OMG what weather we travelled up to the Royal Marsden.

I was up at 4.30am in the pitch black with the wind blowing as  the Tail-end of Hurricane Gonzalo hit UK

But we did get to the hospital far to early as funny enough there wasnt one hold up with the traffic. We had a coffee then went to the ward where I booked in where all the nurses were singing out ” Hello Mavis you look so welll ” gosh yes you do look so well” It tickles me thats they even remember my name let alone my Trial and the good results Im having.

I then went to the waiting room.

After a long wait I was called in and had my bloods taken, my PICC line cleaned, weighed and blood pressure taken.

I did a sample of urine as I had a water infection last time.

Then back to the waiting room to wait to be seen by the doctor.

Ray and I both nodded and I did fall off to sleep for a minute.

The Doctor finally called me in and it was another new one. There is a team and I get to see a new one every month. This is because they are from other countries and come here tothe Marsden to train in Cancer treatments.

I really dont mind as a) they are learning about Mesothelioma and b) its great they are so enthusiastic.

She said my bloods were fine and I was keeping so well through the trial. I asked about the shrinkage The answer shocked me — she said I have —43% altogether. 33% on the first scan and 10% 4 weeks later.

She held her small finger up and said the marker one was this long at the start and half of that now, then there is a shrinkage in every area including the mass at the bottom of my lung.

I said no wonder you are all so happy about this its brilliant.

She said my bloods showed my sugars were low and I had a test with a prick to my finger. But they had risen back by then.

We went to the Cafe and had a cake and coffee then walked back to the waiting room where we got so bored waiting for my drug to be made.

Finally at 3.30pm I was called in to have my drug.

mars1

 

 

 

 

 

 

 

 

 

 

That only takes 30mins and then a flush of 5 and Im out, finished, and on my way home.

It was really windy and as we pulled up into our car park the heavens opened.Ray got soaked as he took Louis for a walk and I cooked dinner, while he was gone.

There was a parcel for Louis from Christine Winters. Louis sniffed it and carried it around for a while. I opened it and it was home made dog biscuits which he loved .

DSCF9487

 

 

 

 

 

 

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So that was the day.

http://www.walesonline.co.uk/news/wales-news/welsh-governments-remarkable-response-daily-7967737

Everyone referred by their GP via the urgent suspected cancer route is put on a 62-day pathway, during which all investigations (tests) are carried out. This is the same in Wales and in England.

“The target in Wales is for 95% of patients newly diagnosed with cancer via the urgent suspected cancer route to start definitive treatment within 62 days from GP referral. In the first quarter of 2014-15 (April to June) 87.4% of patients were seen within that time.

“The target in England is for 85% of patients newly diagnosed with cancer via the urgent suspected cancer route to start definitive treatment within 62 days. In the first quarter of 2014-15 (the latest figures available), 84.1% of patients were seen within this target.

“There is also a 31-day cancer pathway in England and Wales.”

“For patients newly diagnosed with cancer not via the urgent route the target in Wales is that 98% should start definitive treatment within the target time of 31 days. In the first quarter of 2014-15 (April to June) 98.1% of patients were treated within 31 days.

“In England, figures for the first quarter of 2014-15 (the latest figures available) show 97.8% of people treated began first definitive treatment within 31 days of receiving their diagnosis.

“The border between England and Wales is a porous one – patients from England and Wales receive care from the health services on either side of the border. It is therefore concerning that the Care Quality Commission has put the Wye Valley NHS Trust into special measures and rated Hereford County Hospital as inadequate.

“Indeed, the CQC has said that four out of five hospitals it has inspected are not safe. Its annual report, published on October 17, said: Safety was the biggest concern: four out of every five safety ratings were inadequate or requires improvement… far too many hospitals were inadequate on safety and the majority required improvement to be considered safe.’

Please read all the response.

http://mesoandme.wordpress.com/2014/10/21/tuesday-116/ Rays Blog sun 1

 

This has been a computer day. from early morning to late at night.

So much is going on, so many surprises. We have been doing a huge charity thing that I can reveal on Friday. I have really been enjoying working with a few friends and it is all coming together friday. Promise

I have booked a Hotel for IATP’s Winter Wonderland in January

invite finished draft

hotellobbyfull

Looks a lovely place.

I went for a walk around the local playing field. Louis loved the other dogs there and wanted to play with them as they chased their balls their owners were throwing. He was good and no barking He had done that in the park. Its the only place we havent got him under control. He really must think he has to protect the park.

The weather was windy and chilly out of the sun.

http://www.telegraph.co.uk/health/saatchi-bill/11173161/Experimental-drugs-for-patients-could-be-available-from-March-after-Government-backs-Saatchi-Bill.html

I bet Lord Saatchi was pleased with an article in the Telegraph and also on the news.

Alzheimer's drug 'could stop disease early'

Dying patients could be given access to untested medicines from early next year after the Government and doctors gave their backing to a bill proposed by Lord Saatchi.

Jeremy Hunt, the Health Secretary, has now thrown his department’s weight behind the Medical Innovation Bill which will make it easier for doctors to try out new treatments on patients without the fear of being sued.

The Bill – which has sharply divided the medical profession – has also received tentative backing from the General Medical Council, which earlier this year come out firmly against any change in the law, and a leading cancer charity.

The legislation was proposed by Lord Saatchi, the advertising magnate, who started to campaign on the issue after his wife Josephine Hart died from ovarian cancer.

Lord Saatchi told The Telegraph that the principle of allowing new drugs to be tested on desperately ill people was already being applied in the case of Ebola victims in Africa.

He said: “In dealing with the deadly Ebola outbreak, the World Health Organisation has decided that departure from standard evidence-based treatment is fully justified and essential.

“It has set ethical guidelines for the use of new therapies and interventions – they are identical to the provisions of the Medical Innovation Bill.”

Supporters said the plans – which could be law by March if MPs and peers agree – will allow victims of rare cancers to volunteer to be treated with untried drugs.

The late Josephine Hart and Maurice Saatchi. Photo: REX

Cutting out the need for years of clinical trials will bring down the cost of the medicine and may make pharmaceutical firms more likely to fund experimental drugs that only help a small number of people with rare diseases.

The Bill will be debated in the House of Lords this Friday and is due to be considered by MPs in the House of Commons In December. Its supporters said that the Bill now had a 75 per cent chance of becoming law.

Mr Hunt is hoping that the extra safeguard for patients will be enough to see off claims that the Bill is a “quacks’ charter”.

The Government has decided to support the Bill after new safeguards were agreed with Sir Bruce Keogh, NHS England’s medical director.

The amended Bill now requires the agreement of at least one other speciallist before trying out untested medical treatments on patients.

Currently doctors routinely ask colleagues in their hospital for their opinion on how to treat patients in what is called the “Bolam test”. The amended Medical Innovation Bill will require them to seek consent from other specialists in the field to pass this test.

This will stop “dominant personalities” in a hospital – perhaps a senior consultant – getting their own way and acting against the interests of the patient.

A Department of Health spokesman said: “Innovation is at the heart of modernising the NHS and is essential for improving treatments and finding new cures and work on the Medical Innovation Bill is ongoing.

“We are pleased that Lord Saatchi has tabled amendments to the Bill to help ensure patient and staff safety.” A source added: “The Government is currently minded to support the bill as amended by Lord Saatchi.”

The amendments have persuaded the General Medical Council – which opposed any changes in April – to give its tentative support for the change in the law.

Professor Sir Peter Rubin, the council’s chairman , said: “Medicine is a risky business. There are many people alive today because of the willingness of doctors to innovate, deal with uncertainty and take reasonable risks which are understood, shared with, and consented to, by the patient in accordance with good medical practice.

“While we welcome the amendments to the Bill in Lord Saatchi’s name, we look forward to seeing the final version.”

Cancer Research UK, which has also expressed concerns about the originally-drafted Bill, also now supports the change in the law.

Sarah Woolnough, the charity’s Director of Policy and Information, said it was important that Parliament discussed medical innovation.

“We know that more could be done to promote innovation in cancer treatment, especially for patients with life-threatening conditions where there are few treatment options, and the Medical Innovation Bill aims to support clinicians to act innovatively where they have exhausted other options.

“The latest set of amendments laid on the Medical Innovation Bill are an improvement, requiring a doctor to seek advice from an appropriately qualified colleague before departing from standard treatment.

“We must ensure the Bill contains appropriate safeguards to protect patients. We will monitor the Bill’s progress closely and hope we will see a greater focus on innovation thanks to this Bill.”

Despite the changes, other doctors still remain concerned. Michael Baum, Professor Emeritus of Surgery at University College London, said last night: “Never once have we encountered interference or obstruction due to fear of litigation.

“There are of course many other obstacles to progress but changing the law with this bill is not going to accelerate innovation in cancer therapy, but might, as a result of unintended consequencconsequence endanger our patients by uncontrolled experimentation.”

Dominic Nutt wrote http://www.telegraph.co.uk/health/saatchi-bill/11172667/Huge-backing-for-the-Saatchi-Bill-has-helped-its-cause.html

It has been less than two years since the introduction of Lord Saatchi’s private member’s Bill, which seeks to support doctors who want to innovate and try new treatments for patients who have run out of other options.

In that time there has been amazing progress in what is, in parliamentary terms, no time at all – most private member’s Bills fall at the first hurdle. Yet Lord Saatchi’s Bill has defied political gravity.

It started as a Bill that the Government said it would not support, and also faced significant opposition from some sectors of the medical establishment. But it has transformed into one that is fully backed by Health Secretary Jeremy Hunt and thousands of patients, doctors, charities and medical organisations.

They agree that patients who are dying and who have no further life-saving treatments available to them should be allowed the chance to explore something new and unproven – if such novel treatments are available. And their doctors must be confident that they are entitled in law to explore and offer such treatments, when all else has failed.

The Medical Innovation Bill will allow doctors to do this without the risk of being sued, as long as they follow the tight procedures within the Bill. This will give confidence to those doctors who may be anxious about using novel treatments. The Bill will encourage innovation and add momentum to the drive to find new, effective and scientifically grounded treatments for incurable diseases.

Lord Saatchi’s one and only desire is to draft a Bill that works, that will help doctors to help their patients by increasing innovation in health. There is no other agenda. This means that he has been – and remains – open to suggestions and ideas. He wants the best Bill – nothing more.

On Friday the Bill, with its amendments drafted by Sir Bruce Keogh, the medical director of the NHS, will be scrutinised and debated line by line, and peers will offer further amendments. We welcome this – this is democracy in action. It is a process that has already improved the Bill and will continue to do so.

There are twists and turns to come and knots to be unpicked. Even now, there are organisations arguing for contradictory clauses to be inserted, and not all can be accommodated. But the past two years have demonstrated that through patience, listening and goodwill, most issues can and will be resolved to make this work for everyone.

The General Medical Council and Cancer Research UK had concerns about the original version of the Bill, but today they are largely positive. Their concerns were heard and the Bill changed accordingly.

This shows how far we have come, and how through genuine consultation and a desire to reach out to experts – doctors, scientists, lawyers and patients – good law can be created.

As Telegraph columnist Dr Max Pemberton wrote: “It is a tragic indictment of modern medicine that innovation is too often jettisoned in favour of the status quo for fear of legal action. Defensive medicine is at the heart of so much clinical practice today, but the Bill – if accepted into law – would deftly excise this, leading the way for doctors to feel free to strive for medical advancement.”

All this is to late for our Darling OXO Mum We were all hoping she would reach that Christmas that she so wanted to see .

Loose Women did a lovely programme about her at dinner time

http://www.bbc.co.uk/news/entertainment-arts-29685903?ns_mchannel=social&ns_campaign=bbc_breaking&ns_source=twitter&ns_linkname=news_central

I put it her to record on my diary the loss of a really lovely lady, So pretty and so alive. RIP Linda

British actress and presenter Lynda Bellingham, who had cancer, has died at the age of 66, her agent has confirmed.

Sue Latimer said she died yesterday “in her husband’s arms”.

The actress, best known for her long-running role as a mother in the Oxo TV adverts, had been battling colon cancer since being diagnosed in July 2013.

Bellingham said she had planned to end her treatment to limit her family’s suffering after it spread to her lungs and liver.

In a statement on behalf of Bellingham’s family, Mrs Latimer said: “Lynda died peacefully in her husband’s arms yesterday at a London hospital.”

She added: “Actor, writer and presenter – to the end Lynda was a consummate professional.”

Lynda Bellingham in Oxo ad
Bellingham’s most famous role was as the much-loved mum in the Oxo adverts from 1983

Bellingham was also known for such shows as All Creatures Great and Small and in recent years was on the panel of ITV’s Loose Women.

Husband Michael Pattemore told Yours magazine, for which his late wife was a columnist, that she had been unable to die at home as she had hoped.

“She was in too much pain and they didn’t have it under control enough for me to be able to look after her,” he said.

He told the magazine: “I just want her to be remembered as an actress more than anything, not as a celebrity or one of the Loose Women.

“She started her career as an actress and never thought of herself as a celebrity – she’s always been an actress.”

Lynda Bellingham and Christopher Timothy in All Creatures Great and Small
She played Helen Herriot in All Creatures Great and Small, alongside Christopher Timothy

Speaking earlier this month, Bellingham said her decision to give up chemotherapy was “a huge relief because I took back some control of myself”.

The first 20 minutes of Monday’s Loose Women was dedicated to the show’s former co-host.

“The mood is very different in the studio today,” host Ruth Langsford said. “It’s a very sad day for us here on Loose Women… but we want this to be a celebration of Lynda.”

Bellingham’s friend Christopher Biggins gave an emotional tribute, telling the show: “Last night was a very difficult night, but I went to bed laughing, thinking of a joke she used to tell over and over again.

“It’s a blessing in a way, we don’t want her to suffer any more.”

Colleen Nolan, a panellist on the programme, was visibly moved but singer Jane McDonald, who also used to work on Loose Women, said Bellingham “would be mortified if we were all sad, weeping and wailing”.

She added: “We have to keep the spirit of Lynda alive.”

A final interview with Bellingham, which was recorded a few weeks ago, will be broadcast on Wednesday.

During an emotional appearance on the show recently, the actress told viewers: “Grasp it all, don’t be afraid, enjoy the bits you can and tell your family you love them while you have the chance.”

‘Naughty and funny’

After her death was announced, Christopher Timothy, who starred opposite Bellingham in All Creatures Great and Small, described her as “a real friend”.

“She was a life force. She was funny, she was loyal, talented and a great mum,” he told the BBC.

“On set, she was ‘one of the boys’ really – she was naughty and funny. We’ve all been expecting it, but it is so unjust she didn’t make her last Christmas as was her intention.”

Diana Moran pays tribute to friend and colleague Lynda Bellingham

Michael Redfern, who played Bellingham’s TV husband in the Oxo commercials that became a national institution, said “everyone liked her”.

“I think she was just normal, I think that’s all it was,” he said. “She was like the lady next door, the wife, your mother. She had everything, just a very open person.”

Kaye Adams, another of Bellingham’s Loose Women co-presenters, said Bellingham would be remembered as “honest, generous, kind, courageous, intelligent, thoughtful”.

‘Ultimate professional’

Denise Welch, who also presented on Loose Women, told BBC Ulster Radio: “She turned everything into a positive. She’s left a wonderful legacy. [She was] one of the best character actresses that this country has known.”

Bellingham was born in Montreal, Canada, but grew up near Aylesbury in Buckinghamshire after being adopted.

She studied at the Central School of Speech and Drama and went on to land roles including Helen Herriot in All Creatures Great And Small and the title role in sitcom Faith In The Future.

The actress, who had two sons and was married three times, was awarded an OBE in 2013 for her charity work.

candle (1)

 

 

What wonderful warm weather we are having for October. We turn the clocks back next Sunday with November the next day and yet we are still walking around in summer clothes and I wore my flip flops yesterday.

We walked in Tankerton with Louis and noticed the smell of Fish and Chips. People were sitting on the benches looking out to see eating their lunch. the fish here is so fresh as the Fishing boats go out at night and bring their catch into the harbour in the morning.

Children were running around and playing and dogs were enjoying the walking. There was a coach in the carpark and the cafes and restaurants were full, people sitting outside of the Pubs just enjoying the sun and yet in 2 months they will be celebrating Christmas.

I love the Seaside now we haven’t got to many visitors.

We shopped in the green grocers buy fresh Vegetables and walked right round to get back to the car.

Watched telly and worked on the computer in the office.

Talked about the back lash to the HSE App

IATP was mentioned in this report as they seem to be the only Training Company having a say –well along with my Opinion in Asbestos Justice.

Construction union UCATT have welcomed a new Health and Safety Executive (HSE) asbestos awareness campaign but has warned that workers have been denied effective advice for over four years due to government “penny-pinching”. The campaign will see asbestos safety packs distributed at TradePoint outlets and an app which can be downloaded onto phones and computers that informs workers when they are likely to come into contact with asbestos. HSE says it is a problem leading to the death of 20 tradespeople every week. UCATT general secretary Steve Murphy said the government’s bar on campaigns – the Hidden Killer campaign was on the blocks and ready to go when David Cameron came to power in 2010 – “means that for the last four and a half years, thousands of workers have been needlessly exposed to asbestos and their health put at risk.” UCATT said it was dealing with “an increasing number of cases where a lack of training or a lack of information means that workers are needlessly being exposed to asbestos.” HSE’s new campaign has its critics. They say a lack of awareness is not the problem for most building workers, it is an inability to act for fear of losing their job. The answer to this, they say, is a greater HSE emphasis on regulation, inspection and enforcement. And IATP, the organisation representing asbestos training providers, has warned that HSE’s app could encourage workers to undertake work with asbestos materials that should only be done by properly protected and trained licensed contractors. An unusually high number of comments critical of the app have been posted on HSE’s asbestos licensing web community forum.

http://www.tuc.org.uk/workplace-issues/health-and-safety/risks-newsletter/risks-2014/tuc-risks-676-18-october-2014#_Toc401229498

I had a great Invitation from Mesothelioma JLA PSP priority setting workshop. They arranged to have a final priority setting workshop in London on November 10th.  This is a day (10am until 4pm) where patients, carers and practising health professionals come together to discuss the top 30 prioritised questions arising from our survey and to jointly agree on the top 10 priority questions for mesothelioma research to answer.  The day is facilitated by James Lind Alliance advisers and the project steering group plans to publish a paper after the workshop about the year-long process and the results. There will be around 24 active participants in the workshop and we would like 12 of them to be patients or carers.  I’m writing to ask whether you would like to be involved in the day, to put across a patient’s point of view in the discussions.  The workshop will be held at Friend’s House in Euston, London,

So I have said yes of course and will report back.

With that all arranged I went to bed shattered.

Today The Mesowarrors have been arranging the Secret Santa. We love this bit of fun and it does make people happy to take part and forget their worries for a little while.

Also Ray and I have been for a walk and guess what I have got my trainers back one. my ankles are so small now. I walked around and was a bit unsteady on my feet. I will have to use my stick for the winter. The wind makes my lung so tight. I feel as if someone is squeezing the lung hard at the bottom. It is very very windy today infact it picked up a empty coke can and it travelled to us in the air with such a force we both shouted. It carried on and hit a cyclist off his bike. Goodness and the 300 mile storm hasn’t arrived here yet. What on earth is tonight going to be.

I have a lovely smell drifting in the house as 2 huge Lamb Chops are in the slow cook. Dinner is nearly ready.

The butcher at the farm shop cut two chops  from here about 4 inches deep I think one will be enough between two.

Knock Knock !! whos there !Mesowarrior  Karryanne –I have just had a wonderful surprise thank you and thank you for my Pumpkin. You have made my day xxxxxxx

She has taken a photo I will put it on when she loads it on Facebook

danceRays Blog   http://mesoandme.wordpress.com/2014/10/19/sunday-102/

Yesterday was a very slow day -well thats how I felt. It has been so busy with my support group off line and helping people to find a trial or a Hospital for treatment. I cant believe this is the cas. The sooner they get a central Database for trials and stop making it so hard for the Patient the better.

There are not a lot of trial for Mesothelioma so we have many searching for so few.

The great news yesterday was that Jim Homersham has been invited to the Royal Marsden  to talk about treatment.

Carol his wife said yesterday on our carers group –Fantastic news !! We have just heard from our hospital that Professor de Bono at the Royal Marsden will be happy to see Jim with a view to going on a trial. Hooray ! Just waiting for the date. I was so pleased I cheered.

Published on Sep 21, 2013

 playing Ain’t Nobody’s Business in the barn Barley Mow West Horsley 1997
Recorded by Nick Frost.
Vocals JJ Fairs

Jm Heads the Blues band Dr JJ’s Blues Band.

I wish him all the luck and hope we do meet up together.

Another Warrior Ray has had to come off a trial –Amanda says

I am now totally confused at how drug trials work. Having wondered for two months if he is on the drug or placebo , with absolutely no side effects at all, three days ago he notices a small raised area of skin at the top of his bottom, which may be a slight rash.

Not wanting to get carried away as just as possible it is a reaction to washing powder, he mentions it at the usual check up two days ahead of the dose. Note made in his records but nothing else mentioned.

All proceeding as usual with the waiting while drug made up etc today, when just as it is due to be administered can he go and see the doctor . Sees new doctor not connected with trial who looks at possible rash, dashes off and comes back to say – no dose possible, will put it off for a month.

CT scan will therefore be done after 2 not 3 doses , which jeopardises chance of remaining on trial.

Have I totally missed the point on this – since when does a minor, possible side effect, stop the infusion, of a drug they believe may halt a terminal cancer.

Has anyone else had a dose stopped for this reason – I have no idea how this makes any sense. We have a duty of care to patients we kept being told as not a licensed drug !!! So shame about not administering something that might slow down the cancer but at least you won’t have a pimply bottom!!!

I am so totally gob smacked by this , I can’t even think of a sensible question because the whole thing sounds like some Kafka nightmare. i remember reading the Saatchi bill exponents saying drug trial protocols made no sense for terminally ill diseases but I didn’t expect to come across it quite so soon.

Plus if you put a trial on pause , the minute you get the slightest hint of a side effect, surely that makes the trial less effective.

Any other experiences welcome

http://ajandray.wordpress.com/

I have only had a trial stopped because it wasnt working and my Mr Nasty kept growing. I would think that if a rash was observed then that was a sign that something was not right and I can see why they stopped it. Poor ray it is a very worrying time.

On googling The most common treatment-related adverse events in the tremelimumab arm included diarrhea, pruritus and rash.

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Good news as more money is being raised for Mesothelioma Research The National Institute for Health Research (NIHR) welcomes proposals for clinical and applied health research into mesothelioma. NIHR operates a number of research funding schemes and would like to receive high quality proposals on any aspect of mesothelioma, its prevention, earlier diagnosis, treatment or care (including palliative care) – where there are likely to be benefits for patients or their families, within 5 years of the end of the research.

http://www.themedcalls.nihr.ac.uk/mesothelioma

Every little bit is welcomed.

http://www.standuptocancer.org.uk/?gclid=CKeWvfTetcECFQjItAodXzcAwg

Last night Stand up for Cancer raised almost £15 million and maybe more by today as the money rolls in. It did a little rowdy at times and I felt uncomfortable with the comedy. Im ashamed to say I did turn it off.

I think more money would have been raised if it was done by the BBC.

But it has raised a good figure so thats what matters. Iwish the mentioned some of the rarer cancers like our Mesothelioma. The popular cancers raise the money but if Asbestos had been mentioned I would have been happier as would the Mesowarriors.

http://imig.org/archives/1841

A very interesting artical to read about Mesothelioma

Dr. Joseph R. Testa, PhD and colleagues, recently found that mice were more likely to develop the deadly form of cancer associated with asbestos exposure – known as mesothelioma – if they carried a mutation in a gene known as BAP1, which affects the expression of many other genes.  However, when it comes to mesothelioma, exposure to asbestos carries more weight than genetics – even mice that did not carry BAP1 mutations developed tumors after being exposed to asbestos, while none of the unexposed mice with BAP1 mutations showed signs of mesotheliomas by the end of the study.

“To get mesothelioma, having a BAP1 mutation doesn’t appear to be enough,” says Dr. Testa.

ADAO IMig

 

The IMIG are having a huge conference in South Africa where so many of my friends in the Meso world are heading.

http://imig2014.org/

Mig cordially looks forward to welcoming you to Cape Town, South Africa from 21 – 24 October 2014 for the 12th International Mesothelioma Interest Group Conference – the world’s premier medical congress on mesothelioma. Our theme is the ongoing quest for cure. It will be hosted by the South African Mesothelioma Interest Group (SAMIG), and held at the Cape Town International Conference Centre (CTICC) which is optimally situated in the city bowl, with the Table Mountain amphitheatre as the backdrop and the spectacular Waterfront on its doorstep. Cape Town was rated the world’s best tourism destination in 2011 by TripAdvisor. We trust that we will attract many delegates and stimulate a memorable and meaningful meeting, with some superb after hour’s entertainment and relaxation, and of course the opportunity to experience a bit of Africa.

We expect to attract professionals from the following disciplines:

  • Medical Oncology, Radiation Oncology
  • Thoracic Surgery
  • Pulmonology
  • Radiology
  • Pathology
  • Epidemiology
  • Basic Laboratory Research
  • Oncology and Clinical Nurse Specialists
  • Social advocacy

 

See you in Cape Town with its wonderful spring-summery weather and glorious hours of sunshine!

Sincerely
Dr Jim te Water Naude (SAMig Chair)
Prof Anthony Linegar (SAMig Co-Chair)
Prof Steve Mutsaers (iMig Chair)

IMG_20140517_181721Rays Blog http://mesoandme.wordpress.com/2014/10/17/friday-105/

Yesterday was very dull all day so making us feel lazy and cake eating day.We did manage to go out and walk around the local football field. Making Louis run around to really tire him out.

Today is so sunny so we will get out and walk the dog.

I have been working away on the computer after clearing out cupboards and drawers. Christmas is rushing onto us and I must get in control.

I was so pleased to get an email from Holland to say Mickey loved my video speech. I can relax now. he loves the fact I have come over as just a housewife. The box of dog chews behind me on a shelf gave the clue .

Caught up in the slowness of Clinical Trials and their results. I know how great Im feeling and dealing with Mesothelioma after 5.6 years but I musnt really shout it to the world as we have to wait for the results to be published

http://www.cancer.ucla.edu/index.aspx?recordid=730&page=644

MK-3475. The drug is an antibody that targets a protein expressed by immune cells called PD-1. In the body, PD-1 acts as an immune checkpoint, turning down the immune system’s T cells that otherwise would attack cancer cells as invaders. MK-3475 takes the brakes off the immune system and allows T cells to identify and attack cancer cells.

The U.S. Food and Drug Administration (FDA) granted breakthrough therapy designation to MK-3475 for unresectable or metastatic melanoma in May 2013 under its Accelerated Approval program.

In UCLA clinical trials, doctors are seeing unprecedented treatment success with MK-3475 in two types of cancer that have historically had very low survival rates. The first is metastatic melanoma, a malignant skin cancer that spreads (metastasizes) aggressively beyond the initial tumor to invade other vital organs, such as brain, lungs or liver. The other is lung cancer, the cause of the highest number of cancer deaths in the U.S. year after year.

I cant wait to see these results so that Phase 1 can begin for the Mesowarriors who have to wait until next year.

Im not getting any side effects but some people are.

I found a forum for the drug http://www.inspire.com/groups/lung-cancer-survivors/discussion/pd1-side-effects/?page=2#replies

So you can see the drug is being tolorated well.

I watched a wonderful program last night http://www.channel4.com/programmes/curing-cancer/4od

Channel 4 and Cancer Research UK’s Stand Up To Cancer – a joint national fundraising campaign including a  fortnight of inspirational programming and culminating on Friday 17th October in one raucous night of fundraising hosted by Davina McCall, Alan Carr and Dr Christian Jessen.

Our incredible trail launched last Friday, and has so far achieved over one million views on Youtube, as well as hitting a TV audience of over 10 million last weekend. This unmissable moment is just a taster of what’s to come, as we prepare to show cancer – it’s Payback Time.

Please see that Trials are the way to go for treatment as things are changing all the time and there are some wonderful People trying hard to find a cure for us. We are terminal so we have nothing to lose. We can infact help the future so changing our Negative into a positive.

Treatments are developed and tested in laboratories. For ethical and safety reasons, experimental treatments must be tested in the laboratory before they can be tried in patients. If a treatment described here is said to be at the laboratory stage of research, it is not ready for patients and is not available either within or outside the NHS. Cancer Research UK supports a lot of UK laboratory research into cancer.

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Rays Blog http://mesoandme.wordpress.com/2014/10/15/wednesday-103/

 

A very wet day to travel in this morning.

We had to goto Our Lung Tumour Site Specific Group, at Maidstone Hospital but the traffic was so bad so it took over an Hour.

We arrived first and then when people arrived that room wasnt set out for a meeting so we all mucked in and helped set tables out and moved the chairs.

We started the meeting late but it soon got going and Minutes from last meeting were signed off.

They have come up with a great form for GPs Suspected Cancer Referral Proforma.

A short tick list to tidy up and tofast track a patient into hospital when they present with a Lung problem.

They are really trying to cut the wait we patients have to get hospital and to have a scan for Diagnosis.

There was news of the Vats Test trial being good and they are now doing the draining of the Lung and Pleurodesis at 2 East Kent Hospitals just K& Canterbury to sort thiers out and then patients wont have to travel to London anymore.

They have the money and they have the staff but they cant take patients as they cant get beds.

Very frustrating !!!

The Ebus report always fascinates me. The Doctor who delivers his report is really cute and so dedicated to his job.

An EBUS is a procedure that allows the doctor to look into your lungs (similar to a bronchoscopy) but them to take samples of the glands in the centre of your chest (mediastinum) using the aid of an ultrasound scan, these glands lie outside the normal breathing tubes (bronchi).

A flexible tube (bronchoscope), which is about the size of a man’s little finger, is passed into your lungs via your mouth (you will have a mouthguard and some protective glasses on) with you lying as flat as possible. A small camera at the end of the bronchoscope enables the doctor to look directly into your windpipe (trachea) and breathing tubes (bronchi). A small ultrasound probe
on the end of the camera allows the doctor to see the glands in the centre of the chest (mediastinum) and take samples under direct vision. Occasionally, it is useful to look down your gullet (oesophagus) at the same time with the same camera (the anesthetic in your throat allows this), as sometimes the glands can be sampled from the gullet which often causes less coughing and is more comfortable for patient with breathing difficulties (if this is a possibility, it would be discussed with you beforehand by the doctor).

Most commonly, Endobronchial ultrasound-guided transbronchial needle aspiration is done to take samples from the central lymph glands in the centre of your chest (mediastinum) which may be enlarged for a variety of reasons. In 9 out of 10 cases, we would expect this test to give a helpful answer to the problem.

In 2 years they have done 60 a year with staging and Diagnostics so picking up 92 %  but the others were blood clots.

Great Development and is being noticed.

A very nice young woman gave us figures of work she had collated. Patients treated on Chemo.

16% stopped Treatment

Patients aged 67-74 completed. Proving we older patients can get through it so please dont stop us from having treatment.

When it came to trials it is very disappointing and they dont seem to be getting info on all the trials available.

I said I will keep chasing for a central information within the NHS. I was told at mesothelioma Uk that it was happening but obviously not quick enough.

They did talk of a Trail called Prince But I cant find it at the moment.

The Command Trial is coming to Kent.

So that is just a few points out of another good meeting.

They did mention BITOG as the place to find out more about Research  they say on their Web Page

There are some encouraging treatment and trial developments for mesothelioma that need to be communicated to all clinical teams. Key is the role of surgery and radiotherapy, as well as effective new drugs in development. The programme for the meeting has been put together with a view to helping to achieve the optimal management of mesothelioma and to showcase clinical research in mesothelioma – an area that the UK leads in globally.    BTOG is keen to engage with all clinicians and health care professionals in the UK involved in mesothelioma diagnosis, treatment, and research,

You have to go to the Conferences to find info and I went to the Oncology Forum  Seems to me trials are spoken of in so many places. A national Data Base is really needed and  I will keep asking.

I have been asked if I would sit in on Research and Trials meetings they have through the year as they want a patients view. Dr Shah said he immediately thought of me.

So we are going to discuss just what that will involve.

That was the meeting over and we came home.  It was still raining though so I made us a nice comfy meal, mince and mashed potato’s

 

Minced Beef and Onions with Mash Potato

http://mesoandme.wordpress.com/2014/10/14/tuesday-115/ Rays Blog

Another Article I have been involved in was Published today

 HSE App Sparks Fury In Asbestos Community

Posted on October 14, 2014

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Despite the recent successful resurrection of the campaign, the HSE came under scrutiny over the lack of accuracy within its new mobile app which supports the new campaign. It aims to inform builders of the safety measures to take when working with asbestos.

However, information claiming that it would take at least two hours for asbestos to become dangerous has sparked outrage across the community and asbestos professionals.

Meso Warrior, Mavis Nye spoke out:

“Having now read through this document I am disappointed. It is in my opinion a lost opportunity. The people who will eventually read it may have stumbled across it by searching HSE in the expectation that this body is the ultimate place for helpful information. But I think it doesn’t seem to fall into either camp the ignorant of the dangers of asbestos or the professional.

The professional will have or should have been trained by their employers. The ignorant will not have bothered to search the web.
But those that do could find this web site and after browsing may well reach the conclusion that it’s OK to work in an asbestos environment for an hour. Thus deciding that well it can’t be that bad if I can work in it for an hour can it?

Not much mention of protection either. For the professional they wont find a need to read it having been trained and aware of its dangers.

So I feel it’s an opportunity lost. Just who it is intended for. Perhaps the good intention was there by the author but it lacks impact lacks the wake-up call. As the carer of having a wife with mesothelioma a terminal lung cancer I see the face of the evil asbestos fibers every day watching someone you love slowly being destroyed in front of your eyes. There is nothing I can do absolutely nothing.
Your article could have even should have given the severest warning that exposure to asbestos however short could result in an untimely and painful death, nothing more nothing less.”

Mavis Nye, a prominent figure within the Mesothelioma and Asbestos Disease Community, was given 3 months to live but refuses to give up her fight with Mesothelioma. She was exposed to asbestos when washing her husband’s clothes after he returned home from work at Chatham Dockyard. She continues battling to speed up life-saving mesothelioma treatments.

“I do talk from experience of Mesothelioma.

I obtained Mesothelioma by washing my Husbands clothes as he came home from work at the Chatham Dockyard as a Shipwright. After his apprenticeship and then National service he returned to the Dockyard. This is when he worked with Asbestos all around as the laggers lagged everywhere in the ships when they were being refitted.

Through washing his clothes I was given 3 months to live in 2009 but with Chemo and trials I have managed to arrive at 5.5 years. I have lost so many friends in that time, some of them Tradesmen and DIY among School teachers.

There is no safe Asbestos and only 1 fiber could cause mesothelioma.

Please would the HSE change their bad advice or remove it.”

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I was asked by Linda Reinstein if I had a video on my speech at Mesothelioma UK. I sneaked it over on a PM and wow!! she shared it into here facebook and Twitter. I will now buck up courage and place it here

I was so so emotional and slipped a couple of times. I had just told me that I was the first in the world to have such a huge result and the world is waiting for my results so that they can carry on.—I was shakened as that is a huge responsibility I just want the Warriors to have a chance.  and Liz came over and hugged me –everyone said I was so human and they loved it but I haven’t put it around yet.

There has been some great comments on the IATP Newsletter against the HSE App so I think tomorrow when they are back at work things will really be hotting up.

We really do need something like ADAO a charity run  in the US who fight for Asbestos.  I thought we had the HSE but feel let down now.

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IATP do a great job training the Industry and we have Asbestos In Schools  so its left to these to fight our corner about Asbestos.

The Independent Asbestos Training Providers website only lists asbestos training providers that have submitted documentary evidence confirming their compliance with the regulations, including independent, external audits; where necessary. The details of these audits are included with the listings, for our clients to check should they so wish.
Whichever type of asbestos training you’re looking for; Asbestos Awareness (Type A), Non-Licensed Asbestos Work (Type B) or Licensed Asbestos Work (Type C) – the IATP site lists training providers in your area.
To find the ideal asbestos training provider to meet your needs,
If you are an asbestos training provider and wish to know more about listing on this site, please .
IATP is supporting the HSE’s Asbestos: Hidden Killer campaign, which is seeking to raise awareness of the dangers of asbestos among tradesmen and women. Currently, each week, roughly 20 tradesmen die because of exposure to asbestos; to see how asbestos can affect you,

Iatp have told me Mesothelioma UK, DAST, AASC etc, they all fragmented though, dont work together, US doesnt have the same as us in the charity sector.. Linda is tackling 2 fronts, banning US and supporting patients / families, we dont have the same issues here’

HSE is the governing body, however they outsourced the campaign to a private company, that obviously has not expertise or experience with anything asbestos related. I do believe we will get the campaign changed to fit for purpose and regulations or ditched.. Big difference between us and US is that we banned asbestos 1998, they still import and use in products.

ADAO is on a loose loose until they ban it completely.

We also have IBAS.. Laurie is a huge positive for the UK and the UNIONS who are absolutely awesome and Hazards. we have a lot going for us UK

Laurie wrote http://www.ibasecretariat.org/lka-blog.php

 

October 1, 2014

Lessons to be Learned: The Fight for Asbestos Justice in Italy

People whose lives have been scarred by exposure to asbestos have a right to see their abusers punished. Unfortunately, in the UK the great asbestos barons escaped with their pensions intact and their liberty unaffected. Where our judicial system has failed, the Italian one has succeeded. The 2012 jail sentences handed down by a Turin Court to former asbestos businessmen Stephan Schmidheiny and Jean-Louis de Cartier de Marchienne were landmarks in the global fight for asbestos justice.

Last week (September 25 and 27, 2014), the Italian press reported the latest prosecution for asbestos crimes. Public prosecutors Lorenzo Boscaglio and Gabriella Viglione have indicted thirty-nine defendants, all of whom were former owners or Chief Executive Officers of the Olivetti company; many of these individuals were well-known Italian businessmen. According to the press reports, asbestos contamination was rife at the Olivetti plant in Ivrea, thirty-five kilometres from Turin. A particularly worrying source of exposure was the talc used in the manufacturing process; it was contaminated with tremolite asbestos.

Sixty-eight year old Olivetti office worker Bruna Luigia Perellohas has mesothelioma. She never worked with asbestos but believes her exposure took place when she visited the shop-floor. Since she was diagnosed in 2011, she has had two surgical interventions. She is determined to see the people who caused her terminal illness in court. Commenting on the case, her husband Orfeo Maozin, who worked in Olivetti’s IT department, said: “We thought Olivetti was a safe place, we never thought it would end like this.”

Fundamental facts which will be examined by the prosecutors during the trial include the following:

  1. the risk posed by tremolite contamination at the plant and the existence of a 1981 Turin Polytechnic report which highlighted the hazard;
  2. the presence of asbestos in the canteen;
  3. the delay in decontaminating the factory which was, it was alleged, due to corporate cost-cutting;
  4. allegations that measurements of airborne asbestos fiber dispersion were deliberately adjusted and falsified;
  5. failure to prioritize the health and safety of workers.

Mrs. Perellohas has a right to her day in court so too do asbestos victims in Britain and elsewhere. It remains a grave injustice that outside of Italy, few judicial systems have the ability or desire to stand up for the injured. As the case against the Olivetti executives progresses, we await the time when British asbestos executives, directors and owners find themselves facing criminal charges for the harm they have done.

September 25, 2014

Asbestos: Shared Legacy, Divided Response

One thing is certain – where asbestos is used, a trail of avoidable death follows. In developed countries, the dire consequences of hazardous human exposures are recognized. As a result, the future use of asbestos has been banned or seriously restricted.

This week the Governments of Israel and France announced million dollar budgets to remove asbestos from national infrastructures, with France’s Housing Minister Sylvia Pinel declaring war on asbestos in public housing. Her actions are both warranted and proportionate; last month, (France’s) High Council of Public Health predicted that between 2009 and 2050, up to 100,000 French citizens could die from asbestos-related diseases such as mesothelioma and cancer of the lungs, larynx, and ovary. That equates to the elimination of the population of a city the size of Nancy, Montreuil, Nanterre or Avignon.

The consequences of inaction are known. The tragic situation of a Canadian Professor with the deadly asbestos cancer mesothelioma is featured in the current issue of the CAUT trade union bulletin.1 Sixty-two year old Patricia Martens is a distinguished research scientist in the University of Manitoba’s faculty of medicine. She believes that workplace exposure to asbestos caused her disease. She is not the first of her colleagues to be affected; anthropology Professors William Morgan and John Matthiasson died shortly after receiving mesothelioma diagnoses in 1994 and 2001 respectively.

And yet, it seems even in the face of the personal tragedies of these and other Canadians, lessons have not been learned. Today (September 24, 2014), it has been reported that refurbishment work at Nunavut Arctic College in the Northwest Territories has been carried out with a complete lack of protection for the workers as well as staff and students who continued using the premises during the deadly renovations.2No risk assessment was carried out even though it was known by the authorities that the 1950s building was constructed with a range of asbestos-containing materials including drywall, ceiling tiles and vinyl flooring.

Who knows what the consequences for those exposed to asbestos during this incident will be. In a country where asbestos was once king, it seems that policy makers and government officials continue to turn a blind eye to the killer dust. It doesn’t need to stay this way. Canada, for so long a part of the problem, could become part of the solution. The first step is to outlaw the use of asbestos! The next is to work with federal, provincial and municipal stakeholders to develop an integrated and detailed program to address the country’s asbestos legacy. An asbestos-free future is possible – even in Canada!

Asbestos Disease Awareness Organization (ADAO)

 

The Asbestos Disease Awareness Organization (ADAO) is the largest independent asbestos victims’ organization in the U.S. It was founded in 2004 to give asbestos victims and concerned citizens a united voice, to raise public awareness about the dangers of asbestos exposure and to work towards a global asbestos ban. ADAO is dedicated to preventing asbestos-caused diseases through national and international education, advocacy, and community initiatives.  http://www.asbestosdiseaseawareness.org/about-adao

Linda Reinstein became an activist after her husband, Alan, was diagnosed with mesothelioma in 2003. Her search for answers led her to the realization that she and Alan were far from being alone. In 2004, she co-founded the Asbestos Disease Awareness Organization (ADAO) to reach out to those who have been affected by asbestos-related disease. Now serving as President and CEO, Reinstein has focused the power of the social networks to instantly unite those affected by asbestos-related disease, and those fighting for a ban on asbestos in the U.S. and elsewhere. She has frequently served as a U.S. Congressional witness and has also presented persuasive testimony and keynote speeches for organizations like the United Nations, U.S. EPA and the British House of Commons. Since 2004, Reinstein has been a strong political voice for justice in every major asbestos-related issue.
Also the US has The Meso Foundation (formerly MARF) is the only non-profit organization dedicated to ending mesothelioma and the suffering caused by it, by funding research, providing education and support for patients and their families, and by advocating for federal funding of mesothelioma research. http://www.curemeso.org/site/c.duIWJfNQKiL8G/b.8598593/k.D685/Homepage.htm

Run by Mary Hesdorffer who is a Research Nurse Executive Director at Mesothelioma Applied Research Foundation.

Mary Hesdorffer received her undergraduate degree at the College of New Rochelle in NY and went on to receive her Masters of Science at the same institution. She is fully credentialed as a Nurse Practitioner and has spent 16 years actively treating patients with mesothelioma.

Mary has an expertise in the development and implementation of clinical trials. Her work has been published in peer-reviewed scientific journals and she has lectured nationally on the topics pertaining to mesothelioma with particular emphasis on clinical trials as well as symptom and disease management.

Mary has been a strong voice in urging increased transparency to the medical and legal issues surrounding mesothelioma with a strong emphasis on ethics.

She is passionate in her commitment to the treatment and management of this disease and hopes to increase awareness of the need to advance the science that will lead to a cure. She is available via phone or email to assist patients and caregivers as they move from chaos to control of this new situation they find themselves thrust into.

These three women will be at the Cape Town, South Africa from 21 – 24 October 2014 for the 12th International Mesothelioma Interest Group Conference – the world’s premier medical congress on mesothelioma. Our theme is the ongoing quest for cure. It will be hosted by the South African Mesothelioma Interest Group (SAMIG), and held at the Cape Town International Conference Centre (CTICC) which is optimally situated in the city bowl, with the Table Mountain amphitheatre as the backdrop

We have a lot of Mesothelioma Nurses attending this meeting.

The aims of SAMIG include:
1. To establish a South African interest group with the necessary infrastructure to host the
International Mesothelioma Interest Group (IMIG) conference of 2014 to be held at Cape
Town International conference Centre.

2. To establish an accessible panel of SA specialists with a particular interest in this disease who
would be able willing to provide information and support for sufferers and their families as
well as medical advice to their managing clinicians.

We will have to see how this week pans out and what the HSE will do to rectify the damage they will cause im the Industry and the home. You can see we are very disjointed here in the Uk and this really needs looking at. We have banned Asbestos her in the UK but who would have thought it is still causing such an uproar. I hope that it can be resolved and that Asbestos dangers are not made so light.

MY MESSAGE TO THE HSE

ASBESTOS KILLS US NOT NOW BUT IN MANY YEARS. DONT LET MY HARD WORK AND STRUGGLE FOR LIFE TO BE IN VAIN. THERE IS NO TIME LIMIT TO EXPOSURE. IN 1/2 MIN IT WOULD BE ENOUGH TO KILL IN LATER LIFE. PLEASE KEEP  THE INDUSTRY SAFE AND THE CITIZENS OF THE UK.

PLEASE CORRECT YOU APP BEFORE SOMEONE HARMS THEMSELVES.

Here are the comments so far on the IATP Newsletter.

http://www.iatp.org.uk/iatp-weekly-update-blog/ IATP have hade mainy emails as well

  1. OMG, the HSE web app a little knowledge is dangerous, i wonder if the environment agency has seen the guidance it gives for the waste asbestos?

  2. I cannot believe that HSE really can say that 2 hours of DIY working with Asbestos is safe. This is so dangerous as It only takes one fiber to cause mesothelioma 30/40 years on. What about Insurance as they wont agree to that advice. You fail to say that you have to double wrap the Asbestos and that it is hard to dispose of it so take small amounts to a Asbestos disposal Station.
    You really have to rethink this and you have thought about this. Asbestos needs to be handled by the experts.

  3. I am totally horrified by this new ‘app’.
    For years I’ve been telling tradespeople how dangerous asbestos is and this app contradicts every safety aspect going. Drilling AIB? Licensed contractors are advised against power tools so why is it now ok for the public to do this? This is crazy. A very sad day for the people who have faught so hard. HSE? What a joke.

  4. FACT: There is no safe minimum where asbestos is concerned.
    So on what science is the 2 hour limit based?

    FACT: too many people have died for too long based on inadequate guidelines.

    HSE you have a chance to put this right don’t waste it

  5. Mavis keep up the good work.On a more sober note these outfit’s are formed to take the heat off the industry, in Canada we have WCB site they advocate for free testing for asbestos but what most people do not understand when you take their free test you automatically fall under the WCB act, the employer is protected from lawsuit hell even your doctor is protected under this act.

    The WCB of Canada were involved in the coverup of how deadly this product was for years the fox now is trying to convince the chickens that they are really good guys just looking out for their best interest!

  6. In principal this is a good idea. However there is no reference to the legal requirement to be trained or wear appropriate FFP3 mask with face fit testing. Those two items alone would protect even an idiot (although possibly not those around him)

    I really can’t believe that senior sources within the HSE have allowed this APP out in its current format. I think they are potentially leaving themselves open to criticism and worse, culpability if someone is exposed to asbestos because of the omissions in this APP

I have been so busy these past days.

On Friday I had to get up early shower and put makeup on as I was being filmed on Skype. A very lovely Dutchman had made arrangements for Friday at 9am and he came on line dead on time.

I recorded my speech with him and he was happy with the sound.

It will be used  For the opening of the Netherlands National Asbestos Conference –Automatisch antwoord: National Asbestos Conference Later this month.

I had been given a guideline to work to

- How did you obtain mesothelioma?
– How did the mesothelioma affected your live?
– How did you become an asbestos warrior and what did you achieve as asbestos warrior?
– This year in Holland we got more stricter rules regarding to working with asbestos, the approved emissions are much lower then before. A lot of professionals in the asbestos sector are very critical about this because the costs of removing asbestos are getting much more higher. What is your view about stricter regulations of the government for better health conditions in relations to economic disadvantages?
– What is/are the most important message(s) you have for professionals working in the sector of asbestos?

I did get some help from Mark and he gave me a lot of very important facts and figures but I knew if I used that it would be very technical so  I sent then in under Marks name to be used in a presentation on its own if they so wished.

After the conference I will publish my video on here alongside these as at the Moment I have to keep quiet.

So many little secret things are going on but I will reveal one by one.

 

With that out of the way we went to Canterbury Lidle’s  and shoppe.

Came back and chased people to get this HSE App sorted as the Industry and Warriors feel all our hard work has been undone.

Iatp have a comments page where they want everyone to make a comment.

Her is the APP

http://www.beware-asbestos.info/

Please put you comments here

http://www.iatp.org.uk/iatp-weekly-update-blog/#comments

This morning there were comments on my face book and I contacted MPs etc etc

The rain was absolutely tipping down and ray saw a wonderful Rainbow by the time he got his camera out it was gone.

I managed to walk the dog at the park but it was really getting black clouds again and we got back just in time before thunder made us jump.

A friend who had been to St Barts Friday as Richard has started the TRAP Trial. He had a long train journey home but is feeling very good so far.

Lyn has taken some great photos of the new Clinic, it’s joined to old building where you go into the courtyard where water feature is it is opposite called king George building 1st floor clinics ground coffee. Radiotherapy 7th floor chemo suite looking towards gurkin. Pet scan is still in old building. Peter and Jeremy on first floor they have theatres on 3rd floor. Only opened 2 weeks /3 weeks ago.

 

I bet JS and Peter love it after the very old building they had their Clinic in all these years.

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st barts

 

 

 

 

 

 

 

 

 

 

st barts 3

 

 

 

 

 

 

 

 

 

 

 

st barts 4

 

 

 

 

 

 

 

 

 

 

 

Doesn’t it look great. Well done St Barts

Rays blog for Friday as he has the flu today and is coughing away. http://mesoandme.wordpress.com/2014/10/10/friday-104/

 

Im going to be technical tonight -sorry but the HSE has gone mad.

They have come up wit a very dangerous tool for advice I want to share it with you as something must be done to protect people against Asbestos.

All our campaigning is going out of the window.

Iatp Asbestos

IATP have written a newsletter that explains it.

1.3 million tradespeople at risk from dangers of asbestos

Health and Safety Executive launches new safety campaign as an average of 20 tradespeople die every week from asbestos related diseases.

Tradespeople, including construction workers, carpenters and painters and decorators, could come into contact with deadly asbestos on average more than 100 times a year* according to a new survey commissioned by the Health and Safety Executive (HSE)**.

As well as illustrating how often tradespeople can be exposed to asbestos, the survey revealed some common myths believed by those at risk, with 1 in seven (14 per cent) believing that drinking a glass of water will help protect them from the deadly dust and one in four (27 per cent) thinking that opening a window will help to keep them safe.

Only a third (30 per cent) of those asked, were able to identify all the correct measures for safe asbestos working, whilst more than half (57 per cent) made at least one potentially lethal mistake in trying to identify how to stay safe.

Twenty tradespeople, on average, die every week from asbestos related diseases.

Asbestos can be found in walls and ceilings, or the structure of a building, as well as a host of other places like floor tiles, boilers, toilet cisterns, guttering and soffits.

It can be disturbed by basic maintenance work like drilling holes and sanding and once disturbed, the microscopic fibres can prove lethal if breathed in, causing lung disease and cancer.

The research, undertaken by Censuswide in September 2014, shows that while more than half (53 per cent) knew that asbestos could be in old buildings built before 1970, only 15 per cent knew that it could still be found in buildings built up to the year 2000.

And although many of those surveyed could pinpoint some asbestos-containing materials, others were clueless, with only 19 per cent recognising it could also be hidden in common fixtures such as toilet seats and cisterns.

To encourage tradespeople to think about asbestos on every job so they are prepared to deal with the danger, HSE has launched a new safety campaign. Mark Harper, Minister responsible for Health and Safety, launched the campaign at the TradePoint store in Cricklewood. TradePoint is supporting the campaign by distributing asbestos safety kits to tradespeople through their stores across Great Britain.

A key feature of the campaign is the creation of a new web app for phones, tablets and laptops that helps tradespeople easily identify where they could come into contact with the deadly material as they go about their day-to-day work and gives them tailored help on how to deal with the risks.    PLEASE CLICK ON HERE Web App http://www.beware-asbestos.info/

You will see that disposal of Asbestos isnt mentioned. Its saying that working with it for 2 hours DIY isnt dangerous. Please stop the silly talk.

ASBESTOS is dangerous after  2 hours  is silly advice as 1 Fiber will kill you.

its expensive to remove asbestos, a trades man in your home will be much cheaper, it will affect surveyors, training, insurance and worst of all leave homeowners wide open to exposure .

IATP would be interested in your thoughts about the HSE campaign and content. mail to info@iatp.org.uk

The funny enough BBC Look East tonight showed this tonight

Thanks to Claire for Videoing the program with little Ethan in the back ground in his bath But his lovely Dad Paul has Mesothelioma and has been operated on. So please read their blog

http://ourmesotheliomajourney.blogspot.co.uk/2014/10/asbestos-awareness-and-mesothelioma-on.html?spref=fb

 

 

 

rain 1

A very wet day this morning

 

 

 

I stayed in and really cleaned the house. The story of Ebola has made me realise that I will be using a lot of bleach. If that does come to UK we must be very clean more so than when flu is around.

I was thinking when in London and having to queue for the loo that we will have to be so careful.

Our Local Lions  are having a meeting tonight and will then issue a flyer  as we have the chance again to raise money to help combat mesothelioma. The Fashion Show will be at the Seasalter Christian Centre on Wednesday, 26 November.2014.and will raise funds for research. I will help out of coarse as they want me to receive the cheque to pass onto the charity they chose.

I will auction my book that night and a dragon fly.

I had a phone call from my Doctor at the Royal Marsden. Elisa Fontana. She is a dainty as her name bless her.

She has had my results back on my Urine sample and I have an infection. She had tried to phone my GP ___Your going to love this. She couldnt get past the receptionist. Oh how we know that problem.

I said I will email and so she emailed the report and what Antibiotics I could have.

I immediately emailed this onto my GP and he sent a reply to say he had actioned it and the prescription was with the chemist for delivery.

While Elisa was on the phone I asked her if I could have the report of my Scans and she said I could ask for print offs when Im there on drug days so I must remember to ask a nurse to do that for me.

I also received a great Newsletter from Asbestos Justice   http://www.asbestosjustice.co.uk/justice-newsletter-issue-2-october-2014/

They have  covered Jeremy Steele one of my Heros and my London Doctor. I have mentioned him so many times

 

Jeremy is Co-Director of Bart’s Mesothelioma Research. He is a Consultant in Medical Oncology at St Bartholomew’s Hospital, the Royal London Hospital and the London Chest Hospital.

He qualified in medicine at St George’s Hospital, London in 1989. After training in general medicine and intensive care, he moved to the Royal Marsden Hospital where he treated his first mesothelioma patient.

At the Institute of Cancer Research he undertook doctoral research into paediatric leukaemia and brain tumours. Jeremy moved to Bart’s in 1997 where he has worked closely with Robin Rudd ever since. In 2000 he was awarded the Royal Society of Medicine Sylvia Lawler Prize.

Jeremy is a member of the Board of Directors of the International Mesothelioma Interest Group and numerous other mesothelioma clinical and research groups in the UK and abroad.

Contact Dr Jeremy Steele

Email: jeremy.steele@ bartsandthelondon.nhs.

Credit: Mesothelioma.co.uk

 

And Dean fennel wrote about a trial that runs until next year 31/01/2015 so dont hesitate if you need a trial.

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This month we are featuring MESO 2. A trial of Ganetespib with Pemetrexed and cisplatin or Carboplatin for Pleural Mesothelioma.

This trial looks at a drug called Ganetespib alongside standard chemotherapy for mesothelioma in the covering of the lungs. The trial is supported by Cancer Research UK.

In this trial, researchers want to see if they can improve the treatment of Pleural Mesothelioma by adding a drug called Ganetespib.

Ganetespib is a type of biological therapy called a heat shock protein 90 inhibitor. It stops signals that cancer cells use to divide and grow.

The aims of this trial are to:

  • Find the best dose of Ganetespib to give alongside Pemetrexed and Cisplatin or Carboplatin
  • See how well this combination of drugs works as treatment for Pleural Mesothelioma

Trial Design

This trial is in 2 stages. The first stage is a phase 1 trial. The researchers want find the best dose of Ganetespib to give with Pemetrexed and Cisplatin or Carboplatin. To do this they will give the first 3 people a low dose of Ganetespib with the usual doses of Pemetrexed and Cisplatin or Carboplatin. If they don’t have any problems, the next 3 people have a higher dose of Ganetespib. And so on, until they find the best dose to give. This is called a dose escalation study.

The second stage is a phase 2 trial. It is randomised. The people taking part are put into treatment groups by a computer. Neither you nor your doctor will be able to decide which group you are in.

  • Group A have Ganetespib, Pemetrexed and Cisplatin or Carboplatin
  • Group B have Pemetrexed and Cisplatin or Carboplatin

You have Ganetespib, Pemetrexed, Cisplatin and Carboplatin as a drip into a vein. You have Pemetrexed and Cisplatin or Carboplatin once every 3 weeks and Ganetespib twice every 3 weeks. Each 3 week period is called a cycle of treatment.You can have up to 6 cycles.

If you are in the group having Ganetespib, after 4 cycles of treatment your doctor may talk to you about continuing with Ganetespib only, if they feel you are benefiting from it.

The researchers will ask for blood samples and a sample of tissue from the biopsy you had to diagnose your mesothelioma. They will use these samples to find out more about mesothelioma and how to treat it. If you don’t want to give these samples for research, you don’t have to. You can still take part in the trial.

Pg 8 - Trial Img

Trial Details

Recruitment: Start 21/08/2013

End 31/01/2015

Phase: Phase 1/2

Chief Investigator: Professor Dean Fennell

Full Credit: Cancer Research UK

There are lots more info so please read the Newsletter

 

 

 

 

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