Sabtu, 04 April 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 clinicaltrials.gov
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.

""In light of recent circumstances the Asbestos Disease Awareness Organization (ADAO) has issued the following statement regarding Global Asbestos Awareness Week and Fundraising: The Asbestos Disease Awareness Organization (ADAO) has never, nor will ever, solicit money or fundraise during or in relation to Global Asbestos Awareness Week. ADAO maintains and supports this international collaborative week's mission to educate lawmakers, the media, and the general public about the toll of asbestos-related disease and promote legislation banning asbestos." Linda Reinstein"

http://www.asbestosdiseaseawareness.org/archives/32330
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,

HAPPY EASTER/HAPPY PASSOVER TO ALL.

Enjoy your easter break.

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