Living With Mesothelioma-My Diary- Workers Memorial Day. News for kent Acadamy School, The sad passing of a Mesowarrior

The Asbestos Support Groups Forum have launched a Charter for Justice. We believe the changes we are calling for will make a real difference and we hope you can support them. Please print and sign the document. Yesterday was a very successful day Globally for Hazard Rory says today “Our day of action yesterday was a massive global success. At one point we were ‘trending’ on twitter.” Check it out. We Mesowarriors kept it going all day and I was shattered by the time I went to bed. It does show you just what can be achieved when people group together and as ADAO are always quoting — Together we can bring change. Mind you ADAO said yesterday that —– Beyond sad, especially on International Workers Memorial Day. Senators Whitehouse, Merkley, and Booker crossed to support Sens. Vitter & Udall’s S. 697. This new language still does not name asbestos and won’t ban this killer chemical. Markup is in eight hours. Still worse than current law. The fight continues. If you live in NJ, NM, LA, OR, or RI please call this morning and voice your outrage. The chemical industry must be dancing and toasting. It’s a win for them. Feeling sick. The battle for US to ban Asbestos goes on and on which is unbelievable. This Video was made by ADAO for the president to watch. How can he not listen ? how can he turn away????

Yesterday I was so shocked to hear that Mary had passed away. She has just had he second shot of my wonder drug. Mary found me on Face Book and I added her into all the groups Jan 2014 It was funny as she put how she came from South Wales so i spoke about how the treatment seemed to be slower in Wales and harder to find.I gave her a list of all the trials in the UK  “oh no she meant MSW Australia” We often had funny conversations as her health deteriorated. She got onto my Drug but I was worried as they didnt seem to test her for PD1 but she had her first go 4 weeks ago. My last message she told me she had bad water retention and wasn’t passing urine which made me wonder about her kidneys. Chemo does damage them and so they have to be looked after through treatment. Then Lou told us she had passed on Sunday. I was shocked and just burst out into tears as I told Ray. So many deaths so many friends pass on. We must still keep fighting for the cure and so much money is being invested in drugs. This year has been very active on this that I feel we are really near to that. If not a cure just to be able to halt it or slow it down is something. But we work so hard on Awareness. image Yesterday I was so pleased that it has been announced that another Academy School has been issued with Funds of 3million to rebuild its school. I dont think they realise what this means to the Community that this is a way they are eradicating Asbestos in Schools. BUT THEY ARE. and Im a happy bunny to hear this program is going on all over the country. An academy is a school directly funded by the Department for Education and independent of direct control by local government in England. However local government Councils are responsible for the funding formulae used to allocate funds among sections of education within an authority. An Academy may receive additional support from personal or corporate sponsors, either financially or in kind, but must meet the same National Curriculum core subject requirements as other state schools and be subject to inspection by Ofsted.Academies are self-governing and most are constituted as registered charities or operated by other educational charities.Government policy is to encourage all schools to become academies. Those regarded as the stronger can choose how they are governed (see below); those that are perceived to be underperforming or have failed an OFSTED Inspection come under considerable government pressure to become sponsored academies taken over by stronger schools or by one of the many flourishing academy groups. They lease their premises from government and set their own terms and conditions for teachers (Headteachers generally attracting considerably higher salaries than for other schools). This is allowing academies to attract teachers away from other schools whose needs may be greater. You will find the Department for Education’s rationale for academies here, along with more details of operation. Government has also blocked Local Authorities from setting up new schools, and these now have to be academies, Free Schools, or Voluntary Aided Schools In the case of new academies and Free Schools, government provides the building costs and the sponsors run the school. A major expansion of provision in primary schools is needed in parts of both Kent and Medway, so the academy and Free School sectors will both naturally expand. Rays Blog   rays welcome

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


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.


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.


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.

Living With Mesothelioma -My Diary- C &CC AGM at Wrotham and Schools have found an answer to Asbestos in Schools

Had a great weekend and to be able to catch up with camping friends within the C&CC. two have been having Chemo and on is starting Radiotherapy on Monday. We must be the age where Cancer is creeping into our lives and spoilng our life of Camping.

We were in the village of Wrotham


We managed to walk to the village on Saturday and the sun shone.

In the evening we had a very sociable evening nattering away and eating listening to 60’s meeting it was so pleasesent.

Sunday morning was the AGM which was carried out in 30mins with no problems.


We got there early as people were arriving

This couple are soon traveling to US by Motorhome down to Tennessee and the deep south of USA



A very serious moment

agm2 - Copy

getting ready for the AGM

agm1 - Copy

Last minute chat before we start.

I was talking to a retired teacher and she explained to about Academy Schools. The school we were in was an Academy and I said it was so run down but she explained. The Academies spend the money that has been given to them on building a new school on the site. They then pull down the old buildings and flatten the site making a playground or parking areas. Now that pleases me because that means the Asbestos problem is bring resolved by doing this.  I will ask a lot more questions and report here but the Government should be thanked and they should make sure this is the policy of all old schools and this very important plan is carried on by the new government

See I cant even go away without doing my work on Awareness of Asbestos and Mesothelioma

Living With Mesothelioma-My Diary- The British Lung Foundation published a review about how your lungs work. And my MK3475 Drug is really hitting headlines in US

Wow! so much sun again today and what i love is the fact all the Solar lights are shining away all night as they are really charged up during the day.

I know we live at the Coast but we have the Salt Marshes right in front of us and we have a lovely swan sitting on her nest.

DSCF9683 DSCF9684 DSCF9686

Im looking forward to the signets cracking open their shells and showing themselves. I will keep recording their progress as long as they stay on the Dyke.

The Park was lovely as well as the sun shone on the fields. Lou had his run around for his ball. I threw it and we lost it in the long grass but he sniffed it out and was so proud when he found it for me.

The British Lung Foundation published a completed a review of our information about how your lungs work.

Diagram of the lungsWe’re excited to let you know we’ve just completed a review of our information about how your lungs work. Follow the link and visit our website to learn all about your lungs, why we breathe, how we breathe and more!

You have two lungs, one on either side of your heart. They fill the inside of your chest. In an adult, each lung weighs about 1lb (0.45kg). However, the right lung is a little larger than the left because there is more room for it. Your left lung has to share space with your heart.

Two thin layers of tissue, called the pleura, cover each lung. These layers – or membranes – slide over each other as you breathe so your lungs can expand and contract. The inside of your lungs look like a giant sponge. It is a mass of fine tubes, the smallest of which end in tiny air sacs called the alveoli. There are around 300 million alveoli and if they were spread out they would cover an area roughly the size of a tennis court.

Alveoli have very thin walls. They are criss-crossed with the finest of blood vessels called capillaries.

Your lungs are protected by your rib cage. Between your ribs are muscles that are essential for breathing. Below your lungs is a dome-shaped muscle called the diaphragm. The diaphragm is an important muscle for breathing.

Why do you breathe?

Every part of your body needs oxygen to survive. It is carried around the body by red blood cells in your bloodstream. Oxygen cannot get into your blood directly through the skin, so a complicated system in your lungs absorbs it from the air and transfers it into your bloodstream.

What makes you breathe?

Before birth a baby relies on its mother’s blood for oxygen and its lungs are filled with fluid. From the moment of birth, a child must draw air into its lungs and get its own oxygen.

Your brain is constantly receiving signals from your body about the amount of oxygen needed. This depends on how active you are. For example, when you are asleep you need far less oxygen than if you are running to catch a bus. So you will breathe more slowly.

Once your brain knows how much oxygen is needed, it sends messages along nerves to your breathing muscles, so that the right amount of air is breathed into your lungs.

When the nerves to your breathing muscles tell you to breathe in, your diaphragm is pulled flat. At the same time, the muscles between your ribs pull your rib cage upwards and outwards. This means your lungs have the largest possible space to expand and pull in air.

How do you breathe?

Each time you breathe, air is drawn into your nose or mouth, down through your throat and into your windpipe, also called your trachea. This windpipe is a tube about four or five inches long in adults and splits into two smaller air tubes called the bronchi, one of which goes to the left lung and the other to the right lung.

The air passes down the bronchi which divide another 15 to 25 times into thousands of smaller airways, called bronchioles, until the air reaches the alveoli (diagram below).

Breathing out is usually just a matter of relaxing your diaphragm and the muscles between the ribs. This pushes the air out and your lungs return to their resting size.

How does oxygen get into the bloodstream?

Diagram of a bronchiole in your lungsInside the alveoli, oxygen moves across paper-thin walls to tiny blood cells called capillaries and into your blood. It is then picked up by a chemical called haemoglobin in the red blood cells that carry it round your body. At the same time, waste products from your body, in the form of carbon dioxide, come out of the capillaries back into the alveoli, ready to be breathed out.

Blood with fresh oxygen is carried from your lungs to the left side of your heart, which pumps blood around your body through the arteries. Once the oxygen has been used up, the blood returns through the veins, to the right side of your heart. From there it is pumped to your lungs to remove carbon dioxide and breathe in more oxygen.

What else do the lungs do?

10,000 litres of air move in and out of your lungs every day. Each breath of air carries germs and other foreign bodies such as pollutants as well as oxygen. As a result the lungs provide a complex defence system that prevents unwanted materials getting into the body.

Tiny hairs called cilia line the bronchi and help waft unwanted materials up to the mouth. Mucus produced in the walls of the airways helps to keep them clean and well lubricated. Cells in the lungs contain enzymes that produce chemical changes in the blood.

The delicate structure of the lungs is beautifully adapted to carry out the complex business of breathing and, at the same time, helps protect the body from outside attack.

However, the lungs can be damaged by cigarette smoke, air pollution (for example from vehicles) and occupational dusts and fumes. If the lungs are damaged, it can lead to breathlessness.

Your lungs are very delicate. Remember to take good care of them.

My drug has really hit the headlines in the US and I have completed a written interview which I will share when its published.

That is a great report and over 60% shrinkage for me but it doesnt work for everyone so they look at my DNA every two weeks and are waiting for my next scan xx as they say “This study has provided an early glimpse of the potential benefits of using pembrolizumab in patients with malignant pleural mesothelioma,” said Alley. “More research and trials will be occurring, which we hope will provide further grounds for optimism.” so there is a long way to go yet but it is a wonderful start

News Release
April 19, 2015

Immunotherapy Drug Pembrolizumab Shows Early Promise for Mesothelioma Patients, Penn Medicine Researchers Find

PD-1 inhibitor is safe, shrank tumors or stabilized disease in most patients

PHILADELPHIA –The PD-1 inhibitor pembrolizumab, a cancer immunotherapy drug, shrank or halted growth of tumors in 76 percent of patients with pleural mesothelioma, a rare and deadly form of cancer that arises in the outer lining of the lungs and internal chest wall, according to a new study from researchers in the Perelman School of Medicine at the University of Pennsylvania. Patients diagnosed with the disease, which is tied to exposure to asbestos, have a median survival rate of about one year.

The findings will be presented on Sunday at the 2015 American Association for Cancer Research (AACR) Annual Meeting, being held in Philadelphia April 18-22.

An international team of scientists from the United States, Europe, and the United Kingdom led by Evan W. Alley, MD, PhD, co-director of the Penn Mesothelioma and Pleural Program, found that of 25 patients administered the medication, seven (28 percent) experienced tumor shrinkage and the drug appeared to halt tumor growth in 12 patients (48 percent) . Four patients (16 percent) had disease that progressed, and two patients had not been assessed at the time of analysis. No patients discontinued treatment because of serious drug-related adverse events.

“The 76 percent disease control rate in this set of patients previously treated for malignant pleural mesothelioma is very promising and represents a signal of efficacy in the treatment of this disease,” said Alley. “Our team was also gratified that none of our patients had unexpected side effects, there were no patient deaths related to the treatment, and we managed all adverse events without discontinuing treatment.”

All of the patients in the study had disease that had progressed despite receiving standard or first-line therapy, or were unable to receive such therapy. There are no FDA-approved treatments for malignant pleural mesothelioma that has progressed after standard therapy; response rates to second-line chemotherapy are usually less than 10 percent.

Pembrolizumab was approved by the FDA in September 2014 to treat metastatic melanoma. The medication targets programmed cell death protein 1, also known as PD-1. The latter helps regulate the immune system by preventing the activation of T-cells, which belong to a group of white blood cells called lymphocytes that protect the body from infection. This serves to prevent autoimmune diseases, in which the body produces antibodies that attack its own tissue. But protection from autoimmune disease can mean that there are inadequate T-cells to fight cancer and other diseases. Pembrolizumab is a member of a new class of drugs called the PD-1 inhibitors, which block PD-1, thereby activating the immune system to attack tumors.

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

This study was funded by Merck, which makes the pembrolizumab.

Dr. Alley will present the findings on Sunday, April 19 at the Promising Trials in Immunotherapy session (12:45 p.m.- 2:55 p.m.) at 12:45 pm. ET in Terrace Ballroom I (400 Level), Pennsylvania Convention Center. Session: CT103: Clinical safety and efficacy of pembrolizumab (MK-3475) in patients with malignant pleural mesothelioma: Preliminary results from KEYNOTE-028.

Rays Blog

Living With Mesothelioma- My Diary- A day from 7.30am to 5pm so frustrating at the Royal Marsden for my drug day

Well it was drug day again today and the road was packed all the way.

But we got to the Marsden for 7.30 early so a welcome Hot Chocolate was bought.

I booked into the treatment room and sat in the waiting room. A long wait to 9.30am when my bloods were taken and PIC line cleaned.

Back to the waiting room where at 11.30 I saw a new Doctor. He was very nice and took time to explain to me how Australia was using The Melanoma drug for Meso and he said if you pay private there are several Immunotherepy drugs as not everything gets to funded by the NHS.I suppose that has to be correct. Drugs are so so expensive but if you have a good pay out it would be a good idea to find out just what is available private. I just have never thought about it.

Merck said Keytruda (pembrolizumab) would cost $12,500 per patient per month, or $150,000 per year.

Im just so grateful for the NHS in the UK and my trial drug

The Doctor had a long chat about how pleased they are at the Marsden with me. They are getting so excited about my Scan in may.

We shook hands and off to the Cafe for another coffee and a lovely piece of Coffee Walnut Cake.

We had to return for Ray to do an interview survey for carers and what the think of  Phase 1 trails. (He blooged )

When he and Lorraine came back they were laughing away together (Ray does that ) Bless him.

I sat there and sat there I went into the treatment room and came out as it got to full. At 3.45pm my drug came up. Why so long. i was there at 7.30 and get the drug at 3.45pm there is something wrong in the Pharmacy I will have to go in and sort them out ha ha !!! well i will have to keep complaining. they need more staff or a reorganising.

5pm we were free to travel home -Gee Wiz !!!

I did wish my dear nurse Anabelle a Happy Wedding Day bless her I hope she has a great day xx

Now here is a Modern idea

A PIONEERING Barrow pharmacist has become the first in England to be allowed to access patients’ GP records and issue medicine previously only available from a doctor

Gareth Jones, manager at Murrays Pharmacy in Middlefield, Barrow, has completed extra training to diagnose acute conditions safely and prescribe the correct medication.

Despite not being an NHS employee, he is able to access medical records with the patient’s consent due to innovative IT advancements.

The Minor Ailments Scheme aims to ease the pressure on local GP surgeries and Furness General Hospital’s accident and emergency department.

Mr Jones said: “The scheme has been a huge success here in Ormsgill and has proved very popular with patients.

“I can now supply a wider range of medication than the standard minor ailments service, including those only available with a prescription once I have carried out a clinical assessment.

“I have been able to complete all the requirements and training of the non-medical prescribing course and can access a patient’s record at their GP practice with their consent. I record the advice given and the products prescribed and this is sent direct to the GP practice so the patient’s record is updated.”

It is hoped that if the latest phase of the Minor Ailments Scheme is successful, it will be rolled out to more pharmacies in Cumbria.

Hazel Smith, NHS Cumbria Clinical Commissioning Group’s primary care development lead, said: “Enabling the pharmacist to link together with GP practices is a great step forward, improves the information available about the patient for everyone involved in their care and allows the pharmacist to prescribe medication safely and legally.

“Working together and sharing information has huge benefits for the patient and GP practices and is the way forward in the future.”

The scheme has also been praised as it means the patient only needs to make one visit to the pharmacy rather than a trip to their GP and then the pharmacy.

Living With Mesothelioma _My Diary_ Today I went to my TSSG NHS Meeting as Patient Rep

A really lovely day today so the ride to Maidstone Hospital, to my TSSG Lung meet to do my job as a Patient Rep, and the walk from the car park was just lovely in the warm sun shine.

We arrived to early so had to wait as one my one Doctors and Nurses arrived. It was lovely to see every one as we only meet twice a year.

The Talks began.

Minutes of the last meeting out the way and reports of the actions given.

We had a good discussion on Strategic Clinical Network

The Audit of new diagnosis is getting better and the figures are becoming correct in each hospital so the information is more accurate now.

The information and submitted monthly and Data is collected and showing in the national Audit.

Raising awareness & earlier diagnosis of cancer is paramount to the treatment of Lung cancer. What i was so pleased about is that at last they are counting Mesothelioma in its own right drawing it out of the Lung Cancer figures it has always been hidden in.

A doctor did a talk on Mesothelioma but they took the mickey out of me as I kept correcting the info he was giving. Someone said “you should have let Mavis do this she knows more ” I wasn’t being rude but the Doctor didn’t know Asbestos wasn’t banned in the US. Its a continue Awareness needed isn’t it.

It would really seem they are having a hard time finding a treatment that will work and have come to the conclusion that radiation after a VATS is not needed. They have trailed and results back this up.

Also they are finding that the new Radiotherapy machines are the answer for Mesothelioma and give better results.

We patients are always chasing them for drugs when we are desperate but it would seem Radiation is the answer.

I agreed with a lot of his talk and we had a great discussion ending with me saying that I don’t want them to keep talking about the peak leveling off as there is a new wave of DIY and Schools and we need trials and treatment for a very long time.That there are many types of Meso due to the different Asbestos the different intake and Ingested that patients are all different and some want to fight and some don’t so to talk to patient to see what they want. This has been noted and will be used.

A talk and discussion on C/T Bi-ops for Lung Cancer was amazing and it was good to hear the problems they have with collecting the data.

I was told to go to the Clinical Research Network to find the National Database on trials -here is the link see if you can work it.

Clinical research networks have been established in each of the four UK nations funded by the UK Health Departments. Together these national networks form the UK Clinical Research Network (UKCRN), strategic oversight for which is provided by the UKCRC.


Clinical research networks have been established in each of the four UK nations funded by the UK Health Departments. Together these national networks form the UK Clinical Research Network (UKCRN), strategic oversight for which is provided by the UKCRC.

The structure of the networks varies between each country, but all share the common goal of providing the infrastructure to support high quality clinical research studies for the benefit of patients. There is a commitment to ensure that the clinical research networks across the UK work together in an integrated manner to share experiences, develop joint initiatives and promote partnership and UK-wide working wherever possible.

The structure of the networks varies between each country, but all share the common goal of providing the infrastructure to support high quality clinical research studies for the benefit of patients. There is a commitment to ensure that the clinical research networks across the UK work together in an integrated manner to share experiences, develop joint initiatives and promote partnership and UK-wide working wherever possible.

We had another great discussion about Cancer Nurse Specialists  who have to do so much extra work instead of nursing that they are losing touch with Patients. I always had a CNS sit in my appointments and she gave me so much info but that was in the days when she had 400 patients now its 600 so she cant get around to see all those. Its very hard. This will be looked at.

The meeting came to a close and we all parted.

The drive home was in Rush Hour so very busy but I did go shopping as tomorrow is Drug Day at the Marsden.

Rays Blog

Living With Mesothelioma-My Diary- Weekend at Peterborough Motor Home Show and ADAO 11th Asbestos Conference

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Our destination last Thursday was Peterborough where we bought our Motorhome 5 years ago in exchange for our Auto Trail. We bought Our Auto Sleeper Clubman. She has been a great Motorhome with her Monocoqe Body I love her.

We arrived in good time and was soon inside the grounds and guided into our pitch by our dear friend Jock. Lovely to see him and so many good friends again.

It was lovely and warm on Thursday but that went down hill a bit with a cold wind blowing.

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We walked Louis around the show ground everyday with us and I have been so proud of him. You cant believe how many dogs Motorhomers have. Some have as many as six but the combination is endless. Louis has walked around so good. I dropped the lead loose for him so he didn’t feel how nervous I was as he meet packs of dogs or a dog as big a s a small pony. Little puppies jumping all over the place.  It was more a dog show than a Motorhome show.

We did shopping as Ray loves fudge and always buys it, Then he bought Emu Oil as the lady let him rub some on his bad back and he got relief from the pain.

I bought a long brush that looked like a big bottle brush but was for the radiator, I will use it under the wardrobe, washing machine and fridge to get the fluff out.

We met several friends from the past. You know the face but forget the names, very embarrassing many friends that you know their name and its so good to meet again.

Campers love meeting up at the shows.

I really had a great time but then last night I had one of the side effects of my drug. Constipation has been the biggest one for a very long time so why it decided to do the opposite i do not know. The Motorhome isnt the place to be ill in. But I stayed in the warm last night and after a good night sleep I felt back to normal this morning.

Because of the very cloudy skies and the bitter cold wind we came home today instead of tomorrow but I have enjoyed being away that I have now come home and planned more weekends.

I missed the ADAO Conference but have been catching up on all the news. I was going to watch Live Stream until Ray reminded me that having the computer on for all day meant a flat battery.

Professor Dean Fennel Gave a brilliant Speech as usual and I know he mentioned imunotheraphy that’s for sure as he is so proud of my case.

Here is a man I admire. Asbestos Hunter. He produces a lot of Asbestos Pictures I have shown on my Face Book and sometimes in my blog.

Really odd pictures of where you would never think Asbestos was used.

His Face Book completely fascinates me as he researches and finds some powerful pictures.

The Ahmed family wants the same treatment for Pakistanis that other countries have fought for and won. They want the company that exposed people to deadly asbestos to be responsible for their medical care. They want the company to take action and to dispose of asbestos debris safely to prevent future asbestos exposure to workers, children and nearby residents of Karachi. And above all, they want Pakistan to ban asbestos.

Since 2007, Syed Haroon Ahmed has been investigating the death of his brother, Syed Fareed Ahmed, from cancer of the tongue at age 55. Through his research, he’s uncovered countless examples of dangerous exposure to asbestos at the Dadex factory where his brother worked in Karachi, Pakistan.

Mezab and his Dad Haroon are building a Meso Hospital in Pakistan to help the 2 million people affected by this terrible disease! What  an inspiration to all of us

Rays Blog

Living With Mesothelioma-My Diary- Summer is here and the Lambs are playing in the fields

This is getting better and better as the sun shines again and the weather is warming up. Have we said goodbye to the winter at last.

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The wonderful countryside around us looks so lovely in the sun.

Blossoms are out and the lambs have been born to the ewes in their lambing field.

Ray had to take the motor home in for the MOT and have the cam belt changed as we have had it 5 years now. So he went off on his own and I told hie to get a taxi back. Im afraid that didn’t work out as they were to busy so he walked all the way back. Thank goodness I didn’t go as I wouldn’t have been able to have done that.

So I stayed home and got lunch ready after cleaning through.

I was so pleased when Ray did get home and discovered a letter from the Marsden stuck in the letterbox.

It was my Scan appointment for the 19th May. Isnt it funny how things have changed and Im excited not dreading that date. I cant wait to have a scan again so we can see whats going on and if the miracle is still happening and there is more shrinkage.

Im excited as if there is more shrinkage the Doctors and nurses will be so happy its a great celebration for the Marsden and I love it as I get the result instantly as they cant wait either.

As the sun goes down it is getting chillier so I have to close the windows but its been great to air the home out today.

We lost power this afternoon and didn’t know why. It was explained on face book later
An incident at a substation in Whitstable has reportedly left some of the town without power.
There were reports that it was due to a fire at the station at the junction of Belmont Road near the railway bridge. Kent Fire and Rescue have confirmed crews were called out but that they were not needed.UK Power is now on the scene handling the situation.A spokesman said: “UK Power Networks engineers are working as quickly and as safely as possible to restore electricity supplies to 270 properties in Whitstable following a fault on a piece of equipment at a substation. Originally 517 properties lost power at around 4pm today but 247 had their supplies restored at 4.39pm.

I do like to know and then it meant going around changing all the digital clocks as they were flasing on the Microwave and cooker and DVD.
Rays Blog I bet not many will remember this. Its how the victorians used to buy toothpaste. I was diging in an old dump a few years ago when I unearthed it. Ive not seen any on ebay ,some Odol pots but not like this one. All quiet and then louis goes berserk. Gosh its the window cleaner. No it can’t be he was only hear 2 weeks ago not due for 2 more.

Living With Mesothelioma -My Diary- Goodnight to a Dear Mesothelioma Warrior in Australia Trying to explain why #Asbestos causes Cancer

VW T4 Autosleeper Clubman Grande Luxe

As the sun was shining yesterday I took advantage to clean the Motor Home. Ray helped me to get the buckets of water and i washed the winter dirt off. I had bought some patio cleaner as that had been recommended by my Motor Home Forum. It worked and made the job so easy as the black marks came off. I threw the last water left in the bucket and it all blew back over me. The wind was very cold and strong.

Then washed out the inside and polished the toilet so everything looks so good for the visit to Peterborough Motor Home Show this weekend.

I love going and meeting people we haven’t seen for so long now. A good meet up and a good gossip in the Marque and around the show. Im hoping I have more strength this year as last year I was so weak and walking with my walker. I will need the stick to keep my balance as i do get tired, its a long day.

This is the show where we bought the M/H 5 years ago so I know the cam-belt needs changing which will be done on Wednesday along with the MOT.

The job done i came back in doors, cooked dinner and that was it I woke up at 3pm. Couldn’t believe when i as then back to sleep at 6. How can you get so exhausted, I hate it.

I at long last have someone i can compare how I feel with as Lou and I message each other. She and another warrior are going through the same Immunotherepy drug but in Australia. It isn’t a trial like mine so they are having to fund it themselves.

They do get help as the drug is $6000 per session. It is funded for $4000. That is  £3119 funded by £2079 so leaving them to pay £1040 per session. Every 3 weeks makes it expensive but of coarse you pay it is a chance if it works.This is why where compensation comes in handy for paying towards treatment here and in the US thank god for our NHS. If we had a private system we would have to pay and treatment nowadays is getting more high tec and therefore more expensive.

Lou describes different symptoms to me of what sounds more like a chest infection. She also uses oxygen which I dont and of coarse she has both Lung and Peritoneal Mesothelioma which I haven’t I have just Lung.

The drug has only been used on peritoneal once in the trial but the results were good. It is working on all types of mesothelioma in the states.

The other warrior has symptoms like me. Water retention. It is the fluid build up I suffer with. See as I have been the only one I had nothing to compare to so I have been blaming all my pains and fluid retention on the fact my body has had to much chemo. I can see I could be wrong. I wear support socks permanently even in bed. I take a water tablet now and again to try and move the fluid and not hurt my kidney. So to find someone else is suffering this way makes it easier for me.I dont feel so alone.

We did loose a lovely Australian man yesterday. I have been following his decline. He and his wife were great friends of Rod and were involved in the Bernie Banton Foundation. Rod and Karen have been visiting and so I was aware of the fact Neil was fading fast.

It still comes as a shock when you read — Today at 1:55am Neil lost his battle but put up a hard fight, our hearts are shattered I’ve lost my life long friend, soul mate our sons have lost the best dad ever … I have no other words

Will it ever stop. Will Asbestos be a thing of the past. I fear not this substance is out of control in our lives.

Because so much money is needed and because each Government will not get to grips with the problem each person has asbestos in their lungs. Its all down to whether you have the cancer gene that you either end up suffering with Mesothelioma or not. I still have a theory that Asbestos is the cause of most cancers.

While the term “asbestos cancer” most often refers to mesothelioma, a number of other cancers are associated with asbestos exposure. Lung cancer can be directly caused by asbestos exposure, and some studies have suggested a link between exposure and other types of cancer. Elevated risks for a number of other cancers continue to be investigated. According to the World Health Organization, approximately half of all deaths from occupational cancer are caused by asbestos.

In a large study of 1,047 asbestos industry employees, a malignant neoplasm was listed as the official cause of death for 208 workers. Respiratory cancers (primarily in the bronchus, trachea or lung) made up the majority of the cancer deaths, followed by cancers of the digestive organs and peritoneum.

Ovarian  Cancer is the latest one to come into the picture frame due to the fact Asbestos was  in talcum powder.

Researchers addressed the paradox of how asbestos fibers that kill cells could cause cancer, since a dead cell should not be able to grow and form a tumor. They found that when asbestos kills cells, it does so by inducing a process called “programmed cell necrosis” that leads to the release of a molecule called high-mobility group box 1 protein (HMGB1). HMGB1 starts a particular type of inflammatory reaction that causes the release of mutagens and factors that promote tumor growth. The researchers found that patients exposed to asbestos have elevated levels of HMGB1 in their serum. Therefore, they state that it may be possible to target HMGB1 to prevent or treat mesothelioma and identify asbestos-exposed cohorts by simple HMGB1 serological testing.

In the article, the researchers propose that by interfering with the inflammatory reaction caused by asbestos and HMGB1, it may be possible to decrease cancer incidence among cohorts exposed to asbestos and decrease the rate of tumor growth among those already affected by mesothelioma. Drs. Yang and Carbone, the lead authors, state that to test this hypothesis, they are now planning a clinical trial in a remote area in Cappadocia, Turkey, where over 50% of the population dies of malignant mesothelioma. If the results are positive, the approach will be extended to cohorts of asbestos-exposed individuals in the U.S.

This research emphasizes the role of inflammation in causing different types of cancers and provides novel clinical tools to identify exposed individuals and prevent or decrease tumor growth. The researchers question if it will be possible to prevent mesothelioma, like colon cancer, simply by taking aspirin or similar drugs that stop inflammation. They are about to test this hypothesis.

Rays Blog

Living With Mesothelioma-My Diary- Spring is here, Our Skies are polluted,ADAO 11th conference starts next week so I look back at Steve McQueens life and a visual blog of Warren Zevon

The weather has been glorious these past couple of days and if you find a place to sit out of the coastal breeze, which is very cool still, you have the sun beaming down and warming the winter bodies. The Spring bulbs are really unfolding and the trees are beginning to put on their leafy coat.

Dare we hope spring is turning into summer at last.

This is the Keukenhof in the Netherlands. The tulip fields are located just outside of this park and are absolutely gorgeous! I highly recommend it, especially in the spring. Shahnté Stgo posted on faceBook this wonderful photo. We have been to the Netherlands in spring and it is a wonderful place. With field after field of spring bulbs growing. The scant was heavenly.

We on the other hand had pollution over our county. This made it very uncomfortable for some peopl as their eyes burnt and throats. People with breathing problems were best off in doors. We did go for a walk around the Rugby field but it was very hard for me to breath and I got puffed out just going up a bit of an incline.

British Lung Foundation did warn us.—-

We hope you haven’t found your health too badly affected by the levels of air pollution in the UK over the last couple of days! If you agree with us that more needs to be done to tackle air pollution in order to reduce its harmful impact, why not take part in this e-action from Friends of the Earth Scotland?

The Scottish Government is currently consulting on its low emission strategy, and today is the last day you can have your say on Scotland’s air pollution plan. By doing so you can help make sure Scotland’s strategy is as effective as it can be! Please share your thoughts by following the link below.

According to Defra fresher, cleaner air from the Atlantic will reach the UK tomorrow – though in many areas air pollution will remain at a moderate level – so enjoy your weekend and stay safe.

Ray washed the car so i hope the sand doesnt land on it over night.

Next week ADAO 11th conference is upon us and my name appears once again. I do appreciate the mention as I strive to keep the UK Asbestos and Mesothelioma Awareness in the forefront as we just must not give up being a thorn in the side of the powers that be to keep money backing research and also helping the Asbestos Industry to be able to strip Asbestos out of our lives. We could have a new government so any way forward we have made could be squashed and we have to start over again.

This also happens within the NHS. Just as the poor hospitals etc etc have got the Conservatives plans in place it could start all over again with Labour plans. I have been in meetings and seen that happen. What amazes me is the Doctors in my Lung meeting just calmly take a deep breath and work with the new rulings and strive to make it all happen.

I salute them for their patience.

Any way I digress Linda Reinstein has just said ——-

We just published the beautiful 128 –page conference program! You can view and share everything via the April eNewsletter SPECIAL ASBESTOS AWARENESS CONFERENCE EDITION. If you are a volunteer, speaker, honoree, sponsor, or donor – please read and share this newsletter with your family and friends. Please join me in thanking Herman Hamilton for his continued ADAO leadership and especially with conference planning and for updating our mobile app! Mentioned in this eNewsletter are: Doug Larkin Richard A. Lemen Ellen Costa Jordan Zevon Barbi McQueen Marilyn Amento Hazards magazine Ann Samuelson Emily Reinstein Jasmine Uysal Lou Williams Jill Cagle Ellen Volk Patton Ellen Tunkelrott Mavis Nye Asbestos Hunter Heather Von St James Troi Atkinson Domani Tripam Sandra Neuenschwander Earl Dotter Geoff Fary Barry Robson Fernanda Giannasi Guadalupe Aguilar Madrid Arturo Juarez Aguilar Libby Card Yvonne Waterman Mark D Catlin Cameron Von St. James Syed Mezab Ahmed Environmental Working Group World Health Organization (WHO) American Public Health Association Christine Winter Brent Kynoch and others.

I was looking back and I love the video of Asbestos Disease Awareness Organization (ADAO) ADAO’s 8th Annual International Asbestos Awareness… Steve McQueens widow accepted an Award in 2012 and it bought together Barbara and The son of Warren Zevon Who wrote a wonderful song. Keep me in your heart It really moves me into tears -thanks for posting and reminding me why I fight so hard

Please watch as Barbara and Jorden appear together.

The Visual blog of Warren Zevon ans a Mesothelioma Warrior