Tuesday, July 19, 2016

Remembering David who passed away today from Mesothelioma aged 37

Today we say farewell to David from Brisbane, Queensland who passed away this morning from pleural mesothelioma aged just 37 years.  He along with his soulmate and 2 children fought this as a brave warrior never giving up until his last breath.  My heart is with his soulmate and family.  

His soulmate shares below a tribute and picture of David.

My beautiful man remains forever young at 37 y
ears, 9 months and 14 days - he passed calmly at three this morning, to join his loved ones on the other side - watching over us forever. 

Please keep our family and our children in your thoughts, as we celebrate what a special person he was - someone who always put others first, who loved me and our children passionately, and who stayed hopeful until his last breath.

We bickered like crazy, but that man was and will always be, my big love.

David Fry 05 October 1978 - 19 July 2016

❤️loved for eternity❤️


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We were recently in Queensland on the beautiful and warm Gold Coast catching up with family and friends, in particular grandkids. (Evie turning 6 as Elsa from Frozen)!


NanNan with little granddaughter Meadow ❤️

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Asbestos Memorial Service, Asbestosis & Mesothelioma Association of Australia (AMAA) 8 July 2016 (Lou - guest speaker) it was very special and heartwarming to have been invited to attend and speak.
Annual Asbestos Memorial Service
Asbestosis & Mesothelioma Association of Australia (AMAA)
 Friday 8 July 2016 


AMAA Headquarters at Seagulls Club 80 Gollan Drive Tweed Heads West
PO Box 1178, Tweed Heads, NSW 2485
Tel: 07 5587 9006 or 1800 017 758 - Mob: 0417 705 534
Email: info@asbestosassociation.com.au - www. asbestosassociation.com.au

We enjoyed a dinner the night before the Memorial service catching up with various members of AMAA, Barry Robson ADFA (Asbestos Diseases Foundation Australia Org) President and also Peter Tighe, ASEA (Asbestos Safety Eradication Agency) CEO.

Catching up with 2 brave Meso warriors, both diagnosed Sept 2015 with mesothelioma.  Brian is on Keytruda and doing very well.


Peter Tighe, CEO ASEA (Asbestos Asbestos Safety and Eradication Agency
 — at Annual Asbestos Memorial Service Asbestosis & Mesothelioma Association of Australia (AMAA) Friday 8 July 2016

Lou Williams – Social Media Voice ADFA & Australian National Director GBAN
(Global Ban Asbestos Network) - Leading the National Campaign to have the Mesothelioma Immunotherapy drug Keytruda listed for PBS.
 — at Annual Asbestos Memorial Service Asbestosis & Mesothelioma Association of Australia (AMAA) Friday 8 July 2016.

AMAA (Asbestosis Mesothelioma Asbestos Association Australia) Nick Bos, Lou Williams and Peter Tighe — at Annual Asbestos Memorial Service Asbestosis & Mesothelioma Association of Australia (AMAA) Friday 8 July 2016.

Enjoyed a wonderful catch up with Gail Cook a beautiful Meso warrior. Gail's darling husband and soulmate Steve lost his life to deadly asbestos cancer ❤️ 



Saturday, July 2, 2016

Asbestos Memorial Service, Asbestosis & Mesothelioma Association of Australia (AMAA) 8 July 2016 (Lou - guest speaker)

I have been invited by AMAA (Asbestosis & Mesothelioma Association of Australia) to speak at their Annual Asbestos Memorial Service.

It is very special and heartwarming to have been invited to attend and speak.  I am looking forward to meeting many members of AMAA.

Annual Asbestos Memorial Service
Asbestosis & Mesothelioma Association of Australia (AMAA)
 Friday 8 July 2016


AMAA Headquarters at Seagulls Club 80 Gollan Drive Tweed Heads West
PO Box 1178, Tweed Heads, NSW 2485
Tel: 07 5587 9006 or 1800 017 758 - Mob: 0417 705 534
Email: info@asbestosassociation.com.au - www. asbestosassociation.com.au
ACN:  602 979 000

ASBESTOS MEMORIAL SERVICE

The members and friends of the Asbestosis and Mesothelioma Association of Australia welcomes you to our annual asbestos memorial service. Your presence here today is heart warming and we hope you draw comfort from the friendship and support AMAA offers you.

MC Professor Mike Capra (AMAA Patron)

9.50    Bagpipes – Sandra Capra   (AMAA Patron)

10.00    Mike Capra introduces Seagulls Club CEO Stuart Burrows

    Stuart Burrows introduces Geoff Provest MP for Tweed

            OFFICIAL WELCOME – Geoff Provest

    Brisbane Combined Unions Choir

10.10    Barry Robson – President ADFA introduces Lou Williams

10.15    Lou Williams – Social Media Voice ADFA & Australian National Director GBAN
(Global Ban Asbestos Network) - Leading the National Campaign to have the Mesothelioma Immunotherapy drug Keytruda listed for PBS.

    Brisbane Combined Unions Choir  -  Asbestos Song

10.25   
Prayers of Remembrance

“We come together as a community today in prayer to express our gratitude to the volunteers and community representatives who work to give greater respect, dignity and care to individuals affected by asbestos.  May these organisations, including the Asbestosis and Mesothelioma Association of Australia, continue to grow in strength as they give a voice to the most needy in our community”. Amen
“We recognise the dedication and commitment of the tireless medical staff, allied health professionals and clinicians who seek to give sufferers of asbestos related diseases dignity and respect.”  Amen

“We commemorate the sacrifice and service of members of the defence forces who have given tirelessly to protect our people and in doing so may have been exposed to asbestos.  May we acknowledge their bravery and offer them our unfailing support and gratitude both now and in the future.”  Amen

“We pray for the many carers, friends and family members who have stood by their loved ones as they undergo treatment for asbestos related conditions.  May they find strength to continue with their selfless and unfaltering efforts.”  Amen

“We offer encouragement to representatives of industry, government and the trade union movements to continue their efforts to protect the community from asbestos exposure.  May you work cooperatively and proactively to minimise the impact of asbestos both in Australia and internationally.” Amen

10.45    Bagpipes (played by Sandra Capra) as flag lowered to half mast by AMAA     Member and high school student Ethan Carr.

    Minute Silence

    Brisbane Combined Unions Choir  -  Waltzing Matilda

11.55     Peter Tight CEO ASEA – Thanks and Close

Monday, June 20, 2016

Keytruda and other similar immunotherapy drugs/treatments stimulate the immune system to fight the tumours! People with a life threatening illness such as cancer simply do not have time to waste!

Hi
Winter and our shortest day of the year tomorrow here in Australia (21 June).  Misty, foggy and light falling rain seems to be our normal weather daily pattern with top temperatures reaching 12 to 16 degrees celcius.

Merck (USA) posted this article in the press last Thursday.  It explains a breakthrough/good response with non-small cell lung cancer treating it with Keytruda/Immunotherapy compared to chemotherapy.


https://www.thestreet.com/story/13609867/1/merck-extends-cancer-immunotherapy-reach-to-first-line-lung-cancer.html

Merck's flagship cancer immunotherapy Keytruda delayed the re-growth of tumors and prolonged survival in patients with newly diagnosed non-small cell lung cancer compared to chemotherapy, the company said Thursday 16 June 2016!

16 June 2016 - USA/Merck
The new phase III study results from Merck are significant because they represent the first time that a drug belonging to the so-called checkpoint inhibitor class of cancer immunotherapies has demonstrated superiority over standard of care in the treatment of first-line lung cancer patients.
Merck is the first of the Big Pharma companies to demonstrate the efficacy of a checkpoint inhibitor in newly diagnosed lung cancer, but it will likely have company soon.
Bristol-Myers Squibb (BMY) is expected to announce results from a phase III study of Opdivo in first-line lung cancer in the third quarter. Roche (RHHBY) is also making an aggressive push with its own checkpoint inhibitor into lung cancer.

 Lou's comment:
To me this is a huge breakthrough for Keytruda and getting it along with other immunotherapy drugs on to our Australian PBS fast tracked for Mesothelioma and other rarer less known cancers that it is also showing promise with.
It needs to be on the PBS as first line and second line treatments, and should be available on the PBS free for everyone who will benefit from this immunotherapy treatment.  It is used after all other protocol treatments have 'failed' in particular for Mesothelioma.  This is so wrong!  Keytruda and other similar immunotherapy drugs/treatments stimulate the immune system to fight the tumours!  People with a life threatening illness such as cancer simply do not have time to waste!

At the moment, Keytruda and some other immunotherapy drugs that are not on our PBS are costing patients at least $5,000 to $9,000 out of pocket for each infusion!  So so wrong!  How on earth are we supposed to afford this life saving treatment?  Families do not need this added stress when faced with a life threatening illness.  It is bad enough coping with the routine of surviving the never ending rounds of medical specialists/hospitals/bathroom and bed (never ending nausea/pain/fatigue)!!

2 examples of patients with Mesothelioma and who are currently having life saving Keytruda immunotherapy treatments.  Please take a moment to read their stories of survival, strength and hope.
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Help fight asbestos lung cancer
 8 months ago, David was diagnosed with Malignant Pleural Mesothelioma (lung cancer caused by asbestos exposure); a terminal cancer that usually affects people in  ‌their 70s, has hit my lovely man at 37 - 2 weeks after his 37th birthday, he was given 12 months to live.

MPM is a rare and aggressive cancer, and David's is growing fast - we need to access immunotherapy drugs, called keytruda, that have displayed amazing results for tumour reduction and quality of life. It comes at an enormous cost though - with a young family and currently zero income, we are facing up to $13000 every 3 weeks; which is simply unobtainable without becoming homeless.

If anyone is in a position to help, it would be more appreciated than you could possibly imagine; as much as I detest asking for handouts, my kids need their daddy, I need my husband, and he needs these drugs.

Thank you in advance #cancersucks

Below is the petition link, fast tracking keytruda onto the pbs, making it accessible for only $6! Please sign xo

  https://www.change.org/p/federal-health-minister-sussan-ley-keytruda-on-pbs-pharmaceutical-benefits-scheme-for-mesothelioma-life-saving-drug?recruiter=124933620&utm_source=petitions_show_components_action_panel_wrapper&utm_medium=copylink ‌ 
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 Paul Bosworth Fights Mesothelioma 

 
 Hi Everyone,

As many of you are already aware, our dad, Paul Bosworth, was diagnosed with mesothelioma, the asbestos lung cancer, in August 2014.   Dad is only 66 years young. 

Dad retired after 46 years of working - 36 of those years spent at Griffith University - and was ready to start his retired life with our step-mum Stana, when he was diagnosed with mesothelioma.  This was a huge shock to us all as Dad has always been so healthy! Dad never worked with asbestos, but somehow came into contact with it in the worst way possible.  But, as we know, cancer doesn’t discriminate and it only takes 1 fibre of asbestos inhaled 30-something years prior to cause this type of cancer.

Dad has completed two gruelling chemo treatments over 10 months, radiation and an immunology vaccine trial and his tumour has stayed almost the same size however, over the past several months dad has had to endure very strong pain medication to manage the excruciating pain caused by his cancer.  The pain dad suffered pretty much halted his life: he lost a lot of weight and lost his energy, wasn’t sleeping or eating and wasn’t enjoying life anymore.  So now that Dad has gone through chemo, radiation and the immunology vaccine trial; and exhausting all these options, we are now looking at “what next?”.   

On Friday 22nd April, Dad started on a drug called Keytruda.  This immunotherapy drug may be the lifeline patients around the world have been seeking.  In a clinical trial, Keytruda was found to be effective in controlling mesothelioma tumours in three-quarters of patients.  The 25 patients enrolled in the trial, all who had previously received standard chemotherapy treatment but still had tumour growth, received the drug every two weeks. Seven patients had partial response (a decrease in tumours size) and 12 patients had stable disease (no tumour growth or shrinkage). The final results showed an overall disease control rate of 76%!

As Keytruda is not on the Pharmaceutical Benefit Scheme (PBS) for mesothelioma, and in order for Dad to start this treatment, he has to come up with almost $5000 every 3 weeks (approx. $86,000 a year!). These are the out of pocket expenses and this is not financially sustainable for a retiree.

In the short time that Dad has been on this drug, he has noticed a remarkable improvement in his quality of life.  The pain that he has suffered has almost gone, he’s reduced his pain medication and his fighting spirit is back! 

Please help us fund Dad’s treatment so we can keep our old man off the streets – we love him and we want him around to be a part of all the little joys that life brings as we get older (ie. weddings, grand-kids, fur-grand-kids, retirement etc).  Keytruda can and will help keep Dad around!

We love you and we thank you for any donation that you can provide to help save our dad - we are eternally grateful.

Love,
Tania & Karl
xo

Other Information:
Keytruda is on the PBS for melanoma patients and we are hoping (with the hard work of advocates like Lou Williams) that it will be successful in being put on the PBS for mesothelioma!  When it’s on the PBS, it costs patients $37/dose.  A far cry from the $4700/dose dad, and other Mesothelioma Warriors have to cough up!

For more information on living with mesothelioma, check out Lou’s blog – this gives you a great insight into what it’s like having meso and the constant fight to stay alive.  Lou is an amazing inspiration! Lou William's Fight Against Mesothelioma

To sign the petition to help us get Keytruda on the PBS for Meso patients, please visit Change.org : Petition to have Keytruda on the PBS

Thursday, June 16, 2016

Winter has set in and be mindful of colds leading to infections/pneumonia & ASEA 2016 Asbestos Awareness & Management Conference 13-15 Nov 2016

Hi

It has been a few weeks since my last blog.  Our winter weather (Australia) has well and truly set in.  Heater on during the day and open fire at night to warm the lounge room and our bones plus of course Charlie (our Siamese elderly cat) who loves nothing better than curling up on our laps or the chair closest to the Coonara heater.


In particular anyone with mesothelioma/asbestosis needs to be mindful of colds that could lead to infection/pneumonia.  This time of the year especially during chemotherapy treatment I avoid shopping malls where it would be easy to be coughed upon by someone who has the dreaded lurgy/flu and should be home in bed resting.

Pneumonia is an inflammatory condition of the lung affecting primarily the microscopic air sacs known as alveoli. Typical signs and symptoms include a cough with phlegm, chest pain, fever, and trouble breathing. Symptoms can vary from mild to severe. People who are old or very young may not have typical symptoms. Usually people begin improving within three days of starting treatment; however, they may feel tired for more than a month afterwards.

 Thanks to Keytruda having infusions every 3 weeks overnight in hospital for 12 months (April 2015 to March 2016) my immune system is still very much in excellent condition and my bloods very good, so the latest chemotherapy Vinoralbine/Carboplatin minus steroids is a breeze re side effects apart from fatigue that just strikes when it wants to, however in the scheme of things - it is a minor problem!  My last chemotherapy will be next Tuesday followed by CT scans a couple of weeks after that to see further stability/shrinkage of the tumours inside the lungs.  I have returned to excellent health, good appetite and doing 'normal' duties around the house/garden and of course daily outings exploring our beautiful countryside.
I am very excited to post the above logo for the annual Asbestos Safety & Eradication Agency (ASEA) annual Asbestos Awareness & Management International Conference will be held in Adelaide, South Australia 13 - 15 November 2016.

I have been involved and attended both previous conferences held in Melbourne (2014) and Brisbane (2015).  It is an absolute pleasure to be part of these conferences and I look forward to being involved and attending this one in November!
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To all warriors around the world I send my love, warrior strength and cocooned hugs to you.
My email is eradicateasbestos@gmail.com

Lou xx

Wednesday, May 25, 2016

Keytruda continuing to kick goals with Lou's Mesothelioma!

Hi all

Well our weather has turned very cold, windy and tempting rain drops!  I guess winter is here!!  Next Wednesday 1 June 2016 our winter season officially commences for 3 months, then we can look forward to beautiful Spring weather from 1 September!

Last Friday was a marathon day at Epworth hospital, Richmond, Melbourne for CT scans on neck, chest, pelvis and abdomen. A cannula was inserted into the arm and contrasting dye injected during the scans.
A computed tomography (CT) scan is an imaging method that uses x-rays to create pictures of cross-sections of the body.



Yesterday a visit to John Fawkner Hospital, Melbourne for bloods to be taken at pathology, consultation with my oncologist Allan Zimet then chemo with Day Chemo if bloods were okay.
Bloods were fine, so chemo was given the go ahead!

Results of scans showed STABLE, no change really since my last scans in March 2016.  Keytruda is still in my system and working to keep tumours stable along with the 4 chemotherapy infusions of Vinorelbine/Carboplatin minus steroid Dexamethasone and the drug Maxolon!

My health has returned to excellent quality of life, and still NO PAIN since commencing Keytruda in April 2015!  So I am on maintenance chemotherapy of Vinorelbine/Carboplatin with the hope of shrinkage rather than stable of tumours.  There is the mention of Keytruda to have further top up infusions however due to us having to pay $5,000 per treatment it would mean stretching our credit card once more to cover this cost.  However as it is life saving treatment then we would not hesitate to have further Keytruda treatments when the time comes.

Travelling on the Calder Freeway to Melbourne just after 8am this accident had just happened on the other side of road and all traffic was at a standstill.  The road remained closed until 5am this morning, so nearly 24 hours of alternative roads.

PETROL TANKER CAUSES DEADLY MAYHEM ON CALDER FWY

One person is killed and five others are injured after an out-of-control petrol tanker rolls over on the Calder Freeway leaving a trail of crushed and damaged cars.

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Tuesday, May 17, 2016

Keytruda fast track Mesothelioma PBS response from Health Minister Hon Sussan Ley!

Saturday, May 14, 2016

Keytruda for Mesothelioma gave me back my life! Please continue to sign my petition for fast tracking Keytruda on to PBS.

Announcement!  I just want to shout out that I am feeling almost 100% back to good health! 

Keytruda brought me back to life in April 2015 for 12 months giving excellent quality of life.  At the end of March 2016 my scans showed fluid shrinkage, however new tumour growth inside the lungs.
 
Thanks to Keytruda stimulating my immune system I was able to commence a chemotherapy regime of vinorelbine/carboplatin to shrink these new tumours.  After the first infusion of this combination chemotherapy I went into a coma and was rushed to hospital where it was a miracle that I pulled through!  The steroid dexamethasone infused in this chemotherapy created an allergic reaction causing the coma and as a result of this, I now have diabetes type 1 requiring insulin to be injected daily into my stomach as the pancreas has stopped producing insulin.

Keytruda has not failed me - it has strengthened my immune system giving quality of life and NO PAIN and has enabled me to have this chemotherapy regime as the immune system is excellent!



20 April 2016 the above picture at my birthday party with 35 family attending.  This picture is on my way to recovery after my coma episode in hospital 3 week's prior when it was touch and go if I would pull through!  I did and now am on my way well and truly to recovery.  I must mention that my hair just went grey overnight upon admittance to the hospital!  I have kinda grown used to it!
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The article below is in today's national newspapers around Australia and in particular highlighting Keytruda (immunotherapy drug) as showing promise with 30+ rare cancers.  Please continue to sign my petition to get Keytruda and other immunotherapy drugs fast tracked on to our PBS (Pharmaceutical Benefits Scheme) so it will be free for all patients who need these life saving drugs!  At the moment costs to patients vary between $5,000 and $9,000 per infusion.  We simply do not have time to waste!
Petition link:  (Please copy and paste link).
https://www.change.org/p/federal-health-minister-sussan-ley-keytruda-on-pbs-pharmaceutical-benefits-scheme-for-mesothelioma-life-saving-drug

Drug that saved Ron Walker could help wide range of cancer patients


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Ron Walker has backed a campaign to have Keytruda fast tracked for subsidised use on melanoma.
A DRUG that saved Ron Walker from melanoma may also be able to save patients from 30 other types of cancer.

Immunotherapy drug Keytruda is now showing promising results in 250 international trials, offering hope of a new treatment to thousands of desperate Australians with cancers ranging from breast, pancreatic and lung tumours, to those with leukaemia, myeloma and lymphomas.
Researchers have discovered that the same biomarker the drug aims for in melanoma cells — known as PD-L1 — is also present in many cases of the 30 other cancers.
MORE: Cancer expert in fight of his life
This means a new generation of anti-PD-1 drugs like Keytruda and Opdivo may work on cancers that are genetically similar, regardless of where they are located in a patient’s body.
Biomarker tests developed by Keytruda manufacturer MSD show between 15 and 100 per cent of some cancer types may become targets for the drugs, though Peter MacCallum Cancer Centre oncologist Prof Grant McArthur said trials are now determining how effective the treatment was for each disease.

“There is accumulating evidence on the trials of significant rates of tumour shrinkage on more than just melanoma, lung cancer, kidney cancer ... there is a growing list of cancers that do show a response to the PD-1 drugs,” Prof McArthur said.

“These drugs are active in multiple diseases. We are anticipating that these PD-1 drugs like Keytruda, Opdivo and others coming through are going to be used in multiple cancer types.”
Cancers are classified depending on where they occur in a person’s body, with different treatments required for each type.
But, because the new drugs work based on the genetic makeup of the cancer’s cells rather than their placement, they require a new set of processes to determine which patients will benefit.
US-based Dr Ken Emancipator, who developed MSD’s PD-L1 biomarker test, said being able to screen the makeup of a patient’s cancer to determine if it will respond to the medication could be the difference to gaining lie-saving treatment early.
“When the tumour expresses PD-L1 we have identified a patient that is very likely to benefit from an anti-PD-1 therapy,” Dr Emancipator said.
“We are pursuing the test in lots of other cancers. We are looking at monotherapy in 30 different tumour types.”

The PD-L1 protein usually works to prevent the body attacking its own cells when inflammation occurs. But, because some inflammation-causing cancers have been found to also express PD-L1, drugs that block the protein can trick the body’s immune system into attacking and killing the cancer.
In a further boost researchers believe they may be able to alter other cancers so that they begin causing inflammation, therefore making themselves vulnerable to the new drugs.
After his life was saved as part of a clinical trial, Ron Walker backed a campaign to have MSD’s Keytruda fast tracked for subsidised use on melanoma last year, and last week the Federal Government also subsidised similar PD-1 drug Opdivo.
Dr Emancipator believes the Therapeutic Goods Administration now needs to examine approving drugs based on their effectiveness in treating cancers with similar genetic make-up, rather than classified on their location, to fast track their use.
But TGA spokeswoman Kay McNiece said the impact and safety may vary.
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Lou's email address:  eradicateasbestos@gmail.com
In particular if you are or have had Keytruda please email me your details for my file, especially if in Australia.