As researchers test new treatments for GBM, understanding the unique needs of patients with this diagnosis and their caregivers remains crucial.
While brain cancer remains a “vicious” disease, improvements in the field — such as new drug combinations that are being studied – are providing hope for patients with even the most aggressive form of brain cancer, glioblastoma multiforme (GBM).
When clinicians gathered in November for the 2016 Society for Neuro-Oncology (SNO) Annual Meeting, they heard news of promising results from trials exploring immunotherapies (eg, Keytruda, Opdivo and durvalumab), in patients with recurrent PD-L1-positive GBM. Another trial is testing Opdivo (nivolumab) in combination with the CTLA-4 inhibitor Yervoy (ipilumumab).
The ability to target treatments based on tumor markers represents another significant development in the field. About 80 percent of grade 2/3 gliomas and up to 5 percent of GBMs have mutations in IDH1. Promising early findings for this patient subset were reported with the investigational agent (AG-120) at the SNO meeting, where encouraging results with the antibody drug conjugate (ABT-414) for those with EGFR-amplified recurrent GBM were also shared.
This boost in research activity brings with it much-needed hope for patients with GBM, a population with multiple and complex needs.
“I’ve seen progress as far as the different treatment opportunities—absolutely,” said Sharon Bartelt, M.S.N., M.B.A., R.N., C.P.H.Q., O.C.N. Twelve years ago, standard GBM treatment was radiation plus Temodar (temozolomide). Avastin (bevacizumab) has since been added for the treatment of recurrent GBM, as has the Optune tumor treating fields system for newly diagnosed patients after surgery, chemotherapy and radiation.
“Yes, we are seeing progress, but this is a vicious tumor,” Bartelt acknowledged. “It is very aggressive when it comes back, and the prognosis is still not nearly what we would like it to be. It’s very difficult for patients to hear the statistics,” and for caregivers and nurses, it can be hard to witness the effect of this diagnosis on the patient’s quality of life.
Still, overall survival is better, noted Bartelt, and she has seen some exceptional responders in her practice. “In 2005, survival was 12-14 months, but with new treatments for recurrence of GBM, patients can survive longer — four to six months longer is seen in some cases — but the average survival is still approximately 14 months. We have patients that are two, three years— even one patient five years — out but this is the exception and very rare.”
Bartelt, a registered nurse for more than three decades, currently is a multidisciplinary planning manager and clinical navigator at the Gibbs Cancer Center & Research Institute in Spartanburg, South Carolina. In that role, she works with several treatment teams, including one focused on neuro-oncology. She provides services throughout the continuum of care, including supporting patients when they meet with their medical and radiation oncologists, answering clinical and nonclinical questions and directing patients to resources and support groups.
Overall, she said the most common adverse effect of radiation to the brain is fatigue: “Patients get very tired—typically during the fifth or sixth week of radiation. It’s cumulative.”
Bartelt encourages patients who are tired after their radiation to go home and nap and reminds them that they will usually feel better when the care team sees them (usually about three weeks after their six-week radiation course is completed). Nevertheless, brain radiation can be stressful, especially for patients who are anxious or claustrophobic. Cost of therapy is another consideration: “Patients are extremely stressed about costs—extremely,” said Bartelt.
Importantly, however, numerous patient assistance programs are available through pharmaceutical manufacturers and at her hospital to help ease this burden.
CARING FOR THE CAREGIVER
Bartelt learned firsthand what it’s like to be a caregiver for an individual with GBM when she lost her fiancé to the disease in 2006. With this disease especially, she said, “The caregiver role is critical to help patients maintain a positive attitude and ensure that they’re compliant with all of the treatment.”
However, she cautioned, the GBM caregiver role poses its own risks: “Basically, it consumes you ... it is so stressful and so tiring. It becomes your life.” She urged her nursing colleagues to encourage GBM caregivers to make time for themselves. “Caregivers need to accept help from those around them. They also need to ensure that they have some normalcy in their lives and continue to engage in activities they enjoyed before their loved one was diagnosed ... They’ll be a better caregiver for it.”
Bartelt recalled discussing her own caregiver experience with the husband of one of her GBM patients. "I asked him, ‘Do you wake up listening to her breathe at night?’ He said, yes. ‘Do you wake up when she goes to the bathroom?’ He said, yes. ‘What do you do for yourself?’ I asked. ‘I go to the gym and work, but I rush home,’ he said ... ‘I’m scared to death.’”
Given the generally poor prognosis in GBM, Bartelt said that it is also important for nurses and caregivers to encourage patients to write notes to their loved ones while they are cognitively able to do so. In the case of parents with younger children, she tells them, “This is your opportunity to tell your children what you want them to know.”
And stress, Bartelt reminded her peers, is not exclusive to patients with brain tumors and their caregivers. For nurses new to this specialty, in addition to keeping current on the treatment options and getting to know each patient individually, she urged, “You’ve got to get away from this for a little while. When you look at a new patient, see where their tumor is, it can bring back [the memories of] other patients that you’ve lost with that same tumor location.” Patients want to know survival projections for their cancer with — and without — treatment.
The difficulty of such situations is undeniable. Even so, Bartelt said, supporting these patients helps to ground her in her own life. “It gives you compassion for all patients and passion for your profession ... it makes you a better person, no matter how tragic the situation may be.”