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!

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.

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.
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 ‌ 
 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.

Tania & Karl

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 : 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


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!
To all warriors around the world I send my love, warrior strength and cocooned hugs to you.
My email is

Lou xx