Sunday, December 6, 2015

ASEA International Asbestos Management Conference, Mesowarriors high-tea Brisbane Nov 2015

Hi all
We have been so busy the last few weeks - mind you, I love being busy and enjoying life to the max!

Our week in Brisbane/Gold Coast was excellent.  Keith finished his 35 days of radiation 2 days prior to when we flew to Gold Coast for a night, and I had same day my CT scans and was waiting on results - nothing to report, so I will await my next scans in January or February 2016.

Our dear friends picked us up from Gold Coast airport and we stayed with them for the night, had lots of laughs and a beautiful home cooked meal.  Next morning we me family for breakfast at a little cafe in Paradise Point - was great to see everyone and all enjoyed a hearty brekkie!

On the train to Brisbane (1 hour away) and checked our bags into our hotel.  While on the train who should we bump into - yes, Gail Cook and Linda Thomas (2 mesowarriors) who were on their way to join us for high tea!  We all surprised Linda Reinstein in the foyer of the hotel and walked to the beautiful Room with Roses cafe, in beautiful old Brisbane Arcade to catch up with 10 other warriors/partners and little ones.  We all had a wonderful catchup, lots of laughter, tears and smiles - priceless!  A very special start to the ASEA (Asbestos Safety Eradication Agency) International Asbestos Management Conference!  Beautiful friendships made/cherished and support from this meeting.

Below is a recent interview with ADAO (Asbestos Disease Awareness Organisation) and pictures of our high tea.

ADAO Interview with the Global Ban Asbestos Network Australian Director, Lou Williams, about the ASEA Conference

Posted on November 21, 2015
Mesothelioma Warrior Lou Williams has dedicated her life to raising asbestos awareness, building unity, and sharing her story to advocate for change.  ADAO and Lou have worked closely together for many years and we were honored to recognize Lou with the 2014 Alan Reinstein Award.  On Tuesday, Lou will join Dr. Allan Zimet and Tanya Segelov in the 2nd Annual Asbestos Safety and Eradication Agency (ASEA) International Asbestos Management Conference Australian trials and treatments session where they will present an update on key treatments and studies in Australia.
Below is the ADAO exclusive interview with Lou on her story, her message on the claimed “miracle” drug Keytruda, and her advocacy efforts moving forward. Lou has also started a petition to have Keytruda approved for the Pharmaceutical Benefits Scheme (PBS) for Mesothelioma.   Please support Lou’s action by signing her petition.  ~ Linda
Lou, when were you first exposed to asbestos? When did you first hear of “mesothelioma”?
Lou Williams
When my father, who worked in the building trade, came home from work, I often helped shake out his work clothes, which were covered in powder or dust.  We later learned this to be asbestos fibres and I would often shake the dust off these then put in the washing machine (asbestos fibres on his overalls) and also vacuum his work van.  Unfortunately through dad’s exposure he died of pleural mesothelioma in 1985 aged 54 years after a very painful and aggressive death.  He lasted just a few months and every breath was painful to the last one he took aided with oxygen.
I was diagnosed later in 2003 with peritoneal mesothelioma and then pleural mesothelioma in 2009.  Having had many extensive treatments including surgery, chemotherapy and radiation my body had become pretty toxic to treatments over the years and my tumours/fluid continued to grow throughout my body.  Some treatments worked and I would get shrinkage, others stability … until mesothelioma tumours again would be on the rapid rise.
Tell me about Keytruda?  How has this drug helped you and others? What do you want your government to know and do?
My body was shutting down this year, dramatic weight loss – 42 kgs (approximately 92 lbs.), oxygen 24/7, extreme fatigue, chronic bone pain and end of life stage.  I was offered a lifeline just after Easter this year, 2015, by my oncologist: Keytruda, an immune therapy drug that stimulates the immune system to fight the tumours/fluid.  I have this treatment overnight in hospital every three weeks (currently have had no. 11).
10259033_10152065159782896_3374409223779571442_oI now have regained quality of life and am back campaigning to get Keytruda placed on our Australian PBS (Pharmaceutical Benefits Scheme – free list) for all with mesothelioma so that patients have this life saving option despite ability to pay for it. I am also supporting others globally with this cancer by uniting in advocacy, education and awareness with The Asbestos Disease Awareness Organization (ADAO), The Asbestos Disease Foundation of Australia (ADFA) and Global Ban Asbestos Network (GBAN). I volunteer my time to help others who have an ARD (asbestos related disease) and those innocent victims who are yet to be diagnosed through asbestos greed.
As the GBAN Australian Director, what is most important to you? 
Being a voice for others who are unable to speak out due to illness dealing with this brutal, painful and aggressive cancer. Raising awareness, advocacy and education on the global deadly dangers of asbestos sends a very powerful message to our Government that asbestos greed will no longer be tolerated around the world. We are working towards a total ban of asbestos and this will happen in unity.
What’s your proudest accomplishment?
My biggest accomplishment is being alive and retaining positive quality of life so I can continue my efforts to raise asbestos awareness.
Why should people attend the 2nd Annual Asbestos Safety and Eradication Agency (ASEA) Conference?  What might they learn?
Participating in the 2nd Annual Asbestos Safety and Eradication Agency International Asbestos Management Conference to be held 22-24 November in Brisbane, Queensland, Australia is truly a dream come true for me, and one that I look forward to helping make a difference by speaking about Keytruda and my campaign/petition to have Keytruda fast tracked on our PBS for everyone with mesothelioma and other rare less known cancers too.
What is your “Asbestos Awareness Week” message for the world?
Asbestos is everywhere.  Asbestos kills!  There is no safe exposure!!  We need in unity to keep fighting to get asbestos banned worldwide!
~~~~~~~~~~~~~~~~~~~~~~~~ Mesothelioma Warriors in Brisbane for the ASEA conference ~~~~~~~~~~~~~~~~~~~~~
Sending a hug to Mesothelioma Warrior Community. CANVA (1)
Yesterday, Lou organized a lovely Mesothelioma Warriors’ high tea. As we gathered, we freely shared tears, smiles, experiences, and questions.  During the tea, we snapped a photo message for Mesothelioma Warriors around the world who were with us in spirit, but not physically at the tea. Four of the Mesothelioma Warriors who attended the tea shared their feelings about Lou below …
“Pat and I can’t thank Lou enough for her and Keith’s support. She introduced Pat and I to Gail and Steve, where we all meet for a lovely dinner on the Gold Coast. Pat was diagnosed with Meso in 2012, we were in such shock and disbelief. It was comforting to meet others in our position. Lou has been such an inspiration and great support for Pat and I and we will always be grateful to her. Sadly Pat lost his life in 2014 after 2.5 years of severe pain. Soldier on Lou, I hope those Tumours keep on shrinking xx. I hope this is what you want it is so hard to put into words.” ~ Marilyn McCormack
“I have only meet Lou since arriving in this beautiful country, I have watched her go through her journey , and I find her to be such an amazing woman, I feel privileged to be able to call her my friend, one thing I do know is that she helps so many people , with all her advice and knowledge of mesothelioma , and she is loved throughout the world.” Linda Thomas
Brisbane Tea
Mesothelioma Warrior Tea, Brisbane, AU
“When Steve was first diagnosed in May 2012, we were shattered. We felt so lost and alone and scared. I met Lou online and, through Lou, we met Marilyn and Pat. It really helped to know others going down the same painful road. Lou has been there every step of the way through all Steve’s ups and downs and, when he died in November 2013, she contacted me every day. This was such a life-line for me and meant the world to me. Lou has become a great friend and my life just wouldn’t be the same without her. I am so lucky to have found her and I am so proud of the work she does to promote Asbestos awareness while dealing with her own huge battle with Mesothelioma. She is one amazing woman.” ~ Gail Cook
“Lou is my warrior dragonfly. Lou came into my life with wisdom and knowledge on asbestos issues. She has introduced me to a circle of Meso warriors as well as sharing her own transformation and adaptability of life through her blog. Her dedication to Asbestos awareness and continual support is inspiration to us all. Lou has given me understanding of the deeper meaning of life and reminds me to have lightness and joy.” ~ Suzanne Howarth.
 The next day, Sunday, I met up with my beautiful daughter Debbie and little grandkids for a few days and a special visit to little Evie's disco kinder afternoon.  In between catching up with family I met 2 mesowarriors who lost their husbands a few years ago to mesothelioma and when in Brisbane we catch up.  This time for a smaller version of high tea at the beautiful Shingle Inn cafe.  Lots of hugs, smiles and tears.
Then on the bus back into Brisbane city and a pitstop at Southbank to meet up with 2 mesowarriors from Sunshine Coast, Kim and Linda Stokes who are really getting involved with my Keytruda campaign - was so fantastic to meet in person and spend quality time together.
CURRIMUNDI couple Kim and Linda Stokes are being priced out of an asbestos cancer treatment that could extend their precious time together.
While some patients coping with melanoma pay $6.10 for a treatment of immunotherapy drug Keytruda, Mr Stokes' bill is in the order of $11,300.
The difference is the Pharmaceutical Benefits Scheme only covers Keytruda for the treatment of unresectable or metastatic melanoma in adults, despite growing evidence it has had positive effects for people fighting mesothelioma.
Ironically, Mr Stokes is a former melanoma patient, having had a cancerous mole removed from his back more than a decade ago.
The 59-year-old and his wife had known for years that his boilermaker apprenticeship at Alcoa of Australia aluminium plant in Geelong could one day catch up with him.
It was common for him to pull on asbestos gloves and welding jackets during his late teens to shield himself from the heat of molten aluminium.
His contact with the deadly substance ended when he completed the apprenticeship but its remnants stayed in his body.
Pain in his chest earlier this year was initially thought to be a broken rib but he could not remember a heavy impact to cause it.
Scans initially showed a shadowed area, which further tests indicated was a tumour.
Mrs Stokes recalled her reaction when it was confirmed in April as malignant plural mesothelioma.
Currimundi man Kim Stokes and his wife Linda Stokes are pushing for a drug that could ease Kimm's mesothelioma symptoms to be added to the Pharmaceutical Benefits Scheme. Photo Stuart Cumming/ Sunshine Coast Daily
Currimundi man Kim Stokes and his wife Linda Stokes are pushing for a drug that could ease Kimm's mesothelioma symptoms to be added to the Pharmaceutical Benefits Scheme. Photo Stuart Cumming/ Sunshine Coast Daily Stuart Cumming
Patients have an average life expectancy of less than a year after diagnosis.
"I can just remember a groan coming out of my mouth because we knew that was the worst possible diagnosis," Mrs Stokes said.
Mr and Mrs Stokes met as children while living in Toowoomba and have been married for the past 38 years.
Their two children and six grandchildren are among those who have rallied to give Mr Stokes a boost in the face of his grim outlook.
He has completed the first of six scheduled rounds of chemotherapy at Sunshine Coast Haematology and Oncology Clinic in Buderim and is due to start round two tomorrow.
His oncologist advised him if he were to try Keytruda treatment, it would cost $11,500 every three weeks for an undetermined time period.
That was a cost the Stokes' could not bear.
Mr Stokes learned of the drug through a campaign by a Tasmanian mesothelioma patient to have it added to the Pharmaceutical Benefits Scheme.
The woman, Louise Williams, has had a remarkable return to health since beginning Keytruda treatment earlier this year.
Mr Stokes is supporting her push.
"If it slows things up, other drugs and other things may become available."
Member for Fisher Mal Brough said he had requested a briefing on Keytruda in relation to the scheme.
"I do sympathise with Mr Stokes and other sufferers of mesothelioma as I have seen first-hand the impacts on those who are diagnosed," Mr Brough said. 
More on the Conference in my next blog!

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