A Diary Of A Mesowarrior Living With #Mesothelioma Today is Mesothelioma Awareness Day and where to find #Asbestos today

mary

Today is Mesothelioma Awareness Day where we try to reach as many as possible. It is a long had battle to try to get it known how dangerous Asbestos is. People still think it’s an old mans disease but we have ao many younger people from their 20’s onwards suffering.

It does feel like we churn out the same old same old but how else do we get through to the dangers.

It will go on and on I don’t see and end as it is in so many buildings etc etc Asbestos fibres are strong and resistant to heat and chemicals. This has led to their use in a wide range of building materials and products, often as fire proofing.

Asbestos cement has been widely used as a cladding material and can still be found in garages and sheds.

Why may asbestos be a problem?

When asbestos materials age or become damaged they can release fibres into the air. These can be breathed deep into the lung where they may stay for a long time, causing possible damage. When very high levels of these fibres are breathed in there is a risk of lung diseases, including cancer, Mesothelioma.
People who have worked with asbestos for many years as part of their job or have washed the dusty clothing of those who worked with asbestos are most likely to be affected. Workplace regulations now protect such people.
Is everyone exposed to asbestos?
There is a very low-level of fibres in the air everywhere because asbestos has been used widely.
Exposure to this low-level of fibres is unlikely to harm people’s health.
Levels of fibres may be higher in buildings containing asbestos materials, especially where the materials are damaged. It is very unlikely that the levels of asbestos fibres found in buildings will be harmful, but if you have damaged asbestos materials in your home you should seek advice on appropriate action to take.
High, short-term exposures to asbestos fibres can occur during DIY work. For this reason, try not to raise dust when working with materials which might contain asbestos, and avoid sanding or drilling.
Where is asbestos found?
Building materials containing asbestos were widely used from 1930 to around 1980, particularly from the 1960s onwards. So houses and flats built or refurbished at this time may contain asbestos materials.
Asbestos has also been used in some heat-resistant household products, such as oven gloves and ironing boards. The use of asbestos in these products decreased greatly around the mid-1980s, and since 1993 the use of asbestos in most products has been banned.UK
It is not always easy to tell whether a product contains asbestos as modern asbestos-free materials often look similar-remember it is usually older products that contain asbestos.
I say usually as it is found today in Imports from China ie-Crayons and cement, we must check this at border Control.
Loft or cavity wall insulation does not contain asbestos. The
types of asbestos materials that may be found in homes are
described below:—–
Insulating board
(Asbestos content 20-45 percent.)
Insulating board has been used for fire protection, heat and sound insulation. It is particularly common in 1960s and 1970s system built housing and is found in
materials such as ducts, infill panels, ceiling tiles, wall lining, bath panels
and partitions.
It is unlikely to be found in buildings
constructed after 1982.
Asbestos lagging (Asbestos content 55-100 percent.)
Asbestos lagging has been used for thermal insulation of pipes and boilers. It was widely used in public buildings and system built flats during the 1960s to early 1970s in areas such as boiler houses and heating plants.
Asbestos lagging is very rarely found in homes, especially
those constructed after the mid 1970s.
The use of asbestos for thermal insulation was banned in 1986.
Sprayed coating (Asbestos content up to 85 percent.)
Sprayed asbestos coatings were used for fire protection of structural steel and are commonly found in system-built flats built during the 1960s. The coatings were mainly applied around the core of the building such as service ducts, lift shafts, etc.
Use stopped in 1974 and the spraying of asbestos has been prohibited since 1986.
Sprayed asbestos has since been removed from many buildings, or sealed to prevent fibres being released.
Asbestos-cement products
(Asbestos content mainly 10-15 percent, but sometimes up to 40 percent.)
Asbestos-cement is the most widely used asbestos material. It is found in many types of building as profiled sheets for roofing and wall-cladding, in flat sheets and partition boards for linings to walls and ceilings, in bath panels, soffit boards, fire surrounds, flue pipes, cold water tanks and as roofing tiles and slates. It has been commonly
used as roofing and cladding for garages and sheds and also in guttering and drainpipes.
Use has declined since 1976, but asbestos cement is still being used, particularly in roofing and cladding products. Asbestos cement products are unlikely to release high levels of fibres because of the way they are made, unless they are subject to extreme abrasion. Damage from weathering may also release a small amount of fibres.
Other building materials and products Asbestos has been used in a variety of other build
ing materials, for example in decorative coatings such as textured paints and plasters. These are still widely in place but supply and application has been prohibited
since 1988. Plastic floor tiles, cushion flooring, roofing felts, tapes, ropes, felts and
blankets can also contain asbestos.
Heating appliances and domestic equipment
Asbestos was used in some warm air heating systems, electric storage heaters (up to
1976), in flameless catalytic gas heaters (up to 1988) and some early ‘coal effect’ gas fires. A fire we bought in 2000 had Asbestos strips around the bulbs. It must have been an import.
It has also been used in domestic equipment, such as oven gloves, ironing boards, seals on cooker doors and fire blankets, and in brake linings and pads. All being found today
How can I identify products or materials
containing asbestos?
Since 1976 British manufacturers have put labels on their products to show they contain asbestos, and since 1986 all products containing asbestos carry the European
label.
The supplier or manufacturer of a product may be able to tell you if it contains asbestos.
Often homes built at the same time contain similar materials-your neighbours may know if surveys for asbestos have been done.
Remember, asbestos-containing products can look very similar to those not containing
asbestos- if in doubt SEEK ADVICE.
What should I do if I suspect there is asbestos in my home?
• Asbestos materials in good condition that cannot readily be damaged are often best left where they are because removal can lead to higher levels of fibres in the air for some time. Check the condition of asbestos materials from time to time to make sure they have not become damaged or started to deteriorate.
If you are planning home improvements or maintenance and have asbestos in your home, always inform builders, maintenance workers or contractors before they start work.
• Asbestos materials that are slightly damaged can sometimes be repaired by sealing or enclosing the material-SEEK ADVICE on the most appropriate action.
• Asbestos materials that are badly damaged or deteriorating can release dust and should be
removed. Some asbestos materials (sprayed asbestos, lagging or insulating boards) must always be removed by contractors with a special license issued by the Government.
These licensed contractors have to follow regulations to ensure asbestos is safely removed. Your local environmental health officer should be able to provide advice on asbestos removal and licensed contractors. Sometimes it is dangerous to have asbestos removed for instance fire protection materials without replacing it with a suitable a
alternative.
REMEMBER:
• Avoid disturbing or damaging asbestos materials in good
condition.
• If you have damaged or deteriorating asbestos materials in your
home then SEEK ADVICE.
• Do not keep using oven gloves or other small items
containing asbestos dispose of them safely (see section on disposal of
asbestos).
• If you think that your warm air heating system, electrical storage heating system or
flameless catalytic gas heater may contain asbestos then SEEK ADVICE from your
local gas or electricity supplier. If they do contain asbestos, do not attempt to dismantle these appliances yourself, but SEEK ADVICE from you’re local council.
Take care when doing DIY
If you have asbestos materials in your home, extra care should be taken when doing DIY.
DO NOT attempt work involving sprayed asbestos, lagging or insulating boards, as this must be undertaken by a licensed asbestos removal contractor. If in doubt, SEEK ADVICE.
If you do any DIY with asbestos materials take the following precautions:
1. Keep other people away from the area of work.
2. Wear protective clothing (e.g. overalls), preferably disposable,
and avoid breathing in asbestos dust. See http://www.hse.gov.uk/pubns/guidance/em6.pdf
for suitable personal protective equipment
3. Keep asbestos materials wet to avoid producing dust.
4. Work outside if possible and avoid working overhead.
5. Do not drill, cut or disturb asbestos unless absolutely necessary.
Do not scrape or sand asbestos materials before painting and decorating. Some types of asbestos materials are very soft and can  release large numbers of fibres if rubbed or scraped.
6. Use hand tools rather than power tools.
7. Do not use a domestic vacuum cleaner to clear up the dust. Hire an industrial vacuum cleaner that conforms to BS 5415 (Type H).
8. When you have finished work, clean up and then take off the overalls carefully to avoid raising any dust which may have collected in the fabric.
In the case of disposable overalls, double bag them, clearly mark ‘ASBESTOS’
on the bag and dispose of them as asbestos waste.
Wash non disposable overalls straight away, separately from other clothing, in a washing machine.
How should I dispose of asbestos?
Wet small amounts of asbestos waste and put it in a strong plastic bag seal this tightly and
clearly mark it ‘ASBESTOS’.
Do not break up large asbestos cement sheets they do not need to be sealed in
bags but should be wrapped in polythene or similar sheeting and disposed of as asbestos
waste.
Do not put asbestos waste in the dust bin.
Asbestos can be taken to the household waste recycling centres:

 

Asbestos taken to these selected sites is limited
to one sack or equivalent per visit. There are designated asbestos containers at the specific centres, which are kept locked for health and safety reasons so please see a member of staff on site..
Please note asbestos is taken at your own risk and whilst the site staff will direct you to the correct container they may not be able to physically assist you with lifting this waste. Please consider how you will be able to manage with the waste when you arrive on site.
We advise asbestos should be securely double bagged or wrapped in plastic sheeting before being brought to the site. No asbestos can be sticking out from the packaging and the maximum sized sheet able to go into the container is 10 feet (3 metres) x 5 feet (1.5 metres).
Keep asbestos damp to help prevent the release of fibres. Do not break or cut the asbestos to fit into the bags, even if it is damp. We also advise you wear protective gloves and a face mask when handling hazardous materials such as asbestos.
Asbestos products collected at the specific centres are transported to a designated licensed landfill site for safe disposal.
For large quantities, or if you require a company to dispose of the asbestos, look in your local phone directory
or search the internet for asbestos removal companies, or contact the Asbestos Removal
Contractors Association for a company near you.
So you see just how the ordinary person doing DIY and then fly tipping can contaminate the countryside.
Please be careful Mesothelioma is a cruel disease
My Story proves it

To all the Mesowarriors suffering today our love and prayers to you and lets pray the Trials are offered to us 2016 has been great year in the advances to drugs lets 2017 bring the cure for all of us.
dragon-fly-1
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A Diary Of A Mesowarrior Living With #Mesothelioma-A very interesting week #Asbestos

gillingam

I have been in a busy whirl all week as we come to a very important week in the Nye household.

My Asbestos awareness and my political head have been working at full capacity as I campaign to have asbestos from schools as my main fight now.

My speech for Amsterdam is written and covers my story and then goes on to talk about the dangers in schools.

Asbestos & Real Estate from every angle, across borders and sectors. https://www.youtube.com/watch?v=Ftc1yBCuLsI

I look forward to meeting friends old and new and to be back in Holland where Ray has such memories of being in the Army and travelling to the Hook Of Holland everyday to collect the mail for the men to read. Those long-awaited love letters or dear johns. The food parcels sent with love from home.

ns6

Ray with his very best mate Harry who he still talks to all these years later

Also our visits to the city and the tulip fields.

I have been shopping for my outfits and evening dress we have our Euros so its just a case of packing.

I had to go to a NHS meeting which meant we went to Gillingham and as we walked through the high street a young girl asked me if she was in Ashford, she was so obviously under the influence of drugs or drink.

I told her “No dear you’re in Gillingham” she swore and staggered on, I wonder what happened to her. Just a fleeting meeting and I became involved with worrying about her ever since. So sad to see a young thing in such a state.

An article was published about my Remission that has really caused a stir and been liked and commented on by so many.

7-Year UK Mesothelioma Survivor Mavis Nye Inspires Hope

UK mesothelioma survivor Mavis Nye with her husband Ray

As part of my personal healing process, I joined a U.K. Facebook group for people who have lost loved ones to mesothelioma. Having lost my father in 1993, I still have strong emotions surrounding our loss.

What I found in this online group is nothing short of amazing. I sought comfort and support, and I met many others who experienced similar emotions. In addition to the expressions of anguish and loss, I found the promise of a new day for all families affected by mesothelioma.

I also found Mavis Nye.

She reminds me of everyone’s classic conception of a loving grandmother. Her smile is infectious and beckons one in return. The 75-year-old enjoys spending time with her husband Ray in their London home. Nye also enjoys traveling and spending time with family.

But her sweet demeanor may be a little misleading. She is, in fact, a mighty warrior.

Remaining Positive While Living with Mesothelioma

In June 2009, doctors diagnosed Nye with pleural mesothelioma. Her prognosis: Three months.

Nye didn’t crumble under devastation, cry or experience anger — as most people do when diagnosed with an incurable cancer. Instead, she took a positive approach.

“I have just got on with the fight for life. I was so determined to beat it,” Nye wrote me in an email. “I cry when I lose so many friends to the disease.”

Nye’s attitude helps her fight mesothelioma. She and her family have made it through some of the bleakest moments of her journey by remaining positive.

“Everyone said I made it so easy for them as I was always laughing,” Nye said. “Even when I had [chemotherapy] and it was so toxic, I laughed as I pushed a walking frame. I was too busy finding [clinical] trials.”

What makes Nye’s plight so remarkable is that she doesn’t only fight for her own life; she fights for the lives of all those affected by mesothelioma. She works diligently to advocate for fellow patients. Her numerous speeches, interviews and publications serve as reminders of her hard work.

Nye serves as a patient representative at the National Health Service in the U.K., and she works with Dean Fennell, a professor at Cancer Research UK. She draws on her experience of having mesothelioma and participating in clinical trials to guide professionals like Fennell find more effective treatments.

In January, Nye received the British Citizens Award for service to health care. The British Citizens Award presented the award for her selfless work advocating for fellow patients and educating the public.

She tirelessly attends conferences, gives television and radio interviews and has written several books. Nye educates others about the dangers of asbestos and paves the way to better treatment options for mesothelioma patients.

The Asbestos Disease Awareness Organization in 2013 honored her with the Alan Reinstein Award.

Mesothelioma survivor Mavis Nye accepts the ADAO’s Alan Reinstein Award in 2013.

Nye Builds Online Mesothelioma Support Network

Nye uses her website to raise awareness and provide support to those with mesothelioma.

The couple also regularly updates an extensive blog that chronicles their experiences with cancer. Ray provides a lighthearted glimpse into the daily life of a caregiver on his own site.

She also uses Facebook to warn followers of the dangers of asbestos and recent incidents of public exposure.

Positive Response to Keytruda Clinical Trial

Nye attributes her longevity to numerous chemotherapy treatments, surgery and a Keytruda clinical trial.

Immunotherapy drug Keytruda, manufactured by Merck & Co., made news in 2015 when former President Jimmy Carter credited the drug for sending his melanoma into remission.

In May 2014, Nye began receiving Keytruda injections in a U.K. clinical trial. A year and a half after initial treatment, her oncologists said Nye had no physical evidence of mesothelioma. In April 2016, her doctors reported a “complete response.”

Her experience with Keytruda is a beacon of hope for all mesothelioma patients and their families.

‘I’m Always on Tenterhooks’

Nye undergoes a scan every two months to search for any evidence of mesothelioma. She said that awaiting the results makes her feel uneasy because they have such significant implications for her.

Her anxiety is a common response.

“I’m always on tenterhooks as I have a scan every two months [because] it can hold the future in my hands. If [the cancer is] growing again, I have another battle on my hands and more traveling and more drugs to fight it with,” Nye said. “But when I get a good result, I go silent and just feel so grateful to Merck, the Royal Marsden and all the wonderful doctors.”

The Royal Marsden is a cancer center in London.

Mesothelioma communities around the world are watching Nye’s progress and her family. Her continued success with her treatment could provide a closer step toward a cure for so many others affected by the disease.

Nye’s advice to those coping with mesothelioma: “Just to never give in. I always tell mesowarriors to have chemo that knocks it back and gives you time to find trials.”

https://www.asbestos.com/blog/2016/09/15/7-year-mesothelioma-survivor-inspires-hope/?utm_source=Facebook&utm_medium=Post&utm_campaign=ThankfulTuesday

I love the why she keeps saying Nye cute

Just read this :-. Cancer changes you.
I am not the same person I was before I got diagnosed. The things I liked and thought were important before cancer aren’t now. The people I wanted to spend my time with and the things I wanted to do have drastically changed. I feel like cancer made me grow up a lot faster. I’m not as ignorant. I’m smarter, stronger, and know better. In some ways, I’m so appreciative of that. But in other ways, it’s really difficult. It seems much harder to connect with people my own age. I feel so much older than them. Like cancer shoved me forward emotionally and psychologically a few decades, but left me in my body.”it’s like I snuck out a side exit, closed the door behind me, and no one followed. At first it was almost like a breath of fresh air. Alone time. Time to process, time to think, time to pray. What’s gotten unexpectedly hard is learning to be strong on my own two feet not relying on others to hold me up. Just because the extensive expensive treatments stopped doesn’t mean all the pain and struggle did too.

Living in constant fear of “when will it come back?” without all the distraction to keep you out of your head. Knowing you’re not who you were before, but still not sure who you are now. How far out can you plan? What do you like now? What do you invest in? Where do you want to spend your time? Are you doing this right? Do you miss the old you? Do you even like the new you? Are you doing too much too soon? Moving too fast, too slow? Is this normal? The thoughts are exhausting.

ACRiley

Words that sum up how I feel I could have written that myself it’s as if she got into my head and understood me.

It has been a week of not good news for 2 Mesowarriors as they both have regrowth. I love the way they are still so positive and both seem to be getting a chance of a new trial that is coming through. Its what it is all about now. Hanging on until these new drugs are trialed. Always waiting for the funding and approval of NICE. I wish them both all the luck and my fingers are crossed.

3 Warriors are doing well on keytruda at the Marsden lots of hugs to them.

My love goes out to all the Mesowarriors who are having a rough time. The pain this disease causes I wish I could take it all away with a magic wand.

wand

 

 

A Diary Of A Mesowarrior Living With #Mesothelioma #asbestos My Day At Boyes Turner Mesothelioma and Lung Cancer Study Day

Image result for reading station

Friday saw us up at 4.00am to leave for the station at 5.00am. Dark and the roads were empty. The station was lit up and eerie as we sat there all alone. Gradually people arrived and we alighted the trial to Victoria.

We dashed onto the train to Clapham Common where we found our train to Reading. Errr no, there was no driver so we had to get off and find another train that finally left for Reading. The Taxi driver from the station was driving like eratic and dropped us, not where we asked but  around the back. We asked someone in a building where was the Arch that we needed and he haint heard of it. It was in the end of the road silly man. We finally got to the Mesothelioma and Lung Cancer Study Day at Boyes Turner.

Dr Anthony  Edey spoke about Imaging Mesothelioma and how they have to be careful as patients that had the Talc Op show as meso but its the calcified Talc never thought about that.

He spoke about the different Imaging. MRI show much more but are expensive so used for operations.

PET scans are only used in trials

So CAT Scans are the ones used the most,as I know already.

Professor Adrian Dobbs who I know through Social media and really he is a Mesowarrior as his own Mother died from Meso. This inspired him in his work at Greenwich University That is based at Chatham Maritime. He gave a great talk on the fact that every drug goes back to a plant. The Yew Tree for breast Cancer etc etc

Also he said that more people die of Meso now that killed in cars.

Dr James Myerson told is of the link of Mesothelioma to smoking. It would seem if we all stopped smoking the cases os meso would go down.

They stopped doing Operations to take the linings out as it is the worse pain ever because of all the nerves in the Lung and also because of air leaks, But now they are doing the MARS Trial in many hospitals.

They can only do the op if the patient is fit and the Meso is confined to one lobe, I never knew that.

VATS causes infection as well

There are now Electronic chest Drains which are so much better.

Jenny Mitchall an Advanced Nurse practitioner in Thoracic Surgery Spoke of the role of surgery and subsequent care in Mesothelioma and Lung Cancer.

Greg Byrne Managinging Director of RB Asbestos gave a really great talk about asbestos in buildings and a good photo session.

Caroline Barry from Mesothelioma Uk talked about all the benefits.

Then Ray and I spoke. The double act went down well again and we have everyone in tears then laughter which was just great.

Mr Faheez Mohamed gave a really impressive talk.He is the Consultant Surgeon Hampshire Hospital NHS Trust, he has worked with Doctor Sugar Baker in the US and so he is the only one UK to do the peritoneal Operation taking all the mesothelioma he can see and then using the Chemotherapy wash that we know of through Heather.

Only 1 in 5 million cases so it is very rare but with Keytruda on the scene there is more hope for treatment as well as TRAP Trial.

Then Peter Olszewski associate Boyes Turner spoke about the diffuse Payment Scheme 2014.

I had a long Chat with 2 men about setting up something at Medway for tha Mesothelioma Action Day and getting involved so we will meet up and put our heads together.

That was it as we said our goodbyes and headed for the station which was just around the corner and we really didnt need a taxi then or that morning -Live and learn.

The fun began again as sitting on the train we were told there was no driver so all move to platform 10 where were then told that there was a signal failure so all get the slow train to Waterloo/ So that’s 3 trains in 1 –that doesn’t go so we stayed where we were and thank  goodness we did as this train went as it got a green light.

We got to Paddington and through the crowds of people we found the Underground and was soon into Victoria and the Ramsgate train home. We climbed home at 9pm what a day what a journey. Then no telephone od Internet because os the storm as that had been raging all day. We went to bed and was soon asleep

mavisnye@yahoo.co.uk

 

 

 

 

 

A Diary Of A #Mesowarrior Living With #Mesothelioma #Asbestos Someone has Fly Tipped In our Lane !! I Have The Links To The Adams Trial #EndMeso

photo_20160911_102748

We are forever getting loads of rubbish dumped in our Lane. I don’t know why only that people come off the Thanet Way and down our lane to Whitstable.

The Council have only just taken a pile of broken wood drawers and rubbish and now we have this pile of builders rubble. ray said it looks like a garage or a barn floor. It really is lazy and now the council have to pay for some heavy lifting gear.

Our lovely countryside is so spoilt by these stupid people. Of course me on my Asbestos trail had the first thought of asbestos but there isn’t any that we can see.

I had a lovely email from St Barts mainly because I’m a patient Research Rep so I was sent all the link’s to the Report Of the The Adam Trial  that Peter is describing here in the Video.

Arginine, a semi-essential amino acid in humans, is critical for the growth of human cancers, particularly those marked by de novo chemoresistance and a poor clinical outcome. In addition to protein synthesis, arginine is involved in diverse aspects of tumour metabolism, including the synthesis of nitric oxide, polyamines, nucleotides, proline and glutamate.

However, several tumours are unable to produce arginine, due to variable loss of the enzyme argininosuccinate synthetase ASS1, which is necesary for L-arginine synthesisis. Including: hepatocellular carcinoma, malignant melanoma, malignant pleural mesothelioma, prostate and renal cancer.

Our lab is exploring why ASS1 is aberrantly expressed in human cancers. We have identified methylation-dependent silencing of ASS1 in several tumours, including mesothelioma, ovarian cancer and lymphoma, that are sensitive to arginine deprivation.  We are now testing whether the ASS1-deficiency of mesothelioma may be exploited using the arginine-lowering agent, pegylated arginine deiminase (ADI-PEG20). Several phase I/II clinical trials of pegylated arginine deiminase have shown encouraging evidence of clinical benefit and low toxicity in patients with ASS1-negative tumours.

Preclinical work in the area of arginine degradation is ongoing in several cancers with our national and international collaborators and industry. We are studying the regulation and modulation of ASS1 expression and the role of the proinflammatory microenvironment in arginine auxotrophic cancers, with the long-term aim of developing novel therapeutic strategies incorporating arginine deprivation and ASS1 loss into routine oncological practice.

We continue to study the links between inflammation and metabolism to discover novel therapeutic targets in oncology.

 

The ADAM trial has been published online this month in The Journal of the American Medical Association – Oncology and is downloadable via the link:-http://oncology.jamanetwork.com/article.aspx?articleid=2546657

There’s also an informative accompanying commentary in the journal:-

http://oncology.jamanetwork.com/article.aspx?articleid=2546656

Peter said –Thanks again for taking part (as one of the screened patients)! This is because I was trying to get onto the Adams Trial but I didn’t have Argine in my Tumour. I remember the day I went to Hommerton Hospital so well for my Bi-Op as it was the day after the Riots in Brixton and Hommenton.

I was very worried but the fighting had stopped and we got through safely.

Ps The articles are downloadable by signing in for a guest account

oncology.jamanetwork.com
Until recently, cisplatin and pemetrexed disodium doublet chemotherapy was the only anticancer treatment with a median overall survival benefit in malignant …

 

oncology.jamanetwork.com
Research from JAMA Oncology — Arginine Deprivation With Pegylated Arginine Deiminase in Patients With Argininosuccinate Synthetase 1–Deficient Malignant Pleural

A Diary Of A Mesowarrior Living With #Mesothelioma#asbestos – My CT Scan Result at the Royal Marsden, My Interview Has Been Published today/ Discussion with Merck Keytruda

good-news

We travelled all the way to the Marsden for my result to my scan. We were in there 5 mins then could come home ?

It was worth it and I report to facebook —Well That was great news. Still in remission and the Doctor said that I’m leading the Medical world and they are learning from me so we just cannot predict what will happen next ! –happy with that so another 2 months has been laid at my feet

So many family, friends and Mesowarriors so many likes and comments we are all celebrating that we can believe. It is so very hard to have the confidence to believe.

I went back to Oak Ward to say hi to all the staff there. So many changes though. Our favourite nurse has been promoted to CNS Congratulations Lorraine so very well deserved. Rex is now a Senior Staff Nurse another well deserved promotion. so many new nurses i had forgotten its september when a new intact was done.

Two mesowarriors were there, two lovely men. One with 41% shrinkage and Alan who has a scan next week, but has shrinkage so far and doing really well.

We had lots of laughter and hugs and kisses when I left.

So I have made an appointment for November and now relaxed to enjoy those months.

We came home and relaxed as we hadn’t slept the night before although Ray had to collect the motorhome as we had the brakes looked at.

Today has been so lovely again with the sun beaming away. We took Louis out early around the field and gave him a run around with a new ball we bought yesterday.

I sat out in the garden as it is the last we will see the sunshine for a while as the end of the Hermine hits us from US.

BRITAIN will be hit by TORRENTIAL rain and 60mph gales as the remnants of Hurricane Hermine, which devastated the US coast hits the UK.

It comes after Britain baked in an unusually hot start to September with thermometers hitting 29.3C (84.7F) on Wednesday in Gravesend, Kent.

Although summer officially ended on the last day of August, this week brought some of the highest temperatures for the past three months.

Although it will feel fresher into the weekend the mercury will still hover above-average for the time of year.

I had an interview published which I love it has been written very well.

Earlier this year, the Mesothelioma Cancer Alliance had the privilege of sharing the story of Mavis Nye, a woman from the United Kingdom who was diagnosed with mesothelioma in June 2009. Since then, Mavis has undergone a number of treatments in an effort to defeat this deadly disease.

Mavis NyeOne of those treatments included a clinical trial for a new immunotherapy drug known as Keytruda (pembrolizumab). This emerging treatment has shown promise in treating a variety of cancers, most recently having been approved by the U.S. Food and Drug Administration (FDA) to treat head and neck squamous cell carcinoma (HNSCC). The drug was also famously credited with removing any trace of brain cancer from former President Jimmy Carter last year.

The effectiveness of Mavis’ treatment using Keytruda is a promising development for those who have mesothelioma, and her story offers a bright light of hope for those who suffer from this usually deadly disease. As it has been almost six months since we first brought Mavis’ story to our blog, we wanted to reach back out to her to find out how she has been doing since the trial was completed. Mavis generously responded and shared her current status and thoughts with us.

The last time we spoke with you, you were in the middle of a clinical trial that was testing Keytruda. Now that the trial is finished, are you still feeling positive effects from the treatment? Have you seen any recurrence of the disease?

Mavis: Yes I have positive effects from the trial as I have complete response. My tumours are very small and benign, too small to have a PET scan even. I’m the first person to be able to say I’m in remission in the UK. If I stay that way for 5 years, we can talk about a cure, but if it grows again I can have another year of the drug at the Royal Marsden.

All my scans show complete response and I have been finished the trial for two months now, and so a scan on September 9 will be the one they will do all their report from as they compare with the one I had May 2014. That will finalize the two year trial.

So no recurrence of the disease has shown to date.

How has your experience with the Keytruda trial helped you connect with other mesothelioma awareness advocates?

Mavis: I have found everyone wants me to talk at their conferences or write an article about my trial and the conclusion. iMig [the international Mesothelioma interest group] was brilliant as all the doctors from around the world were present and I answered all their questions and spoke to so many.

My work with McMillian, British Lung Foundation, Mesothelioma UK, Cancer Research UK, and Patient Rep has increased, so I feel very involved now creating awareness of mesothelioma and the dangers of asbestos. I’m more involved with the removal of asbestos and the safety of the men that work in the industry.

What are some things you would want others who are considering participating in clinical trials to know about beforehand?

Mavis: I have guided the Mesowarriors UK on Facebook and Sufferers on emails and contacts from my blog into the next trial at The Royal Marsden (MK3475-158) and have answered all their worries and questions as they go through treatment. PDL1 [a cell receptor tied to cancer cell death] plays a big part, and they have to have this in their biopsy, the one that was done for diagnosis, so you may not have another one taken.

One big thing is, if you want treatment other than palliative care, you must be prepared to travel to the few hospitals that carry out trials. The trials cost too much to have them in every hospital. I always say have chemo first to knock the mesothelioma back to shrinkage so you have time to search for a trial.

There are many trials starting, and 2017 will be even bigger than 2016. So stay positive and find a trial. Mesothelioma UK publishes a good chart or go to ClinicalTrials.gov.

In the U.S., Vice President Joe Biden is leading a “Cancer Moonshot” initiative, part of which is focused on developing new immunotherapy drugs like Keytruda. In your opinion, how important is this type of effort in finding a cure for mesothelioma?

Mavis: Any publicity for new drugs out there is good. I spent so much time, money and energy finding treatment. Google has been my friend as I have searched. Cancer Moonshot was a great source, and one day that cure for all will be found, so keep up the good work Vice President – you will be our hero!

The Mesothelioma Cancer Alliance wants to thank Mavis Nye for the time she took to answer our questions and share her continued story of survival against mesothelioma. We wish her the best as she continues to fight this disease and spread awareness at home and around the world.

http://www.mesothelioma.com/blog/authors/warrior/british-mesothelioma-warrior-mavis-nye-shares-her-story-of-remission.htm

I have just recieved this info on a discussion about Keytruda so I include it here

http://seekingalpha.com/article/4005035-merck-and-cos-mrk-management-presents-wells-fargo-healthcare-conference?part=single

Merck & Co’s (MRK) Management Presents at Wells Fargo Healthcare Conference
Sep. 8, 2016 4:49 PM ET|
1 comment |
About: Merck & Co Inc. (MRK)

Merck & Co Inc. (NYSE:MRK)

Wells Fargo Healthcare Conference

September 8, 2016 01:45 PM ET

Executives

Roger Dansey – SVP, Clinical Research of Oncology

Teri Loxam – VP, IR

Analysts

David Maris – Wells Fargo

David Maris

Good afternoon, everyone. I’m David Maris, Wells Fargo’s specialty pharmaceutical analyst and a large-cap pharmaceutical analyst too, although I haven’t launched on the large-cap pharmaceuticals yet. So, I don’t know if I can officially say that. But since we’re introducing a large-cap pharmaceutical company, I’ll take that title too.

Very pleased to have the management from Merck here with us. Joining us from Merck, Roger Dansey, Senior Vice President, Clinical Research of Oncology, the lead clinical for KEYTRUDA and oncology. So, certainly the most, I guess I can say the most important product for Merck, but I’m sure they have several most. Teri Loxam, the Vice President of Investor Relation is also joining us on the dais.

This is a fireside chat. Since we have not launched coverage, I’m fairly limited in our questions. So, but I’m going to kick it off and talk a little bit about our recent meeting at Merck. But I’m going to move on over because it’s awkward if I’d ask from here. So, but thank you for joining us.

So one of the questions I have, during our meeting, Ken talked about KEYTRUDA and at some point, I don’t know if it was Ken or someone else said, I mean this could be, this is in our guidance, this isn’t, but what if this is a $10 billion or $15 billion or $20 billion drug? And people hear numbers like $10 billion and it’s hard to fathom for an individual drug, but maybe talk about the different markets and the number of patients and is that a number that, even though you’re focused on the clinical side that you say, oh, yeah, if we look at the overall market, the patients are treating, how it’s treating the patients, that’s something that’s achievable?

Teri Loxam

[Technical Difficulty]

Roger Dansey

So I think the, we’re in an unusual place. We’ve discovered a PD-1 inhibitor or the pathway that looks like it’s generally relevant, almost across all tumors to some degree. And that almost differs, there is really not a good example in oncology of an agent that may work all the way from say, ovarian cancer, treat to Hodgkin lymphoma. So the clinical opportunity based on our ability to identify the right person to get treated and conducting the right trial and choosing the right combination, if indeed combinations is the future beyond monotherapy is extremely broad and if you look at the Merck development program, our lead effort was in melanoma, we’ve followed that with a robust plan in non-small cell lung cancer.

We’ve just achieved approval in head and neck cancer, we have a robust plan for bladder cancer, for triple-negative breast cancer, Hodgkin lymphoma, [indiscernible] gastric cancer. So if you look at the, at what I’m describing, and it’s so high, the clinical utility of something like pembrolizumab can be broadly applied, and it becomes — I think we see it as foundational and as the backbone potentially of many therapies. So, the addressable population of patients obviously under the sort of construct that I’m describing is large and take lung cancer by itself is a dominant cancer. There are many, many thousands of patients who will benefit. What that turns into in terms of potential monetary value, I think I will ask Teri to comment on, but we are choosing to develop pembrolizumab appropriately in multiple different tumors where we see strong signals and that translates into hopefully many patients benefiting.

Teri Loxam

And I think it’s difficult to put a number on what this opportunity could be for a number of reasons, one being that as Roger stated, this is very early and it’s never been seen before for a drug to be so active across so many tumor types. So it is really difficult for even us internally to be able to put a revenue number on that. Analyst estimates for the market size, not just from us, but across the market, I mean, we’ve been 10 billion, 20 billion, 30 billion for an, for the IO space across many different market models that the analysts have put together. We can’t comment one way or another kind of where we think it all lands, because we really just don’t know. I think the important part is that, it will be a very big opportunity. Merck is very well positioned to be a very big part of that opportunity, especially given some of our recent news around first line lung cancer, which is a very large opportunity in and of itself. And so we’ll see where it goes, but it’s an important product for the company and we’ve often described it as kind of a pipeline within a product. And it’s definitely something that we’re pursuing pretty strongly.

David Maris

One of the things that you mentioned in your opening comments is that and you’re also looking at combination therapy if it turns out to be the case. Most people believe that combination therapy is just that’s where it will be, is there a reason to think that maybe that won’t be the case or that patients won’t take the tradeoff of what the combination therapy might entail?

Roger Dansey

That’s a great question. So, take for example melanoma. We’ve established pembrolizumab as a standard of care for ipilimumab-naive patients based on monotherapy and the results in that monotherapy population are excellent. Will the combination beat that in terms of something like overall survival, we don’t yet know, but certainly the monotherapy has a very favorable sort of safety tolerability profile, is readily administered and has a very specific safety profile related to immunotherapy, but doesn’t necessarily overlap or sort of cross contaminate other potential combinations. We’ve taken — in the monotherapy space, we’ve taken a biomarker based approach to try and increase and identify the patients that are most likely to benefit and what that has translated into is us being able to do standard of care. So, again, lung cancer is a good example, with KEYNOTE-010, which was in a second line non-small cell lung cancer population, we were able to beat to demonstrate superior overall survival against a drug like docetaxel. Although the results are not public, as you know, we’ve read out on KEYNOTE-024, which is a frontline monotherapy population, enriched now to a 50% cut point, where we have in fact consistently shown really excellent outcomes, all the way from an advanced population up to frontline and this randomized trial I think confirms that.

So for monotherapy, for patients with cancer who are often ill and maybe have advanced disease, monotherapy is an attractive option, not only from an efficacy perspective, but also from a tolerability and a safety perspective and the place of monotherapy is well established in melanoma, the place of monotherapy is pretty well established in non-small cell lung cancer. We’re going to add to that in front line, but obviously the combination represents an alternative treatment option and so in a non-biomarker based approach, looking to test a combination therapy, again, lung cancer is a good example. We’ve already begun chemotherapy pembrolizumab combination trials to see if we can in fact improve the outcome for the entire population, but the monotherapy biomarker based approach is a very strong one and I think we have really good data to support the clinical benefit.

David Maris

So in your discussions, have you — do you think you’re at the point where you have an understanding of where it might not work and where it might go?

Roger Dansey

Specifically in, by tumor type. It’s early, so for example, if on taxol [ph] myeloma, I think we were aware of data from other companies demonstrating not too much of an activity and then when we combine our drug with 09:02 we’ve got excellent responses. I think it’s hard to shut the door on anything in particular, because even if a monotherapy plan doesn’t necessarily produce significant results, it’s quite possible that a combination will. I don’t think we have a very broad based plan which doesn’t exclude specifically any disease at this point.

David Maris

Are there any trials that are ongoing where you say, well, if we have the answer to that, we will know the answer to four or five other tumor types or is it just going to be one by one?

Roger Dansey

I think as a principle, the question of combination of a PD-1 inhibitor with chemotherapy is a general principle, sort of the answered. Obviously, one can’t extrapolate from one trial to the other, but if one study read out positive in one disease, it would give one some encouragements that other trials may point in that direction, but in the end, it is disease by disease, trial by trial in terms of understanding what the outcomes are.

David Maris

What are the next catalysts, between now and a year from now that you think are the highest priority catalysts?

Roger Dansey

You mean from a clinical development perspective?

David Maris

Yeah. Data readouts.

Roger Dansey

Data readouts, well, obviously, there is a lot of focus in lung cancer. We have, we will have some more information on chemotherapy plus pembrolizumab later in the year. Our chemotherapy combination trials have got specific plans that we’ll read out over the next while. That’s of course in our safety combination, will also be potentially informative, but I think for us, from a catalyst perspective, we have a broad swap of combinations trials that are going on that are essentially signal detection with collaborators and partners and so on and in terms of making decisions about what would we do next, I mean, we base our decisions on data. So we see strong signal of efficacy and acceptable safety.

That would be a catalyst for us to proceed internally with a further development plan. So, I think it’s the, and this term, I think it’s been coined before, we’re likely to see all the data coming in the next while, because there is so much activity going on and my expectation is that we will be informed significantly by those readouts as to what the next step will be. And then obviously, if we have our internal pipeline, which would be a catalyst for proceeding to something that would have a registration gland, if one of the internal pipeline molecules in combination say with KEYTRUDA read out something positive.

Teri Loxam

And if you think, if you want to think through kind of a investor catalyst, right, from an external perspective, obviously ESMO is coming up in October and it’s a very big important meeting for Merck, for KEYTRUDA. We obviously have the first time that you will see the first line lung data from KEYNOTE-024 will be presented at ESMO and I think that’s how I wanted the biggest catalysts for the company at this time. In addition, we’ve got, I want to say, data across 12 different tumor types, we’ve got late breaker for front line bladder for instance, that will be really the first time that people see KEYTRUDA and bladder, we’ve got head and neck data, we’ve got other lung data.

So I think ESMO in and of itself is a really important meeting for Merck and a catalyst as well in addition to a whole host of other trials that read out between now and 12 months from now, both monotherapy and combo therapy. I think there is going to be a lot of catalysts out there that you will be able to understand both KEYTRUDA and the opportunities of monotherapy and combination therapy over the next 12 months, there is a lot of data.

David Maris

So I’ve seen a lot of drug companies over the years and usually, the scientist with the winning products gets pretty much an unlimited budget. Is there any — are there any studies that if you had an unlimited budget that you would want to do that you’re not doing?

Roger Dansey

I think we have a pretty fully fledged [indiscernible] program at this point and the company’s commitment to immunooncology is very significant and I think if you did some cost comparison potentially, we probably have the biggest and the broadest program currently in existence.

Teri Loxam

And I think as we think through at the corporate level and we look at the R&D budget, KEYTRUDA is a very important product and it’s the IO space, it’s moving very, very quickly. So it’s something that as a company, we have prioritized resources to KEYTRUDA so that we can be ahead of the curve and so that we can fully build out the program across. We’ve got over 300 clinical trials ongoing for KEYTRUDA across 30 different tumor types. And because it’s moving so quickly, it is important to fund that. We are doing everything we can within the company then to be prioritizing across the rest of our portfolio. So, making those tradeoffs more so than we ever have before to make sure that we can appropriately fund KEYTRUDA, keep the rest of our programs moving forward, but really taking a critical look at, can something be pushed six months and not be detrimental and will that allow a difference, another arm put in a KEYTRUDA trial for instance. We’re having those types of conversations within the company but it’s important for us to make sure KEYTRUDA is successful over the long term.

David Maris

Let’s talk about competitors for a second, what data in the last six months have you seen from a competitor where you said wow that’s really interesting. And what’s on your radar for competitor data that you really want to see?

Roger Dansey

Well, since we have ESMO, we’re very interested in seeing Bristol-Myers data CheckMate-026, they’ve done analogy between 24 and 26, now it’s a frontline monotherapy biomarker-based trial, obviously there are different cut points have been chosen but I think we’re very interested in trying to understand, you know, interpret the data. We’re also interested in seeing data from Roche, there is a lung trial I believe that will be presented, OAK that will be very informative. So, going forward those would be the two sort of most near-term data points that I’m aware of. Going backward, at ASCO, there were obviously interesting data presented again around I/O combinations in lung, all small data sets and so obviously the caveat around interpretation of this data is both from the size of the dataset. And in 2017 obviously a lot of these trials are driven by event numbers or timing, it’s not clear but I do believe there will be a readout potentially from AstraZeneca on a PD-L1 combination with CTLA-4 in lung cancer, so that would be an interesting thing to look at. So, it is always, you know it’s complicated to do with cross-trial comparisons, studies that sit up in a randomized content to earnings fashion to ensure that there isn’t variability or you can try and reduce the amount of variability, so cross-trial comparisons do have their limitations but obviously it’s important to look at other data.

David Maris

Let me also turn it over to any questions from the audience if there are any. There is a microphone in the back. Have we stunned you all into silence? I can goad you into something. So, feedback on pricing, I know that’s not your area and Teri maybe you can give us the perspective that you’ve heard, but I’m sure you’ve heard from at least internally from payers group but maybe externally from physicians that – has there been any pushback, is there pricing sensitivity?

Teri Loxam

I mean there is always pricing sensitivity, right, you have to make sure that you’ve got the right clinical data to be able to show the benefit risk analysis and the value of the product. And I think our clinical trials are designed in order to be able to put that value proposition forward. So from that perspective KEYTRUDA has shown a significant value proposition and because of that I think we haven’t seen too much pushback yet. Globally obviously pricing is becoming a bigger topic and healthcare spending in general obviously is difficult across the globe. So it’s something that we pay attention to. I think if we’re talking just about KEYTRUDA, the real question is going to come down around when combination start rolling out, how does that work and how does that work both within the US pricing system when potentially the two components of the combination, one might be through a part B system and one might be through a part D system, how does that play out, does one plus one equal two or is there some other way to price these combinations. As we go forward as well across different tumor types, how does that play out when you’re trying to launch a drug in a small indication versus a very large indication. I don’t think that we have those answers and I think collectively as an industry it’s going to be something that we’ll all be playing out over time but I think at the end of the day what we’ve been able to see consistently is that if you can show the data and the clinical benefit and show that value proposition then you can generally make sure that it makes financial sense. And that is really at Merck the foundation of what we do is making sure that we’re bringing forth products that can show that value.

David Maris

Do you think they were still in the position where survival wins numeric advantages in survival win or are we at the point where the dialog for well what’s the meaningful difference in survival if you have two successful drugs in the same tumor type and there is survival differences. So first, what is the meaningful difference in your opinion and are we ready for that dialog of well this is what it means, the personal preference. I’m going for the longer survival, I don’t care what it costs, but is that part of the debate or no that’s not really, we’re still in the longer survival win.

Roger Dansey

So until now, I don’t think things have changed, survival remains the goal standard. It is going to get more complicated because as the availability of drugs like pembrolizumab and others start to play out the ability in a controlled environment like a clinical trial to demonstrate a long-term outcome like survival may be more complex because of unintended or unplanned crossover to another agent that’s active. But it remains the gold standard and obviously for every — it almost goes — some diseases, for example, myeloma would be an example to show an overall survival signal, it takes a very long time, so more proximal surrogate endpoints are expectable for diseases that are moving fast, survival is more likely something you’d be able to show for Adjuvant trial survival is as an important outcome. So it is quite a nuance conversation around survival but it still remains the key outcome if we can demonstrate it, I think it does come from pretty much everything else.

David Maris

Like I said, for me it does as well, so if we talk a little bit about first line lung, KEYTRUDA data was clearly better than OPDIVOs. Does that change your strategy at all in development plans or just a confirmation of what you suspected all along?

Roger Dansey

If you look at the data we presented with KEYTRUDA in lung cancer it’s remarkably stable. So all the way from KEYNOTE-001, which is very small phase 1 trial, which was planned initially to enroll 32 patients or so, ended up a 1,000 patients with multiple approvals. We were able to demonstrate using a biomarker-based approach of identifying the patient we think most likely to benefit but both in second-line class and in first line in an uncontrolled trial in KEYNOTE-001 results looked very encouraging. Then KEYNOTE-010 comes along in a randomized comparison to standard of care using again a biomarker-based approach we show improvements in survival because now we capitulated that result in frontline with a higher cut point using the 50% cut point but again monotherapy against standard of care. So our only data internally is very consistent based on our biomarker choices. In terms of what do we do going forward we already have plans in place as I’ve mentioned in chemotherapy combinations to see if we can improve the outcome combining pembro with chemo. We continue to look at other novel combinations in lung cancer for example, the IDO inhibitor is under evaluation. We presented some data at ASCO looking at pembro and a dose of ipilimumab at 1 milligram per kilogram for four doses and that data is potentially informative. And I think we are continually scanning environment both internal and external trying to make the best possible choice for the next move whatever that may be and it’s all data driven. So, I don’t think any of our plans are sort of locked and loaded and that’s the end we’ll do no more, I think every time we see an important signal with good safety and potentially significant efficacy is something we seriously consider should that be taken forward. A good example of that approach could be say myeloma where we’ve clearly demonstrated tremendous benefit in monotherapy but we’re not stopping there so we have a combination both with T-VEC engines oncolytic virus, a combination trial that’s running in phase 3, we have a combination trial with Incyte IDO1 inhibitor in phase 3 both of those are based on what we thought early in strong signals to try and improve the outcomes further. And I think that’s a good model for how we approach and how we will approach other tumors, we’ll choose based on data what the best possible combination we think is and/or combination we think we should take forward and it’s an evolving process.

David Maris

So one of the things I always ask companies is and I think anyone who works for a company of more than maybe five people there is always an interesting answer of, oh, how much time do you have, if people really knew length, they’d really be surprised about the pipeline, about what you’re working on, I mean I don’t want you to tell us something again personal?

Roger Dansey

I think that the excited data, so it is you know we are obviously seeing information all the time, it’s remarkable, I mean, we are in almost a revolution from a therapeutic perspective and the future I don’t want to hyperbolize it too much but it feels like the sky is the limit with so much innovative sign such clever thinking and strong scientific underpinnings for potential future combinations and approaches, its remarkable, if you simplify all of that together and say what could the future look like it really looks very encouraging.

David Maris

So when you think about that runway, do you think that they, oh my gosh, when people say the future is really exciting sometimes they mean the next three years.

Roger Dansey

I think it’s now and it’s three and five and beyond. I think this is a continuous; the readouts for data are going to be they’re already beginning – they have begun and they will continue – the data flow will continue and that will inform future plans.

Teri Loxam

And David I was just going to add to what people and investors in particular have sound surprising as they’ve started to dig into market especially our oncology program is the talents that we have amassed both on the commercial and the R&D side both from within the organization but as well from the outside the organization. And we’ve brought people and the experts from across a number of pharmaceutical companies, Roger being one of them coming in that has a wealth of oncology experience over a career have come to Merck to work on the future program because how exciting this is. And I think a lot of investors once they start digging in are surprised by the talent that we’ve got working on this program and one of the reasons that we have been able to execute so well is because of that talent we’ve been able to bring in.

David Maris

Now this is an odd question but if you couldn’t work on KEYTRUDA but you could work on another novel program you’re aware of in oncology at Merck, what would it be?

Roger Dansey

We have a really – I’m a late stage developer, so my strong desire is to get drugs approved and that’s why I get most of my gratification from. But from an early perspective, we have lots of interesting targets but just interesting possibilities, it goes all the way from recent deal signed I think with Moderna around personalized RNA vaccines to Ablynx with nanobodies to pipeline molecules such as things like [indiscernible] I can’t select one. I think they’re all interesting.

David Maris

All right. Ed? Let’s wait for the, since we’re webcast I believe, so let’s wait for the microphone.

Question-and-Answer Session

Q – Unidentified Analyst

Doe the recent Bristol and your data make you more interested in just as an insurance mechanism to first line trials [indiscernible]?

Roger Dansey

I think our position right now is we’re continuously evaluating and the development plans will evolve appropriately. So, I think it will be helpful for us to see the monotherapy trial we understand the interest around [indiscernible]. It’s one way to go and it’s something that we have already looked at, we’ve looked at ipi and pembro in melanoma, we’ve presented some data with ipi and pembro in lung, so it’s obviously part of our consideration.

David Maris

Well, great I want to thank Roger and Teri for their participation and it’s always great to speak to us on the front line, it was something so exciting. The industry gets such a bad rap from so many and these are the stories that really need to be told about life-saving medications that are revolutionizing the treatment. So thank you for all the work, but thank you for your participation.

Roger Dansey

Thank you.

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mavisnye
Comments (1) |+ Follow
I cant thank Merck (or MSD here in UK) enough for saving my life. I have been on the Keytruda Trial here in the UK for Mesothelioma and have complete response. I had another CT scan yesterday and still Complete response. How do you put a price on Life. Keep up the great work as there are so many Meowarriors waiting for the drug to be Licensed.
Thankyou again
08 Sep 2016, 05:42 PM Edit/Delete

A Diary Of A Mesowarrior Living With #Mesthelioma – Off to the Royal Marsden for my CT Scan and solving the problem of #Asbestos Soup

Image result for pictures of a scanner comical

Yes it is that time that a visit to the Royal Marsden for a Cat Scan

And Now It’s been 80 days since the Last Day of Keytruda!

And Now It’s been 2650 days since the Day of Diagnosis!

How the time is going.

The ride up was good and so much better than the early days we had while on the trial.

We saw where the foot bridge had been demolished on the M20 and really do praise the company that worked for 2 weekends clearing all the damage away.

Work on the M20

http://www.bbc.co.uk/news/uk-england-kent-37266850

Lucky we had no problems and was soon in the Car Park.

I held my arm out to a young nurse and she couldn’t get blood as I had to have my Kidney checked through a blood test for creatinine to make sure the contrast would be Ok to use.The kidneys maintain the blood creatinine in a normal range. Creatinine has been found to be a fairly reliable indicator of kidney function. Elevated creatinine level signifies impaired kidney function or kidney disease.

The poor nurse hit the valve so I didn’t give blood. Another nurse tried another 2 times in 2 other veins. It’s no fun and it does hurt as veins ping off of the canula needle.

They had to call  a Doctor who manged back in the first vein and I stupidly was saying Oh thankyou

Ray was getting worried where I was bless him. We went down to the Scanner and I was soon seen. The scan finished we could go home. We go back on Wednesday for the results.

SCanxiety sets in at this time as it can go either way and you must have Faith.

http://www.betootaadvocate.com/uncategorized/pete-evans-praised-for-his-daring-new-asbestos-broth-recipe/

Pete Evans Praised For His Daring New Asbestos Broth Recipe

This Article was published at the weekend and it really did annoy me and others that read it. We knew it was not true and really all these stories should be watched and reported. Rod Smith of Bernie Banton Foundation  and another Mesowarrior who moved to Australia Linda Thomas got involved. Linda emailed to the Presenter but Rod has contact and I love what he wrote.

Mavis, it was a year old. Betoota Advocate is a satirical online publication run by two Melbourne young idiots. I sent them an email yesterday asking them to pull it. It has sat there for over a year until you posted it. They are young idiots, I feel sorry for Pete Evans.
Betoota is a ghost town in Qld, with no inhabitants. The Betoota Advocate is all about Bullshit, taking the piss out of people. The fact it was published over a year ago, and they talk about 6 crystals only found outside of Chinese industrial areas should have been a clue..
I contacted them as soon as I saw your posting, as even Australian Lawyers took it at face value. It does pay to read articles fully.
This is the email I sent them and also posted on their site:

Dear Clancy,

I hope this finds you well, and that you haven’t spent the last year or so living on, or consuming Pete Evan’s ‘Asbestos Broth’, or your children (if any) have not been doing likewise with the children’s version?

I actually get your sense of humour on most things, and enjoy reading your publication: The Betoota Advocate. I do think however, you have shown an extreme error in judgement in the article dated the 24th August 2015, entitled:

‘Pete Evans Praised For His Daring New Asbestos Broth Recipe’

To save you trying to find it, click on this link:

http://www.betootaadvocate.com/uncategorized/pete-evans-praised-for-his-daring-new-asbestos-broth-recipe/

The existence of this ill-advised piece of satirical nonsense only came to my attention when a compatriot from the ‘mother land’ [read Pommy or UK], a close friend and mesothelioma sufferer posted it on one of her Facebook sites within the last few days. Unfortunately, she, and many of her followers did not realise it was satirical, and have taken it seriously, on-forwarding it, and causing much consternation amongst sufferers, carers and loved ones of those associated with asbestos related disease.

All forms of asbestos related disease are particularly unforgiving, with the asbestos caused cancer, mesothelioma, being classed as terminal, there is no known cure. Think about that, all treatment is classed as palliative! Would you like to be diagnosed with such a disease and be told you have only months to live? The sad thing is, you may be one day – asbestos disease does not discriminate!

I respectively ask you to remove this page forthwith, it may have been written with a lack of knowledge or naivety, but I fail to see any advantage in allowing it to perpetuate – only angst and pain to sufferers of asbestos related disease and their loved ones.

With sincerity,

Rod Smith

Rays blog
We will see what the outcome is.

Our Trip to the Marsden was not exactly top of the heap today. Journey up was Ok we arrived with 1 minute to spare. But no problems. All booked in and sent to reception to wait bloods pre scan. They came and took Mavis in after only 10 mins or so.. I sat nodding some time later the nurse came in ,clip board at the ready.Read where I drop my handbag ha ha !!

https://mesoandme.wordpress.com/2016/09/05/monday-156

 

A Diary Of A Mesowarrior Living With #Mesothelioma – A busy week writing speeches and campaigning to rid #asbestos from schools

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I hope you are all having a great weekend as I’m doing. Just relaxing after the busy weekend we had the last week.

I have had to knuckle under and write 2 speeches.

1 for Boyes Turner’s specialist asbestos claims team is hosting a free study day at their offices in Reading.

The day will focus on trends and developments in mesothelioma and asbestos related lung cancer.

The study day is aimed at nurses, doctors, consultants and all other medical professionals who treat and care for, or have an interest in the treatment and care of, people with Mesothelioma and lung cancer. So once again I’m so amazed they have chosen me to talk with such knowledgable people.

– See more at: http://www.boyesturner.com/event/mesothelioma–lung-cancer-study-day#sthash.2bokIQAe.dpuf

I was well pleased to see two friends that will be speaking with me. Adrian Dobbs and Greg Byrne it will be good to meet up again.
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The other speech is for a wonderful trip to Amsterdam.
Im so honoured to be top speaker That was a huge surprise and Im really looking forward to my flight to Holland. A short flight that will test me how my lungs will cope with flying again.
I put the link on Facebook and Linkedin and so surprised at how many Uk friends will be going with me. Then there is Australian friends and apparently many Dutch people are looking forward to meeting me I’m so excited to meet up with  Yvonne Waterman Ph.D. LL.M. founder of the European Asbestos Forum (EAF) who has kindly invited Ray and I -Oh yes the double act is going to perform again hope you will have tissues as Ray is good at making everyone cry as iMIG saw.

This short video shows one of our survey team encountering unsealed AIB asbestos cladding within a school.

The damage is clearly visible and for some time period this area would have been accessible. Fortunately the site is now closed and earmarked for demolition.

Asbestos management in schools is still a major problem in the UK.

I have been involved in campaigning for Asbestos in schools and if you think it isnt found today here is the proof that survys are finding it.

These two schools are the lucky one as they are being demolished but this Picture shows a great survey that impressed me on Linkedin.

asbestos in schools

 

 

 

 

 

 

 

 

 

 It is difficult to see that each line is showing that Asbestos is there and our children have been going to old schools like this and sit amongst the danger. Every School and building should have one like this on show.
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