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Patients diagnosed with cancer are often prescribed drugs they know little about, and researching the risks and benefits can be daunting, if not impossible, in the time frame a cancer patient has to work with. It's too late for one set of parents whose son died of brain cancer in 1999, but they hope to help other families with a website they launched on Jan. 1.
Michael and Rafaele Horwin's 2-year-old son Alexander http://www.ouralexander.org/ died of brain cancer in 1999 after doctors administered what they said was the best treatment available. Despite the risk of side effects including infection, heart damage, lung damage, deafness, infertility and a second cancer, just to name a few, they trusted the doctors when they said this was the best option. Alexander's cancer quickly spread through his entire body, and he died four months later. The Horwins were horrified and angry to later discover studies that showed the same chemotherapy had hastened the deaths of hundreds of other children the same age with the same brain cancer.
Had they found this research earlier, they would have made different treatment choices, the Horwins believe. They hope Cancer Monthly http://www.cancermonthly.com/, a free site they developed with friends, will help patients compare treatment options and find out whether they improved previous patients' quality of life.
"It's not rocket science," Michael Horwin said. "We take medical literature - published studies - and present it in a language that a cancer patient can understand. Now a cancer patient can compare treatment based on actual clinical results."
The Horwins are not physicians, but say their translations of scientific studies will be accurate, and the search results will provide links to abstracts of the original studies.
Becky Ellis, who lives in North Carolina, lost her 23-year-old son to brain cancer in February 1999. She met the Horwins while navigating cancer centers with her son, and has been helping the Horwins create Cancer Monthly. Ellis said she felt she needed a medical degree in order to properly research her son's treatment options.
"Cancer is a ticking time bomb -- we don't have a lot of time," Ellis said. "Everyone should have the best available information in front of them. That's why we all thought this was such an important site."
There is no dearth of cancer information on the internet. The National Library of Medicine offers PubMed http://www.ncbi.nlm.nih.gov/entrez/query.fcgi, which contains abstracts for thousands of scientific journal publications for free. But search results are cryptic unless you're a specialist in the topic of the study. The American Cancer Society http://www.cancer.org/, along with other disease organizations, says it will launch a project called patientInform http://www.patientinform.org/ in spring of 2005 to fill the patient information gap. But for now, not many sites help cancer patients determine the best treatments.
"No one is keeping score in terms of what these therapies are providing in the way of improvements in patient survival and quality of life," Horwin said. "There is no comprehensive review of the medical literature for presentation to cancer patients. There is no patient-friendly interface that allows patients to efficiently compare treatments by what matters most - survival and quality of life. This is what Cancer Monthly offers."
For example, if a patient searches on Cancer Monthly for alternative and chemotherapy breast cancer treatments in the United States, she will find that in one study performed at the Mayo Clinic involving three drugs (links are provided to drug descriptions), the median survival was 1.5 years. The results page http://cancermonthly.com/TreatmentInfo.asp?TreatmentID=235&returnURL=SearchResults%2Easp%3FSubTypeCancer%3D53%26PreferredTreatment%3D1%26PreferredTreatment%3D2%26TreatmentLocations%3D1%26Submit%3DSubmit%26CurrentSort%3D%26CurrentPage%3D also tips the reader off to a potential error in the study. The paper contradicts itself by also citing a median survival rate of 2.5 years. "The same drugs on a different schedule in the same study yielded survival of 1.1 years, suggesting that the 2.5 years is a typographical error," the site explains.
Other websites like CancerAnswers http://www.canceranswers.com/ charge $15 for information. Others, like Cancer411.org http://www.cancer411.org/ provide survival rates for specific treatments, but the patient must register and answer a lengthy questionnaire -- data the site collects for pharmaceutical companies wanting to recruit patients for clinical trials.
Cancer information found on the web can be less than reliable. Horwin said oncologists often complain that patients get questionable information from the internet. So why not allow patients access to peer-reviewed journal studies that oncologists publish and share with their colleagues? The goal is to make the patient-doctor relationship more of a partnership.
"Doctors shouldn't be afraid to tell patients the types of treatments that are out there, and patients should not be afraid to share with the doctor what they've found," Horwin said. "Out of that I'd expect to get the very best treatment, because when it comes to cancer you don't often get 345 chances, you only get one."
Newly drafted legislation could make Cancer Monthly http://www.gsk.com/ an even more valuable resource. In June, New York attorney general Eliot Spitzer charged GlaxoSmithKline http://www.gsk.com/ with concealing study data that linked the company's antidepressant Paxil with suicide in children. An investigation showed the company was holding back data, which spurred Congress to propose the Fair Access to Clinical Trials http://olpa.od.nih.gov/tracking/house_bills/session2/hr-5252.asp act.
The bill would require researchers to enter all clinical trials into a federal registry, and report the results whether they're positive or negative.
"Physicians are trying to provide good guidance to patients," Horwin said, "but only 50 percent of the information is out there."
If the bill becomes a law, the NIH would monitor and maintain the registry, and the Horwins could interpret the studies and add the information to Cancer Monthly.
"The protocol Alexander was on was never published, even though six years ago 300 children were put on it," he said. "The results were terrible, but the study itself has never been published."
Until now the Horwins have funded the project out of their own pocket with some help from friends, but they're looking for sponsors to help them with the operating costs of the site. Pharmaceutical companies or major cancer centers need not apply, Horwin said.
- "Posting Straight Facts on Cancer," Kristen Philipkoski, WiredNews.com http://www.wired.com, January 3, 2005, http://www.wired.com/news/medtech/0,1286,66130,00.html