Last week, Elly Cohen, Ph.D. gave me an online tour of BreastCancerTrials.org. As Program Director for the site, as well as Asst Professor at the University of California San Francisco, Department of Surgery (UCSF), Elly and her team have worked hard to develop a resource for those seeking further Stage IV breast cancer treatment.
BreastCancerTrials.org was originally based on a patient idea: Since many physicians don’t discuss clinical trials with their patients, the study wanted to know whether women could self-report their breast cancer history online (age, type of cancer, pre or post menopausal, bio marker status, mets/no mets and treatment to date), and match their history with an accurate clinical trial that suited their needs?
In 2008, the nationwide personalized matching service was launched as a collaborative research project between the National Cancer Institute and UCSF in hopes of reaching women who didn’t know about clinical trials. Since then, the system has been tested, retested and refined, then tested again, and site organizers continue to respond to user suggestions. While I haven’t personally gone on this site in search of a trial, the online tour Dr. Cohen gave me seems intuitive and easy to navigate.
Because not everyone wants to do the personalized matching service, the site offers an alternative that allows you to “See All Trials” and organize research studies by zip code. Patients can see trials nearest them and read what they’re about. It also gives trial location, a map and the trial coordinator along with their email and phone number. Users can also see all newly opened trials, even if they’re far from home. Another feature allows patients to enter their type and place of metastasis, filter out all trials that don’t pertain to them, then save them to the secure site and/or email them to their oncologist. The latest version of the site was launched in March 2012 and allows users to select a “QuickView” to browse by tumor type, including Triple Negative and Inflammatory Breast Cancer and trial type.
One of the hottest trials is the “Vaccine Therapy,” designed to harness the body’s immune system. Researchers hope vaccines will be good for those whose body’s are failing to respond to other treatment. Complementary and Alternative Medicine trials are also available. While clinical trial providers are careful not to recommend any of the trials listed as the way to go, since patients can email their doctors the studies they’ve found, providers hope this will begin a much needed dialog between patient and doctor about further treatment options.
When most of us hear the term “clinical trials,” we think about treatment trials for those who have no other treatment options, however, numerous trials are also looking at quality of life issues. One of these is “cold caps,” a refrigerated unit worn on the head that constricts the flow of chemo to the scalp in hopes of lessening hair loss. Other quality of life trials involve adding treatment agents to alleviate symptoms of neuropathy, and 30-minutes of radiation during surgery to remove the cancerous tumor, as opposed to up to six weeks of daily radiation after surgery. Still other trials are psychosocial studies about the side effects of treatment on the brain.
BreastCancerTrials.org will also email you if a new trial comes online that’s a fit for you. They also have a quarterly newsletter and new weekly articles posted on their Facebook page, so you might want to “Like” their FB page.
Since many of you are looking into further treatment for Stage IV breast cancer, I hope this site will be a valuable resource for you. Please let me know what you think of the site and if you join any of their clinical trials. Wishing you all God’s blessings.
