Stories from the Brain Cancer Community

 

A VACCINE IS ON THE WAY

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It’s vaccine season at Swedish. While our caregivers are busy inoculating the public against COVID-19, our team at The Ben & Catherine Ivy Center for Advanced Brain Tumor Treatment is preparing to study an experimental vaccine for patients with glioblastoma. This vital research continued despite the pandemic thanks to your support of the Seattle Brain Cancer Walk. 

We caught up with Charles Cobbs, M.D., the Gregory Foltz, M.D., Endowed Director of The Ivy Center, to find out more about how it could upend the way we treat this aggressive form of cancer, and how your support makes innovative treatments possible. 

What can you tell us about this new vaccine?

We are working with a researcher at another organization who has developed a panel of T-cells, or immune cells that can be made into a vaccine. The T-cells attack cytomegalovirus, or CMV, the virus found in many cases of glioblastoma, a very aggressive brain cancer. His preliminary evidence suggests that the vaccine can help patients fight their cancer. That’s why we’d like to bring the next phase of the trial to Swedish within the next year or two.    

Since vaccines are on our mind right now, can you explain how this vaccine for glioblastoma might work as compared to COVID-19 vaccines?

The current Pfizer and Moderna COVID-19 vaccines use mRNA to teach your immune system, including T-cells, to go after the coronavirus. The problem is that patients with glioblastoma often have inherently poor immune function as a result of their tumor compared to healthy people. So their own T-cells are not able to work against CMV, even with good instructions. 

This new vaccine for glioblastoma contains T-cells from donors that are distilled into a series of injections. When a patient comes along with a glioblastoma, we can match the T-cells in the vaccine to their immune system. 

How is the glioblastoma vaccine made?

Most people who get CMV recover fully, and their immune system is primed to fight another infection. It’s only a small percentage who go on to develop brain cancer, but healthy donors can provide a trained team of T-cells in a process similar to donating blood. 

In a petri dish, the donor T-cells are mixed with additional CMV proteins as well as cytokines, which are drugs that make the T-cells react and get better at fighting the virus. The resulting T-cells are supercharged and able to work in place of the patient’s non-functioning immune system to attack infected tumor cells.

 How have patients responded to similar glioblastoma vaccine trials at other institutions?

We have some preliminary evidence that patients with recurrent glioblastoma live longer with the vaccine. And it seems to be that their survival is related to the amount of T-cells and how well they are functioning. Further trials at Swedish will help us better understand how to make the best possible vaccine, while offering patients a treatment that could extend their life. 

Could a vaccine be a cure for glioblastoma?

I’ve seen patients with glioblastoma who had a huge immune response against CMV which resulted in their tumor literally disappearing. It's a rare thing, but I think that it’s got the potential to help other patients. The problem is that these tumors suppress the immune system so that the patient’s own T-cells don’t function. That’s why we think a vaccine that replenishes the supply of healthy T-cells can help patients fight their cancer. 

Has this changed your plan to develop your own vaccine for glioblastoma?

No, we are going to continue our research to develop a vaccine tailored to work against the exact strain or strains of CMV that accelerate glioblastoma growth. But since there is clinical evidence from other centers like Duke University that the T-cell vaccine works, I think we're going to continue developing our vaccine in parallel with trials of the existing vaccine. That way, patients will have access to these kinds of treatments sooner, while we work on fine-tuning our own vaccine. 

How has the COVID-19 pandemic affected research at The Ivy Center?

Last spring, our research had to slow down to comply with public health regulations. It was frustrating, but our researchers found ways to keep working on projects from home. Within a few months, we were all back in the lab with safety precautions in place. 

COVID is a horrific, world-wide problem that has unfortunately affected all kinds of research. I hope that one year from now we will have vaccinated a majority of the United States and the world's population and put the pandemic behind us. But brain cancer will still be affecting families in our community and around the world. It's a disease that seems to hit young, healthy people in the prime of their lives. So it's something we still need to go after full force. And with the community’s support, my colleagues and I can keep doing just that. 

Innovative research at The Ivy Center is made possible thanks to your support of the Seattle Brain Cancer Walk. To learn more about brain cancer research at Swedish, contact Philanthropy Director Mallory Higgins at 206-386-6108 or mallory.higgins@swedish.org. 

Save the date for the 2021 virtual Seattle Brain Cancer Walk on Sun., May 2, 2021. To learn more and to register, visit www.braincancerwalk.org.



THE X FACTOR


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Time is a confounding variable in the search for glioblastoma treatments. The goal is to give patients more of it, but the research requires an inordinate amount. That’s what makes the next phase of Dr. Parvinder Hothi’s research so exciting. While in the past she had to wait for a patient’s tumor to recur before administering their personalized drug cocktail, now she’s able to begin this targeted treatment right away. 

But we can’t do it without you. 

We can’t do it without Dr. Hothi, either. With a mix of determination, resourcefulness and patience, she’s uniquely skilled to navigate the temporal challenges of glioblastoma research. 

Read more about what drives her and the importance of giving women a seat at the research table. 

 



Amanda Howes: Eighteen Years and Going Strong

Amanda Howes and FamilyPhotographer: Heleyna Holmes

In 2008, Amanda Howes was at her new home in Seattle watching the local news when something caught her attention. It was an advertisement showing trial treatments being conducted at Swedish Medical Center for glioblastoma -- the most aggressive type of brain cancer and one of the most aggressive forms of any cancer. 

“A light came on,” Amanda Howes says. “I called Swedish and got an appointment. No referral required.”

Having recently moved to the city, Amanda needed a doctor. What she got was pioneering expertise in the fight to find a cure for brain cancer from Dr. Gregory Foltz, the revered neurosurgeon and founder of the Ben and Catherine Ivy Center for Advanced Brain Tumor Treatment. Unfortunately, Dr. Foltz passed away from stage IV pancreatic cancer in 2013, but Amanda remembers him well from the time she was his patient. On her first visit with Dr. Foltz, Amanda and her husband got a tour of the lab at the Ivy Center and saw firsthand the progress and work being done to battle brain cancer. 

“It was this really cool connection with Dr. Foltz and to see behind the scenes of the work the Swedish Foundation is doing that made us feel like this was the place for us,” Amanda recalls. “We fell in love with Swedish.” 

2020  will mark 18 years since Amanda’s original diagnosis with brain cancer. On November 7, 2002 Amanda suffered a grand mal seizure before getting into her car to drive to a night class at her alma mater, Utah State University. 

“Luckily, my sister was there to call the ambulance,” Amanda says. After the cat-scan showed a mass in her brain, Amanda was taken to get an MRI. She met with a neurosurgeon who confirmed there was a brain tumor. She was later diagnosed with Grade II Astrocytoma.

On January 16, 2003 at 21 years old, Amanda experienced her first surgery in Salt Lake City, Utah.  

She believed the surgery was a success until the doctor came into the room. 

“He was very still and I could tell something wasn’t quite right,” Amanda said. The doctor didn’t feel comfortable with the amount of tumor he removed and needed to go back in.  

“He said you can either go home and heal in six months or I have an opening in four days,” Amanda remembers. 

Two surgeries. Four days apart. The recovery process was arduous. Amanda’s tumor was situated on the primary motor strip on the left side of her brain. It affected movement of the entire right side of her body. 

Amanda had to re-learn how to walk and endure serious physical therapy. 

“It took about three to four months before I was able to jog and for my body to understand,” she says. 

Through physical therapy, Amanda says she felt like she came back to life. But three years later, in the fall of 2005, the cancer returned and this time her recovery wasn’t as successful. It wasn’t until moving to Seattle in 2008 and going to Swedish where Dr. Foltz examined her brain scans, that it was discovered Amanda suffered a small stroke during her surgery three years prior. 

“A small blood vessel was the reason my body wasn’t able to respond and gain the movement back like it had after my first surgery,” Amanda says of her mobility. “I was really emotional and angry. I wasn’t able to enjoy the simple things like running, riding my bike and snowboarding, just to mention a few.”

The discovery was frustrating, Amanda says, but she was thankful Swedish could provide clarity as to why her body wasn’t responding to the physical therapy like before. 

In 2009, after going to Swedish for her check-ups and scans, Amanda was told that there had been a small growth in her tumor and her doctors recommended she be treated with chemotherapy and radiation simultaneously for six months. Thankfully, the treatment worked and Amanda has been cancer-free since 2009. 

During all the visits to the hospital, Amanda saw posters hanging up for the second annual Seattle Brain Cancer Walk and thought it was a great idea. She’s been walking every year since. 

“Having this event to represent all the survivors, including myself, and to raise awareness for the disease is super important,” Amanda says. “Getting those funds that are really important to a lot of people.” 

Her team, “We Heart Brains” is comprised of about 10 people every year. And although they might be small, Amanda says, they are mighty. Over the years, the team has raised roughly $60,000 for brain cancer research. 

“It always brings tears to my eyes to see how so many people year after year support me,” Amanda says, “They really do care about the goal and the mission.” Amanda says it is gratifying to see more and more people attend the Walk every year. The teams are growing and communities are banding together. 

“It seems like more people are coming together for a pretty substantial reason -- to find a cure,” Amanda says. 

This year will make Amanda a brain cancer survivor of 17 years. Her perseverance and strength continues each and every day and she says it’s crucial to remain focused throughout the whole journey.  

“No matter how difficult it is, you just have to get through it. There’s no other choice,” Amanda says. “Have an end goal in mind and listen to your doctors. It’s really important to feel a connection to them and make sure they understand you and what you’re feeling.”

“That’s the reason I’m here at Swedish, because I believe in them!” Amanda says. 

The 2020 Virtual Seattle Brain Cancer Walk will take place on Sunday, May 3. You can support the Walk and learn more by donating here or by registering for the event as a virtual walker here

 


 

Bren Norman: The Power of Community

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Nearly three years ago on June 1, 2016, Tri-Cities native Bren Norman suffered a grand mal seizure while practicing one of his newfound passions, Brazilian jiu jitsu. A CAT scan showed he had a tumor. The doctors kept Bren overnight in the ICU and quickly scheduled surgery for June 14, just two weeks later.
 
The tumor was found to be malignant and Bren was diagnosed with Stage II Oligodendroglioma, or brain cancer, and Bren received chemotherapy for 10 months.

After his diagnosis, Bren suffered from depression and started seeing Dr. Jerome Graber, a neuro-oncologist at the Ben and Catherine Ivy Center for Advanced Brain Tumor Treatment. 

“He was amazing,” Bren said. “He assured me over and over that I was going to live a long time. I didn’t always believe him, but we developed a really good friendship.”

Bren went back to work about three months post-surgery. He would make the five-hour drive to Seattle every three months to get routine scans. Just as the holidays were approaching in December 2018, Bren’s MRI scans showed small tumor growth. As a result, Bren completed six weeks of radiation and chemotherapy. However, even with surgery, doctors were not able to remove the whole tumor.

Now, every three months, Bren will return to Swedish Hospital at Cherry Hill for more scans. 

“I just love the Ivy Center and the entire staff,” Bren said. “It’s super comforting when I walk in there to see how friendly everyone is. [They are] always willing to give hugs when I need hugs.”

From now on, Bren says, he has come to accept that his life is one with brain cancer. It can sometimes be an all-too-consuming thought. But with the acceptance of his diagnosis, Bren says he takes greater care in truly living in the moment. The Ivy Center and Swedish have been essential in setting this mindset, Bren says. 

The first Seattle Brain Cancer Walk Bren and his family participated in was in 2017.

The first year they participated in the walk, Bren and his family did not try to raise funds, but this year will be different. Bren has named his team Team Brain Tumor Brazilian Jiu-Jitsu. Since his diagnosis, Bren has found six other brain cancer survivors who also practice Brazilian Jiu-Jitsu. 

“I named my team that in part for them, and our determination to not let our health get in the way of something we love,” Bren said. Their goal this year is to raise about $4,000 and get some extended family members to join in the Walk, too. 

“Me and my family are super excited to be a little bit of a bigger part of the Walk this year,” Bren said. “I see how much need there is in the brain cancer community for research.” 

Bren says that the Walk showed him the power and strength of community and the realization that you are never alone in the fight.

“There are plenty of others who go through the same emotions and there are plenty of people out there to give support,” Bren says. The Walk brings light and positivity to a cause that is hopeful, Bren says. He is excited to return this year to be more active and perhaps be the silent inspiration for someone who may have just been recently diagnosed. 

Bren says those going through a similar battle with brain cancer or know someone who is, should never be afraid to lean on the people who support you. Bren says his family and his three kids have acted as an anchor in his journey and he looks forward to being the best dad he can be every day. 

“It doesn’t have to be only your burden,” Bren said. “There are plenty of people who are willing to share that burden with you. Open up instead of bottling it up. And don’t forget to give lots of hugs.” 

The 12th annual Seattle Brain Cancer Walk will take place on Sunday, May 5, 2019. You can support the Walk and learn more by donating here or by registering for the event here. 

The Power of Collaborations with the Ivy Center

Ivy center team 2019

For countless researchers, doctors and scientists around the world, there is one goal in mind: find a cure for brain cancer. The fight to discover the most innovative treatments and unearth scientific breakthroughs is downright impossible without a lot of bright minds from around the world working together. The Ben and Catherine Ivy Center for Advanced Brain Tumor Treatment has been a renowned leader in the brain cancer community, due in large part to its collaborations with other research centers, hospitals and scientists that are helping to get all of us one step closer to a cure. 

“In 2019, to do research at a world-class level, you have to tap into the best minds and the best facilities that you can utilize to do world-class work,” says Dr. Charles Cobbs, director of the Ivy Center. “No one really works in a vacuum or on an island. These collaborations mean everything to the Ivy Center and our research.” 

The University of Washington, Allen Institute for Brain Science and Harvard Medical School are all a part of the Ivy Center’s canon, just to name a few. 

The extent of work with each of these institutions varies, says Dr. Cobbs, from clinical trials to the use of these institutions’ facilities, but they all work in tandem to propel progress for the future of making strides to find a cure. 

“Combining what we're doing with what these other institutions are doing to the same purpose just brings a huge level of quality and, hopefully, in terms of what breakthroughs we can get, makes all the difference,” says Dr. Cobbs. 

The collaboration with the University of Washington, for instance, helps put that science to work with the development of clinical trials at one of their core facilities, the Cancer Vaccine Institute. One of those trials is focused on using a patient’s own tumor cells for personalized immunotherapy, involving the use of genetic information from the tumor and putting it back into the patient’s immune cells, says Dr. Cobbs. 

The facility assists in providing the huge cost of putting these clinical trials into motion, Dr. Cobbs says. From space to equipment to staff, the collaboration with the University of Washington is crucial to measuring the success of the clinical trials. 

In the past year, there has also been substantial research published in conjunction with the Allen Institute for Brain Science right here in Seattle. Through this collaboration, a huge study called the Ivy Glioblastoma Atlas Project (Ivy GAP), on the molecular genetics of glioblastoma was published in the journal of Science and shared around the world. 

A personal area of research for Dr. Cobbs also includes a key partner: the Institute for Systems Biology (ISB), one of the top system biology institutes in the world. For Dr. Cobbs, finding evidence of a viral infection in brain cancer and other tumors could have huge implications for the diagnosis and treatment of malignant brain cancer. 

“I’m working closely with the ISB team to help us identify and sequence viral genes from tumors,” Dr. Cobbs says. “It’s an important collaboration for research and I interact with them on a weekly basis.” 

Dr. Cobbs anticipates bringing more collaboration into the fold within this area of research, particularly with researchers at Harvard Medical School, using grant funds from the National Institutes of Health for support. 
A misconception that these institutions researching and treating patients work in silos is something that is simply not true, Dr. Cobbs says. 

“It’s different in the research world,” Dr. Cobbs says, “we collaborate heavily with people because we’re all needing each other’s help working for the same goal.”

The funds being raised at the Seattle Brain Cancer Walk is going to benefit research that, on a larger scale, reaches different research centers and facilities that work in tandem with the Ivy Center. These partnerships create a lasting impact for the brain cancer community and without them, the fight to find a cure would be nowhere near as strong as it is now. 

“Nobody that does good work does so all by themselves,” Dr. Cobbs says. 

The 12th annual Seattle Brain Cancer Walk will take place on Sunday, May 5, 2019. You can support the Walk and learn more by donating here or by registering for the event here

 


 

Meet Kelsey Saty: New Mom and Brain Cancer Survivor

2019 SBCW Honoree

In September of 2015, Kelsey Saty experienced the worst migraine she ever had in her life. Her arm and lips went numb. Her vision blurred. 

At 27-years-old, Kelsey received news no one, let alone a twenty-something, ever wants to hear. Her CAT scan came back showing an abnormality in her brain. They had to do an MRI to truly understand what was going on. 
 
“We lost it. My heart sank,” Kelsey said. And soon the worry and panic started to take hold as Kelsey and her family were told she would have to wait until a neurologist could review her scans.  

The next morning, Kelsey woke up to a voicemail left by a neurologist confirming that the scan revealed a tumor in her brain. The doctor advised Kelsey to seek a neurosurgeon immediately, gave her a contact to reach out to and hung up. 

Kelsey recalls the fear sinking in. There were no openings for three months at the hospital where she first sought treatment in the ER. Not interested in pursuing treatment there, Kelsey’s husband, Brandon, started calling Swedish Medical Center every day until a cancellation cropped up. Luckily, Kelsey was referred to two surgeons at Swedish - Cherry Hill, and met her surgeon, Dr. Charles Cobbs. 

“We went in still not knowing exactly what was wrong with me,” Kelsey said. “We knew it was a tumor but didn’t know how big it was or the severity of it.” 

Dr. Cobbs confirmed that the tumor looked to be cancerous and needed to be removed as quickly as possible. Surrounded by her mom, her sisters, her husband and her in-laws, Kelsey and her whole family started to cry. 

“Dr. Cobbs just sat there very patiently with us and answered every last question that we had,” Kelsey said. 

Kelsey vividly remembers sitting in Dr. Cobbs’ office on that Thursday, asking how soon she would need to have surgery. 

“How does Monday sound?” Dr. Cobbs replied. From the time that Kelsey was in the emergency room to the Monday she was on Dr. Cobbs’ operating table, 11 days had passed. 

For Kelsey, although it was a frightening and overwhelming time, she was thankful she didn’t really have the time to process it. She stayed in the hospital for two nights post-surgery and then was back the next week for pathology of the tumor. 

Kelsey’s brain tumor was diagnosed as stage II oligodendroglioma. After surgery, Dr. Cobbs believed they took wide enough margins around the tumor when removing it and told Kelsey she wouldn’t need to seek chemotherapy or radiation at that time. 

“That was a huge victory for us,” Kelsey said. “I am a survivor.”

Now, Kelsey visits Swedish every six months for an MRI with an oncologist. A procedure she will do for the rest of her life. 

“Given the circumstances, it was the best experience I think we could have expected or hoped for, which is why the Seattle Brain Cancer Walk is so important to me.”

Bye, Felicia! Why Kelsey Walks

Not only does the Seattle Brain Cancer Walk help fund the research of Kelsey’s surgeon, Dr. Cobbs, through the Ben and Catherine Ivy Center for Advanced Brain Tumor Treatment, but it also provides the hope that one day there will be more answers and potentially a cure for brain cancer. 

“It really hits home for me because it is my hospital, it’s my surgeon, it’s my doctors,” Kelsey said. “They gave me my life and my health back and I want to make a difference.” 

Kelsey says she was in a dark place, mentally and emotionally, after her surgery. She found herself struggling to find people who had gone through something similar. 

“That’s when I started researching brain cancer walks, brain cancer support groups and that’s how I found the Seattle Brain Cancer Walk,” Kelsey said. 

Soon, Kelsey threw herself into getting involved, creating relationships and raising money. Kelsey says that the Walk truly shows her, and others, that they are far from alone in their journey with brain cancer. 

Coming up on her fourth Walk, Kelsey has a team about 30 members strong. Their team name is, “Bye Felicia” in reference to the name of her tumor, Felicia. After some encouragement from her mom’s friend who also once had a tumor, Kelsey named it to gain closure, put it to rest and move on. 


“I thought it would bring light to the situation,” said Kelsey. “But also, that way, everybody when they saw that hashtag was saying goodbye to that demon that was weighing on me.”

In 2015, the phrase, #ByeFelicia became a popular trend on social media, referencing the movie, “Friday” starring rapper and actor, Ice Cube. The phrase is often used as a dismissive send-off toward any kind of negativity. 

This year’s Walk will bring a lot of change for Kelsey. Most notably, her baby son Carter, who will be nine months in May. Kelsey wasn’t sure if she was going to be able to have children after the surgery and now, she says her son keeps her and her husband very busy and very happy. 

“He is my pride and joy,” Kelsey says. 

Kelsey’s goal for the Walk is two-fold: raise more money and increase her team size. If she can reach one more person willing to donate, Kelsey says, it’s a great success for the Walk and the research it supports for Dr. Cobbs and his team. 

“Each year it heals me more and more,” Kelsey says. Over the past three years, Kelsey has noticed extraordinary strides in making the Walk’s impact greater and be seen. She says it’s incredible seeing more and more survivors come out and participate each year. 

“It’s the small things that were huge victories,” Kelsey says of her own experience. To be patient with yourself or with the individual going through brain cancer is all crucial to the healing process. 

“Take it one day at a time and really fall back on your support group. Whether that’s your family and friends or someone you met through the Walk,” Kelsey said.

The 12th annual Seattle Brain Cancer Walk will take place on Sunday, May 5, 2019. You can support the Walk and learn more by donating here or by registering for the event, here.