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In Memoriam: Sladjana (Sofi) Milenkovic Crosley, 1950 - 2009
If you ever knew, or were helped by, Sladjana (Sofi) and have not already done so, please make even a small donation to the research fund she established so that others might avoid a similar outcome. Simply click on the "Donate!" link to the left. Thank you!
Sladjana was born in Pirot, Yugoslavia in 1950, the daughter of Milena and Vitomir. She grew up to be Valedictorian of her high school, but not before also winning a national competition to be named "Best 14 Year Old Gymnast" of Serbia. Her parents were not big on sports, however, and used their parental persuasion to convince her to get a college degree. With the help of a full academic scholarship Sladjana completed her Bachelor of Science degree in Chemical Engineering at Belgrade University. After graduation, Sladjana moved to Buffalo, NY (USA) where she landed a job with Union Carbide as a chemist where, as she said, she didn't have to know much English because chemistry is universal. She learned English with the help of a fellow chemist, who conversed with her in Russian, a language they had in common. Eventually, Sladjana migrated to Oak Ridge, TN (USA), where she was employed by Lockheed Martin at the US Department of Energy Oak Ridge Nuclear Laboratory. She became a Project Manager, leading nationwide research into treatment technologies for hazardous waste. In 1997, she migrated to Dunedin, NZ, where (along with her husband) they established a company offering environmental consulting services and software. In 2004, following her 3rd recurrence of GCT, and being offered only the same old toxic platins and taxanes, she decided there needed to be more research directed at GCT which could lead to development of more targeted therapies. Thus was born, the Granulosa Cell Tumour Foundation New Zealand. When starting up the Foundation, she was concerned about being able to maintain a sense of privacy about her own health issues. Using the name Sofi turned out to be good cover for her in that sense. It is difficult to be out front, leading a campaign, and maintain privacy at the same time. Because of her own desire to remain private, she also respected everyone else's privacy and would never, knowingly, share personal information about any of the Foundation supporters. Sladjana's pursuit, both personal and on behalf of the Foundation, took her around the world looking for researchers and doctors that had an interest, or a discovery, that might reveal the secret "key" to defeating GCT. That led, more than once, to her trying drugs almost straight out of the lab, or entering Phase 1 clinical trials for which no track record could exist. Several times she thought she had found the "Holy Grail", including drugs such as Phenoxodiol, Velcade, Sorafenib, and Sunitinib. Her ultimate belief was that the answer lies in the lab. But, in the end, she was not able to combat side-effects with a system that had been weakened by the extended series of treatments she experienced. So we, at the Foundation, are left with a huge void from many respects. To find another Sladjana (or Sofi) is close to impossible, but we will continue working to achieve her objective. Sladjana is survived by her husband, her mother and sister, and two daughters. Memorial donations for Sladjana may be made by clicking on the "Donations!" link, with 100% of proceeds going into the research fund. Vol. 21 - Auckland, New Zealand Kia Ora! Dear Members, Friends and Supporters of the GCTF NZ Foundation; We have a pretty busy report this issue with several topics of interest as we begin our 5th year of existence working for solutions to our common enemy. First, one of the reasons this issue was a bit later than anticipated was that we wanted to highlight a presentation made by Roseanne Rosario, who is one of the researchers working with Dr. Shelling on our GCT research. Having just completed that presentation last week we are excited to report on it to you. Second, we evaluate some disturbing statistics about GCT that should motivate us all to do as much as we can to make sure our research on this disease continues. Third, we analyse the meaning of a recent journal article that highlights a general problem we face when we try to help ourselves through the use of health supplements. It turns out that what is in the jar may not be everything we were hoping, much less paying, for. Fourth, we present a shocking revelation about potential problems with 25 years worth of breast cancer research and discuss whether we should have any concerns about our own research. Finally, we close with some general foundation items. | ||
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GCT is a Tumour of Low Malignant Potential -- Not Necessarily! One of the most common descriptions of GCT in the medical community is: "Granulosa cell tumor of the ovary is an uncommon tumor of low malignant potential." (Source: "Characteristic Pattern of Genetic Aberrations in Ovarian Granulosa Cell Tumors", Mod Pathol 2002;15(9):951–957) and many articles add that GCT has a "low rate of recurrence". If we look for a definition of "low malignant potential" we are likely to find something like: "Malignant tumors that are not likely to invade or spread; aka: borderline." (Source: "Cancer Dictionary" ) Often this is told to us as something that should be a comforting factor, implying that we do not have to worry that much about recurrence or dying of the disease. Therefore we have been surprised by our literature research which has revealed several articles stating that 50% - 80% of women with recurrent GCT will die from the disease. One important mitigating aspect of thses articles, however, is that this is measured over a time period of 20 years or more. But still, dying of the disease is still dying, when ever it occurs. If we look at these mortality rates and re-assess what the GCTF Case History Database reveals we develop a very strong sense of urgency regarding the search for effective therapeutics. That is because, based on the GCTF database, the recurrence rate for GCT could be in the 45% - 60% range and that is not a "low rate of recurrence". So the risk of recurrence with GCT could be significant (and higher than generally stated), and the mortality rate with recurrent GCT could be substantial. That is why we are desperately trying to fund research! | ||
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The Problem With Supplements On a different topic, there is a lot of press about using health supplements to obtain the benefits of many different natural substances that may help us feel better, at least, or help fight our cancer, at best. And there is much to be said for the idea of natural supplements helping us in our fight since so many of the drugs that are used these days to fight cancer have their origin in natural substances. When these press releases quote medical journal articles, therefore, the claims of the manufacturers of these supplements often take on added validity and many of us end up paying good money for products that we hope will give us the benefit they claim. As an example, let's consider the case of feverfew which is a natural plant that contains an active ingredient called parthenolide. Parthenolide has long been touted as a treatment for migraines and other general ailments. It has also been identified as a substance that may inhibit a key molecular pathway (Nuclear Factor kappa-B) which could, in turn, assist in restoring apoptosis (programmed cell death) in several cancers, including GCT. Since feverfew is natural, with little side-effect, who wouldn't want to consider using it to help fight your disease? The problem is in knowing how much parthenolide is in a feverfew capsule, how well is it absorbed into your bloodstream, and how much do you need to take. An August, 2007 article in the journal "Dissolution Technologies" provided a comparative analysis of 5 different commercially available feverfew products (although they were not named). The most troubling aspect of the article was that out of the 5 products tested, none contained more than 50% of the parthenolide that was advertised, 1 had only 25%, and 1 had 0% of the parthenolide! So what are we to do as consumers? Well you might want to ask your supplier for data on the dissolution performance of their product. Be prepared, however, for either a blank stare, or a statement about how that data isn't available. We did that, here in NZ, for a product called "Mygrafew" marketed by a company called The Natural Health Company, Ltd. We specifically asked as to whether there was any data on serum blood levels of parthenolide using their recommended dosage (in other words is any parthenolide actually getting into your system), and whether there was any dissolution data about their pills. Their representative was very understanding of our stated concerns and sent our request for detailed analysis up the chain to the US-based manufacturer, Nature's Way. We included information on both the article in Dissolution Technologies, and a medical journal article which reports that parthenolide may re-sensitise hormone resistant cancer (which would represent one possible reason we are interested in the substance). Unfortunately, we never received a direct response on our questions, even though the local representative tried several times to elevate the issue. That, of course, leaves us to wonder whether they a) don't have the information; b) don't want us to know; or c) or don't really care. Since we are limited in terms of what we can do about situations like this, it may be best to simply be forewarned that we may not be getting what we think we are paying for when dealing with health supplements. | ||
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How Did This Happen? In September, 2008, some shocking news hit the wires stating that a breast cancer cell-line, that has been the foundation of more than 650 research projects over the last 25 years, may not be breast cancer after all. (The link requires a free registration) With so much cancer research, including the research we have commissioned, depending on the use of cell lines to establish initial theories and direction, we were immediately concerned over the validity of COV434 and KGN, which are the 2 primary cell lines for GCT research both here in Auckland and around the world. We quickly made enquiries with both Dr. Shelling and Dr. Fuller (Prince Henry's Institute for Medical Reseach) as to their confidence that the 2 cell lines were what they are represented to be, namely immortalised samples of GCT. Both Dr. Shelling and Dr. Fuller responded by stating that their analysis of the overall genetic makeup and expression of both cell lines leads them to believe, with full confidence, that the cell lines are what they claim to be. Whew! While there are obvious limitations with interpreting too much from cell line research they still are the best way to start a new line (no pun intended) of investigation. Fortunately, for us, we can still have confidence in what comes out based on research utilising COV434 and KGN! | ||
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Et Cetera We have just updated our "Jewels for Research" web pages, designed to make your shopping experience easier! When you browse the catalogues there is now a better view of each item you care to look at, an immediate list of what is in your shopping cart, and a more concise checkout process. So have a look, plan your "Jewels for Research" party, and enjoy! (Since the changes are new, please let us know if you have any problems with the process, we may have missed a bug in the software!) As hard as it is to believe it, we are actually inside the last 75 days of 2008! That, of course, means that many of us are starting to plan for the holidays, and possibly getting shopping lists in order. If your on-line shopping is going to include one of Amazon.com's sites, please remember to utilise a link from our site (and save it as a Bookmark called 'Amazon'). As we have reported above, our researchers have made great strides this year but the funding we have been able to generate will not get us all the way home! Absolutely every dollar we can raise, whether Jewels for Research, Donations, or Amazon.com, is crucial to helping us move closer to identifying a more effective way to treat this disease. So don't be shy, recommend our links to your friends and family also. Amazon is going to do a good business over the next 75 days, no doubt, and with your help we can benefit a bit from that also. Thanks for your support! Sofi Managing Director |
We are not able to provide medical advice or offer cancer specialist referrals
