As I enter a two week break from work (school holidays) my attention always returns to my research on ULMS: Uterine Leiomyosarcoma.....AKA THE DRAGON.
I have just received this press release from my LMS forum (US - based). It does show that some organisations are working hard at trying to make a difference for those of us who are fighting the good fight in the 'rare cancers' category. In particular, the gynacological cancers and LMS will be the focus of continued clinical trials to target more effective treatments in the future. There is a bit of technical speak in the link, but if you are keen it makes for interesting reading.
I would not qualify for the specific initial trials mentioned as my tumours have metastatized outside of my uterus. I am not sure how quickly these concepts and ideas will emerge in practice in Australia.Specialists here are often informed of these developments, it is another whole matter altogether if funding is provided to support these programs becoming the "standard approach" here.. When studies obtain an international status, patients in australia gain access to these new treatments.Needless to say, it sometimes feels like we are on a slow boat to China.......
http://www.prweb.com/releases/2012/3/prweb9350570.htm
On another matter altogether, I have been keeping an eye on another form of treatment some of my fellow-LMS'ers have had access to around the world (not available in Australia!!!!!). At the outset, I acknowledge I am out of my depth here, I have no idea if I would qualify for it, even if it were available in Australia. It is called CYBERKNIFE. It is used on a range of cancers, and can successfully get rid of /or reduce tumours in some situations.
http://www.youtube.com/watch?v=3gH2zjTfojo&feature=player_embedded
I have found out that it has been mentioned in the Australian parliament recently and there is mention of a petition to get this treatment into Australia. If you are interested, and keen to support this, feel free to download the petition and get 15 signatures on it and send it in:(address on petition).
Here is the speech:
Support for CyberKnife Cancer Treatment
07-February-2012
PARLIAMENT HOUSE, CANBERRA: I rise tonight to express my support for the introduction into Australia of a new cancer treatment called CyberKnife. This is a remarkable technology that has the capacity to save or improve the lives of hundreds of people who are suffering from cancer.
In short, it provides a more targeted radiotherapy treatment so that less damage is done to non-cancerous parts of the body.
It is available in 26 other countries and should be available here, particularly at our leading cancer hospital, the Peter MacCallum Cancer Centre in Melbourne.
CyberKnife was brought to my attention by two of my constituents, Mr and Mrs Keith and Jenny Slater, who came to see me last year seeking my support for its introduction. At the time, Mr and Mrs Slater's teenage granddaughter, Kahlia, was in late stages of a rare bone cancer. They informed me of all the treatments that she had endured in Australia, but nothing was beating the wasting disease. This is when they decided to head to India, the most accessible place for Kahlia to get CyberKnife treatment.
The results were impressive. When Kahlia made the journey for her treatment in July last year, she boarded the plane in her wheelchair. When she came home, she pushed the wheelchair herself, and for the next three months she enjoyed, according to Mr and Mrs Slater, just being a normal teenager again, such was the tremendous impact of the treatment. Sadly, however, after several months the tumours grew again and she became unable to take the long journey back to India.
This brave young fighter touched the hearts of the nation in her appearance on Channel 7 late last year. The local papers followed her journey, which inspired other teens and readers across the board. Locals and fellow students at Norwood Secondary College pitched in to help raise the $80,000 needed to get Kahlia to India and pay for CyberKnife treatment.
Teen cancer patients have been called the forgotten sufferers as there is quite high awareness of the disease and programs for children and for seniors but there is less for teenagers. It is because of this that I want to bring this matter to the attention of the parliament and to press for the speedy processing of the CyberKnife application.
Mr David Speakman, Executive Director of Clinical Services at the Peter MacCallum Cancer Centre, says that CyberKnife has two important benefits above existing treatments in Australia.
First, it delivers a far more targeted radiotherapy treatment, significantly minimising the damage to non-cancerous parts of the body. Second, it enables radiotherapy to be delivered to some patients that otherwise could not receive radiotherapy, in particular younger people and some other special cases. Mr Speakman strongly endorses the CyberKnife treatment and says that it would be a valuable addition to the treatments available at the Peter MacCallum Centre. He says that current stereotactic radio surgeries using modified linear accelerators are reaching the end of their use-by date. He suggests that this new technology would only cost about $4.5million.
I am pleased that Western Australia has announced plans to purchase the technology. The leading cancer centre, Peter MacCallum in Melbourne, should also have it. As well as having the treatment available locally, it is vital for it to receive Medical Services Advisory Committee (MSAC) approval so that these oncology services can be claimed under Medicare by the people who need it most: cancer sufferers with limited resources of their own.
I am informed by the Minister for Health, who I have written to about this, that an application is currently before MSAC and is in stage 3 of an 11-stage process. Whilst I certainly uphold our system of checks and balances inherent in the MSAC process, I also want to press the urgency of pushing through this process rapidly for the benefit of the many families touched by the ravages of cancer. I note that this treatment is available in 26 other countries, including the US, UK, Canada, France, Germany, Japan, China, Italy, India, and South Korea. It is clearly not an experimental treatment but one that is widespread elsewhere. It is time we had it here.
We can never know for sure what Khalia's prospects would have been had she had CyberKnife treatment in Australia from the start, but, given the success of the treatment she had from her first trip to India, it may well have made a significant difference. Sadly, Kahlia passed away on December 20 of last year. The sparky teenager asked for pink to be worn at her funeral. Consequently, many of the hundreds who farewelled her were dressed in her favourite colour. Pink balloons floated above her pink coffin, signifying a brave and gentle spirit, who is deeply and sadly missed by her grieving family, friends and community. In her honour, Mr and Mrs Slater have vowed to fight for others in similar situations and particularly for the introduction of CyberKnife. I commend their commitment and proudly support them in their efforts. (Time expired)
The Member of Federal Parliament is Alan Tudge and he has a link to the petition on his website. Let me know how you go on this one.
Here is the petition:http://www.alantudge.com.au/Portals/0/PDFs/Cyberknife%20petition.pdf
Back to me:
With some apprehension, I am looking forward to my next Peter Mac appointment on 4 April which is basically the : WHAT NEXT consultation.
Enjoying the moments
Love Your Life,
Georgia
No comments:
Post a Comment