Living With Mesothelioma -My Diary- Workers Memorial Day- My drug is making the news and a lovely email about the Saatchi Bill


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Workers Memorial Day is a time to honor those who have lost their lives on the job.

Every year more people are killed at work than in wars. Most don’t die of mystery ailments, or in tragic “accidents”. They die because an employer decided their safety just wasn’t that important a priority. Workers’ Memorial Day (WMD) commemorates those workers.

Workers’ Memorial Day is held on 28 April every year, all over the world workers and their representatives conduct events, demonstrations, vigils and a whole host of other activities to mark the day.

The day is also intended to serve as a rallying cry to “remember the dead, but fight for the living”.

Over 20,000 people die every year because of their work. Most of these because of exposure to dangerous substances. In 2015 the theme for the day is “removing exposure to hazardous substances in the workplace Hazardous substances are found in almost every workplace in the UK and many workers have no protection against the possible effects, despite the fact that tens of thousands of workers have their health destroyed by asthma, dermatitis, lung disorders and cancers because of exposures.

In addition to hazardous substances many unions and trades councils will be campaigning on the general theme of demanding better regulation, greater inspections and an end to the anti-health and safety rhetoric from the government and their allies in the press.

The TUC coordinates activities across the country, publishing a comprehensive listing of events and suggestions. A listing of the global activities is available from the Hazards website.

Remember those lost at work and protect the living

Every year more people are killed at work than in wars. Most don’t die of mystery ailments, or in tragic “accidents”. They die because an employer decided their safety just wasn’t that important a priority. Workers’ Memorial Day (WMD) commemorates those workers. Workers’ Memorial Day is held on 28 April…
27 April 2015
Mesowarriors come under this heading which is so sad. We never asked to die from our work. We just wanted to earn money to bring our families up and give them a better life than we had. Ray and I were war babies. We had been through enough.
We now have to find a cure and so much money is being spent on Research. My treatment has become a breakthrough and Im so pleased to be able to help Mesowarroirs around the world and to show them we are on the brink of an answer.

Merck’s Drug Keytruda Shows ‘Encouraging’ Results in Mesothelioma Clinical Trial

Regardless of the name used – Keytruda, MK-3475, or pembrolizumab – Merck’s immunotherapy drug may be the lifeline mesothelioma patients around the world have been seeking. In a clinical trial, Keytruda was found to be effective in controlling mesothelioma tumors in three-fourths of patients.

Preliminary results of the Phase IB KEYNOTE-028 clinical trial offered to cancer patients with 20 different tumor types, including the asbestos-caused cancer mesothelioma, were announced at the 2015 American Association for Cancer Research Annual Meeting held April 18-22 in Philadelphia. Evan W. Alley, MD, PhD, and co-director of the Penn Mesothelioma and Pleural Program at the University of Pennsylvania, discussed the results of the trial with OncLive.

Dr. Alley reported that the 25 mesothelioma patients enrolled in the trial, all who had previously received standard chemotherapy treatment but still had tumor growth, received the drug every two weeks. Seven patients had partial response (a decrease in tumors size) and 12 patients had stable disease (no tumor growth or shrinkage). The final results show an overall disease control rate of 76%.

“The survival for this patient population in general, for mesothelioma, is about 13 months – so it’s a bad disease,” said Dr. Alley. And when patients undergo second round chemotherapy, which has just a 10 percent response rate and for which there is no standard of care, Dr. Alley said, “response rates are very poor.”

The fact that we saw 28% response, in this small study, and the additional stable disease rate, was quite encouraging,” said Dr. Alley.

Cancer is adept at evading detection by T-cells, which hunt down and kill intruder cells. By disrupting certain immune system signaling pathways, cancer can effectively deactivate T-cells and proliferate freely.

PD-L1, or programmed death-ligand 1, is a protein that has been shown to play a role in suppressing the immune system during cancer and other diseases. According to Merck, Keytruda blocks the interaction between PD-1 (a protein on the surface of T-cells) and its ligands, PD-L1 and PD-L2 (found on the surface of cancer cells), enabling activation of T-cells and an immune response to cancer.

“This study has provided an early glimpse of the potential benefits of using pembrolizumab in patients with malignant pleural mesothelioma,” said Dr. Alley. “More research and trials will be occurring, which we hope will provide further grounds for optimism.”

In Sept. 2014, the U.S. Food and Drug Administration granted accelerated approval to Keytruda (pembrolizumab) for treatment of patients with advanced or unresectable melanoma.”

Australian Mesothelioma Survivor Lou Williams Starts Therapy With Keytruda; UK Meso Warrior Mavis Nye Sees Success in Clinical Trial

Lou Williams, a double mesothelioma survivor (she has both pleural and peritoneal mesothelioma) of over 12 years, celebrated her 60th birthday on April 20. In her April 4 blog, though, Lou painted a bleak future as she struggled with weight loss and growing tumors. Without some intervention in her treatment, she wrote, “I will die probably in a few weeks – simple as that.”

However, Lou has been offered a ray of hope, announcing in her blog, Asbestos-Living with Mesothelioma in Australia Louise (Lou) Williams, that she is now taking Keytruda. Lou has gotten this far with four surgeries, 36 rounds of chemotherapy, countless days in the hospital, and most recently, even more chemotherapy and radiation. With Keytruda, her oncologist told her “hopefully” she could see 18 months or more of life.

“Thursday 9 April was a turning point in my progression of this cancer to being handed a life saving drug that will hopefully stimulate my immune system, shrink tumour progression and give me more quality of life and lots more living to do!” she said in her blog.

Keytruda is a new drug in Australia and the Therapeutic Goods Administration, the equivalent to the U.S. Food and Drug Administration, has registered the drug for initial treatment of patients with advanced melanoma. In the UK, meanwhile, Keytruda, referred to as MK-3475, is still in Phase I clinical trials.

Mavis Nye, a five year survivor of mesothelioma and Keytruda clinical trial patient at the Royal Marsden in the UK, has seen “brilliant results” with the drug. Mavis told MesotheliomaHelp in September that her tumors were shrinking and, “I’m feeling very well as my immune system has been turned back on by the drug.”

Mavis reports on her blog, Living with Mesothelioma, that she now has some fellow mesothelioma warriors to share in her experience. “I at long last have someone I can compare how I feel with as Lou and I message each other,” she wrote on April 13.

When asked in an email by MesotheliomaHelp what her personal hopes are for the drug, Mavis said, “I have so much shrinkage, my scan on May 19th could show more than 60%-70% at No 23 Cycle. My wish is for the shrinkage to take me back to thickenings as is happening to some of my smaller tumours.”

And the best may be yet to come for her. The researchers heading the trial are closely watching Mavis’ tumor shrinkage as they assess her response. “They are waiting to see just how much shrinkage I will get as I haven’t reached all the shrinkage that I think could happen,” she told MesotheliomaHelp.

The success Mavis and other patients have seen, however, should be tempered by the reality that mesothelioma—diagnosed in approximately 3,000 Americans, 2,500 Brits and 600 Australians each year—remains an extremely stubborn cancer with no cure.

In addition to medical breakthroughs, it is important to focus attention on legislative solutions that outlaw asbestos. Unlike the UK and Australia, the United States has not banned asbestos, which causes an estimated 10,000 deaths in this country each year.

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Lets pray that this works for Lou, who is receiving the drug as a last result as it has been passed in Australia for Skin Cancer so she has been able to receive it privately by paying a third of the cost. Im so grateful we have a NHS system which we must protect as it means so much to be able to be free of cost at this point in my life. Although Ray and I paid for years into the system through our working all our lives.

I did have a lovely Email from  The Rt Hon Norman Lamb  in response to my email asking why The Saatchi Bill wasnt allowed to get to the House of Commons.

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I will be behind the team if the Bill is reserected in the New Parliament

Re: Saatchi Bill – Medical Innovations Bill

The Liberal Democrats supported the basic aims of the “Saatchi Bill” – to support medical innovation.
However it was not clear to many doctors and medical research organisations that the Bill would genuinely help medical innovation – and instead it risked leaving some of the most vulnerable patients and their families open to dangerous exploitation.

It is so important to make sure that we get the law right in this area. Any law which could potentially risk lives needs to be subject to proper scrutiny. Many medical bodies such as the BMA, The Patients Association and The Welcome Trust said the Bill should not be passed in its current form.

I wrote to the Health Secretary expressing concerns that there was not enough time to properly consider the complicated legal and medical issues around this during the passage of this Bill. 

But we must not kick this issue into the long grass.  I want to encourage medical innovation and to identify and address the real barriers to innovation.
Instead, I have proposed that the Government launch a thorough investigation into this issue, led by a professional expert. It should involve wide consultation with stakeholders including patient organisations, legal bodies, royal colleges and medical unions.
If such a review concludes that legislation is required, I want us to introduce new draft legislation before the end of this year.

I hope this explains my position.

With best wishes,
Yours sincerely

Norman Lamb

The Rt Hon Norman Lamb

I feel as long as the New Government is responsive we will get it back to the House of Commons but of coarse I dont really understand fully how these things work.

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