Cameron J. Mitchell was diagnosed with a glioblastoma multiforme (or GBM, an aggressive form of brain cancer) over four years ago. The prognosis for this tumor is usually grim, as most people succumb to it within 4 to 18 months of diagnosis. However, Cameron got involved in a clinical trial for a promising new therapy and has beaten the odds. Since Revolution Health was founded partly in response to Dan Case’s battle with a GBM (and I had the opportunity to participate in the Race for Hope to benefit Accelerate Brain Cancer Cure last weekend), I thought it would be great to highlight Cameron’s story. Cameron also happens to be a close friend of one of our staff at Revolution Health.
Dr. Val: Tell me about how you were diagnosed with a brain tumor. What symptoms did you have? What led up to the diagnosis?
First of all as you can imagine getting the news is like being hit by a truck. You think, “this just can’t be happening to me.” And of course the “why me?” scenario comes into play.
My initial diagnosis came after having a bout of seizures, both grand mal and partial. After a series of tests and procedures they determined that the ongoing problem was the result of a brain tumor. The typical protocol requires 6 weeks of radiation along with oral chemotherapy followed up with a visit to your oncologist to determine a plan of action.
Dr. Val: How did you find out about the Duke clinical trial?
Being that the “plan of action” did not have a very favorable outlook I asked my oncologist, “What would you do in this case?” He suggested I contact the Duke Brain Tumor Center. He actually made the initial call. Later that night I received a call from Dr. Henry Friedman saying that they could help. By the end of the week I received a call from Dr. John Sampson telling me that he was working on a specific clinical trial. As long as I could meet some prerequisites I would be eligible to participate. A lot of thought and pondering goes into that decision: “Is it the right one?” “What if it does not work?” But at that point nothing else had been proven, so my wife and I decided that I have nothing to lose to give it a chance.
Dr. Val: What have the treatments been like for you? Do you have any advice for other patients with GBM?
The treatments are an ongoing, once a month procedure, and I travel from Michigan to North Carolina for them. So it definitely is a huge sacrifice but at for very worthy cause. Having MRIs every two months can create a lot of anxiety not knowing if the tumor is back or not.
The four main pieces of advice I could give to new GBM patients are: 1) Get as much as information as you can. Ask lots of questions. 2) Keep a positive attitude (SO IMPORTANT). 3) Keep a strong group of supporters like family, friends and especially spouse. 4) Remember that this is NOT your fault.
There are a lot of very good sites out there on the internet for advice. But one thing to keep in mind, some of them are a little outdated. The better sites allow you to ask questions.
Dr. Val: What advice do you have for family members and loved ones of those diagnosed with a GBM?
Family members must be informed about what is going on. Under absolutely no circumstances should they be left out in the cold. Most patients find out early that their spouse has at least as much (if not more) difficulty dealing with this disease as the patient.This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.