A new approach to treating Gynacological cancers & all about CYBERKNIFE

Hi all,
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.

I am feeling OK, just a bit stiff and sore, usually in the late afternoon and evening. I seem to feel it more when I am not at work- how weird!

Enjoying the moments
Love Your Life,
Georgia

21 March: Not such a great day today at Peter Mac Hospital

I am sad today as I have received some unexpected news. I was called in for an early appointment, it was brought forward from the 28 March to today, 21 March. My Specialist wanted to discuss some of the issues I have been experiencing over the past 3 weeks. My health has not neen ideal and my pain levels have shifted into a new category. From time to time I have experenced tightness, but  more recently I have begun to use some basic pain killers. I had related this all to the effects of the Gastro and the UTI, but the specialist believes that it is only a partial explanation.

Based on preliminary examination of my CT scan yesterday, 20 March, it appears that the tumours are on the move again and that it is time for me to look at my next treatment regime. Again, a team from a variety of hospitals will discuss the best fit for the next round of treatment.

Over the next fortnight, they will investigate if the US drug can be obtained for me on compassionate grounds. It is called Pazopanib. This can be taken orally morning and night and may be a better next step, rather than go back to Chemotherapy straight away.

The next chemotherapy drug based on standard treatments in Australia is called Ifosfamide. This is a 'cousin' of the trial drug Palifosfamide that I may have already been given in the Trial. If that is the case, and I will never know, it may not have much extra benefit......

So, while this is happening, I will wait until the Sarcoma Nurse from Peter Mac contacts me to inform me about progress in obtaining this new tablet. My next appointment is now on 4 April at Peter Mac. They are keen to start me on the next treatment as soon as possible, and I also may be moving from Peter Mac back to the Mercy Hospital for Women where my journey began last year.

Ok, it's time to regroup, rethink, get my emotions sorted and move forward. Lots of emotion today, but I am OK, just unhinged and surprised, dismayed and disappointed.

I am having a beautiful glass of Pinot tonight please join me if you can,

Cheers,
Georgia

PS   Here is some info on PAZOPANIB:

Pazopanib Shows 3-Fold Improvement in Progression-Free Survival
Oncology & Biotech News
Published Online: Thursday, August 4th, 2011
Winette T. A. van der Graaf, MD, PhD

Data from a randomized clinical trial showed that patients with anthracycline-treated sarcomas had a 3-fold improvement in progression-free survival (PFS) with antiangiogenic agent pazopanib versus placebo.
Pazopanib treatment was associated with a median PFS of 4.6 months versus 1.5 months in the placebo group. The difference translated into a 69% reduction in the hazard for progression, as reported at last month’s ASCO meeting in Chicago.
“We may now conclude that, after decades of chemotherapy, we finally have a new drug for our patients with soft-tissue sarcomas,” said Winette T. A. van der Graaf, MD, PhD, a medical oncologist at Radboud University Nijmegen Medical Center in the Netherlands. “I think pazopanib can be added to the palette of potentially active drugs. It is also important that this benefit is not restricted to rare sarcomas but has been shown to be effective in more common types of sarcomas.”
The findings came from the international multicenter phase III PALETTE trial involving patients with soft-tissue sarcomas, including leiomyosarcoma, synovial sarcoma, and fibrohistiocytic and fibroblastic sarcomas. Much of the basis for the trial came from a phase II study of pazopanib, which showed a 12-week progression-free rate of 40% to 50% in patients with advanced soft-tissue sarcomas (J Clin Oncol. 2009;27:3127-3132).
“After decades of chemotherapy, we finally have a new drug for our patients with softtissue sarcomas.”
–Winette T. A. van der Graaf, MD, PhDPALETTE investigators at 72 centers in 13 countries enrolled patients treated with as many as 4 prior chemotherapy regimens, and all patients had prior anthracycline exposure but no prior treatment with antiangiogenesis agents. Patients were randomized 2:1 to pazopanib 800 mg/day or placebo and followed until progression, unacceptable toxicity, withdrawal of consent, or death. The primary endpoint was PFS, and secondary endpoints were overall survival, overall response rate, quality of life, and safety.
The final analysis included 369 randomized patients. The trial ended November 2010 with a median follow-up of 15 months.
Leiomyosarcoma accounted for more than 40% of the tumors, and about 70% of the patients had high-grade tumors at diagnosis. Aside from the required anthracycline exposure, the patients’ treatment history most often included ifosfamide (>70%), gemcitabine (35%), and docetaxel (30%). A majority of patients had received more than 2 lines of chemotherapy for advanced disease.
Analysis of the primary endpoint demonstrates a significant advantage in favor of pazopanib (P <.0001). The benefit was consistent across the 3 major histologic strata (leiomyosarcoma, synovial, and other), associated with hazard ratios of 0.19 to 0.36, all of which achieved statistical significance (P = .0002 to P <.0001).
The interim analysis of overall survival showed no significant difference between treatment groups, as the pazopanib arm had a median overall survival of 11.9 months compared with 10.4 months in the placebo group (P = .1782). van der Graaf said the final analysis of overall survival will occur before the end of the year.
Table. Best Overall Response
 Pazopanib
n = 239Placebo
n = 123
Partial response14 (6%)0 (0%)
Stable disease164 (67%)47 (38%)
Clinical benefit73%38%
Adapted from van der Graaf et al. J Clin Oncol. 2011;29(suppl; abstr LBA10002).Best overall response in the pazopanib arm included partial responses in 6% of patients and stable disease in 67%, resulting in a clinical benefit rate of 73%. In contrast, no patient in the placebo arm had an objective response, and 38% had stable disease (Table).
The median treatment duration was 16.4 months in the pazopanib arm and 8.1 months in the placebo group. Half of patients in the pazopanib group required treatment interruptions, and 37% had dose reductions. Nonetheless, the dose intensity was 96.3%.
Adverse events most commonly associated with pazopanib treatment included fatigue (65%), diarrhea (58%), nausea (54%), weight loss (48%), hypertension (41%), and anorexia (40%). Grade 3/4 adverse events were infrequent.
Some patients in the pazopanib arm had liver enzyme abnormalities, which were expected. The most common grade 3/4 liver events involved gamma-GT (12%). The abnormalities were reversible in all cases.
“With adequate monitoring and timely interventions, adverse events are manageable,” said van der Graaf.

--------------------------------------------------------------------------------
van der Graaf WT, Blay J, Chawla SP, et al. PALLETTE: a randomized, double-blind, phase III trial of pazopanib versus placebo in patients with soft-tissue sarcoma whose disease has progressed during or following prior chemotherapy—An EORTC STBSG Global Network Study (EORTC 62072). J Clin Oncol. 2011;29(suppl; abstr LBA10002).

LMS Article

Hi,
I came across this article at one of the LMS group sites that I am a member of. It is very inspirational, as I am in a similar category to Coco.

I hope you find it as encouraging as I have.

http://www.herald-mail.com/news/hm-smithsburg-woman-focuses-on-the-positives-as-she-battles-rare-uterine-cancer-20120309,0,2948422.story

On another note, I am due for my 8 weekly CT scan this Tuesday 20 March. I will probably have a few more tests done as I think I may have an infection at the moment. I am experiencing pain in my abdomen for the first time since surgery  (May 2011). I am hoping this is due to an infection, perhaps related to my hospital visit (check last blog entry!), rather than active tumour growth.

As always, the follow-up specialist appointment will take place on Wednesday 28 March. We are praying for another small miracle; no tumour growth would be phenomenal. Another 8 weeks reprieve would be another small celebration in my life journey.

I continue to work full-time, but have taken medical days as required. I believe I am better off physically and mentally working rather than not. It is the best fit for me psychologically right now. I am as well as I am going to be and I will not let it go as long as I am fit and well. I am pacing myself, and am aware of my limitations.

As always, I will let you know how I go with the next CT scan,

Love your life,
Georgia