we have built a strong foundation at Verastem. We have assembled the right team, platform, products and capital required to demonstrate the potential of targeting cancer stem cells to improve cancer care,” said Mr. Forrester. “I look forward to building on the scientific foundation and platform which has created our pipeline, advancing these programs forward into the clinic and embarking on a potentially pivotal study of our lead candidate VS-6063 in mesothelioma. I am delighted to have the opportunity to lead our talented and dedicated team at Verastem as we strive to bring new treatment options to patients and to create value for our shareholders.”

Conference Call Information

The Verastem management team will host a conference call this morning, Thursday, June 6, 2013, at 8:45 AM (ET). The call can be accessed by dialing 866-515-2911 five minutes prior to the start of the call and providing the passcode 42611296. A replay will be available approximately two hours after the completion of the call and can be accessed by dialing 888-286-8010 and providing the passcode 53634345. The replay will be available for two weeks from the date of the live call.

The live, listen-only webcast of the conference call can be accessed by visiting the investors section of the Company’s website at A replay of the webcast will be archived on the Company’s website for two weeks following the call.

About Verastem, Inc.

Verastem, Inc. (NASDAQ: VSTM) is discovering and developing drugs to treat cancer by the targeted killing of cancer stem cells. Cancer stem cells are an underlying cause of tumor recurrence and metastasis. Verastem is developing small molecule inhibitors of signaling pathways that are critical to cancer stem cell survival and proliferation: FAK, PI3K/mTOR and Wnt. For more information, please visit


Contact Verastem, Inc.

Brian Sullivan,

Living With #Mesothelioma -My Diary- Drug Day at The Marsden- The #Asbestos Artwork is at the Actors Church Covent Garden

I had to go to the Royal Marsden today and Its been a long day at the hospital. The journey was difficult as there was so much traffic as there was a hold up as workman had found a bomb by Tower Bridge which had to be closed for 2 days and people living nearby were evacuated.

Hundreds of families were today ordered to evacuate their homes at dawn as Army experts prepared to defuse a huge World War Two bomb unearthed by builders in the middle of a busy housing estate.

People living in the 200-metre blast zone of the half-ton bomb in Bermondsey, south London, were warned that failing to leave by 8am would put their lives at risk in the event of an explosion.

An evacuation notice sent to hundreds of residents reads: “The Army Disposal team have advised that if the bomb explodes, buildings in the 200-metre zone will be significantly damaged and those close to the bomb will be destroyed.

“Remaining in your home is placing your life at risk. This course of action is not advised.”

The stark warning came amid concerns the age and size of the bomb – thought to have been dropped by Luftwaffe planes during the Blitz on May 11, 1941 – is proving “problematic” for disposal teams.

So we thought we would get to the Marsden late but no we arrived in time.

I had to do a sample which would be tested for the Urine infection.So I held on and rushed to get a sample cup from Carole and made it in time.

We waited in the waiting room to be called in for me to have my bloods taken then the wait to see the Doctor. Sam who is Australian saw me. My Urine is still showing an infection with blood in there. So I have a prescription for another Antibiotic. Co-amoxiclav 500/125mg. These contain penicillin so lets hope these work.

So with my bloods passed and the drug approved we went for our usual Coffee and Cake.

The we went to Bud Flanigan ward to see Alistair but the Receptions went and asked as I had come from Oak ward which meant as I was on treatment and Alistair was on treatment they had to worry about cross infection. She said they werent being awkward just have to be careful.  The Bud Flanagan wards are primarily for patients with myeloma, leukaemia or lymphoma, those being cared for by the Haemato-oncology Unit. That was the only bed yesterday for him. I didnt want to take any infection in so I went back to oak ward.

By 12.30pm my drug was ready so I went in and took another dose of my wonder drug.

We met a lovely couple there and we hope we meet again but she is going to friend me on my Face Book.

|On returning home I have learnt the unfair news that Alistair has had to come off his trial as his Meso is growing again. So that’s both trials that have failed him. Im so unhappy to hear this. xx

Judy Turnball has sent me photos of the day and a message about her visit as I couldnt go to the Actors Church in Covent Garden so I couldnt go with Judy. She has taken some lovely photos though.

Hi everyone I went up to the Actors church in Covent Garden today and met the artist and agency organising the asbestos awareness themed sculpture and I met people from Chesterfield and the Greater Manchester area.They all knew about Debbie and Mavis and Lou and Linda Reinstein .Photos were taken and we chatted about our experiences. Hopefully the snaps I took are ok


judy 5

judy 4

judy 2


The sculpturer and I looking at our meso warriors Calendar next to the asbestos awareness themed sculpture he created——

Oh dear and we are all naked

All the info I had was an email

Asbestos artwork.

The piece will be installed on Tuesday March 24 in the garden outside The Actors’ Church in Covent Garden and will remain there until the end of Wednesday March 25. Without giving too much information away about the piece itself, it will be a glass installation that will have everyone’s messages floating around inside (to replicate the act of a pair of lungs breathing). The fans used to blow the messages around will be turned intermittently on and off so that when they’re resting on the bottom (which will be eye height) people will be able to read them.

Well now we have seen it and its lovely. I will see it also tomorrow. I have invited Verastem as i had a email last week —– Our CEO, Robert Forrester, will be in London next week meeting with the COMMAND study investigators. We’ve talked about the two of you getting together and perhaps this could be a good time? He is very motivated by your journey and would be pleased to finally meet you! He’ll be in the city on Tuesday morning and Wednesday afternoon.

I was very pleased to be able to meet him so look forward to tomorrow.

Living With #Mesothelioma-My Diary- The ADAO Tributes have been Published- a Guest Blog Explaining Immunotherapy






Good Morning

It has turned so warm today and yet yesterday was freezing but we did go to our country park and let Louis run and run. So much better than pavement walking and it did us good to see him running at the speed of a greyhound. The first real run this year. So we returned to the car with a very tired little dog that slept the rest of the day after a bowl of his favourite dinner -Chicken.

I spent a lot of time in the evening on the computer sorting out my Cyber work and tidying things up.

ADAO printed the Tributes people have made for the forth coming Conference  ADAO’s 11th annual Asbestos Awareness Conference.

2015 ADAOa



















I made it under my Web Page as it is getting recognised here in the UK and I even get requests to add to it so I hope it grows even more over the years. We produced it as I wanted to put together help that wasn’t there when i was first diagnosed and only found doom and gloom. Not many trials even 6 years ago. Now Im on Imunotherapy I do get tired but when you think of what my body is doing inside with the battle that is going on its amazing. As in this blog  Sharma says “The immune system eventually fails in eliminating the tumors or turns off its attack on the cancer cells, thinking it finished its job. “What we think now, is that with immunotherapy, we can reset the immune response and try to get things going again,”

Please read this as it is really explaining Immunotherapy

Guest Blog

Immunotherapy: Disrupting the Cancer Treatment World

This story is part of the American Cancer Society’s Cutting-Edge Cancer Science series, which is exploring some of the most promising areas of cancer research in depth.

Cancer Immunotherapy Image

Cutting Edge Science inline The cancer research world is dedicating increasing energy to a rapidly evolving type of treatment that has the potential to be more effective – and in some cases less toxic – than many of today’s existing options. Using the body’s own natural system for fighting disease, immunotherapy may also offer a lifeline for patients with certain types of cancer who have exhausted other treatment options. Researchers and drug companies are currently racing to create the best and most far-reaching cancer immunotherapy treatments.

THE BASICS: The human immune system is made up of cells that fight infection. When doing their job correctly, these white blood cells circulate in the body and spring into action to eliminate any foreign substance that does not belong, including bacteria and viruses. This is what happens when the immune system is working correctly.

When cancer develops, it seems that the immune system doesn’t work quite right. For some reason, the immune system doesn’t recognize the cancer cells as a threat – damaged, abnormal cells that do not belong – and destroy them. The cancer cells, scientists have discovered, are sometimes able to evade the immune system or to disrupt its function.

Padmanee Sharma

It is not that the immune system never tries to kill the cancer cells. It does make an attempt, says Padmanee Sharma, M.D., Ph.D., scientific director of the immunotherapy platform at the M.D. Anderson Cancer Center in Houston and a former American Cancer Society grantee. Sharma says that in mice, researchers can see that the immune system is able to get rid of cancer cells. “If we extrapolate to humans, we are probably all walking around with mutated cells and the immune system is getting rid of them – we just don’t know it is happening.”

For a variety of reasons, though, the immune system may eventually become less effective at fighting off the cancer cells. “It is really the accumulation of many mutations over time that causes cancer,” says Sharma. The immune system, she says, continues to kill off some cancer cells, but cancer cells evolve, get smarter, and learn to evade or suppress the immune system over time. “I say that the immune system caught what it could.”

The immune system eventually fails in eliminating the tumors or turns off its attack on the cancer cells, thinking it finished its job. “What we think now, is that with immunotherapy, we can reset the immune response and try to get things going again,” says Sharma.

Immunotherapies can work in several different ways:

  • Immunotherapeutic vaccines trigger the body’s immune system to beef up its response to cancer cells when a person already has cancer. These vaccines are not meant to prevent disease, like the measles vaccine, but instead are being used to treat cancer. There is currently only one cancer treatment vaccine that has been approved by the Food and Drug Administration (FDA) – Sipuleucel-T (Provenge), which is used in advanced prostate cancer patients who are no longer benefiting from hormone therapy. Other cancer treatment vaccines for various types of cancer – from bladder to breast to lung – are in the works.
  • What are known as checkpoint blockade drugs take the so-called “brakes” off the immune system, telling it to start attacking cancer, again. In many instances, tumors can put the “brakes” on an immune response, with certain molecules signaling to the immune system not to destroy a cancer cell. They are taking advantage of the mechanism the body uses to keep the immune system from going overboard and attacking normal cells. Currently, two such checkpoint molecules are the focus of most drug development in this area – these are called CTLA-4 and PD-1. Scientists are also finding additional checkpoint molecules – or brakes – which may lead to more ways to get the immune system to target cancer.
  • Experimental adoptive cell transfer therapies involve removing immune cells from a patient’s body, reengineering them to learn to attack cancer, and then re-infusing them into the patient’s body. These treatments have to be personalized to each patient, making them resource-intensive and thus not as easily scalable as the checkpoint blockade drugs. There have been numerous examples of highly promising results with tumor specific, adoptive cellular immunotherapy in early clinical trials, but such treatments are not yet widely available.

Researchers are working on improving these immunotherapies, including combining them with one another and with other types of existing cancer treatments to make them as effective as possible.

As Sharma explains it, the immune system is like a car – with an ignition, gas, and brakes. Early experiments in immunotherapy, including her own work with cancer treatment vaccines, focused on stepping on the gas of the immune system. But then, researchers discovered that the immune system has brakes – and these brakes might need to be turned off.

“That was the paradigm shift in immunotherapy – for the first time someone suggested taking off the brakes to drive the anti-tumor response,” says Sharma. Now, she and others know that for the immune system to attack cancer, they need to make sure that not only are they turning it on and pressing the gas, but also that they have to take off the brakes.

WHY IT MATTERS: Leonard Lichtenfeld, M.D., deputy chief medical officer for the American Cancer Society, remembers attending a grim meeting about the lack of new treatments for melanoma just a couple years ago at the annual American Society of Clinical Oncology (ASCO) conference. “It was very disappointing,” says Lichtenfeld. “It turned out that just a couple of years later, though, we got some reports of very dramatic responses to the use of the drug ipilimumab in melanoma and from that point going forward the role of immunotherapy has increased dramatically as an effective cancer treatment.”

Stories like this one, about new immunotherapies offering renewed hope where not too long ago there was none, abound these days – and point to why cancer immunotherapies matter.

Catherine Diefenbach

Immunotherapy is “providing options for people out of options,” says Catherine Diefenbach, M.D., an oncologist at the NYU Langone Medical Center. With the help of an American Cancer Society research grant, Diefenbach is studying a new immunotherapy treatment for patients with relapsed Hodgkin lymphoma.

“There are no really good options for these people now – most are cured upfront, but only about 50% of those who aren’t, can be salvaged with a stem cell transplant,” says Diefenbach. She is testing a combination of a drug currently used in isolation, Brentuximab vedotin, and the anti-CTLA-4 immunotherapy drug ipilimumab. “We want patients to have a long-term remission that they couldn’t get on Brentuximab alone.” “To date, chemotherapy for Hodgkin lymphoma has attacked the tumor cells, but no treatments have been aimed at turning the immune cells, which protect the tumor, against the tumor,” according to Diefenbach.

Diefenbach believes immunotherapies, like the one she is researching, will be “practice changing” in Hodgkin lymphoma. “These are very young patients – tend to be under age 35, so most deaths from Hodgkin lymphoma are in young patients … it is a tremendous loss of young lives.”

Sharma has the same types of hopes for the immunotherapy treatments she is testing – work previously supported in part by the American Cancer Society – in patients with advanced prostate cancer. Often, when patients reach this point, their cancer has failed to respond to radiation or surgery and they are given hormone therapy, which only works to slow prostate cancer’s progress. Hormone therapy also can have a lot of difficult side effects, such as reduced libido and impotence.

Sharma, in a clinical trial, treated metastatic prostate cancer patients with an anti-CTLA-4 drug. She and her team are still reviewing the data, but Sharma says “the study did look promising.”

“Some patients did have responses and didn’t need hormonal therapy for a long period of time,” says Sharma. The patients, she says, were grateful for that.

Examples like these appear in news stories fairly frequently these days. Recent reports include a New York Times story about an adoptive cell transfer therapy that achieved complete remission in a child approaching death from leukemia. And the Washington Post this year told the story of a checkpoint drug acting like “vanishing cream” to almost wipe out a man’s stage 4 melanoma. These reports highlight that the aura around immunotherapy is one of bright promise.

WHERE IT STANDS TODAY: Of course, much of this work in immunotherapy is early and experimental. This isn’t the first time that there has been great hope surrounding immunotherapy. “I always have to put a caution,” Lichtenfeld says.

“Back in early 1970s, immunotherapy was considered a breakthrough therapy that would harness the body’s own mechanisms to treat cancer and breakthroughs were on the very near horizon – and here we are 40 years later and there hasn’t really been a lot of progress on clinical translation.”

Progress in the past was slow and researchers didn’t have a lot of buy-in from the broader scientific community or pharmaceutical companies. But, since Bristol-Myers Squibb reported the first major trial results for an immunotherapy drug – ipilumumab – in 2010, the field has exploded.

Doctors and researchers are now making great strides at a more rapid pace – and they are hopeful. Years of research appear to be finally paying off.

“Now we are getting more excited because we are seeing real results and seeing ways immunotherapy can be used for cancer as a single or combined approach,” says Lichtenfeld. “Approaches researchers have been working on for decades are finally providing fruitful results that make it even more exciting for future applications.”

Importantly, pharmaceutical companies are getting on board and investing heavily in cancer immunotherapy treatments. “Major pharmaceutical companies are now making significant commitments to developing and testing immunotherapy drugs,” says Lichtenfeld. There are currently more than 900 cancer immunotherapy clinical trials listed on

“Immunotherapy has now demonstrated its value in clinical trials in a way that impacts many patients, the range of diseases impacted appear to be expanded more than we would have predicted,” says Lichtenfeld.

WHAT’S NEXT: The pace of progress in cancer immunotherapy is faster than ever. Much of the highly active areas of research involve improving the existing experimental cancer immunotherapies – making them cheaper, faster, better – and easier to distribute widely, which will make them more appealing and profitable for drug companies.

This year’s ASCO meeting was again abuzz with news of successful trials of new immunotherapeutic treatments. From anti-PD1 drugs and combination treatments for advanced melanoma patients to an adoptive immunotherapy trial that showed strong results in cervical cancer patients – the message around immunotherapy was one of hope and progress.

But as Lichtenfeld noted, those in the field are aware of the challenges. Learning to manage the side effects of the new immunotherapy treatments is one such challenge, says Sharma.

“These agents drive up the immune response – they create a very strong immune response, so we are doing it to all the T-cells in the body, so that can create an inflammatory process.” This inflammation can happen anywhere in the body and cause issues such as loose stools or skin rash, but it doesn’t happen in everyone and it isn’t always severe. Sharma says, though, that these are “on-target side effects,” with the immune system reacting from “what we wanted it to do.” And, these side effects can be controlled. “We can use steroids to control these side effects and not get rid of [the good] anti-tumor effects we want.”

Dealing with these side effects is mostly a matter of education, according to Sharma. “We [doctors] are programed for how to handle chemo side effects and we need to educate doctors now about how to manage immunotherapy side effects – the community at large is not aware yet and they just need to be educated.”

Funding is another challenge. “Somehow NCI and NIH missed the issue,” says Sharma. “Immunotherapy is a big deal. It is saving lives and it is curing people – I like using the word cure, because I don’t get to use it often. NCI needs to start paying attention – these drugs are important.”

Lichentfeld agrees that better funding is needed to help get immunotherapy treatments into the mainstream, including support for both the basic research that makes these types of discoveries possible as well as “more engagement of the pharmaceutical companies and others in funding the translational research that brings these treatments from lab to bedside.”

Certain types of immunotherapy treatments are further along than others. There has been more growth in the realm of checkpoint blockade drugs as the technology for making and testing them is more widely available, says Lichtenfeld. Adoptive cell therapy, however, has a longer way to go. It is much more labor intensive and thus costs more and takes more time. This type of treatment “still remains very much a research approach,” says Lichtenfeld.

BOTTOM LINE: Cancer immunotherapy is at once old and new. While initial immunotherapy discoveries were made decades ago, viable treatments haven’t really become available until very recently. But, the rapid evolution of effective immunotherapy treatments has doctors and researchers eager to put them to use.

“We are still early on, it will take time, but it is certainly getting there – and it just has to get there otherwise we are doing our patients a disservice. It is a huge crime that there are patients with stage 4 melanoma who do not get anti-CTLA-4 drugs,” says Sharma.

Increasingly, immunotherapies appear to be taking on the role not of a single replacement for existing treatments, but instead of an additional option – and one that can in many cases be used in tandem with other therapies to get the best results for patients.

“I believe immunotherapy will be part of the treatment approach to cancer care – it is one more tool for our toolkit,” says Lichtenfeld. “Many times it has been results of small pieces over time coming together to make a difference now for cancer patients – and hopefully immunotherapy will give us a significant leap forward.”


Rays Blog

Living With Mesothelioma -My Diary- The Eclipse and , A funny turn,


Yesterday was so exciting with the Eclipse taking place.

In all parts of the UK, the eclipse reached at least 83%, with the darkness peaking at about 09:35 GMT. The precise timing and degree of the eclipse varied with location.

For the Shetland Islands, the eclipse was at its height at 09:43 GMT and was very near total, with 97% of the Sun’s disc obscured by the Moon.

For those caught under cloudy skies, the internet was a good option to see the eclipse.

Scientific agencies had planes and even satellites gathering video to relay on the web and on television.

In the UK, the weather turned out to be slightly better than anticipated, with clouds breaking in many places at just the right time. London and the South East, on the other hand, just saw their grey day get slightly gloomier. It was a weird light though and the birds stopped singing.

There are some great videos on here

I caught up with the housework when life got back to normal.

Then I had a huge drop in my blood glucose . I sat down as I sweated and became so week. This is a side effect of the drug and the Doctors are aware I have this problem.

It is important that the blood glucose levels being aimed for are as near normal as possible (that is in the range of those of a person who does not have diabetes). These are:

  • 3.5–5.5mmol/l* before meals
  • less than 8mmol/l, two hours after meals.
  • Mine drops to 2 so its not a problem as such but I do have to keep watching and the Marsden have given me my own Monitor

Ray made a lovely cup of sugared tea for me and demanded I went back to bed where I slept to 1pm. He said he kept coming in to check on me. Its left me feeling very bruised in the face.(that’s the feeling)

But Im recovering today so I have noted it all down to discuss on Tuesday. Its frightening when it happens so many changes going on in the body and such a big fight going on. When you think what my Immune system is doing its pretty powerful.

We relaxed the rest of the day I didn’t even take the dog out for a walk. Just chatted to my cyber friends and read through lots of news on the computer.

I did cook dinner and didn’t seem to have any ill effects.

Love these words as they ring so true

Serious risks from common IV devices mean doctors should choose carefully, U-M experts say

This article was published and is a bit worrying but I have had mine in since May 2014 so I think Im ok

“These devices are very popular, but in an under-the-radar way, because they make care more convenient and can be placed relatively easily,” says Vineet Chopra, M.D., M.Sc., the corresponding author on all three new papers and a hospitalist at the U-M Health System. “But our new results, and review of research on the topic, show it’s important for physicians to think hard about both the risks and the benefits.”

Rays Blog


Living With Mesothelioma-My Diary-My Invite to The Actors Church, Verestem to meet me,A report of my Trial,Smog today, Spodden Valley Asbestos Story

All the arrangements have now be made for me to go to London on Wednesday to visit the Actors Church where the asbestos artwork will be installed on Tuesday March 24 in the garden outside The Actors’ Church in Covent Garden and will remain there until the end of Wednesday March 25. Without giving too much information away about the piece itself, it will be a glass installation that will have everyone’s messages floating around inside (to replicate the act of a pair of lungs breathing). The fans used to blow the messages around will be turned intermittently on and off so that when they’re resting on the bottom (which will be eye height) people will be able to read them. I had had this invite —–I wanted to let you know the details of the artwork’s launch as it would be wonderful if you would be keen on coming down. Of course all the messages are completely anonymous, but as your message is so emotive I thought it would be wonderful to see you backing the campaign and the artwork. And to also ask if you would be keen to potentially be available for any media interviews – of course we will be able to share any requests well in advance so you can feel prepared and fully brief you on the background of the campaign although your role would purely be to speak about your own personal experience.

I can get there on the Wednesday as Tuesday is my drug day but it has worked well with me getting a Email from Verastem saying.

Our CEO, Robert Forrester, will be in London next week meeting with the COMMAND study investigators. We’ve talked about the two of you getting together and perhaps this could be a good time? He is very motivated by your journey and would be pleased to finally meet you!

Deeply honoured to accept and to be able to chat about Immunotherepy.


There has been a really wonderful report on the Net. Its my Trial and we dont usual get a chance to see such a report. i have sent it to may of my Doctors as they are interested in the report.

Merck (NYSE:MRK) , known as MSD outside the United States and Canada, today announced that new data evaluating KEYTRUDA(R) (pembrolizumab), the company’s anti-PD-1 therapy, in both advanced non-small cell lung cancer (NSCLC) and malignant pleural mesothelioma will be presented as part of the Clinical Trials Plenary Session on Sunday, April 19 at the American Association for Cancer Research (AACR) Annual Meeting in Philadelphia, April 18 – 22.

The NSCLC data will be the first presentation of new efficacy and safety findings for KEYTRUDA from 495 patients, including validation of PD-L1 expression (abstract #CT104). These data are from the largest, multi-center Phase 1b (KEYNOTE-001) study of an anti-PD-1 therapy. With the mesothelioma findings (abstract #CT103), data evaluating KEYTRUDA will have been presented in eight different types of cancer.

“Our clinical program is investigating the potential of KEYTRUDA in a broad range of cancers where innovative approaches are truly needed – these data to be presented at AACR illustrate this effort,” said Dr. Roger Dansey, senior vice president, Late-Stage Oncology Clinical Development, Merck Research Laboratories. “At AACR, we look forward to sharing new data for KEYTRUDA across a range of challenging cancer types, especially in non-small cell lung cancer and mesothelioma.”

Selected Important Safety Information for KEYTRUDA(R)

Pneumonitis occurred in 12 (2.9%) of 411 patients with advanced melanoma receiving KEYTRUDA (the approved indication in the United States), including Grade 2 or 3 cases in 8 (1.9%) and 1 (0.2%) patients, respectively. Monitor patients for signs and symptoms of pneumonitis. Evaluate suspected pneumonitis with radiographic imaging. Administer corticosteroids for Grade 2 or greater pneumonitis. Withhold KEYTRUDA for Grade 2; permanently discontinue KEYTRUDA for Grade 3 or 4 pneumonitis.

Colitis (including microscopic colitis) occurred in 4 (1%) of 411 patients, including Grade 2 or 3 cases in 1 (0.2%) and 2 (0.5%) patients respectively, receiving KEYTRUDA. Monitor patients for signs and symptoms of colitis. Administer corticosteroids for Grade 2 or greater colitis. Withhold KEYTRUDA for Grade 2 or 3; permanently discontinue KEYTRUDA for Grade 4 colitis.

Hepatitis (including autoimmune hepatitis) occurred in 2 (0.5%) of 411 patients, including a Grade 4 case in 1 (0.2%) patient, receiving KEYTRUDA. Monitor patients for changes in liver function. Administer corticosteroids for Grade 2 or greater hepatitis and, based on severity of liver enzyme elevations, withhold or discontinue KEYTRUDA.

Hypophysitis occurred in 2 (0.5%) of 411 patients, including a Grade 2 case in 1 and a Grade 4 case in 1 (0.2% each) patient, receiving KEYTRUDA. Monitor for signs and symptoms of hypophysitis. Administer corticosteroids for Grade 2 or greater hypophysitis. Withhold KEYTRUDA for Grade 2; withhold or discontinue for Grade 3; and permanently discontinue KEYTRUDA for Grade 4 hypophysitis.

Nephritis occurred in 3 (0.7%) patients receiving KEYTRUDA, consisting of one case of Grade 2 autoimmune nephritis (0.2%) and two cases of interstitial nephritis with renal failure (0.5%), one Grade 3 and one Grade 4. Monitor patients for changes in renal function. Administer corticosteroids for Grade 2 or greater nephritis. Withhold KEYTRUDA for Grade 2; permanently discontinue KEYTRUDA for Grade 3 or 4 nephritis.

Hyperthyroidism occurred in 5 (1.2%) of 411 patients, including Grade 2 or 3 cases in 2 (0.5%) and 1 (0.2%) patients respectively, receiving KEYTRUDA. Hypothyroidism occurred in 34 (8.3%) of 411 patients, including a Grade 3 case in 1 (0.2%) patient, receiving KEYTRUDA. Thyroid disorders can occur at any time during treatment. Monitor patients for changes in thyroid function (at the start of treatment, periodically during treatment, and as indicated based on clinical evaluation) and for clinical signs and symptoms of thyroid disorders. Administer corticosteroids for Grade 3 or greater hyperthyroidism. Withhold KEYTRUDA for Grade 3; permanently discontinue KEYTRUDA for Grade 4 hyperthyroidism. Isolated hypothyroidism may be managed with replacement therapy without treatment interruption and without corticosteroids.

Other clinically important immune-mediated adverse reactions can occur. The following clinically significant, immune-mediated adverse reactions occurred in less than 1% of patients treated with KEYTRUDA: exfoliative dermatitis, uveitis, arthritis, myositis, pancreatitis, hemolytic anemia, partial seizures arising in a patient with inflammatory foci in brain parenchyma, adrenal insufficiency, myasthenic syndrome, optic neuritis, and rhabdomyolysis.

For suspected immune-mediated adverse reactions, ensure adequate evaluation to confirm etiology or exclude other causes. Based on the severity of the adverse reaction, withhold KEYTRUDA and administer corticosteroids. Upon improvement of the adverse reaction to Grade 1 or less, initiate corticosteroid taper and continue to taper over at least 1 month. Restart KEYTRUDA if the adverse reaction remains at Grade 1 or less. Permanently discontinue KEYTRUDA for any severe or Grade 3 immune-mediated adverse reaction that recurs and for any life-threatening immune-mediated adverse reaction.

Based on its mechanism of action, KEYTRUDA may cause fetal harm when administered to a pregnant woman. If used during pregnancy, or if the patient becomes pregnant during treatment, apprise the patient of the potential hazard to a fetus. Advise females of reproductive potential to use highly effective contraception during treatment and for 4 months after the last dose of KEYTRUDA.

For the treatment of advanced melanoma, KEYTRUDA was discontinued for adverse reactions in 6% of 89 patients who received the recommended dose of 2 mg/kg and 9% of 411 patients across all doses studied. Serious adverse reactions occurred in 36% of patients receiving KEYTRUDA. The most frequent serious adverse drug reactions reported in 2% or more of patients were renal failure, dyspnea, pneumonia, and cellulitis.

The most common adverse reactions (reported in >=20% of patients) were fatigue (47%), cough (30%), nausea (30%), pruritus (30%), rash (29%), decreased appetite (26%), constipation (21%), arthralgia (20%), and diarrhea (20%).

The recommended dose of KEYTRUDA is 2 mg/kg administered as an intravenous infusion over 30 minutes every three weeks until disease progression or unacceptable toxicity. No formal pharmacokinetic drug interaction studies have been conducted with KEYTRUDA. It is not known whether KEYTRUDA is excreted in human milk. Because many drugs are excreted in human milk, instruct women to discontinue nursing during treatment with KEYTRUDA. Safety and effectiveness of KEYTRUDA have not been established in pediatric patients.

Please read the link for more Info I just wanted to show the side effects as I found all of that so interesting.

 It has been a very very grey and cold day. We have been under a cloud of smog. Very foggy this morning across the Marshes.

This morning’s smog, viewed from Primrose Hill (Picture: Jeremy Selwyn

This was the scene as a cloud of toxic smog enveloped London today amid warnings it could cause “fatal” health problems.

The Department for Environment, Food and Rural Affairs said air pollution was blowing in from Europe and mixing with smog already above London to create a perfect storm for those with heart and breathing conditions.

Kay Boycott, charity Asthma UK’s chief exec, warned: “Two thirds of people with asthma find air pollution makes their asthma worse, putting them at an increased risk of a potentially fatal asthma attack.

“It’s vital people with respiratory conditions including asthma check air pollution forecasts, carry their reliever inhaler with them at all times, and ensure they are taking their preventer inhaler every day because this will help build resilience to asthma triggers like air pollution.”

A new bill has been introduced in the Senate that claims to improve upon the outdated and flawed Toxic Substance Control Act, but this new piece of legislation fails to address the danger of asbestos in the United States:

It really is time the Governments do sort all the problems out. The world is so contaminated and we should clean the air up. We must be allowed to breath fresh air.

There are nearly one million documents on microfiche sitting in the office of the Manchester Metropolitan University Business School academic Geoffrey Tweedale. They expose a scandal that ranks among the biggest and costliest of our age: how the Lancashire manufacturing giant Turner & Newall (T&N), once the world’s largest asbestos conglomerate, exposed millions to a lethal carcinogen in full knowledge of its dangers, using PR firms and politicians to hide a truth that it had secretly admitted to in 1961, namely that “the only really safe number of asbestos fibres in the works environment is nil”.

Hidden in this massive archive are documents, revealed here for the first time, which tell the story of corporate recklessness that has led to the deaths of thousands of men and women in Britain who were once exposed to asbestos.

People living in the Spodden Valley area of Rochdale in the 1950s used to joke that they would get frost all year round. The local wood was nicknamed “the snow trees” and even the blackberries picked in late summer were covered with a fine white powder. But the “frost” was no joke – it was asbestos blown from extractor fans at the Turner & Newall factory in the heart of the valley.

Derek Philips never worked there, but for 19 years lived just yards from the site. He played bass in a band with T&N workers and recalls the factory as “the centre of the community”. The guitars hang on the walls of his current home, a static caravan in the Pennine foothills where he waits to die of one of the asbestos-related diseases – meso thelioma, which appears decades after exposure to asbestos and which is killing more than 2,000 people every year in the UK.

His plight has been all too common in Rochdale. In the 1980s the New Statesman reported that on some roads near the factory every second household had lost a family member to asbestos diseases.

“I was diagnosed in October [2007],” says Philips. “A month later they drained three litres of fluid from my lungs. I couldn’t even stand up properly. I’ve just no chance, have I? I didn’t know about the risks.”

In the coming months, how he was exposed to asbestos and who he was working for at that time will become vital issues as lawyers fight to win compensation for Derek.

I hate to hear how people have to go through these fights. Other people have been through the fight it should really be speeded up more.

Please read the rest of the story through the link

Another wonderful story told by a Australian Mesothelioma Warrior!tag-asbestos

I have my own Newspaper now I have to play around with it as I dont know all the little extras but here it is.

Living With Mesothelioma -My Diary- St Patricks Day, A visit to the Vets and a visit to the Doctor for me and a strange dream

We have had a busy busy. Window cleaner day and we missed paying him.OOps
We had to get Louis to the Vets for all his booster jabs. He has his passport to keep up to date and for some reason the jabs are cheaper now.
We got to the vets with time to spare and I had a quivering jelly dog. So nervous he makes me laugh. A lovely you man was there with his American Bulldog.
American Bulldog
Louis took a shine to him we were amazed.
We had a long talk about dog fights and the horrible life they lead. He was saying that he had to contact the police and show them how he was able to manage his dog. He had bred from her but didn’t like the responsibility of vetting the buyers.
There was another little dog that we had to wait to be seen and then it was Louis turn. He wasnt muzzled and he allowed (with a fight) for the nose drops for the Kennel Cough and he didnt even realise he had the jabs in his bottom. WoW!
The vet was asking how I was now and I mentioned that Dogs can get Mesothelioma and he shocked us by saying  It is the most common Cancer he is seeing. When I could recover I said when you think about it dogs are sniffing everything in all silly places. Would you all ask your vets the question I would love to know how wide spread this is.

Mesotheliomas are rare tumors derived from the cellular tissue that lines the cavities and interior structures of the body. These linings are called the epithelial linings, specifically the mesothelium. The mesothelial lining, specifically, is a membranous epithelial lining that is derived from the mesoderm cell layer, with its main functions being to line the body cavity, to cover and protect the internal organs, and to facilitate movement within the body cavity (coelom).  Mesotheliomas are the result of abnormal division and replication of mesothelial cells, and their migration to other sites in the body. This cellular behavior can occur in the thoracic cavity, the abdominal cavity, the pericardial sac around the heart, and for male dogs, in the scrotum. The resultant tumors will often displace internal organs, causing gastrointestinal or cardiac symptoms. Mesotheliomas also produce a lot of fluid, making microscopic (cytologic) examination of fluid samples an extremely relevant diagnostic tool.

 The German shepherd is the breed most commonly affected by mesotheliomas.

Symptoms and Types

  • Trouble breathing
  • Muffled heart, lung, and abdominal (ventral) sounds
  • Abdominal enlargement/swelling with fluid build-up
  • Large scrotum
  • Exercise intolerance
  • Fatigue
  • Vomiting


Exposure to asbestos is one of the known causes for mesothelioma formation.


Your veterinarian will perform a thorough physical exam on your dog, taking into account the background health history, onset of symptoms, and possible incidents that might have precipitated this condition. A complete blood profile will be conducted, including a chemical blood profile, a complete blood count, and a urinalysis. X-rays of the chest and abdominal cavities will be the most important diagnostic aid for confirming mesothelioma. Radiograph and ultrasound imaging can also be used to show effusion (escape of fluid from the vessels) or masses in the body’s cavities, and in the pericardial sac (the lining surrounding the heart).

Your doctor will also take a fluid sample for cytologic (microscopic) examination of the fluid. Exploratory surgery, or a laparoscopy (surgery of the abdomen), can be performed for removal of mesothelial masses for cellular examination in the laboratory.

All a bit of a surprise to read that

Tomorrow, the Senate Environment and Public Works Committee will debate two different bills to reform the federal Toxic Substances Control Act, or ‪#‎TSCA‬. However, only the proposal authored by Sens. Barbara Boxer (D-Calif.) and Ed Markey (D-Mass.) would give EPA the authority it needs to finally stop asbestos from being used in the U.S.

Dr. Irving Selikoff, an anti-asbestos pioneer

Ever wondered who was the first person who had the courage to stand up and speak against one of the world’s cheapest, most resistant and fireproof construction materials?

We did some digging and we found out that one of the first people who dared to incriminate asbestos as a source of dangerous and deadly diseases was Dr. Irving J. Selikoff.

For 30 years, from the 1960s to 1990s, America’s expert in asbestos, Dr. Selikoff, researched the dangers of this so called ‘miracle’ substance and found that as well as its many advantages it had one disadvantage that cancelled out all of the positives: it could kill.

A very controversial character, because of his claims, Dr. Selikoff is regarded both as a pioneer in asbestos epidemiology and as a demagogue who destroyed an entire industry, and who made exaggerated allegations about the dangers of the construction materials that contained asbestos. An article published in 2007, authors Jock McCulloch and Geoffrey Tweedale depicted a very thorough rendition of Dr. Selikoff reputation. When they gained access to the doctor’s personal letters and studies, they could paint a more realistic version of Dr. Selikoff’s personality.

“Nothing of any value had been written about Dr. Selikoff, despite his importance in changing public attitudes in the U.S. toward asbestos.”, Dr. McCulloch said. “Having read his letters we were both impressed by his integrity, his willingness to work with people with whom he disagreed, and his dedication to science as an open-ended enterprise”, he added.

Dr. Selikoff’s voice was heard for the first time in the ‘60s when his early researches linked asbestosis, lung cancer and mesothelioma to asbestos exposure, after studying factory workers. This discovery was met with great opposition from both the media and the industry and it’s claims were said to be bogus and over exaggerated. It was only in the ‘80s, when a lot of factory workers credited asbestos with their lung diseases, that Dr. Selikoff was cleared of any accusation that came from the media and when the public opinion finally began to question the dangers associated with asbestos.

This afternoon I had to go to the doctors and talk about my problems.
Turns out I have a water infection again. she showed me the tester strip. The top strip had turned purple and the other one turned a dark orange, Seems that means I have blood in my Urine. She has sent my sample on to the Lab for more testing.
Im on Antibiotics and a Canesten until the results come back. She said that the Immune system can be low. Just because the drug has worked it doesn’t say how strong the Immune is, and it is having to work so hard again.
All very interesting.
 I have to leave this crazy message as it is — I had it this morning from a Cyber friend—
Morning… Really odd question but is your house number 43 or does that number ring any bells with you?
Morning no i cant think of any connection

Oh… I had a crazy dream last night !

I went back in time.. And went to find you.. Haha
was i young maybe I was 43 again

Haha I’m not sure how far I went back… But I met a bloke who knew you and Ray and he said you lived just down the road at 43 can’t remember the road.. It was just a very odd and clear dream.. Oh well haha have a great day x
Ahh who did you meet ?

I don’t know his name… Wish my bloody alarm never went off now
was it three or eight
was it Seymour road

I’m sure it was 3.. Some kids told me there was 2 streets that had the same sounding name but this was a good 2 mile apart.. You apparently lived in the closer one !

It rings a bell.. But I’m not 100% sure… It sounded like Seymour road !!
dreams have other meanings i will try and work it all out Go back to sleep and finish the dream —–How very strange
I lived 20 minutes from Ray when i was 15 but that is making it fit and thats silly xx

If u could I would… I never have dreams like this.. But the last time I did they carried on for the next few nights…

It was so clear… I also went to see someone else and told them what happens later on and they thought I was crazy and sent me away haha charming x
well lets let it ride and see if anything does happen i do believe in the fact we leave our bodies when asleep

Was there and a main road between the areas you and Ray lived ?
I lived at 50 and Ray lived 48

Well lets see what tonight brings… Probably a load of rubbish but you never know haha x
I love it

Well I have searched dreams about time travel and “what a load of rubbish” Who writes this stuff haha
6 hours ago
What amazes me is why you should even dream of me let alone Ray as well very spooky

Yes very odd….
4 hours ago

What is even more odd is the fact… I was going to knock on your door and say “i’m from the future” haha
OMG isnt this all amazing. I wonder what it all means —can I blog this –not mentioning your name ??? it will be fun

Haha of course you can… you can mention my name I don’t mind everyone knowing i’m nuts lol
oh bless we need a laugh and a smile xx

Haha x

Let me know when you have blogged it x
I will send it to you I will do it tonight xx
have a cat nap you might be able to finish the story xx

Ha ha ok if I remember anymore I will let you know… I can remember the road lay out.. Do you need a map xx
yes xx

Ok… I will see what I can do… I don’t have a PC anymore because I have just treated myself to a Mac… so still trying to figure it out… xx
OK do a description

I’m downloading a app I will see what I can do with it x
I wait to see if he finishes the dream off -its so funny
Rays Blog

ajs (1000 x 662)