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

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

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

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

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

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

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

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

Campers love meeting up at the shows.

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

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

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

http://livestream.com/blueheronfilms/adao2015

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

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

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

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

http://www.asbestosdiseaseawareness.org/archives/25029

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

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

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

Rays Blog https://mesoandme.wordpress.com/2015/04/19/sunday-116/?fb_action_ids=912972172056934&fb_action_types=news.publishes&fb_ref=pub-standard

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

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

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

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

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

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

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

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

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

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

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

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

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

VW T4 Autosleeper Clubman Grande Luxe

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Rays Blog https://mesoandme.wordpress.com/2015/04/12/sunday-115/

http://www.sciencedaily.com/releases/2010/06/100629094153.htm

http://www.asbestos.com/cancer/

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

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

Dare we hope spring is turning into summer at last.

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

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

British Lung Foundation did warn us.—-

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

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

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

http://act.foe-scotland.org.uk/lobby/Low-Emission-Strategy

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

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

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

I salute them for their patience.

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

We just published the beautiful 128 –page conference program! You can view and share everything via the April eNewsletter SPECIAL ASBESTOS AWARENESS CONFERENCE EDITION. If you are a volunteer, speaker, honoree, sponsor, or donor – please read and share this newsletter with your family and friends. Please join me in thanking Herman Hamilton for his continued ADAO leadership and especially with conference planning and for updating our mobile app! http://conta.cc/1z3EUAc Mentioned in this eNewsletter are: Doug Larkin Richard A. Lemen Ellen Costa Jordan Zevon Barbi McQueen Marilyn Amento Hazards magazine Ann Samuelson Emily Reinstein Jasmine Uysal Lou Williams Jill Cagle Ellen Volk Patton Ellen Tunkelrott Mavis Nye Asbestos Hunter Heather Von St James Troi Atkinson Domani Tripam Sandra Neuenschwander Earl Dotter Geoff Fary Barry Robson Fernanda Giannasi Guadalupe Aguilar Madrid Arturo Juarez Aguilar Libby Card Yvonne Waterman Mark D Catlin Cameron Von St. James Syed Mezab Ahmed Environmental Working Group World Health Organization (WHO) American Public Health Association Christine Winter Brent Kynoch and others.

http://archive.constantcontact.com/fs113/1101491837344/archive/1120671503266.html

https://i2.wp.com/www.asbestosdiseaseawareness.org/wp-content/uploads/BarbiSteve1.jpg

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

http://www.simmonsfirm.com/famous-mesothelioma-deaths-warren-zevon/

Please watch as Barbara and Jorden appear together.

The Visual blog of Warren Zevon ans a Mesothelioma Warrior

Living With Mesothelioma-My Diary- I went to london –Not to see the Queen though but to meet Mesowarriors

Today we went to London but not to see the Queen but to meet up with Mesowarriors.

The weather has been wonderful and so sunny.

A lovely train journey and then on the Underground to Mansion House with a walk to St Barts. Lynne an Richard were already there as Richard is on the TRAP trial and doing well.

Karen and Terry had traveled down from Scotland yesterday to try and find treatment for Terry as they are not being offered enough in Scotland. There is a funding issue to be treated in UK but they are getting over that.

We all met up and had a chat and then Richard went up to the 7th floor for his treatment and Terry was waiting at Clinic 2 to see Jeremy Steel.

We went up to the 7th floor but Lynne was on her way down as she could see there wasnt any room to sit up there as it was busy. We passed in the lift shaft. ha ha !!! playing going up and down we did meet on the Ground floor.

We did get some wonderful pictures of the view up there

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Then we took photos on the ground floor.

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So deep in Conversation xx

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the gang hit town

What a lovely hospital it is now with this new part built. it is where the scanning department and bloods were so now its a modern hospital.

St Bartholomew’s Hospital (Barts), is now part of Barts Health NHS Trust.

We offer a full range of local and specialist services, which includes centres for the treatment of cancer, heart conditions, fertility problems and sexual health conditions.

The fight against cancer took a major step forward with the opening in March 2010 to patients of the new £200m Barts Cancer Centre.  The nine-story extension of Britain’s oldest hospital boasts some of the most up-to-date diagnostic and treatment facilities anywhere in the world – all in a stunning environment.   As well as offering the latest minimally invasive surgical procedures, cancer drugs, stem cell and gene therapies, Barts Cancer Centre has an impressive array of state-of-the-art imaging, radiotherapy and radio surgery technology.

Our world-renowned hospitals – Barts, The Royal London and The London Chest – are home to many international experts and world-class specialist centres, from cancer, cardiac and digestive diseases to trauma and a leading children’s hospital.

Our daily mission is bringing excellence to life – giving our patients the best possible care so that they can live better, fuller, longer lives. We aim to provide safe, clinically effective and patient centred care to the highest international standards.

We have one of the best survival rates in the NHS, a measure widely regarded as an indicator of clinical excellence overall.  During 2009/10, our survival rates were better than would be expected (as indicated in Dr Foster hospital standardised mortality ratio), given the nature and complexity of the cases we treat.  Patient safety is paramount at Barts and The London and we have an excellent track record to prove it.

And with the world’s biggest hospital development – a £1 billion investment – we will soon care for our patients in facilities that match the quality of our clinical care.

We cant say they dont spend money on the NHS as there is a lot of good hospitals are being built in London for cancer treatment.

Lynne Ray and myself went for a coffee and a long chat.

Terry went in to see Jeremy Steel and when they came out they had good news that after a holiday and a new scan Terry will be offered a new Chemo and then look at a trial. I wish them all the luck as at last they feel happy with the information offered.

I spoke to Jeremy who was surprised to see me there. “what are you doing here” he said. i explained that we all knew each other. he is aware of how we have banded together and that does see so many of the Warriors.

We parted then as Karen and Terry were traveling back to stay at South Mimms on the way back to Scotland tomorrow.

We went up and said goodbye to Richard who was in the chair for his Injection.

I hobbled back to the Tube and the train home. I have come home really worn out with all the walking after drag day yesterday.

It has been a great day and we have really enjoyed meeting my face book friends.

http://www.nhs.uk/Services/hospitals/Overview/DefaultView.aspx?id=46341

Living With Mesothelioma -My Diary- Drug Day at the Royal Marsden MK3475 is still working on me

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Drug Day today and we arrived so early as the roads were clear. The schools are closed for Easter and that makes such a difference.

The journey was so pleasant.

It appears tjough that I should have gone as I should have had a letter putting me off until Wednesday as they have such a back log to get through, Easter Holidays of coarse. I was prepared to have to go home but Carol my nurse said noway. your here so we will sort it. I truly did not have a letter to cancel though.

Anyway I knew then it would be a long day and we settled down. I even weighed myself and did a urine sample to save time.

My bloods were taken and we waited for the Doctor.

She came and called me in and everything was perfect. My Biology was 100% My Bloods were 100% My urine infection was clear. My Hydration was good but just a dip in Kidney activity. She said that is always up and down so everything was good to have the drug.

The fluid in my legs and ankle have to worked on again so water tablets will be used again and E45 cream and to let the air get to my legs at night so Im listening..

So with that we went down to the Restaurant and i had a toasted cheese sandwich. It was lovely.

On buying a paper we strolled into the sun and sat on a bench. We have not done that before and was amazed at the long queue of cars trying to get to the car park.

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So after this lovely Interlude we went back to the ward. Some weeks people sit there and dont talk this week we all chatted away. The man there with Lung Cancer is on Verestems drug and doing really well. lote sof shrinkage but side effects of a rash and diabetes made worse but he is taking the risk to get the shrinkage.

He is so happy that he is improving.

Another lady with Brain cancer is doing well. I love the courage that is shown by these patients.

Frank and his Daughter were there again. She is such a good nurse to her Dad, who has had so many Ops for a brain tumour and lost the abilty to walk normal etc etc but he is the most cheerful man and he loved our Mortorhome that he is going to buy one and his daughter will drive it. She had her son with her who had a box of tricks, like a nail through his finger and when he gave me a chewing gum it had a big spider attached. I had to scream -well I had to amuse him didnt I. It passed the time and I was soon called for my Drug.

My Wonder Drug. It is in my veins for 22nd time. Thats where it isnt like Chemo. you can only have no more than 6 of chemo. This is going on and on, I just dont know how long for. How long will my body tolerate it. Only time will tell.

Rays Blog — https://mesoandme.wordpress.com/2015/04/07/tuesday-137/?fb_action_ids=907319032622248&fb_action_types=news.publishes&fb_ref=pub-standard

Please read all of the article and links but I liked this bit

A great write up on Immunotherepy —

Many clinical trials are ongoing to study these different types of immunotherapy and answer key questions, including:

  • Does any one of the immunotherapies work better alone or in combination with other treatments?
  • Should immunotherapy be given before or after another treatment?
  • When in the treatment of non-small cell lung cancer should the immunotherapy be used?

There are many phase 1, phase 2, and phase 3 studies currently under way that will add to our understainding of immunotherapies.7

If you are considering participating in a clinical trial, start by asking your doctor whether there is one for which you might qualify in your area. In addition, here are several resources to help you find one that may be a good match for you:

http://lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/immunotherapy

Living With Mesothelioma -My Diary- Day 5 of Asbestos Global and Lou has a a chance at my Drug -Hooray!!!

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Happy Easter Sunday.

One of those days when I was thinking of all the Easters past and a yearning for my daughter. It still hits me after all these years.

We woke up to the wonderful news that Lou in Australia is going to go onto my drug. Im so happy to know another mesothelioma warrior is getting a chance at this drug. Lou like me has run out of options even though sh has been operated on as she has Peritoneal which is in the tummy regions.We had a chat on FB this morning and she has my positive attitude so

I pray it works for her and that her tumour bi-op passes the test.

Im amazed that she is going to have to pay for the treatment and realise how lucky we are in the UK with the NHS although Im classed as private and the drug company is paying all bills and expenses for me.

I have a feeling it isnt a trial but that the drug was fast tracked for melanoma in Australia and so they are using it as a last result drug. Pembrolizumab (formerly MK-3475 and lambrolizumab, trade name Keytruda[1]) is a drug marketed by Merck that targets the programmed cell death 1 (PD-1) receptor. The drug is intended for use in treating metastatic melanoma.[2][3] Pembrolizumab was invented at Organon Biosciences which later became Schering Plough Research Institute and then Merck & Co.[4]
 
On September 4, 2014 the US Food and Drug Administration (FDA) approved pembrolizumab under the FDA Fast Track Development Program. It is approved for use following treatment with ipilimumab, or after treatment with ipilimumab and a BRAF inhibitor in patients who carry a BRAF mutation.[5]
 
The drug is now in Phase II trials for non-small-cell lung cancer (NSCLC) in patients with oligometastatic disease at the University of Pennsylvania
Still that means nothing it’s the chance of getting some results that counts.

We have had a wonderful warm and sunny day and so after closing the den at dinner time we went to our favourite park with Louis.

it was busy with many cars parked up in the car park. People go on long walks from here. ray and I have walked into Canterbury when we first moved here.

Now I have to make do just walking round the park and taking in the wonderful view.

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Off he ran chasing the ball. i love it when he gets so much exercise.

We came home and had a coffee and a kip.

Asbestos Hunter placed this on facebook and I liked it

Day FIVE of Global Asbestos Awareness Week features a blog from infamous Brazilian anti-asbestos advocate Fernanda Giannasi about workers safety and ban asbestos as well as Joe’s story, “How Many Deaths Will It Take.” Check back tomorrow for Day SIX – April 6th for a blog from the Environmental Information Association (EWG) about the Toxic Substances and Control Act (TSCA) of 1976, .” http://bit.ly/1ERA1RY

This day of Global Asbestos Awareness Week is dedicated to Joe’s story, “How Many Deaths Will It Take?

“First and foremost, education is critical in preventing asbestos exposure.  Do you know where asbestos could be in your home? Your office? Your kids’ school?  Asbestos has been banned in 55 countries, but not in the U.S. or all of Brazil.  Even countries that have banned asbestos may still have asbestos present in buildings and consumer products.  Take control of your health and safety.

  • Workers:  Make sure you know how to identify asbestos and how to have it safely removed.  Ask for the training necessary to do your job safely and do not disturb asbestos if you are not a licensed professional.
  • Everybody:  Learn where asbestos can be found and how to identify it.  Do not remove or damage asbestos material.  Contact asbestos professionals for testing and removal information.

The battle to ban asbestos is a global one, and there has been some progress in recent decades.  For example, the Rotterdam Convention is approaching in May.  The text adopted at this multinational conference promotes shared responsibilities related to importing and exporting hazardous chemicals, including asbestos.  It also encourages open information exchange to protect the public.  I am very pleased to see how many countries have signed on over the years and it is certainly a step in the right direction.

Fernanda 2I also suggest that everyone take advantage of the resources available in their respective countries.  For those in Brazil, leverage Abrea Associação Brasileira dos Expostos Ao Amianto (ABREA).  ABREA was initially constituted in 1995 by the ex-workers of Eternit from Osasco to give visibility to the problems resulting from asbestos locally and nationally; to carry through medical examinations in the asbestos-exposed people (former workers and their families); to consider actions for indemnification/compensation for the victims; to inform the population and consumers on the risks of asbestos and its harmful substitutes to public health; and to fight for the banishment of asbestos in all of the Brazilian territory, as already occurs in more than 50 countries around the world.

Of course, asbestos is a problem around the world, and victims and advocates can benefit significantly from sharing their knowledge and experiences.  As such, in partnership with the Asbestos Disease Awareness Organization (ADAO), we launched the Global Ban Asbestos Network (GBAN), a virtual portal established to promote and facilitate collaboration, communication, and action internationally.  Check out the website to learn about efforts around the world!

I hope that you can share this information with your family, friends, and coworkers.  Protect yourself, connect with victims and advocates, and take action!”

-Fernanda

Special thanks to Sarah and The McOnie Agency for their amazing help with Global Asbestos Awareness Week

Each year, upon the passage of the U.S. Senate’s “National Asbestos Awareness Week” Resolution, in addition to a week of awareness, the Senate “urges the Surgeon General of the United States to warn and educate people about the public health issue of asbestos exposure, which may be hazardous to their health.”

Asbestos Worker

MARF have published a blog http://blog.curemeso.org/risk-asbestos-exposure/

When one person is exposed to asbestos, that person is not always the only one affected. Take-home, or secondary, asbestos exposure happens when the initial person exposed then exposes others around them through contaminated clothes, vehicles, and so on. Learn more about the risks in our new blog post

As Im a secondary this interests me

Asbestos does not always affect only the initial person exposed. Take-home exposure, also known as secondary exposure or bystander exposure, is occupational exposure carried from the work place to the home, which exposes loved ones to the same toxins as the worker. These exposures will play a large role in ‘round two’ of asbestos disease. These exposures venture down many pathways; through laundry, wearing work boots throughout the house, using the same vehicle for work and family, or simply hugging a loved one when returning home from work.

When discussing this topic, Diane Blackburn-Zambetti, Director of Policy and Prevention Education at the Meso Foundation, stated, “In my career as a radiation therapist, I had the opportunity to treat not only one of my father’s co-workers, but both of his daughters for asbestos related diseases in an 8 year time span.”

Take-home asbestos exposures are not uncommon. In speaking with the mesothelioma community, Diane met various individuals affected by take-home exposures. In the late 1950s, the wife of a Steelworker was diagnosed with mesothelioma and passed away shortly after. Linda Papa lost her mom from take-home exposures she experienced while doing her husband’s laundry.

One man in the mesothelioma community was a proud IBEW 1 tradesman for 40 years. On Christmas Eve in 2004, he was admitted to the hospital and diagnosed with lung cancer that had metastasized to his brain. He passed away in 6 weeks. One year later, his daughter was diagnosed with peritoneal mesothelioma.

In 2015, the work force has become more safety-oriented. This is not to guarantee that take-home exposures do not and will not occur, as mentioned above. In the mesothelioma community, it is more important than ever to educate and utilize the tools provided by the Meso Foundation to change the focus to STOP – LOOK – THINK when dealing with asbestos.

This has been a great week in the US and Global so much Info has been released. I wish people would stop saying that nothing is written about the subject. In the 6 years that I have had Mesothelioma the info has poured out. Just Google –i do !!!