Monday, December 28, 2015

Spending time with family and friends for Xmas/New Year celebrations while feeling wonderful on Keytruda/Mesothelioma!

I am enjoying catching up with family and friends over this Christmas/New Year break.  The above photo was taken recently in the beautiful gardens of Melbourne, Victoria with my little grand-daughter Ruby.  Jo, Ruby and myself had a girls' catch up in central Melbourne just prior to Christmas with a visit to the NVG (National Victorian Gallery) and saw Andy Warhol part exhibition plus a visit to the children's Andy Warhol cat section - highly recommended for the kids to computer interact with his cats!

Brisbane Christmas catch up with my beautiful friends of over 35 years when our children were little.

So many other catch ups for Christmas/New Year.  We have hosted some here and had friends/family staying with us - last one to airport tomorrow bound for home!  Extreme hot weather here last few weeks and from tomorrow until Saturday will again see temperatures reach 40 degrees celcius.  We have had huge out of control bush fires down the Great Ocean Road area and luckily no loss of life although unfortunately 120 homes burnt down.  Our area here is very dry and we are on fire alert.  We have only tank water and already this summer have had to buy in water.

Dec 28 in loving memory copy
Can you believe over 107,000 candles would have to be lit for all who have died in 2015 from asbestos related cancers.  Thank you to ADAO (Asbestos Disease Awareness Organisation) for this tradition every year on 28 December candles burn around the world to remember those who have lost their lives to mesothelioma cancer.  The candle lighting tradition holds special remembrance for mesothelioma warrior, Jill Vaughn, whose candle lighting tradition brought us hope and light, year after year. Jill tragically lost her courageous battle with mesothelioma last year. She was a rock of strength and beacon of hope for patients and families around the world. We are honored to keep Jill’s memory and love for community alive through this tradition of remembrance.
Lighting a candle to remember my beautiful dad Norman Heritage who died of Mesothelioma in 1985 aged 54 yrs. Also my candle burns brightly to remember all of those beautiful and brave warriors who have lost their life to deadly asbestos greed. Forever loved always xx
Lou Williams's photo.
In honor of the longstanding tradition, the Mesothelioma Warrior community will light candles on December 28th in loving memory of those who have lost their mesothelioma battle and again in support of Warriors battling mesothelioma on January 4, 2016.
The candle lighting tradition holds special remembrance for mesothelioma warrior, Jill Vaughn, whose candle lighting tradition brought us hope and light, year after year. Jill tragically lost her courageous battle with mesothelioma last year. She was a rock of strength and beacon of hope for patients and families around the world. We are honored to keep Jill’s memory and love for community alive through this tradition of remembrance.
“When I started the candle lighting in 2000, I never dreamed it would go on this long. Thanks to ADAO, I can dream that it will go on forever! Linda and Julie have really made it something special and the site is so amazing. I could never have kept up with all the names. Many blessings for your future work.” — Jill Vaughn.
Any Mesothelioma Warrior Candle Lighting names submitted after December 15th will be added to the list on or before March 31, 2016. Click here to submit a name for the 2015-2016 Mesothelioma Warrior Candle Lighting List 
May the flames of hope, courage, and community continue to burn brightly in our hearts forever.
In unity and hope,
The ADAO Mesothelioma Warrior Candle Lighting team.

Thursday, December 17, 2015

Busy Christmas festivities and Keytruda No. 13 overnight in hospital

On a whim we flew to Tasmania for a few days recently and visited our favourite places Greens Beach and Launceston.  Caught up with friends for Christmas get-togethers including a mini Christmas dinner party with a santa theme - yes Santa did visit and read out a Christmas quiz followed by presents for naughty & nice friends!
Xmas pudding!
Main meal!
We visited beautiful Cataract Gorge in Launceston - a nice walk of 1.5 kms along the gorge, a outdoor cafe visit while enjoying the beautiful view of the gorge, rotunda and hydrangeas in flower plus plenty of peacocks including a mother with her little chicks.

Moment in time! Mother peacock and her babies

Cataract Gorge rotunda and cafe

Entrance to Cataract Gorge

Beautiful Cataract Gorge, Launceston, Tasmania and peacocks.
I then walked for over 3 hours around town and through the beautiful City Park, stopping a few times to just rest and enjoy my surroundings.  That night we flew home and arrived about 11pm.

Next day (Wednesday) I caught the trains into Melbourne city and was admitted to hospital overnight for no. 13 Keytruda.  Blood tests at pathology first, then check in to the ward.  As my room wasn't ready I went for a walk and tram ride to visit my daughter and little grandkids for a few hours returning at 4pm for my infusion of Keytruda.   An old friend visited and we went out to dinner returning to the hospital room at 9pm!  As I am feeling so well atm I hate being in the hospital ward for any longer than I have to do so, also it is impossible to get much sleep during the night so when my oncologist did his rounds at 6.50am I was discharged at 7.30am and walked through the beautiful Fitzroy Gardens enjoying the birds chirping and our beautiful warm weather that was perfect for walking into the city.  I walked around the city until 11am when I met my SIL at the Westin Hotel for a Christmas high tea and long chat!

Home on the train and I finally was exhausted about 10pm and went to bed for a few hours rest!  Woken up by Charlie (our siamese cat) at 6am for his breakfast and telling me it is time to get up and glad that I did - a beautiful warm and sunny morning ... mind you the next few days are forecast to be at least 40 degrees celcius!  High fire danger and windy conditions.

I am doing lots of walking and enjoying being able to do this without exhaustion.  Catching up with family and friends for Christmas festivities I absolutely love and am enjoying!  I don't want Christmas to end!!

To all enjoy your Christmas/New year festivities and party like there is no tomorrow!  It is the now we all have and living in the moment.

To all the warriors who are not doing so well - my heart goes out to you and know that I am holding your hand.

My petition is still ongoing until I have the meeting with our health minister Hon Sussan Ley. and search for Keytruda PBS Lou Williams

My email address is:

Friday, December 11, 2015

Lou's Petition update Keytruda on PBS for Mesothelioma

I currently have a petition to fast track Keytruda on to the PBS (Pharmaceutical Benefits Scheme in Australia) for Mesothelioma cancer and 29 other RLC (rare and lesser known cancers).

To take a look at my petition and sign/comment/share
Search 'Keytruda PBS Mesothelioma' and my petition will appear.

Below is my update tonight on the petition.  I regularly update the petition to keep my supporters in the loop of what is happening.  My aim is to have a meeting with our Health Minister, Honourable Sussan Ley.

Petition update

Lou's blog, my progress on Keytruda and Infusion No. 13 scheduled Weds 16 Dec 2015

Lou (Louise) Williams
11 Dec 2015 — Hi, my blog Living with Mesothelioma in Australia link is below, if you would like to follow please click on the link and insert your email address on right side of page. You will then receive regular blog updates.
If you would like to contact me, my email address is
I am booked into hospital next Wednesday 16 December for my 13th infusion of Keytruda. (Keytruda is intravenously given into the arm with similar procedure as to how chemotherapy is infused). I have Keytruda every 3 weeks.
I am feeling so well, in fact the best that I have felt for a couple of years! 
Tuesday - on the train to Melbourne for an asbestos related meeting, met up with 2 mesowarriors and then enjoyed time with my daughter and beautiful grandkids. The next day, I used the wheelbarrow to shovel mulch onto our garden for 2 hours! Afterwards no exhaustion or tight chest! Later that day I carried 10 buckets of recycled water from our washing machine on to the garden as it is so dry and in drought stage so early in our Summer season. Again no exhaustion or tight chest!
Yesterday on a plane to Tasmania for a few days to recharge my immune system, catch up with friends and walk along the quiet beach! Tomorrow night we are hosting a mini Christmas dinner party with friends, this time last year there was no way that I could do any of this! 
Thank you Keytruda and to my oncologist, Dr Allan Zimet - you both have given me back my life with QUALITY OF LIFE!

Tuesday, December 8, 2015

Why do I campaign hard with advocacy, awareness and education on asbestos issues?

Why do I campaign hard with advocacy, awareness and education on asbestos issues plus give support to those living with an ARD (asbestos related disease including mesothelioma) and to their families including those who left to pick up the pieces when their loved one dies from an ARD?

The simple answer is because I care.  I am not angry because it would stew inside me and myself, in turn, would shrivel up and die of anger at asbestos greed.  I care - no one should ever have to go through the brutal pain and suffering as a victim, and no one should ever have to watch someone they love go through this either.  It is a preventable disease/cancer caused by asbestos greed - not by us!

My darling dad died of pleural mesothelioma (working in the building industry) in 1985 aged 54 years.  He lasted just a few months and in that time he was in so much pain, agony and on 24/7 oxygen - all because he went to work and did his job well!  Since then I have been aware of the deadly dangers of asbestos fibres and had spoken out to warn others working with asbestos products of the dangers. Then when I was finally diagnosed in 2003 with peritoneal mesothelioma and later in 2009 with pleural mesothelioma the crusader in me came to the forefront!  How dare asbestos greed continues to take innocent lives and wreck beautiful families! 

Crusader fights for cancer drug - Star Weekly Newspaper 7 Dec 2015

A Gisborne woman who has spent 12 years battling mesothelioma is urging the federal government to add a revolutionary, but costly, medication to the pharmaceutical benefits scheme.
Despite her ill health, Louise Williams has spent many years fighting on behalf of others diagnosed with lung cancer caused by exposure to asbestos.
Mrs Williams said that before starting a new medication, Keytruda, in April this year, she couldn’t get out of bed.
‘‘I was dying,’’ she said. ‘‘I needed oxygen 24/7, I had severe back pain, bone pain, nausea … my body was shutting down.’’
In 1985, her father, who worked in the building industry, was diagnosed with pleural mesothelioma. He died six months later aged 54.
In 2003, Mrs Williams, then 47, was diagnosed with peritoneal mesothelioma. In 2009, it became pleural mesothelioma. She has had large tumours removed, and she underwent many courses of chemotherapy before starting on Keytruda.
Mrs Williams said her life had been transformed after 12 doses of the drug, which encourages the body’s immune system to fight tumours.
‘‘It doesn’t kick in immediately, but after the third dose my scan showed significantly reduced tumours and fluid,’’ she said.
‘‘After numbers four and five, I started to ease up the oxygen and was walking better and doing basic household things.
‘‘Between five and six I thought, well, what’s wrong with me?
‘‘My quality of life is back. I’m able to do everything I used to be able to do.’’
But Keytruda, which is listed on the PBS for melanoma but not for asbestos cancers, doesn’t come cheap.
Depending on body weight, a single dose can cost between $6000 and $11,000, and it must be administered every three weeks.
‘‘At the moment it’s usually prescribed at the end of life because it’s so expensive,’’ Mrs Williams said. ‘‘I believe once it’s on the PBS, oncologists will be able to try it earlier.’’
Keytruda is getting results with more than 20 different cancer varieties around the world.
‘‘With mesothelioma it’s showing a success rate of 60 to 70 per cent,’’ Mrs Williams said. “Chemotherapy is about 20 per cent. Everyone should have this option.’’
The efforts of Mrs Williams, who has spoken at several international conferences, were recently praised in Federal Parliament by McEwen MP Rob Mitchell.
‘‘I do not think I have met a person with such great inner strength and courage,’’ he said.
‘‘We will keep fighting to help her and hopefully other victims get the support and medication they need to help them lead full lives.’’
Mrs Williams, who hopes to present a 6000-signature petition to Health Minister Sussan Ley soon, said she believed victory was near.
‘‘We will get it done,’’ she said. ‘‘I know we will.’’
A spokesman for Ms Ley did not respond before deadline.
- See more at:
My campaign at the present moment is to get Keytruda fast tracked on to our PBS (Pharmaceutical Benefits Scheme) for each infusion will be free rather than the expensive costs at the moment.  With Mesothelioma we do not have time to wait for the length of usual time it takes for a drug to be submitted and approved.  With Keytruda already on the PBS for Melanoma the benefits are being shown already in many cases of Melanoma (the recent case being Jimmy Carter former President of USA.)

Jimmy Carter credits the new cancer drug Keytruda for shrinking his brain tumors completely. It's one more possible victory for the newest class of cancer drugs that empower the immune system to fight off tumors.  But cancer experts note that it's not at all clear that the drug itself is what shrank Carter's tumors. The former president was also treated with radiation to his brain and had a large tumor on his liver removed.
While most immune therapy drugs boost the immune system so that it can battle the cancer, Keytruda was the first drug to take a different approach that disrupts a trick tumors use to hide from immune cells.  The Food and Drug Administration gave Keytruda accelerated approval in 2014 for patients, like Carter, whose melanoma has spread. It was on the basis of a big study that showed Keytruda could shrink the tumors of about a third of patients by as much as 90 percent.
Dr. Antoni Ribas of the University of California Los Angeles led that trial. Ribas says between 70 and 80 percent of the patients whose tumors shrank on Keytruda are still continuing to see their tumors shrink.
"That's what we expect from the immune system," he said.
Kathy Thomas of Torrance, California, was one of them. Thomas went from being in a wheelchair to walking three miles a day. She'd tried other immune therapies such as interleukin and a drug called Yervoy, but the side-effects made her sick.
And her cancer kept coming back. She started Keytruda in 2012 and felt the effects after two rounds of treatment.
"My hair is back and I am fat and happy," she said. Thomas celebrated her 60th birthday this year by traveling to South America and the Caribbean. She's not cured, but says tumors on her liver shrink after every new round of treatment with Keytruda.
"There needs to be a category of cancer patients like me. I am not cancer-free but I am surviving with it and basically doing well,"she said.
Lou Williams, a mesothelioma sufferer, is campaigning to get the lifesaving drug, Keytruda, on to the Pharmaceutical Benefits Scheme. Picture: Kylie Else        Sunbury/Macedon Leader Newspaper 5 December 2015
LOU Williams has been fighting to stay alive for the past 13 years, with her body finally “shutting down” in April this year.
“I was on oxygen 24/7 and high doses of morphine for chronic bone pain,” the New Gisborne woman, 60, said.
“I was having blood transfusions to stay alive, although I was really receiving palliative care.”
Then Mrs Williams heard about Keytruda — an extremely expensive drug that had shown some promise treating mesothelioma (asbestos cancer).
“I didn’t want to die,” Mrs Williams said.
“So my husband and I decided we’d give it our best shot and paid for the treatment on our credit card.”
Doses of Keytruda cost between $6000 and $11,000, with several rounds of treatment needed before its effects can be assessed.
“At first, I was still shutting down and continuing to lose weight,” Mrs Williams said.
“Then after eight weeks and the third round of treatment, scans showed significant shrinking of my tumours.
“By number five I didn’t need oxygen anymore and by round six I was walking around by myself again.”
Mrs Williams continues to receive doses of the drug every three weeks and is determined to make Keytruda accessible to others suffering asbestos poisoning.
She was exposed to asbestos as a child in the ’70s playing with fibro sheeting offcuts. Her father died from pleural mesothelioma in 1985.
Mrs Williams’ petition, which has so far attracted more than 5900 signatures, is calling for Federal Health Minister Sussan Ley to have the drug fast tracked on to the Pharmaceutical Benefits Scheme (PBS), bringing the cost down to around $36 per dose.
Keytruda was approved for use in Australia for the treatment of advanced melanoma in adults in April 2015.
Mrs Williams’ campaign has attracted international attention, drawing support from mesothelioma sufferers around the world, and has been backed by McEwen federal Labor MP Rob Mitchell, who spoke on the issue in Parliament last month.
“(Keytruda) is well out of the price range of most people,” Mr Mitchell said.
“That is why we have been working with Lou to encourage the pharmaceutical company that makes Keytruda to apply to the Therapeutic Goods Administration (TGA) and the PBAC to have the medication listed. There is no time to waste.”
A spokeswoman for Keytruda’s manufacturer, Merck Sharp & Dohme (Australia) Pty Ltd, said rare cancers were difficult to research due to fewer people enrolling in clinical trials and this could delay applications for registration and reimbursement.
“The recent Review of Medicines and Medical Devices includes recommendations that could accelerate the regulatory approval of medicines, including medicines to treat rare cancers,” she said.
“MSD is fully supportive of any policy changes that would improve access to treatments for rare cancers.”
A Federal Department of Health spokesman said it would be improper for the Minister to comment on the merits of an application that first needs to go through an independent scientific assessment process.
He said the TGA and the PBAC would accept a submission to extend the TGA registration and the PBS listing of Keytruda at any time, but sponsors cannot be compelled to apply for expansions of the scope of existing TGA registration and PBS listings.
Lou's comments: I am just one of many global warriors who in unity help to make a difference.

PGARD (Parliamentary Government Asbestos Related Diseases Board members Senator Lisa Singh and Senator Russell Broadbent had a meeting with our Health Minister, Hon Sussan Ley recently to talk about Keytruda, my campaign and fast tracking it onto the PBS.  A successful meeting and the next step is for me to meet with the Health Minister to present the petition with over 6,000 signatures.  This petition is not about generating numbers of signatures/supporters it is about the 6,000 genuine people who passionately want to see Keytruda put on the PBS for Mesothelioma and eventually the 29 other rare cancers it is showing promise with.

Enough of talk - we need action as no one with Mesothelioma can afford to wait!

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!

My email address is

Tuesday, November 17, 2015

Mesothelioma scans tomorrow and ASEA Asbestos International Conference Brisbane, Queensland

My 2 monthly scans are happening tomorrow for chest/abdomen/pelvis at John Fawkner Hospital, Melbourne.  Prior to this I will have a blood test, fast for 2 hours and drink 1.5 litres of water.
I only have to wait 2 hours after the scan to see my oncologist and get results!  I have a good feeling about this scan however it is always scanxiety that kicks in no matter how many scans that we have had over the years as the results are a do or die situation with mesothelioma cancer.  It determines whether treatments are/ still working or have stopped.  Shrinkage/stability is what we want to hear and breathe a sigh of relief when this happens!  When the scans say tumours/fluid on the rise, then it is usually back to the drawing board with our medical team to see what other treatment options we have or to leave the situation for a while as quite often the current treatment is slowly working its magic and takes longer than a few weeks to show success.

I am busy organising my presentation for the ASEA (Asbestos Safety Eradication Agency) International Asbestos Management Conference happening from this weekend to 24 November in Brisbane, Queensland.  I am speaking on Keytruda and with the help of my brother Matt, putting together a series of powerpoint slides.  Now all that I have to do is to get my speech organised to co-ordinate with this and I will be fine lol!  It all comes together on the day and that is what counts.

On Saturday 21 Nov I am hosting/organising a meso warriors get-together in Brisbane, more details after the event - it is to be a really fun and pampered afternoon as I believe warriors so deserve this!
Pictures to come later! Linda Reinstein (CEO/ADAO) will be guest of honour at our get-together!

Well Keith has only one more zapping of radiation to go tomorrow!  Yay!!  Paperwork to be finalised and blood tests then he is out of there!  So he will drop me off at my hospital for appointments then head over to his hospital for radiation across Melbourne city.

 On a lighter note, I put our Christmas tree up on Sunday with decorations and lights as this year it is extra special to me - as NO WAY did I ever think I would be here!  Thank you Keytruda!

To all warriors doing it tough atm my heart is with you.  A young Australian family has just found me through my blog.  He has just been diagnosed with pleural mesothelioma aged in his mid 30s.  Now they are not on their own, as I will gradually introduce them to the warriors and support with others.

Lou xx


Monday, November 9, 2015

Presenting at International Conference on Asbestos Awareness and Management, Brisbane, Qld 22-24 Nov 2015

The Asbestos Safety and Eradication Agency was established on 1 July 2013 to provide a national focus on asbestos issues which goes beyond workplace safety to encompass environmental and public health concerns.  The agency aims to ensure asbestos issues receive the attention and focus needed to drive change across all levels of government.

 International Conference on Asbestos Awareness & Management.

22 to 24 Nov 2015, Brisbane Convention & Exhibition Centre, Brisbane, Queensland, Australia

The final conference programme is now online with a fantastic line up of domestic and international speakers in asbestos management, health, advocacy and governance to look at what is best practice in managing the dangers of asbestos in our community and abroad. Registration is still open.
All exhibition packages have now SOLD OUT however advertising opportunities are still available and you can still join us as an event contributor at the conference. If you would like to know more, details and benefits are outlined in the prospectus. You can also get in touch with our events team to find out more.

I am looking forward to presenting in the concurrent session 'Australian trials and treatments' on day 2.

Very exciting news as my oncologist Dr Allan Zimet will also be presenting on 'An update on key treatment studies in Australia to support people with an asbestos related disease.'

Tanya Segelov is a member of the Asbestos Safety and Eradication Council and will be the facilitator of this session.

I will be speaking in this session and providing an update on my treatment with Keytruda and also my very important campaign to have Keytruda fast tracked onto the PBS for those living with Mesothelioma.

This session will be held on Tuesday 24 Nov afternoon. 

Keytruda update:
No. 11 infusion overnight in hospital last week.  Main side effect was fatigue for a few days, this could also be the result of little sleep in the hospital due to noises, being waken up for blood pressure to be taken, patients who are unwell and having to be monitored hourly and just in general NOISE!!  Now if I was very unwell this would be okay and the hospital would be the place to rest and be monitored overnight, however as I am well - it is very unsettling to the point of having anxiety feelings most of the time that I spend in the room.  Having been in and out of hospitals since 2003, I'd so much rather be able to have my infusion of Keytruda as a day patient and go home to sleep in my own bed. 

My petition to fast track Keytruda on the PBS for Mesothelioma and other rare less known cancers will be able to alleviate this stay in hospital and when this happens, I can happily every 3 weeks be a day patient for 2 hours then walk out of the hospital and home!  It will be wonderful when this happens for all those living with Mesothelioma!!

The campaign is moving steadily along and I now have a scheduled appointment with the Health Minister, Sussan Ley's Advisor to present the petition, tell my story and also other stories that need to be told of Mesothelioma warriors who are anxiously awaiting Keytruda coming on the PBS (Pharmaceutical Benefits Scheme) - where it will cost $6.10 to $35 per infusion instead of the expensive cost that it is now for those who have the lifeline of Keytruda.  After meeting with the Health Minister's Advisor, my next goal will be to meet face to face with Sussan Ley!

Keytruda is now on our Australian PBS for Melanoma - which is fantastic and such a huge financial burden lifted for those with Melanoma cancer.  It came into effect 1 September 2015. 

Please continue to sign, comment and share my petition - we are making a difference!

(To sign please copy and paste the above link).

Keith's radiation update:
35 doses of radiation daily with weekends off, he now has only 8 to go!  3 years ago Keith had this robotic 4 hour surgery - Robotic prostatectomy is gaining popularity as a less traumatic and minimally invasive prostate cancer treatment. The da Vinci robotic prostatectomy enables surgeons to overcome many of the shortcomings of both open prostatectomy and laparoscopic prostatectomy.

Due to detected traces of cancer in his prostate area, he is now on this trial.

Clinical Trial: PINPOINT

A clinical trial to investigate using a new imaging test to find where prostate cancer has recurred after surgery, and; using implanted radiofrequency emitting beacons to precisely locate and treat recurrences in the prostate bed.
Technical name: Phase II trial harnessing PSMA-PET and Calypso® real-time tracking to precisely locate and treat recurrent prostate cancer.
Principal Investigator: Dr Patrick Bowden (Radiation Oncologist)
Basic Information:
The PINPOINT study is testing a new way of identifying and treating prostate cancer that has recurred in the same place where the prostate was removed from during surgery (prostate bed). There are two parts to the study and not all patients will the requirements to participate in both of them.
The first part of the research involves a new way of identifying prostate cancer cells using a Positron Emission Tomography (PET)/Computed Tomography (CT) Scan sensitive to the biological marker, Prostate Specific Membrane Antigen (PSMA).
The second part of the research involves a new way of treating prostate cancer using very small beacons called Calypso® beacons, which are inserted into the prostate bed and emit a radiofrequency (RF) signal. These allow us to locate and track the prostate bed during radiotherapy.
The aim of this trial is to utilise PSMA PET scans to more accurately identify men who have no metastatic disease and only offer those men salvage radiation therapy, using the Varian Calypso® advanced target localisation technique. This will also allow for early identification of men who have metastatic disease, and thus ensure that they receive the appropriate treatment rather than salvage radiotherapy, which would be futile.


Monday, October 19, 2015

Keytruda and Mesothelioma in Australia 19/10/2015

It has taken a few days to get my facts correct with Keytruda in Australia for Mesothelioma (asbestos cancer).  With good news to report the immunotherapy drug Keytruda is fast becoming a very talked about drug and is starting to show very promising results over time when used for Mesothelioma and 19 other rare cancers.  It already has shown great results with Melanoma and for this reason has been listed on the PBS (Pharmaceutical Benefits Scheme) in Australia for Melanoma only since early September 2015.
There have been phase I study trials in Australia for Lung Cancer, (with Mesothelioma patients taking part in these trials)  in particular at The Austin Hospital, Melbourne, Victoria with Professor Thomas John leading the way with this research.
There are several trials with immunotherapy drugs including Keytruda commenting early 2016 for Phase II and Phase III trials.  Specifically trials for Mesothelioma and Keytruda will commence early 2016.  More details to follow.

Keytruda and other immunotherapies will change how we treat diseases like Mesothelioma.  These drugs are here and available now, but at considerable costs.  There is data and the PBAC should allow a mechanism that enables access to it before the big trials are done.

Tanya Segelov from Turner Freeman Lawyers has written in the ADFA (Asbestos Diseases Foundation Australia) members Newsletter
Over the last few months there has been a development in relation to a second line treatment for mesothelioma.  Keytruda is an immunotherapy drug that has had some success in treating melanoma.  The drug is an immune check point inhibitor.  As cancers develop they paralyse the immune system so that the body is unable to destroy the cancer.  This involves a pathway known as PD-1, Keytruda inhibits PD-1 and enables the immune system to fight the cancer.  As the drug works on the immune system it is not cancer specific.
Merck recently trialled the drug in relation to mesothelioma.  In a study presented at the American Society of Clinical Oncology in April 2015, 25 patients with mesothelioma, all who had previously received standard chemotherapy and whose tumours had progressed, were treated with Keytruda.  Out of the 25 patients, 7 patients achieved a partial response (reduction of tumour) while 12 patients had stable disease (no growth of tumour), a disease control rate of 76%.
The author of the Abstract noted "76% disease control rate in this previously treated malignant pleural mesothelioma population is unprecendented and warrants further study."
These results suggest that the data for mesothelioma is likely to be consistent with those in non-small cell lung cancer and melanoma.

Following the success of the initial clinical trial, a Phase II clinical trial is now being undertaken in the US with results expected in 2016.
Keytruda is now being offered by many oncologists as a second line treatment for mesothelioma.  Prior to Keytruda, second line chemotherapy has been offered although the clinical data in relation to the success of second line chemotherapy shows that it has a less than 10% success rate.  Keytruda treatment is given once every three weeks intravenously. Side effects do not seem to be significant and less than those following chemotherapy.  Those who will benefit from the treatment (in melanoma about 50% of people have responded to this drug) appear to do so at an early stage, within the first 4 to 6 treatments.
There is anecdotal evidence that Keytruda is successful in treatting mesothelioma patients in Australia.  ADFA member, Lou (Louise) Williams, has been having Keytruda treatments for approximately 6 months and in this time has seen her mesothelioma tumours reduced significantly.  Lou's experiences are described in her blog.
Keytruda costs approximately $9,000 per treatment.  At present Merck is offering to pay for 3 of the first 6 treatments (the 2nd, 4th and 6th treatments).  This means that it will cost approx $30,000 for the first 6 treatments, by which stage an assessment should be able to be made as to whether the treatment is working.  If the treatment is successful then it will continue on a 3 weekly basis at a cost of $9,000 for at least 2 years, totalling approx $300,000.  At present Keytruda is on the PBS only in relation to melanoma.
Mesothelioma sufferers who have a current claim at common law can seek the cost of Keytruda treatment.  The test as to whether a defendant is required to pay treatment expenses is whether the expenses are reasonable in the circumstances of both the plaintiff and the defendant.  There are a number of cases on foot where the cost of Keytruda has been claimed.  Defendants have challenged their liability to pay for the treatment and we are waiting for a decision of the Court.  We are however hopeful that a Court will award the cost of Keytruda (at least the cost of the first six cycles with some allowance for the likelihood that the treatment may be successful and continue) where the treatment has been prescribed by the treating oncologist and in the context of promising early results from the Phase I clinical trial and the lack of any effective second line treatment for Mesothelioma.
Applications have also been made to the Dust Diseases Board for the payment of Keytruda.  To date the Dust Diseases Board has declined to make payments on the basis that the drug is not TGA approved. The test however in relation to the treatment expenses payable by the Board under the Workers Compensation Act 1987 is whether the treatment is 'reasonably necessary'.  For persons who have already settled a claim at common law and been refused the treatment cost for Keytruda by the Dust Diseases Board, there is an avenue to appeal the decision of the Dust Diseases Board.  Such an appeal is brought in the District Court of New South Wales.  In a no cost jurisdiction which means that if the case is not successful you will not be ordered to pay the Board's costs.

Keytruda details:
If you would like further details about any of the above, please contact me (Lou Williams) via my email
I will then help you with further information.

Lou's update on Keytruda No. 10:
Overnight in hospital last Wednesday I had my no. 10 infusion of Keytruda.  While waiting for my bed, I walked 3 kms to the local shopping centre (caught the tram back to the hospital area!), and upon discharge the next day walked 2 kms through the lovely gardens into the city of Melbourne.
By the time I arrived home - fatigue had set in, not sure if it was lack of hospital overnight sleep or a combination of that and Keytruda!  Fatigue lasted 5 days however NO PAIN!  This morning some fluid in the tummy area however nothing drastic. 

Discharged at 8.30am and walked through Fitzroy Gardens into city!

Nana enjoying the gardens with my lovely Melbourne grandkids Ruby, Henry and Oliver.

I have been enjoying our beautiful Spring weather and pottering in our garden.  Every day new flowers appear due to the recent rains.  The garden has been sadly neglected over the last couple of years due to illness, drought and lack of water so I am pleasantly surprised with my garden now!
Lilacs, daphne, violets, bearded iris, roses - not many flowers however little surprises every day!
Even Charlie has enjoyed the garden finding a shady spot to nap.

Our lavenders and gum trees blending in to the landscape.

Beautiful bearded iris

Keith's update:
Keith has now had 14 zaps of radiation - only 21 to go!  It is a 6 hour round trip to the hospital and home again (the radiation appointment takes a minimum of an hour or so).  He is getting fatigued however handling it well.

Lou's petition fast track Keytruda (in Australia) on the PBS (Pharmaceutical Benefits Scheme):
We now have over 4,000 signatures and valuable comments - a huge thank you to all who have signed, commented and shared the petition.  I am currently in discussion and further updates to follow.  Please keep sharing - we need more signatures.  In unity we are making this possible!
(This is the link below)

Sign Lou's petition and share.. ‪#‎Asbestos‬ does not discriminate

Nat's mum has Mesothelioma in NSW on life saving Keytruda costing $9,000 per dose. (Nat kindly shared her mum's story).

Lou (Louise) Williams
17 Oct 2015 — Natalie's mum was diagnosed in Oct 2014 with Mesothelioma. The diagnosis for mum and our close knit family was absolutely devastating. Mum contracted it when my dad and her built us a cubby house over 30 years ago. Mum was given no hope of treatment after her initial first round of chemo and was told by her oncologist that there was no point in her making any further appointments as there was nothing they could do, she was given 3 months at best and she should go home and spend time with her family. Mum before this disease was the life of our family and the most attentive of grandmothers. She went from fun loving, active and dependent to bed ridden and gravely ill, in daily pain within a very short space of time. Mum had all but given up until we heard about the wonder drug Keytruda. It gave mum the hope she needed to keep fighting. On discussing the treatment with her oncologist we discovered that the drug was not on the PBS for Mesothelioma and it would cost approx. $9000 every three weeks. Mum is a 69 year old pensioner!!! The family has rallied around and we are paying for her treatment privately. She has always been there for us and now we are trying to be there for her but the financial cost is crippling. Mum had her first dose of Keytruda last week, we are keeping our fingers crossed and supporting Lou's campaign to have this wonder drug put on the PBS for Mesothelioma as its the only chance mum has of regaining her life back.