The Death of his first wife makes improving the Quality of Life (QoL) for patients with a brain tumor very personal for Mike Robbins, associate director of the Thomas K. Hearn Jr. Brain Tumor Research Center at Wake Forest Baptist Medical Center. Robbins knows all too well that the likely outcome when patients are diagnosed with brain tumors that are "high grade" may not always be positive.
Brain tumor cells are highly aggressive. In general, it is almost impossible to kill all of them no matter the treatment. Even when a tumor is removed, some cells are likely left behind to grow. Thus, brain tumors frequently recur, and the prognosis for patients declines with recurrence.
The median time of life may vary depending on whether the patient has a primary brain tumor, a tumor originating in the brain, or a metastases from a cancer elsewhere. But one way or another, life is often measured in months.
Decline in cognitive functions
Robbins, also knows all too well that radiation treatment, a typical way of combating brain tumors, can mean—erosion of the patient's Quality of Life (QoL). About six months or more after radiation therapy, most patients show a decline in cognitive functions.
A personal turn
Robbins' work is research intended to improve quality of life for patients who have been irradiated for brain tumors. That work took a decidedly personal turn soon after he arrived at Wake Forest in 2001 when his wife, Lucy, who had previously battled breast cancer into remission, saw the cancer return and metastasize to the brain. She had one metastasis removed surgically and was treated with a Gamma Knife for others—the Gamma Knife is a device that delivered pinpointed beams of radiation at a tumor—before eventually undergoing whole brain irradiation as the tumors multiplied.
... a little bit cold
"It's not until you live with somebody that you appreciate what it really means,'' says Robbins, a native of England with a PhD in renal physiology who while at Oxford studied the effects of radiation on the kidney. He then came with his wife to work at the University of Iowa. "In a textbook or in a paper, it's a little bit cold. …Until you see what they really go through, you don't fully understand it and appreciate it.'' Robbins says his wife, the person who always kept things together in the household, noticed she was losing her organizational skills. She was frustrated, he says, that if she failed to write something down that she'd forget it. Other times, she'd walk into a room, he says, "and suddenly say 'I don't know why I came here. Why did I come into this room to do things?'"
Treatment and research
Although Lucy Robbins died in January 2005, Robbins' research into the effects of radiation therapy on the brain continues to be a key component of work at the Hearn Center, one of just a few medical centers nationwide taking a multidisciplinary approach to brain tumors, merging research efforts meant to unlock new therapies to combat brain tumors with the latest in clinical treatments.
Brain tumor treatment varies; surgery is sometimes possible, but more common options are radiation, chemotherapy or both. Laura Hearn, wife of the former Wake Forest University president who died in 2008, five years after first being treated for a brain tumor, says the team approach taken at the center that now bears her husband's name is a good one for patients. "They have weekly meetings. And weekly reviewing of everything," she says. "And so if you talk to one of those people you know the opinions of everybody. And so I love the Wake Forest approach."
Combination of Oncology and Neurosurgery
Waldemar Debinski, M.D., director of the Hearn Center, said the combination of oncology and neurosurgery work was what attracted him to the job when he was hired in 2003. He rattles off a list of research and treatments either originating at Wake Forest or which the medical center is participating in, including: his own efforts to create a "designer protein'' intended to target and destroy malignant Glioblastoma multiforme (also called grade IV astrocytoma, or GBM) cells in the brain without harming healthy cells; a vaccine for patients with GBM to fight the cancer cells; and various experimental therapies to help reduce tumors.
Stephen Tatter, M.D., one of a handful of doctors around the country to use a new device called AutoLITT (Automated Laser Interstitial Thermal Therapy), which delivers a precise laser beam while a patient is in an MRI unit to kill otherwise inoperable tumors. The AutoLITT has a camera allowing the doctor to apply the laser beam in real time. Tatter says a lot of the problem with treatment for brain tumors – people diagnosed with GBM typically survive less than 15 months – is figuring out ways to deliver treatment, and doing so without harm to the rest of the brain. And the overall goal is to extend the life expectancy for people with either primary or metastatic brain tumors. Several high-profile patients battled GBM in recent years, including Sen. Ted Kennedy, who died in 2009, and Wall Street financier Ted Forstmann, who died in November. "When people ask 'Can this be cured?' I explain it and say it's maybe a one in 2,000 chance, one in 5,000 chance,'' Tatter says. "It's so low I don't think we should even talk about the possibility of curing it… I think that somewhere between 10 and 20 years from now, that a five-year median survival is very reasonable… I think that we should, during that time frame at least, be using the word cure and not feel guilty about it."
Collaborative Research Essential
Susan Fitzpatrick, vice president of the James S. McDonnell Foundation in St. Louis, which funds brain cancer research, says collaborative research is essential to success in an area such as brain tumors. Because of their infrequency – about 20,000 patients are diagnosed with malignant primary brain tumors a year in the U.S. – collaborative efforts have sprung up in both research and funding, as more scientific advances lead to the need for more clinical trials.
Today, no single institution typically has enough brain tumor patients to create large enough trial samples to ensure accurate results, so collaborations allow the pooling of trial results. Wake Forest Baptist Medical Center, for example, is a member of the Adult Brain Tumor Consortium, 16 institutions that now do Phase I trials for the National Cancer Institute. That consortium was an outgrowth of an earlier effort the medical center also participated in called the New Approaches to Brain Tumor Consortium. Fitzpatrick says collaboration can be difficult as funders and researchers must learn to come to consensus and respect other ways of doing things."You have to allow time for this relationship to develop, for the trust to develop, and for the confidence," she says.
Alongside clinical treatment is the research led by Robbins aimed at improving quality of life for patients who undergo radiation treatment. His work with rodents is helping to determine how radiation affects cognitive and other brain functions. The goal is to develop drugs for human patients. He and other researchers, for example, built off the discovery that anti-inflammatory drugs could help retard the so-called late effects (effects that occur six months or later) of radiation therapy. Currently, Robbins is hopes to receives grants to help start clinical trials of anti-hypertensive drugs that might be applied at the time of radiation treatment to help prevent or reduce the late cognitive effects. He also hopes that in time, because cognitive decline does not occur in all brain tumor patients who receive radiation treatment, research will be able to help doctors identify patients more susceptible to late effects.
To Robbins, addressing the side effects of therapy is crucial as his colleagues and others develop the means to increase the life expectancy of brain tumor patients, much less other cancer patients. In other words, as novel therapies to target brain tumor cells are developed, those new therapies may carry late effects for survivors, he says. "So I see that the beauty of the Brain Tumor Center of Excellence is that we are actually addressing both of those areas, and I believe we're the only group in the U.S., and maybe internationally as well, that combine the expertise."
Laura Hearn knows well the importance of post-treatment quality of life for brain tumor patients. Her husband made a complete recovery after his initial surgery, to the point that he was able to give a commencement address that year. "I don't think anybody with a debilitating disease, whether it be brain tumors or some kind of cancer, would enjoy the idea of living for a prolonged period with a compromised ability," she notes. "So of course quality of life means everything, even if it's a shorter lifetime."
Robbins knows firsthand how important it is for brain tumor patients to have a strong support network. Just three weeks in his job, his colleagues jumped right in when Lucy was diagnosed with a brain metastasis. "Every time she was ill, they were 'bang'" he says, snapping his fingers, "you bring her in and we will do something for her." He continues: "It was reassuring that we knew everybody but it was also a challenge because for them, they know you. I always felt sorry for Ed (Dr. Ed Shaw) because he looked at the scans and he knew. … She was going to die. And he had to tell us that. And that was really hard."
After Lucy's health declined sharply in late 2004, she and Robbins traveled back to their native England to visit places where she wanted her ashes to be scattered, and to visit relatives and friends a final time. In the end, Robbins says, continuing his research is rewarding, especially when he speaks to cancer patients and the community. "I can now feel comfortable standing up in front of a bunch of people and say 'I know what you're going through. I know what potentially is going to happen to you, but the great news is we can do something about that.'"
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