Living With Mesothelioma -My Diary- Playing A Part in Rare Disease Day 28th Feb 2015

1 in 17 people will be affected by a rare disease at some point in their life. (European Council)

This amounts to approximately 3.5 million people in the UK.

75% of rare diseases affect children and 30% of rare disease patients will die before their 5th birthday. (EURORDIS)

There are over 6,000 recognised rare diseases.

Collectively rare diseases are not rare.

Rare Disease UK (RDUK) is the national alliance for people with rare diseases and all who support them. We believe that everyone living with a rare disease should be able to receive high quality services, treatment and support.

RDUK is campaigning health departments across the UK to implement the UK Strategy for Rare Diseases to ensure that patients and families living with these conditions have equitable access to effective services.

Key features of the UK Strategy for Rare Diseases, which was published in November 2013, include:

  • making sure patients and their families and carers have the information they need, are listened to and consulted
  • developing better methods of identifying and preventing rare diseases
  • improving diagnosis and earlier intervention for those with a rare disease
  • developing better coordination of care for those with a rare disease, including joined up consultation and treatment schedules
  • building on research to improve personalised approaches to healthcare for those with a rare disease

To achieve the UK-wide vision for rare diseases, there are 51 recommendations which all four countries of the UK have committed themselves to.

http://www.raredisease.org.uk/

There are over 6,000 recognised rare diseases each with different symptoms and prognoses, yet our research highlights that patients and families frequently face common problems regardless of which rare condition they are living with.

Some of the common problems experienced included:

  • Difficulties in securing a correct diagnosis, with patients often reporting severe delays in diagnosis and multiple misdiagnoses.
  • Patients and families struggling to access information on their condition and experiencing a lack of support with both their medical and non-medical needs.
  • Patients reporting that their care is badly coordinated, particularly around the time of transition from paediatric to adult services.
  • Patients having difficulties in accessing all the services they require for their condition.

Alastair Kent, Chair of Rare Disease UK, summarises our findings: “Many people living with rare diseases and their families have to go through years of medical tests and procedures before an accurate diagnosis can be made. Not only is it often a battle to get an accurate diagnosis, patients and families then struggle to find out the medical impact of a condition and how to manage it, on top of having to cope with day-to-day life without adequate support.”

While most patients face major difficulties, positive instances of timely diagnosis and good quality care and support were indicated by some. This highlights the inequalities that exist in services received by patients with different rare diseases, and even between those affected by the same rare disease in different parts of the country. This raises serious concerns about equality of access and fair treatment. Good practice should be the norm rather than the exception.

Alastair explains that the results hammer home the need for a coordinated UK-wide strategy “for the diagnosis, treatment and research of rare diseases. This is a hugely important issue that needs to be tackled; patients and families should not have to face an inequitable level of care from the NHS because they have the misfortune of their condition being rare.”

Patients and families often reported that patient organisations play an essential role in providing them with information and support. They provide help and assistance to patients with getting a diagnosis, and accessing appropriate services, information and support throughout the progression of their condition. They are also important sources of guidance for patients considering participating in groundbreaking research, vital to enable the development of new therapies, diagnostic tests and preventative measures.

Mesothelioma is counted as a Rare Disease and as such I was asked to tell my story to raise awareness tomorrow

Asbestos pictures

 

 

 

Published: 03 Feb 2015
I’m just an ordinary woman who married at 18 and washed my husband’s clothes as he came home from work at the Chatham Dockyard as a Shipwright. I didn’t know the powder on Ray’s clothes was anything other than dust bought home from work. I shook his clothes and then put them in the washing machine. Forty-eight years later I find I have mesothelioma and a death sentence of 3 months.
After my husband’s apprenticeship and national service he returned to the dockyard. This is when he worked with asbestos all around as the laggers lagged everywhere in the ships when they were being refitted. My father also worked on the submarines as an electrician.
We lived a wonderful healthy life and bought up a family. I went to keep fit classes and walked miles with the dogs in our lovely countryside. Then we retired in 2000, sold our house, moved to the coast, bought a motor-home and settled into retirement.
Losing My Breath

m n r

 

 

 

 

 

 

 

Forty-eight years later and after a two month stay in Spain I couldn’t breathe and the story of mesothelioma began.
I had been to the GP as my arm had gone numb and I burnt myself on an iron but didn’t feel it. He thought I had a trapped ulnar nerve and made an appointment for me to have an X-ray and see a specialist.
In May I went to vote and I just couldn’t breathe. When I got home, to my amazement the GP phoned and told me the results of the X-ray were showing a mass and they had arranged a bed at the hospital for me to have my lung drained.
This was carried out and from the fluid they found cancer cells and believed I had mesothelioma.
Prognosis and Chemotherapy
That led to me being given 3 months to live. I didn’t accept that and after my pleurodesis at the Guy’s Hospital in London, I started chemo.
Cisplatin and Alimta which is the standard treatment in the UK. This worked for fifteen months then started growing again.
I was offered the NGR-hTNF trial at Maidstone, this clinical trial acts on the tumours blood vessels which I’m afraid didn’t work for me or I had a placebo. So two sessions of Cisplatin and Alimta, I became allergic but it did work and we had stability again for a while…then growth was found in my next scan.
The Life Line
What would I like next as there are no new trials or Chemo? I’m not used to a doctor having no answers.
I emailed Saint Bartholomews Hospital and that Friday I was in an appointment where Peter offered me the last place on the ADAM Trial, but it would mean another Bi-op and then I might not even be suitable.
He threw me a life line of GemCarbo chemotherapy and I could have that locally. Back to Canterbury and I was on chemo again until September.
Bad News…
The October scan was bad news…the chemo hadn’t worked. A scan every three months was showing the growth of three millimetres every three months.
I wasn’t happy.
So I got right behind the Saatchi Bill (The Medical Innovations Bill) and worked with Lord Saatchi and the doctors. I was also on the committee when it was launched at the House of Commons.
Then a Doctor gave me the advice to go to the Royal Marsden where they were starting a trial that might suit me, so I asked my Oncologist and she referred me.
Joining the Meso Warriors Community
I’m now on a Phase 1 trial of Immunotherepy.
It isn’t just for mesothelioma but the trial,, MK-3475, is a drug being tested as it blocks the interaction of a substance called PDL-1 with PD Inhibitor.
When I was first diagnosed with mesothelioma in 2009, I Googled the word as I’d never heard of the disease, only asbestosis. All the depressing reports and write-ups gave me a shock of as there seemed no hope.
I turned to Facebook and completed a search which gave me so many Lawyer sites; however I did come across Debbie Brewer’s Facebook which led me to a wonderful community of patients around the world called The Meso Warriors.
Debbie and I became friends and together we created more groups. I started the Q&A page so I could ask all the questions I needed and there are groups for other needs such as:
Mesothelioma Articles Groups with new trials and news so we can always be ahead and up to-date and also blogs where warriors can tell their day-to-day stories of their fight.
Meso Warriors and Carers groups to help carers understand the diseases as well as get help when needing to cope.
Individual Groups that are secret where each member can put their personal thoughts and stories and share with their own friends and family.
We even have a Tears Page for the partners that have lost a loved one so they share their lives afterwards. It’s amazing how that helps in so many ways. Post-mortems and wills and the day to day help to live again.
This has all become so successful that the world has joined in and we have members from America, Australia, and many other countries, we learn from each other, how the world copes with the disease. Also we fight for the ban of asbestos and how to manage it in the buildings.
Take Five Stay Alive Campaign is run by British Lung Foundation which I made a video for and became the centrefold in their annual report.
My Wish
Suffering from mesothelioma, I wish we could take asbestos out of our lives or the closest to zero that could be humanly achieved. There is no statistical data as to the amount of fibres breathed in over time that can be medically proven to have caused mesothelioma.
I had my exposure from washing my husband’s work clothing, and many people have suffered and are going to suffer from asbestos as a result of unintended exposure. Since the use and importation has been prohibited in Europe, the exposure people are now suffering and still continue to be exposed to asbestos in our built environment.
For the sake of our future generations, asbestos must be removed from the world we live and work in. To do that, I believe it requires professional companies operating at the highest standards to continue to remove this category 1 carcinogen safely and make our world a safer place.
I fought against it by having chemo and now my last chance is MK3475, an immunotherapy treatment which is shrinking my disease very fast. For how long no-one knows at this point.
I fight on for the future and all our Meso Warriors past, present and future.

http://www.rarediseaseday.org/stories/5062

Very proud to be included in the day

warrior logo

 

 

 

 

 

 

 

 

2015 rare disease day

Alongside ADAO http://www.asbestosdiseaseawareness.org/archives/31160

The Asbestos Disease Awareness Organization (ADAO), which combines education, advocacy, and community to provide a unified voice for asbestos victims, will be joining the National Organization for Rare Disorders (NORD) and others around the world in observing Rare Disease Day on February 28, 2015. On this day, thousands of patients and their families will share their stories and focus a spotlight on rare diseases as an important global public health concern. As the NORD supporters say, “no more Band Aids-just a cure!” Since 2005, ADAO has been listed as a mesothelioma resource on the  NORD website.

A ‘rare disease’ is one that affects fewer than 200,000 Americans. Tragically, mesothelioma, a cancer caused from asbestos, claims the lives of more than 3,000 Americans every year, symptoms of mesothelioma may not appear until up to 50 years after initial exposure to asbestos. According to government statistics, between 85 and 90 percent of orphan diseases are serious or life-threatening, yet only about 200 of them currently have any effective treatments. Presently, prevention is the only cure.

Dr. Domenica Taruscio, Director, National Center for Rare Diseases, explains the importance of rare disease day and how it affects mesothelioma: “Mesothelioma has a well-identified environmental cause – asbestos. Yet, much research is still needed, in particular concerning early diagnosis and treatment. There is so much that can be done in order to prevent mesothelioma simply applying the current knowledge, deleting asbestos exposure from our everyday lives by appropriate regulations.However, to achieve these aims, a widespread awareness is needed. Thus, the mesothelioma issue is expected to benefit from the awareness raising stirred up by the Rare Disease Day.”

Every year Rare Disease Day has a specific theme worldwide. This year, the theme is “Living with a Rare Disease.”  World Rare Disease Day was launched in Europe seven years ago and last year was observed in 60 nations. It is always observed on the last day of February. On that day, patients and patient organizations will post stories, videos, and blogs online and host events to raise awareness of these diseases, which are often called “orphans.”

ADAO represents patients and families affected by mesothelioma and other asbestos-related diseases throughout the United States and abroad. On April 17- 19, 2015, in Washington, D.C. ADAO will host the 11th Annual International Asbestos Awareness Conference, where more than 30 renowned experts and asbestos victims from ten countries will present the latest advancements in disease prevention, global advocacy, and treatment for mesothelioma and other asbestos-caused diseases.

For more information about Rare Disease Day activities in the U.S., go to www.rarediseaseday.us.

Together, change is possible.

Linda Reinstein

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Living With Mesothelioma-My Diary- We have come down to earth today. Tony Whitston Honoured at the House Of commons

Its been a funny day today. The day after the day before is always a weird day when all the excitement has calmed down.

I had so many Face Book friends enjoying the news so many private messages and so man emails of congratulations. It was great

Today has been full of me back in full swing with my support group on line.

So many people just finding out at clinics today they have mesothelioma.It just never ends.

Im so pleased I have answers at my finger tips and can calm the nerves from diagnosis to treatments and to claiming.

On bit of news I enjoyed was a Man we in the Meso world know so well as he has always presented at the Novotel Mesothelioma UkHe could take about the claiming and benefits with ease. http://www.asbestosvictimsupport.org.uk/about.aspx

Asbestos Victim Support was established to provide a community for sufferers of asbestos-related illnesses and their loved ones. A community where sufferers can find answers to all of their questions in one place and share their experiences with others in similar situations to themselves. As well as providing detailed, up-to-date medical information, legal information and welfare benefit information related to asbestos-related illnesses, Asbestos Victim Support provides a unique interactive forum. A forum where individuals affected by the effects of asbestos-related illnesses, on themselves or on a loved one, can share their experiences and provide additional, much needed support and understanding to one another. Tony writes so many Articles on Asbestos and Mesothelioma.

Commercial interest trumps justice every time

 

 

 

AN evening of inspiration and celebration took place at the House of Lords on Monday (23 Feb) where the nation’s best campaigners, old and new, were awarded for their work.

The night culminated in the prestigious Long Term Achievement Award, jointly awarded to Tony Whitston from Manchester, for supporting people diagnosed with Mesothelioma and other asbestos related diseases and Des Wilson, who was founder-director of Shelter and leader of a number of other winning campaigns, including the campaign for lead-free petrol and the Freedom of Information campaign.

As part of SMK’s 10th anniversary celebrations, the evening was hosted by Muriel Gray, who hosted the very first awards ceremony.

Tony from Asbestos Victim Support is standing at the back right hand side.

http://www.charitytoday.co.uk/new-wave-of-first-class-campaigners-light-up-2015-smk-awards-ceremony/

DAST have had a great day of Awareness today

P-ASBESTOS

Chesterfield Council is warning people about the dangers of asbestos.

The authority is concerns that people carrying out DIY projects may be putting themselves at risk.

It comes after a campaign by Helen Redfearn, whose father died from Mesothelioma, the cancer caused by the toxic substance.

A Derbyshire group which works to raise awareness about the dangers of asbestos is projecting an interactive programme onto a screen half the size of a house.

It is so people can see where they might find the hidden killer in their own homes.

The Derbyshire Asbestos Support Team says it is especially important for people doing DIY or refurbishments to know about the possible risks.

It is estimated that it is present in 90% of all public sector housing and schools Credit: ITV News Central

The DAST say that despite Asbestos being banned since 2000 it may still be found in any property built before that date.

It is estimated that it is present in 90% of all public sector housing and schools as well as people’s homes.

Last year the group supported 294 people in the East Midlands who had been diagnosed with an asbestos related disease, 65 of those people were from Derbyshire.

The interactive screen is being launched in Chesterfield this afternoon, with trade workers and members of the public invited to use it.

It will show a guide to areas of the house with information about where asbestos may be found and what to do it asbestos is suspected to be present.

The support team say last year they helped 294 people in the East Midlands who had been diagnosed with an asbestos-related diseas, including the rapidly fatal cancer, mesothelioma.

Relatively low levels of exposure to asbestos may cause cancer.

Asbestos is Britain’s biggest industrial killer – every week, on average, 20 tradesmen die from this hidden killer.

Both tradesmen and the public need to wise up to the risks. Every building built or refurbished before 2000 could contain asbestos. Even basic home improvements and simple repairs can risk disturbing the dangerous fibres that can kill in later life.

Our advice is: be aware of asbestos, use trained professionals and inform tradesmen of any asbestos materials in your home.

– Helen Donnelly, Health and Safety Executive

Our wonderful Holiday in Benidorm 6 years exactly from the 14th Feb started my story  as I found it had to walk back up to St Lucia to my sons villa.

My story appeared in Asbestos Justice what a shame my good news wasn’t in it but hey ho !!

In 2009, Mavis was given three months to live but refused to give up her fight with Mesothelioma. She now works within the NHS as a Patient and Trail Rep alongside TSSG Lung Members. By frequently attending many conferences and workshops around the country, Mavis continues to battle speeding up life-saving mesothelioma treatment.

I’m just an ordinary woman who married at 18 and washed my husband’s clothes as he came home from work at the Chatham Dockyard as a Shipwright. I didn’t know the powder on Ray’s clothes was anything other than dust bought home from work. I shook his clothes and then put them in the washing machine. Forty-eight years later I find I have mesothelioma and a death sentence of 3 months.

After my husband’s apprenticeship and national service he returned to the dockyard. This is when he worked with asbestos all around as the laggers lagged everywhere in the ships when they were being refitted. My father also worked on the submarines as an electrician.

We lived a wonderful healthy life and bought up a family. I went to keep fit classes and walked miles with the dogs in our lovely countryside. Then we retired in 2000, sold our house, moved to the coast, bought a motor-home and settled into retirement.

Losing My Breath

Forty-eight years later and after a two month stay in Spain I couldn’t breathe and the story of mesothelioma began.

I had been to the GP as my arm had gone numb and I burnt myself on an iron but didn’t feel it. He thought I had a trapped ulnar nerve and made an appointment for me to have an X-ray and see a specialist.

In May I went to vote and I just couldn’t breathe. When I got home, to my amazement the GP phoned and told me the results of the X-ray were showing a mass and they had arranged a bed at the hospital for me to have my lung drained.

This was carried out and from the fluid they found cancer cells and believed I had mesothelioma.

Prognosis and Chemotherapy

That led to me being given 3 months to live. I didn’t accept that and after my pleurodesis at the Guy’s Hospital in London, I started chemo.

Cisplatin and Alimta which is the standard treatment in the UK. This worked for fifteen months then started growing again.

I was offered the NGR-hTNF trial at Maidstone, this clinical trial acts on the tumours blood vessels which I’m afraid didn’t work for me or I had a placebo. So two sessions of Cisplatin and Alimta, I became allergic but it did work and we had stability again for a while…then growth was found in my next scan.

The Life Line

What would I like next as there are no new trials or Chemo? I’m not used to a doctor having no answers.

I emailed Saint Bartholomews Hospital and that Friday I was in an appointment where Peter offered me the last place on the ADAM Trial, but it would mean another Bi-op and then I might not even be suitable.

He threw me a life line of GemCarbo chemotherapy and I could have that locally. Back to Canterbury and I was on chemo again until September.

Bad News…

The October scan was bad news…the chemo hadn’t worked. A scan every three months was showing the growth of three millimetres every three months.

I wasn’t happy.

So I got right behind the Saatchi Bill (The Medical Innovations Bill) and worked with Lord Saatchi and the doctors. I was also on the committee when it was launched at the House of Commons.

Then a Doctor gave me the advice to go to the Royal Marsden where they were starting a trial that might suit me, so I asked my Oncologist and she referred me.

Joining the Meso Warriors Community

I’m now on a Phase 1 trial of Immunotherapy.

It isn’t just for mesothelioma but the trial, MK-3475, is a drug being tested as it blocks the interaction of a substance called PDL-1 with PD Inhibitor.

When I was first diagnosed with mesothelioma in 2009, I Googled the word as I’d never heard of the disease, only asbestosis. All the depressing reports and write-ups gave me a shock of as there seemed no hope.

I turned to Facebook and completed a search which gave me so many Lawyer sites; however I did come across Debbie Brewer’s Facebook which led me to a wonderful community of patients around the world called The Meso Warriors.

Debbie and I became friends and together we created more groups. I started the Q&A page so I could ask all the questions I needed and there are groups for other needs such as:

  • Mesothelioma Articles Groups with new trials and news so we can always be ahead and up to-date and also blogs where warriors can tell their day-to-day stories of their fight.
  • Meso Warriors and Carers groups to help carers understand the diseases as well as get help when needing to cope.
  • Individual Groups that are secret where each member can put their personal thoughts and stories and share with their own friends and family.

We even have a Tears Page for the partners that have lost a loved one so they share their lives afterwards. It’s amazing how that helps in so many ways. Post-mortems and wills and the day to day help to live again.

This has all become so successful that the world has joined in and we have members from America, Australia, and many other countries, we learn from each other, how the world copes with the disease. Also we fight for the ban of asbestos and how to manage it in the buildings.

Take Five Stay Alive Campaign is run by British Lung Foundation which I made a video for and became the centrefold in their annual report.

My Wish

Suffering from mesothelioma, I wish we could take asbestos out of our lives or the closest to zero that could be humanly achieved. There is no statistical data as to the amount of fibres breathed in over time that can be medically proven to have caused mesothelioma.

I had my exposure from washing my husband’s work clothing, and many people have suffered and are going to suffer from asbestos as a result of unintended exposure. Since the use and importation has been prohibited in Europe, the exposure people are now suffering and still continue to be exposed to asbestos in our built environment.

For the sake of our future generations, asbestos must be removed from the world we live and work in. To do that, I believe it requires professional companies operating at the highest standards to continue to remove this category 1 carcinogen safely and make our world a safer place.

I fought against it by having chemo and now my last chance is MK3475, an immunotherapy treatment which is shrinking my disease very fast. For how long no-one knows at this point.

I fight on for the future and all our Meso Warriors past, present and future.

http://www.asbestosjustice.co.uk/justice-newsletter-issue-6-february-2015-2/

Living With Mesothelioma -My Diary – The MK 3475 PDL trial at the Royal Marsden has given me such great news today

What a day —WHAT A DAY !!!
It was wonderful and light as we traveled at day break to the Marsden.
What a difference 2 weeks makes.
As usually we arrived early as the roads were good and the local traffic although heavy, kept moving.
We had to wait in the waiting room for a while as they did the change over.
My bloods were soon taken and we had a good chat about Panorama as I said it was a great program and they all came over well.
I waited back in the waiting room as others arrived. Some I had seen before and some I hadn’t and a really lovely lady and her husband that always comes when im there hasn’t turned up. I do hope she is Ok as she has been so brave with Ovarian Cancer that has spread. She is on a trial and was getting good results.
The Doctor called me in and this vision of wonder was shaking my hand. Gee I have been so lucky all through my 6 years of being involved with real dishy doctors. Its a wonder my blood pressure isn’t raised every week.
I now have an Australian Doctor, Sam Smith. He is so sweet with a lovely smile.
We had a long talk about Asbestos and Mesothelioma Bernie Bantom and Mr Fuffy Houses.
I told him about my pains appearing worse in my back and he knew I was having a scan at 11.5am that will tell why.
He said i will get the results next treatment. I was used to that wait so I shook his hand and off we went to get the scan.
Everything went well and I drank cups of water and my PICC Line was re-flushed. It had just been done when I had my bloods done.
The scan done we went to the Cafe for a coffee and a cake. Returning back to the waiting room we sat and read magazines and played on my tablet.
I couldn’t believe that at 1.15 pm as my drug was made up. Brill!!!
Then the PICC line played up. It wouldn’t draw blood and then be flushed again. The nurse put through 2 flushes so it was going in but no blood showed.
I could taste the flush so she knew the flush was going in, she felt no resistance so she went and got permission to carry on but told me next drug day if it happens she will have to use a drug through the PICC line to unblock it and get blood for my sample tests.
Anyway we were off with the drug going in.
Dr Smith walked into the room and came up to me. smiling away –no beaming away.
He sat down on the chair next to me.
So much was going through my mind when he said -We have had a scan meeting- Oh no I thought he was going to say Its all growing again. That would mean I would be off the drug and trial.
He said the opposite, as he held my hand and said they have just had a Scan result meeting. They havent measured but they will do that for my next visit in 2 weeks but he couldn’t wait to tell me. – I have had more shrinkage and in places they have shrunk right back to scaring’s.
So the pain must be coming from the roots of tumours.
This has happened in 1 month from my last scan.
We shook hands again and everyone was smiling but I burst into tears. So emotional
We came home so happy and I got through to my son and told him the good news. Everyone I have told has been thrilled
Dolcie my little friend who is at Uni training to be a Doctor has summed it up for me. “‘m so happy for you!!! This is such a massive step in science xxxxx
It is great news for the Medical world.
So Im home and so far 157 wonderful friends 129 likes so far I have a great bunch of friends that have backed me through all this and then the Mesowarriors. Im really blessed.
I know that the drug could stop working and turn on me, I know this is still only Palliative care and that there isn’t a cure yet but my goodness I feel we have all given it our best shot Thankyou The Royal Marsden.
Good Luck with the Verastem trial that is soon coming through I believe.
We have to support these trials as they do look after you so well.
You have more scans and blood tests so you know just how everything is going along.
A rail called  TRAP that is developed from our positive results in the ADAM trial (where we showed a doubling of the progression-free survival). Our hypothesis is that removing arginine will help improve current standard chemotherapy for mesothelioma in those patients whose mesotheliomas need arginine to survive.

In approximately eight hours’ time the summary will show up on a search. You will then be able to find it by selecting lung cancer from the drop down menu on the trials database search page (http://www.cancerresearchuk.org/cancer-help/trials/trials-search/).

A Study of ADI-PEG 20 with Pemetrexed and crisplatin for Lung Cancer and mesothelioma (Trap Study_

This study is looking at a drug called ADI-PEG 20 with pemetrexed and cisplatin to treat lung cancer and mesothelioma.

There are 2 parts to this study. The 1st part is for people with either

The 2nd part is only for people who have non small cell lung cancer or mesothelioma in the chest.

Doctors can use chemotherapy to treat non small cell lung cancer and mesothelioma. One combination they often use is pemetrexed and cisplatin. This works but researchers are always looking for ways to improve treatment.

Researchers have found a new way of destroying cancer cells in the laboratory, by removing an amino acid called arginine. Arginine helps with many different jobs in the body, including cell growth.

Our bodies can make arginine using a protein (an enzyme) that is often missing in mesothelioma and non small cell lung cancer cells. So if you remove arginine, these cells will not be able to replace it. And this may stop the cancer cells growing.

In this study, researchers are looking at a drug called ADI-PEG 20, which removes arginine.

In the 1st part of the study, the researchers want to find the highest safe dose of ADI-PEG 20 to give with pemetrexed and cisplatin. In the 2nd part, they will use this dose to find out how well it works for people who have non small cell lung cancer or mesothelioma in the chest. They also want to find out about the side effects of having ADI-PEG 20 with pemetrexed and cisplatin.

Recruitment

Start 14/07/2014
End 31/12/2015

Location of trial

  • Cambridge
  • London

Chief Investigator

Peter Szlosarek email <p.w.szlosarek@qmul.ac.uk>;

Supported by

Experimental Cancer Medicine Centre (ECMC)
Polaris Group

Living With Mesothelioma -My Diary- Happy Birthday Ray

m n r

 

 

 

 

 

 

 

Yes Ray has had a birthday today.

Another target for me to enjoy. Such a joy and I gave him 3 T shirts that I had bought from Sports direct.

We had it all planned to go out for a meal and as Terry had a birthday it was a double celebration.

They arrived and we set off to the restaurant.

I chose the new one that had opened up by us on the Thanet Way.

The Oyster bed.

Everyone was so friendly and we sat down to wait for the table to be ready.

We chatted away and the time passed and we were shown to our table

oyster seating

 

 

 

 

 

 

 

It was the one in the window recess. The whole place has a seaside rustic feel about it like we were in Whitstable  by the sea.

We offer a warm welcome to all the family with indoor and outdoor play areas,
Booth seating and large and small tables for all sizes of parties. All
complemented by our extensive range of cask ales, ciders, beers, wines and
spirits. Our full menu will be served daily and featuring our mouth-watering
Rotisserie Chicken which is available all day, every day. Large car parking and
free wifi is also included to make the Oyster Bed your perfect choice for any
occasion. http://www.oysterbedpubwhitstable.co.uk/

oyster garden

 

 

 

 

oyster garden 1

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

oyster drink

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

oyster drink 2

 

 

 

 

 

 

oyster chick

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

oyster bed

 

 

 

 

 

 

 

The Meal was perfect as we had so much choice but we all liked the roast beef dinner. The beef was so tender and the vegetables was cooked just right.

Then Ray had Ice cream and we had  Tiramisu.

The price was good so it was a very enjoyable time.

r1

 

 

 

 

Selfie !!

We came back home after we were so full up and the weather had really got bad.

It was pouring with rain and so windy.

Coffee and birthday cake and we really were over full.

Rays Blog     https://mesoandme.wordpress.com/2015/02/22/sunday-112/

 

Living With Mesothelioma -My Diary- Foot Prints in the Sand

I put this on face Book Last Night

To my Meswarrior friends this is for you as I feel so deflated tonight. We fight and fight for that cure and its just beyond our grasp. We have shown the world what Asbestos can do to a person as we have lived the life with the fibers inside us so I hope my foot prints will be seen and wont be washed away with the tide and people will remember the fight we fought

Its not about feeling better its about how to regroup and what path to take, how to bring more awareness to the Mesothelioma that rages in our bodies. Im a person that cant wait and I cant wait for that cure. I know we Meswarriors dont know how long we have (nobody knows that answer) but what to do with my time that I have left. Gosh why were we given this fight. Today I will find some answers I want to leave those footprints in the sand xx

One Of my thinking times. Thoughts come and go and I know Im trying to hard to make myself understood.

If I could have my way I would march up to No 10 and say Lets have the Saatchi Bill lets fast track every drug and lets find the right one for Mesothelioma.

My second wish would be to go to get all the leaders around the world in one room and say ban asbestos from our lives.

My Third Wish is to stop the need for having to raise Charity as Im shocked just how much Charity money it takes to run everything from Hospitals, Equipment, Research, Education, Training the list is endless and I I thank each and everyone of these wonderful people that give their time and energy working for free and yet raising so much money.

That of coarse is a pipe dream as it has gone to far and really we cant solve it, as it is in to many places.

The world is doomed where asbestos is concerned. Reading this it brings home how the problem is so huge.

This is how we should be suited up all the time.

http://www.dartford.gov.uk/by-category/environment-and-planning2/pollution/what-to-do-if-you-have-asbestos

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.

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.

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 building 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.
    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.

So what do we do to help, what path do I take to help.

I will carry on and keep voicing how I feel and keep acting as Mother Hen with The Mesowarriors as a group. Each day a new diagnosis is made and everyday someone contacts me for help through this blog and Facebook.

I gather them into our groups and know everyone in the group will help them get through with all the help we can give.  We point the way to the latest treatment the latest Information.

Im leaving Foot Prints in the sand DO NOT wash them away

Rays Blog https://mesoandme.wordpress.com/2015/02/20/friday-117/

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Living With Mesothelioma -My Diary- A Letter from my MP and a great write up in the Liberal Demarcate Voice

Its been a funny day today. Lots of changing in the lives of a couple of friends that have shared their thoughts with me today.

Such turmoil bless them.

Sometimes you have to take the bull by the horns and hope you have made the right choice. I have done that many times in my life sometimes the wrong decision made but many the right one.

I can only offer support at such a time and be an ear to bend.

I had a lovely letter through my door today. Yellow and House of Commons on it.

I had written to my Local MP to support the Saatchi Bill so I opened with dread.

No he has written in support.

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Well pleased that we have an Ali when the Bill is in the House Of commons.

I know I can count on Tracey Crouch.

 

It is a hard fight and not made any easier by a group that has set up against the Bill.

Every Comment we make they counteract and are so brick wall. They do not relent.

http://www.libdemvoice.org/the-independent-view-commons-must-debate-key-medical-innovation-bill-before-the-election-44737.html

Dominc Nutt wrote a lovely piece In the Liberal Voice (we need there help to get through Parliament and we havent much time.)

 

Living With Mesothelioma -My Diary- We have to push the Saatchi Bill to get it in the House of Commons in March -DAST have got a Payout from the Lottery Fund

What a lovely sunny day today,
I made a wonderful home made soup for lunch and home made bread turned out so crusty.
We went out with Louis as I had a parcel to post to the Us to a dear friend.
She is one of those beautiful people that make life so worth living.
Tina has a love of fairies as I do
She told me a long time ago that In 1997 my beautiful father passed of that disease and now they are being to conquer it… I pray for u and I will pray for healing.. Much love and prayers to u… Take care love… Tina..
She has been there everyday for me and we message often.
She really is a very sweet lady. I hope she loves the presents I have sent her.
I had a email today for help. Please give it one more push as it will be dead in the water if we dont get it through by the end of March

The Medical Innovation Bill, designed to help patients safely receive innovative treatments, successfully passed from the House of Lords to the House of Commons on 23rd January 2015.

Parliament dissolves on March 30th due to the general election meaning we have limited time to ensure the Bill is passed and in turn ensure the ground-breaking register of all innovative treatments under the Bill is created.

1/ Email your MP and tell him/her you support the Bill

Use our easy widget to find and email your MP and ask him/her to support the Bill.

http://medicalinnovationbill.co.uk/about-the-medical-innovation-bill/take-action/?utm_source=Saatchi+Bill&utm_campaign=dccaf50ba1-Saatchi_Bill2_17_2015&utm_medium=email&utm_term=0_87c59b6bfe-dccaf50ba1-334460853

 

http://www.asbestossupport.co.uk/

Congratulations to DAST They had a great announcement today

Fanfare* We can now share our secret with you! We have been awarded £110,215 from the Big Lottery Fund and even though we have known for a couple of weeks, it becomes official today. This is brilliant news for DAST and it means that we will now be able to start offering more support to those bereaved by an asbestos related disease. More information about the project will follow shortly.

House Awareness Joanne.jpg

The Derbyshire Asbestos Support Team (DAST) is a registered charity for the relief of people who have suffered ill-health, injury or become disabled from their work with asbestos. We also help their families with the provision of support, advice and assistance. DAST is also linked with other asbestos support groups throughout the UK and abroad to work together to ensure all those injured are offered the support and assistance as required.The Derbyshire Asbestos Support Team was established in March 2002 and in June 2007 became a registered charity (No. 1119684).

The Derbyshire Asbestos Support Team will conduct home visits or hospital visits.

Our services include:-

  • Help with Industrial Injuries Disablement Benefit forms – This is a weekly allowance paid by the Department of Work and Pensions (DWP) if your asbestos related illness has been caused by your employment. This benefit is not payable for pleural plaques.
  • Help with Government Compensation Schemes. Everyone diagnosed with mesothelioma can claim Government Compensation. Advice on making a civil claim – either by using one of DAST’s panel of specialist solicitors or through a sufferer’s trade union.
  • Help with all other benefit claims – including Personal Independence Payment, Attendance Allowance, Pension Credit. We can put you in contact with others who have the same disease. We also support Carers and can put carers in contact with someone else also in the position of caring someone with Mesothelioma or an asbestos related disease.

Although we are called the Derbyshire Asbestos Support Team we offer advice and information to asbestos-related disease victims and their families in Derbyshire, Nottinghamshire, Northamptonshire, Leicestershire, Burton-on-Trent and Lincolnshire. We will carry out home visits throughout these areas.

The Support Group relies upon volunteers. Victims and their families are encouraged to have an input into the working of the group and attend meetings where they can raise concerns and talk to others and share their experiences.

Because of the way that asbestos was used in construction it is often hard (if not impossible) to see. So it’s hard to know when drilling into a wall or dismantling old guttering whether the material you’re working on contains ‪#‎asbestos‬.

Thousands of DIY enthusiasts are unnecessarily exposing themselves to asbestos without realising, despite the dangers of asbestos being promoted heavily for the past 10 years by government organisations such as the Health & Safety Executive.

Asbestos exists in many properties built before 1999 yet homeowners are often unaware as it can be hidden behind plaster, covered by carpets or painted over. Yet many DIYer’s go ahead with work oblivious to the dangers that may exist.

Asbestos was once hailed as the answer to cheap and warm housing as it has excellent thermal properties, doesn’t burn and doesn’t conduct electricity. It can also be light-weight and cheap to produce. However, over the past 50 years evidence has proven that fibres contained within asbestos products are hazardous to human health and can cause diseases such as cancer, asbestosis and mesothelioma even with minimal exposure. Sadly this evidence didn’t become apparent until some years after asbestos products were put into use.

Because of the way that asbestos was used in construction it is often hard (if not impossible) to see. So it’s hard to know when drilling into a wall or dismantling old guttering whether the material you’re working on contains asbestos. The only way know for certain is to have the material asbestos tested.

It is therefore recommended that you follow some guidelines to ensure that you minimise the risk to you or those around you:

– See more at: http://www.aasltd.uk.com/blog/thousandsofDIYersatriskofasbestosexposure.html#sthash.QHJuSRK3.dpuf

Rays Blog https://mesoandme.wordpress.com/