Special Headgear Part of Treatment Offering Extended Life for Brain Cancer Patients

PEORIA (25 NEWS) - The American Cancer Society offered the news Jan. 8, that we recently (2016-2017) saw the largest single-year drop in cancer-related deaths and a 29% decline in the mortality rate between 1991 and 2017.

Scientific American has called glioblastoma “the deadliest human cancer” that usually only allows a patient to continue for 12-15 months after diagnosis.

But there are ways to survive beyond expectations.

One couple in DeWitt County meets in the kitchen of their home in Clinton, IL several times a week.

They place a special headgear into place that will slow the growth of the deadly tumors inside Norman Emery’s head.

For Rachel and Norman, that has been their routine, several times a week, since July of 2017.

He’s been wearing the headgear and the battery powered data recorder, along with the wires connected to the receivers stuck to his scalp for 2-3 days at a time, 24 hours a day.

Usually used in conjunction with other medicines,(radiation and chemotherapy) the Emery’s feel the Optune device is a big part of the reason Norman is still alive, well beyond what’s considered typical GBM, as it’s known by affected families.

“I’m like, ‘Do I need gloves? Do I need a mask? Is this a sterile procedure?’ You know, it really was intimidating,’” Rachel Emery said. “And I was very nervous. And it probably took me :30 minutes every time to apply it because I was so worried. I feel like we have GBM, in some ways. I know that sounds really weird but, it’s so much affecting me on every level, that for me not to be a part his care giving…like, I wouldn’t want else to come in and do this so that I wouldn’t have to.”

The Central Brain Tumor Registry of the U.S. (CBTRUS) expected 25,510 malignant brain tumors to be discovered nationwide in 2019.

The numbers also show that glioblastoma is the top threat in that category.

For Norman’s age group, 45 to 54, only 8% of glio patients will survive for 5 years. He is 52.

“If you get hung up on why, you about can’t function. I’m more into how,” Rachel Emery said. “You know, how do we want to do this? How do we want to live through this in a way that, hopefully, helps someone else? That sets an example for our kids about how to face suffering and trials?”

They have six kids, including Naomi, with special needs.

She turns 8 in July.

The Optune device constantly issues electrical pulses or fields, preventing the glio cancer cells from lining up and dividing, which is their mechanism for growth.

They tend to take down every patient they face, quickly. Unless they can be slowed.

In December they learned that after three surgeries, there were 2 new tumors underneath his scalp.

Norman may only have 6 months left to live.

“Just a motto; you can either sit on the curb and cry or pick yourself up by the bootstraps and get moving. And that’s what I did,” Norman said.

Three years ago, some doctors were skeptical of Optune, as Rachel recounts what they heard before trying it out.

“”The prognosis for GBM is not very long and so, do you really want to do this for a few months, maybe, of extra time?’ And I’m going, you give us 24 extra hours, we’ll take it!” Rachel said.

Norman’s doctor in Chicago, Dr. Karan Dixit at Northwestern Medicine, tells me it has helped extend Norman’s lifespan but adds that it only became a part of what they consider the standard of care in 2018.

After six weeks on a different therapy, Norman’s balance was off and he occasionally failed to complete a sentence.

He decided that other mode of therapy had to go.

“This is my final chance to, to…my final run. I want to hit it with everything I got. So, it was my own choice to start the Optune again,” Emery said.

And he’s back playing in the band at church on Sundays now, praying for more time.

“If you don’t have hope, if you just kind of give in you’re probably going to have a shorter lifespan,” Emery said.

Norman says they feel blessed to have good insurance coverage, having joined in the U.S. Army in 1986, then the National Guard and is now a retired Lt. Colonel.

He’d been working at the DeWitt County jail as a corrections officer when glio changed his course.

If you or someone you know in our viewing area is battling Glioblastoma, please email us at: gliotracker@week.com as we try to better quantify this threat in Central Illinois.

Norman was one of the first respondents to do so.

And he’s not done fighting. Norman plans to attend his 35th Peoria High School reunion in September.

He’s also planning a trip to Costa Rica in 2021.

His Neuro-oncologist Dr. Karan Dixit at Northwestern Medical group sees promise in the headgear.

“Will it ultimately cure the disease? No. But nothing we’ve tried so far has done that. So, that’s why we have to walk before we run. I think this is going to be a treatment we’re going to use in perpetuity, you know. Unless we find something better,” Dixit said.

His supervisor, Dr. Roger Stupp, tells 25News that the two year survival rate within patients at his group is now 33%-43%, a huge increase over what he estimates was only 10% just a decade ago.

He too feels Optune, in conjunction with new chemo and radiation therapy, is the biggest reason for that marked increase.

But it’s not a universal feeling.

Dr. Charles Rosen is another brain tumor specialist at Central Illinois Neuro Health Sciences in Bloomington.

He says very few of his patients, maybe 10, have looked into the Optune with only a handful trying it.

He feels the device hasn’t been quite as effective, citing clinical trial results that have been inconclusive, as well as skin irritation and quality of life impediments as reasons his patients have not been quite as receptive.

Dr. Rosen believes new chemo therapy drugs are the real hope, going forward.

He now sees glio patients living an average of one year after diagnosis, versus nine months before Temodar, also known as temozolomide, showed promise in clinical trials published in 2016.