CHICAGO (WLS) -- I'll never forget that day: December 21st, 2020. I was on the anchor desk delivering the morning news, while my husband was all alone at home having a massive seizure. Then, the devastating news: your husband has brain cancer.
We are sharing his story today in hopes of helping others facing this hopeless diagnosis, because there may just be some good news after all.
"It's hard when someone puts an expiration date on you," said Nick Adamski, Diane's husband.
Just days before Christmas in 2020, my otherwise healthy, fit, vivacious husband collapsed on the floor of our home from a massive seizure.
"The only thing I remember is my right leg going up and shaking everything," Adamski said. "After that, I couldn't tell you anything."
When he missed his daily workout with my father, we knew something was wrong. He was rushed to Lutheran General Hospital. When I finally got inside, my whole body froze as the doctor said: "Your husband has a grade 4 glioblastoma, a cancerous brain tumor."
He never had any symptoms. Soon he was bleeding from the brain and needed emergency surgery. Afterwards he was frail, paralyzed on his right side, and developed a MRSA infection.
The surgeon said he removed the tumor. But that was just the beginning.
Nick regained use of this right side, and then went through chemo and radiation. That's when he was told he had just over a year to live.
Glioblastoma is so aggressive, it hides behind healthy cells only to reappear again and again. And it did, less than nine months later.
We went for another opinion at Northwestern Medicine where we met with my husband's now neuro-oncologist, Dr. Rimas Lukas.
"In Nick's case, he had a lot of exciting things from a genetic perspective, one of them was the presence of something called the FGFR TAC3 fusion," Dr. Lukas said. "This for us is exciting because it has potential target, so there are drugs available which we can use."
Doctors performed cutting-edge technology called methylation profiling inside a lab where ABC7 got an exclusive look to try and grasp what this could mean for patients that feel hopeless.
"Methylation profiling is taking the genetic fingerprint of the tumor," said Dr. Craig Horbinski, chief of neuropathology at Northwestern Medicine. "We can more clearly identify exactly what kind of tumor it is that will inform on the patient's ultimate prognosis, as well as any clinical trials that the patient might be a candidate for."
Northwestern Medicine is one of only a half dozen institutes across the country doing this type of testing routinely, and the only one in Illinois.
Nick's testing revealed two genes that prompted treatment with a drug that normally treats metastatic bladder cancer. Within just a few months, it worked.
"In Nick's case, we had a more favorable response because we had shrinkage of tumor over time," Dr. Lukas said.
There are some rough side effects, including the loss of finger and toe nails, mouth sores, and more, but Nick says it's worth all of that.
As a former Milwaukee firefighter, he has faced many challenges in his life, and now he is facing his toughest battle yet.
He decided to share his story because he wants to continue to help people.
After being told I'd lose him in a year or so, this week marks two years since his diagnosis.
His new life's motto? Nick says, "It's getting your mind positive, staying in a good mood, telling yourself that you can do this."
When I asked him what was the motivation behind his "PMA," as he calls it, or positive mental attitude, he said: "Hooo, you, first off, my family, um, it was all about family, really, it really was. I am not going to plan a funeral, I'm going to plan to get better."
It's been a little over a year since Northwestern Medicine started methylation profiling, and they have already done it on 500 cases. And you don't have to live nearby to take advantage of it. Dr. Horbinski said patients can send their tumor tissue there for testing.
Traditionally, brain tumors are diagnosed based on what pathologists see UNDER the microscope. Northwestern Medicine has launched methylation profiling, which goes BEYOND the microscope as pathologists can now look at the DNA fingerprint of a tumor to provide more accurate diagnosis for patients with brain tumors. Northwestern Medicine is one of a handful of health systems in the country to offer this advanced type of technology for diagnosing brain tumors, and the only in Illinois.
"Methylation profiling is transformative. In many cases, tumors we thought were one thing under the microscope ended up having a very different methylation signature that we had originally anticipated. As a result, we've discovered new types of tumor entities that we didn't even know existed," Dr. Horbinski said.
How does it work? Every kind of tissue in our bodies have a unique methylation fingerprint in the genome. Methylation is a chemical modification in DNA. Just as every kind of tissue in our bodies - from skin to bowel and lung tissue - can be identified and categorized based on their distinct DNA fingerprint, each tumor has a unique methylation fingerprint that can be differentiated from other tumors and categorized into a type of tumor. Methylation profiling makes it possible to differentiate closely related brain tumors from each other that may look similar under the microscope. By using methylation profiling, doctors can offer a prognosis for all tumor types in the brain. Plus, the tumors are then added to a library of cases. The more tumor profiles doctors have, the better they're able to classify rare tumors. Methylation fingerprinting is only as good as the library from which is draws. The more types of tumors profiled, the higher the chance of classifying rare tumors.
Why does this matter? Along with this ability to identify the DNA fingerprint of the tumor, methylation profiling can help scientists understand the origin of such tumors and predict how the tumor may respond to certain therapies, paving the way for an overall more accurate diagnosis and effective treatment plan. Dr. Horbinski says methylation profiling will adjust a brain tumor diagnosis between 25% and 33% of the time.
This type of research, testing and education is what the American Brain Tumor Association continues to fight and raise money for.
The ABTA was founded here in Illinois by two moms with two daughters that had brain tumors. At the time, there was no organization to help patients find support or research.
Now the ABTA is one of the largest organizations in the brain tumor community helping fund investigators that have been advancing new ideas with promising research. And in March, they are launching a major campaign.
"We are going to launch next year, a five-year $50 million campaign in honor of our 50th anniversary," said Ralph Devitto, president of the American Brain Tumor Association, "and one of the things we are going to do as an organization is we are going to triple our spending on brain tumor research in addition we will double our reach of brain tumor patients and caregivers."
The ABTA raises money for research on all brain tumor types, in patients of all ages.