Ron Couture of Edmonton, Alberta was diagnosed with a brain tumour on August 28, 2003 after he had a seizure and collapsed at work and was rushed to hospital. His tumour was located at the back of his head and was deemed to be inoperable due to its proximity to where his senses were located.
One day while Ron was watching the news, he saw a feature on an upcoming clinical trial for a drug called DCA. Ron’s surgeon, with whom he had maintained open communication, called about a week later to tell him that he was a good candidate for the trial. While Ron was somewhat concerned about possible side effects, he decided to go ahead. “In some cases, clinical trials give patients hope that otherwise wouldn’t exist,” Ron explains.
Clinical trials play an important research role in the development of new treatments for patients with brain tumours. At Brain Tumour Foundation of Canada, we often receive requests for information about current clinical trials and what is involved for patients and their families in deciding whether or not to participate in these types of studies. We are able to provide information and resources to aid patients in their decision-making process and help guide them and their caregivers through the sometimes mysterious world of clinical trials.
Although many patients are interested in participating in trials that could potentially yield positive results, it is important to note that the requirements to participate in trials can be quite specific to particular demographic groups or tumour types. It is essential for these studies to maintain a narrow focus in order to be effective, and so unfortunately, only a small proportion of patients can participate at any one time.
Typically, major studies can involve thousands of patients with different cancers from hospitals across the world and take millions of dollars and many years to complete. The range in size and extent of trials is quite diverse and there are even smaller trials with a very specific focus. In all cases, receiving the proper funding and necessary government approval can be a lengthy process.
The phase two DCA clinical trial that Ron participated in is focused on malignant multi-forming glioblastomas and is currently ongoing at the University of Alberta. Being conducted by co-investigators, Dr. Evangelos Michelakis and Dr. Kenn Petruk, the trial concentrates on a drug that hopes to “boost” the function of mitochondria, the energy-producing unit within cells that regulate the energy production in the body (ie. the metabolism). According to the study, “cancer somehow suppresses the function of mitochondria and by achieving this it gains ‘eternal life.’” The researchers believe that, “the cancer cells will die when the mitochondria are ‘normalized’ or boosted by DCA. Because these effects in mitochondria occur only in cancer and not normal cells, it is believed that DCA will not have the significant side effects (hair loss, nausea, heart failure, etc.) that many standard chemotherapies have.”
The phase two DCA clinical trial is still accepting patients with glioblastomas or astrocytomas and information about the trial is available at www.depmed.ualberta.ca/dca. Exact details on the progress will not be available until the findings are published.
When asked about his experience and what advice he would provide to other patients, Ron is quick to clarify that clinical trials aren’t for everyone, that there is no magic cure, and that everyone can react to drug treatments differently. “It is important that you ensure that your team of health care professionals are aware that you are thinking about or are going on a particular clinical trial.”
For anyone interested in learning about the availability or eligibility of current trials online, there are many websites worth visiting. For instance, patients and their caregivers can visit www.clinicaltrials.gov or www.virtualtrials.com to gather more information on what is occurring with clinical trials in North America. Both of these sites include trials occurring in Canada for a variety of cancers, so searching specifically for those that relate to your specific condition is the quickest way to find out about local availability. As always, in investigating whether clinical trials are right for you, be sure to first consult with your health care team.
If you have any questions or would like to learn more, please contact Information and Support Services at Brain Tumour Foundation of Canada by telephone at 1-800-265-5106.