Monday, April 20, 2015

Lou is back! On wonder drug Keytruda!

Formula 1 Australian Grand Prix boss Ron Walker credits the Keytruda cancer drug with saving his life
Formula 1 Australian Grand Prix boss Ron Walker credits the Keytruda cancer drug with saving his life Photo: Chris Hopkins
Australia has become the first country in the world to register the cancer drug that former Melbourne lord mayor Ron Walker credits with saving his life.
The Therapeutic Goods Administration has registered Keytruda for treatment of patients with advanced melanoma.
The drug, which has not been listed on the Pharmaceutical Benefits Scheme, is expected to cost about $150,000 a year.
Peter MacCallum Cancer Centre's Grant McArthur said more than 1000 Australians battling advanced melanoma each year could need the new drug.
"It is essential that these patients are able to access Keytruda on the PBS as soon as possible," Professor McArthur said.
Australia has the highest rate of melanoma in the world, with 31 people a day on average diagnosed with the cancer.
Clinical trials funded by the manufacturer Merck found Keytruda was more effective than existing advanced melanoma treatments.
Results of the trial, which involved 834 patients in 16 countries including Australia, were published this week in the New England Journal of Medicine.
Businessman Ron Walker travelled to the US to join a trial of the drug in 2013, and has been lobbying for Keytruda to be made available in Australia. 
The above article is about the drug Keytruda , also known as Pembrolizumab.
Merck has also signed agreements with rivals Pfizer, Amgen and Incyte to test MK-3475 in combination with other oncology drugs across a variety of cancers. and the results are doing so well. (Same drug as our UK mesothelioma warrior Mavis Nye is on and having amazing success with for pleural mesothelioma).

Pembrolizumab (Trade name Keytruda formerly lambrolizumab; also known as MK-3475) is a drug marketed by Merck that targets the programmed cell death 1 (PD-1) receptor. The drug is intended for use in treating metastatic melanoma. Pembrolizumab was invented by Gregory Carven, Hans van Eenennaam and John Dulos at Organon Biosciences which later became Schering Plough Research Institute and then Merck & Co.

Lou's latest
Thursday 9 April was a turning point in my progression of this cancer to being handed a life saving drug that will hopefully stimulate my immune system, shrink tumour progression and give me more quality of life and lots more living to do!

Thursday 9 April admitted overnight at Epworth hospital in Melbourne where I had my first 3 weekly dose of wonder drug Keytruda that is showing great promise with mesothelioma in trials around the world in shrinking tumours.  Unfortunately as the drug is approved in Australia however not on the free list it is very costly for us with each dose.   Intravenous just like chemotherapy treatment for approx one hour with by the time other drugs are administered as well.  That evening seemed to be okay.  Day 2 and day 3 at home I felt like I had been run over by a bus - total fatigue, no energy and no appetite to eat anything plus nausea thrown in too.
Day 4 - I felt like I was dying, unable to get out of bed due to total fatigue, weakness and high temperatures hovering around 38 degrees including sweats.  On portable oxygen most of the day.
Day 5 to Day 10 - Extreme fatigue, nausea once or twice a day, oxygen most of the time and lack of energy.
Day 11 and Day 12 - Extreme fatigue oxygen on and off (not as frequent though) and in between feeling slightly improved.
Day 12 evening I started to come good - less oxygen needed, still fatigue however I am finding slowly I am able to do a couple of things before fatigue overcomes me - like being on the computer and doing my blog!  Appetite slowly returning.

My next treatment will be Thursday 30 April overnight stay in hospital.  Hopefully by then I will be feeling less fatigued, appetite good and my immune system will be stimulated and improved.

Lou's 60th birthday
April 20 I turned the big 60.  I had a big celebration party 10 year's ago when I turned 50 thinking if I get past my dad's death aged 54 yrs in 1985 from pleural mesothelioma that I would be a lucky girl!  Little did I know that I would be celebrating in style my 60th on Sunday and Monday with family and dear friends!

Photos coming.

Saturday, April 4, 2015

Lou's health update - PEMBROLIZUMAB

Firstly to the cynics out there .... I am not dieing .... dying just yet!

A visit to my oncologist on Wednesday evening revealed that my weight is plummeting 47.8 kilos at the moment and dropping.  So Twiggy eat your heart out!!  I am going down hill and yes slowly dying ... being in my 12th year living with pleural and peritoneal mesothelioma and I am writing the truth as mesothelioma cancer once it gets a control there is no stopping it.  My tumours in the linings are gradually joining up ... basically forming like a lump of hard concrete crushing my organs and my breathing until literally my last breath!  Eventually pain will be unbearable and it will be just a matter of time then before I die.

HOWEVER I have been thrown a lifeline!  My oncologist has said there is a new drug PEMBROLIZUMAB available in Australia that hopefully will work in treating patients with malignant mesothelioma, a cancer of the linings around the lungs (Pleura) or abdomen (peritoneum).  Monoclonal antibodies, such as pembrolizumab, work by blocking a protein called programmed cell death 1 (PD-1) which may stimulate an immune response and kill tumour cells.

My oncologist, Allan Zimet has said hopefully I will get 18 months maybe more time with having it, if I do not have it then I will die probably in a few weeks - simple as that.

Catch is - it is new and not on our free drug list so we will be up for quite a few thousand dollars with every dose, every 3 weeks (at this stage 3 doses with a scan in between each one).

There is excellent reading about this drug on
Pembrolizumab in treating patients with malignant mesothelioma
March 2015 - University of Chicago - phase 2 trial (not open to participant recruitment yet).

Last week another wonderful survivor of pleural mesothelioma in Australia and who is also seeing my oncologist, Mary Heddles started on this new drug, so far extreme fatigue has been her biggest side effect.  Good luck Mary - looks like we will be on the trial together.

I will keep you informed.  As Allan says - I am a responder to treatments!

This week it is Global Asbestos Awareness Week.
Posted on March 31, 2015
Ruby & Louisa Aug 2013
Lou Williams, Australian Director, Global Ban Asbestos Network (GBAN); and Social Media Awareness Officer, Asbestos Diseases Foundation of Australia (ADFA)
I want to start this blog with the facts. I’m dying from mesothelioma. But I refuse to die in vain. If there is one wish I have, it’s that the main legacy of asbestos warriors like me will be that we helped create a foundation for a global ban on asbestos. I lost my father to it. I’ve attended over 60 funerals of victims who died from asbestos disease. Enough is enough.
Since my father was first diagnosed in 1985 at the age of 54, dying less than a year later, I was determined to do something to make a difference. Since my own diagnosis in 2003 and subsequent battle with meso, I have continued my passion for global awareness and unity. Only in unity can we truly ban this horrific and lethal mineral.
As I write this, enjoying each moment of each precious day – which have become even more precious to me as I reach the final stages of my journey – I am struck with hope. I still have hope that we will one day, in the not too distant future, see a world without asbestos.
Global Asbestos Awareness Week is coming up April 1 – April 7.  As the Australian Director of theGlobal Ban Asbestos Network (GBAN), Social Media Awareness Officer of the Asbestos Diseases Foundation of Australia (ADFA), and volunteer for the Asbestos Disease Awareness Organization (ADAO), I am passionate about how powerful this effort really is. Asbestos knows no geographic boundaries. It doesn’t discriminate. It is a killer. And it’s time to stop it in its tracks.
There are a series of presentations and many opportunities to get involved over the course of this week. I want to share the “Top Five Asbestos Facts” –  as they  highlights some of the most important facts about asbestos and why we need a ban:
FACT 1:  Asbestos is a known human carcinogen and there is no safe level of asbestos exposure.
FACT 2:  Only 55 countries have banned asbestos. The United States and Canada are the only two industrial western nations not to ban asbestos.
FACT 3:  Top 4 asbestos producers reported by USGS in 2014 are:  Russia (1,050,000), China (400,000), Brazil (291,000), Kazakhstan (240,000) *metric tons.
FACT 4:  More than 107,000 people die each year from asbestos-related diseases.
FACT 5:  While promising research continues, prevention remains the only cure for mesothelioma and other asbestos-caused diseases.
I will not die in vain. Asbestos, one day your funeral will also come, and it will be a time for rejoicing and bidding you a very hearty farewell.
Remember, there is power in unity. And with unity, we will one day see a global asbestos ban.
With Love,


Enjoy your easter break.