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Roswell brain cancer team works together on treatment, including promising vaccine

Kathleen Mogensen was one of five nurse practitioners when she started work at Roswell Park Cancer Institute a little more than 20 years ago.

Today there are 64.

As is the case with her peers, Mogensen works closely with doctors, nurses and other health professionals who are fighting cancer and doing the best they can for patients in a variety of ways.

As the nurse practitioner in the neuro-oncology treatment, that means treating people with brain tumors, many of whom pass away within two years of diagnosis.

The fight to manage symptoms, extend life and improve the quality of life is intense.

“We realize what an incredible life change they’re going through. One minute, they’re totally fine and the next minute, it’s never going to be the same,” said Mogensen, subject of this weekend’s In the Field feature in WNY Refresh.

Mogensen’s boss – Dr. Laszlo Mechtler, chief of neuro-oncology at Roswell – has encouraged her from the start to attend scholarly conferences and widen her network of resources to include doctors and nurses from around the world.

She has helped with more than a dozen scholarly articles involving brain cancer treatment, conducted dozens more workshop presentations, and is part of a team that will soon start the second phase of a clinical trial on SurVaxM, a cancer treatment vaccine developed at Roswell by Dr. Robert Fenstermaker, chairman of the Department of Neurosurgery and Director of the Neuro-Oncology Program.

This is a therapeutic vaccine, not a preventative one, said Annie Deck-Miller, a Roswell spokeswoman.

The vaccine disrupts a specific protein, survivin, which spurs cancerous cell growth in patients with glioblastoma, the most lethal of brain cancers.

Phase one of the trial involved nine patients at the Buffalo hospital and showed the vaccine disrupted cancer growth, Mogensen said, but much more study is needed before the U.S. Food and Drug Administration would approve it for wider use.

The findings were presented last month at the American Association for Cancer Research Annual Meeting in Philadelphia.

“SurVaxM is on the forefront of the next generation of cancer therapy. By harnessing the body’s own immune system to fight cancer using immunotherapy, we believe we can give hope to patients diagnosed with malignant gliomas and other cancers,” said the study’s first author, Michael Ciesielski, assistant professor of oncology in the Department of Neurosurgery at Roswell.

Fenstermaker called the first phase “the critical first step for the survivin vaccine, to show its safety for use in humans. Through this process we also confirmed that the vaccine produces a strong immune response and gave us a signal of potential clinical responses.”

The first phase of the trial showed the drug was well tolerated, Mogensen said. “We had no significant side-effects.”

Phase two will examine a larger number of patients to see if the vaccine improves treatment response, she said, and a third phase of research also will be needed if the second phase is deemed promising.

“It’s a slow process, step-by-step, for patient protection,” she said. “It’s very highly regulated."

Below are other excerpts of my interview with Mogensen that were not in the print story:

Q. Do you think that behind every good nurse practitioner is good doctor?

Or behind every good doctor is a nurse practitioner? It's symbiotic. Dr. Mechtler and I have worked together for a very long time, where we can almost read each other’s minds. He is focused on getting survival as long as we can but meanwhile, let’s make the time that’s left the best as possible. Let’s do what we can day-to-day.

Q. What role do each of you play?

When a patient comes in, there’s a list. If a patient is having problems, they can go in and see Dr. Mechtler but they don’t have to. They may come, they’re getting their chemo and everything’s stable – they don’t need see him. It may be emotional or treatment-related issues. If they need him, he’s there. If there’s tumor progression and we need to change treatment, that’s always discussed with him or he’s asked to come in. ... I may start with a patient and ask him to come in.

Q. Are there times he might ask you to come in?

Absolutely. There’s so many issues. I have a booklet for new patients that has answers to questions they don’t even have yet. It has all the contact phone numbers. It has tons of websites, areas of additional information: what to do about work, what to do about helping yourself. The more teaching I can possibly do, the better. The more patients know, the more they’re empowered and the better they’ll do.  Often during the process, we’ll see the same patients and say the same things. We’re reinforcing things with patients.

We’re telling patients we’re going to throw everything at their cancer that we can. At the same time, we’re telling them, “You’re getting six weeks of chemo and radiation, then four weeks of no treatment. You should plan a vacation then.” We tell them that the first day we meet them.

Q. How does somebody learn to do the things you’ve done?

I’m a nurse. That’s the role. If someone’s loved one passes away and you’re holding their hand listening to them, giving them a shoulder to cry on, I don’t know where you learn that. That just is. The symptom management has been experience over time. The trend right now is for evidence-based guidelines: Is there evidence for what you’re doing. I worked with a project to develop evidence-based guidelines for nursing for the treatment of brain tumors. And I did the symptom management part of that. It’s available on the Neuroscience Nursing website but it also is available on the national evidence based guidelines clearing house. That was an extension of what I do. It was work, but as I’m doing that project, I’m reviewing everything out there on the treatment of seizures in brain cancer patients, so I’m updating myself at the same time. So it feeds into each other. These roles overlap.

If you look at nursing, they will talk about patient care, education and research. That’s my job.

I don’t know where our patients see much of a difference (between nurse practitioners and doctors). Where it becomes more complicated, it’s Dr. Mechtler’s decision. He’s also a neuro-imager, so if there’s questions about the MRI, it’s his decision. If somebody’s doing well, they’re not going to notice much difference.

Q. Do you see a greater acceptance now than when you were one of the first ones around?

Huge. Huge. What helped me when I started in Dr. (Edward) Stelik’s office (about 30 years ago) was a medical assistant. The doctor was well, well loved, so when they heard he wasn’t coming into the room first, this assistant would say, “ Just give her a chance. He’s coming in and will talk to you, but just give her a chance.” She really was positive and paved the way. Patients had no clue. They had never heard of nurse practitioners. They had no idea what I could do. I had to show them on a case-by-case basis. Now, I don’t have to explain what a nurse practitioner does. Everybody has seen one.

When I started at Roswell, I was one of the first five. They weren’t quite sure what I could do, either. Now, there isn’t a single clinic in this hospital that runs without a nurse practitioner. We are treated on an even basis.

Q. Can you talk about your master’s project, “A Study of Stressful Life Events and Social Support in People Who Develop Cancer?” What did you conclude?

When I was doing my master’s, I was working on a GYN surgical floor with many surgical oncology patients. There were patients younger than I expected, patients in their 30s and 40s diagnosed with cancer. Talking with them, they had had some incredible life-changing events. One was a full-time mom and walked in to a note on the counter, “I’m done, mortgage is paid for three months, see ya.” Someone else had nursed her mom through a terminal illness. It just kind of hit me that these were really rough events. Did that impact the immune system somehow to allow some of those tumor cells to sneak through? My advisor said, “OK, this happens to a lot of people, but is the impact greater when people don’t have a lot of support?” We did see a higher incidence. Now it’s a generally known fact that stress can impact the immune system.

Q. What would you like people to know about what patients, their families and the Roswell staff go through in your unit?

We realize how stressful it can be to walk through the doors at Roswell for the first time because you’re admitting, “I have cancer.” We’re trying to help people through that process whatever way we can. ... You’ve got a scary disease, but we can bring you to a place that’s going to be comfortable. We do as much as we can for a patient’s symptom management. We also need to look out for each other because it’s tough. We lose battles. I need that outlet (as a downhill skier). We need to learn how to deal with it. As Dr. Mechtler tells me, “You’ve got 3 minutes to have your breakdown. The next patient deserves your full attention and your full energy.”

If I’ve improved somebody’s quality of life, if I’ve given them better time, it’s a victory.

email: refresh@buffnews.com

Twitter: @BNrefresh

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