Hi all, the last time I put an entry into my blog was a few weeks ago - so much has happened since then. - all good!
In between doses 7 and 8 we went to Tasmania for a few days of retreat/relaxation, touring and reconnecting with good friends. A wonderful weekend was spent in the little cove of Coles Bay adjacent to Freycinet National Park, Wineglass Bay and the amazing Hazzard mountain ranges. We visited the seafood farm and dined that night on scallops, oysters and prawns washed down with a glass of Tassie wines. Exploring Freycinet National Park and the various bays including Honeymoon Bay (shaped like a wine glass) was spectacular once we reached our destinations on foot and could appreciate the water views from every angle including the lighthouse walk.
While in Tasmania we both forget about our 'cancers' and just enjoy the moment and spending time with our friends. Once back to the mainland it is back to reality and endless medical appointments - all part of life atm. We went to Tassie (Tasmania) and return by the newly fitted out ferry Spirit of Tasmania overnight - great ship and very smooth crossings.
We came back for no. 8 dose 3 September with me feeling wonderfully fit apart from a bit of fluid buildup in the tummy area. A scan on 1 September showed again shrinkage of fluid and tumours (when you compare the overall scans from when I started on Keytruda there is very much significant shrinkage). A few days after no. 8 Keytruda feeling fighting fit - I started to get busy in our garden and dragging tree branches, picking up branches/twigs, pruning etc, then I started to get a nagging bone pain in the left hand hip area shooting into the back area of a radius of about 4 inches. I find it can come on at night lying down in bed or occassionally during the day. Fluid continues to be a slight problem in the tummy area HOWEVER nothing major. Bone pain can be a side effect of Keytruda and this appears to be what is happening at the moment, so Panadol osteo capsules and when needed morphine 10 or 20 mg capsules. It does not stop me from doing anything - I have quality of life back being on Keytruda, appetite still there, no oxygen needed, weight on increase, bloods all good and no blood transfusions for weeks now. Walking heaps and back enjoying life with family and friends plus walking everywhere, up until a few weeks ago all of this would not have been possible as my body was literally shutting down, on oxygen, weight depleted, bloods not making red cells, extremely weak and it was only a matter of a few days until I was at death's door SO thank you Keytruda. I am on Keytruda for life (every 3 weeks overnight in hospital for the infusion similar to chemotherapy). I call it immunotherapy as it stimulates your immune system to fight the nasty tumour cells.
Keith was diagnosed 3 years ago with prostate cancer, he had the major robotic surgery to remove the prostate gland and was fine after that. He needed to have PSA blood tests every few weeks. In the last few months it has gradually been going up, which indicates that there is still minute nasty tumour cells in the prostate area. So Keith commenced radiation in Melbourne yesterday. A total of 37 treatments Monday to Friday with the weekends off! He will finish a few days before the Asbestos Awareness International Conference run by (ASEA Asbestos Safety and Eradication Agency) in Brisbane, Queensland 22 to 24 November. We are attending and looking forward to it very much. A great informative conference last year with fabulous speakers and so much Networking information. I am speaking this year on Keytruda.
Our motto in life is to live in the moment and deal with what presents at the time. The universe will take care of the big picture - no use worrying about it!
We have lost some beautiful warriors to mesothelioma and continue to do so. Their lives have been taken early thanks to deadly asbestos greed! We must unite together to eradicate asbestos, keep raising awareness and education.
My petition to get Keytruda in Australia fast tracked on the PBS (Pharmaceutical Benefits Scheme) is making progress. I am in confidential talks atm so cannot disclose much however all are working behind the scenes. A huge thank you to all who have signed and shared the petition. Please keep doing so. This is the link to copy and paste below.
Wednesday, September 30, 2015
Friday, September 11, 2015
Mesothelioma Survivor Lou Williams Steps Up Her Drug Advocacy Efforts
Lou lost her father to mesothelioma in 1985 and she has battled the disease herself for nearly 13 years. With the help of a new drug, Keytruda, Lou’s tumors have begun shrinking and she has a new lease on life.
“Keytruda has given me back my life, as my body was literally shutting down,” Lou told MesotheliomaHelp via email.
Lou Williams, Mesothelioma Survivor
Expert Insight“I am now once again living my life with quality, strength and determination.”
On Sept. 3 Lou will have her eighth dose of Keytruda, an immunotherapy drug from Merck approved in the U.S. and Australia for melanoma, but not yet approved in either country for mesothelioma. For Australians, that means a mesothelioma patient must pay thousands of dollars per dose, administered every three weeks—a deal breaker for many.
Lou Working With Australia’s Pharmaceutical Benefits SchemeKeytruda is being touted as one of the biggest breakthroughs in mesothelioma treatment. In the simplest of explanations, Keytruda enhances the body’s immune response to cancer, allowing natural defense mechanisms to kick in and fight mesothelioma tumors. A recent U.S. clinical trial found Keytruda to be effective in controlling mesothelioma tumors in three-fourths of patients, leading researchers to say the results are “encouraging.”
After having exhausted all of her treatment options earlier this year and being at death’s door, Lou has, with regular Keytruda doses, rebounded beyond what she and others thought was possible. She said in an August 20 Examiner article that her palliative care nurse, husband and oncologist all say her recovery has been “miraculous.”
It has also been expensive. Lou acknowledged in a recent blog post that having quality of life back is priceless, but “Our credit card is taking a battering.”
To make Keytruda more accessible for other mesothelioma sufferers, Lou’s goal is to get the drug added to the Pharmaceutical Benefits Scheme (PBS). This would allow Australian oncologists to offer the treatment to mesothelioma patients free of charge or for a negligible amount.
The PBS is a government run service available to all Australian residents who hold a current Medicare card. Through the PBS, the Australian government subsidizes the cost of medicine for most medical conditions.
“We need to have Keytruda in the PBS list alongside melanoma so others diagnosed with mesothelioma can have another treatment option to discuss with their oncologist,” Lou said.
Lou and her husband met with their local Federal Member of Parliament in late July to get the PBS to accept Keytruda on the mesothelioma treatment list. She reported in her August 4 post that her local Member Parliament’s office told her that they have made initial contact with the drug company and are anticipating discussions later this month, a development Lou described as “very promising”.
Lou is passionate about seeing asbestos banned globally. Her work with the Asbestos Diseases Foundation of Australia, Asbestos Disease Awareness Organization of the U.S., and countless other organizations, as well as her non-stop media tour to get the word out about the dangers of asbestos, has impacted people worldwide.
But for Lou, it still is not enough.
“It would mean the world to me knowing that those diagnosed with mesothelioma can have freedom and peace of mind choice without the worry of cost to consider,” said Lou.
Read more about Lou on MesotheliomaHelp.
Follow Lou’s mesothelioma and advocacy battle on her blog at “Asbestos – Living with Mesothelioma in Australia – Louise (Lou) Williams.”
You can contact Lou at firstname.lastname@example.org.
Photo Credit: The Examiner
About the Author - Nancy MeredithNancy is a blog and content writer with more than 20 years of professional experience. Nancy has been writing about mesothelioma and cancer for close to five years.
Lou's petition to get Keytruda fast tracked onto the Australian PBS (Pharmaceutical Benefits Scheme/free list) for everyone with Mesothelioma to have this life saving option for free without the burden of finding funds to have this drug every 3 weeks. With your help in unity we can do this!
Please highlight link below, sign the petition and share, thank you.
Lou Williams Win News TV interview on life saving drug Keytruda. I am campaigning to have this drug fast tracked on the PBS for others with...
Lou Williams Win News TV interview on life saving drug Keytruda. I am campaigning to have this drug fast tracked on the PBS for others with mesothelioma as it has shown great promise in treating this cancer. I believe those living with mesothelioma should have the option of this drug Keytruda (in discussion with their oncologist) and not have to have the worry of finding the funds to have the infusion every three weeks. It has shown to kickstart the immune system and in turn fight the cancer cells. It has done this with me - I have peritoneal and pleural mesothelioma and was on death's door!