National GBM Awareness Day
Today was a very busy day for brain cancer advocates like me. So, I hope to keep this short. (P.S. Never trust an attorney that says that, or “I have just one last question.” – We never mean it!).
July 22nd is “National GBM Awareness Day.” For those who are fortunate enough to not be well-versed in the brain cancer world, “GBM” stands for glioblastoma multiforme, the most aggressive type of brain cancer. It is known mostly because Sen. John McCain and Sen. Edward Kennedy both passed from GBM exactly 9 years apart to the day. Vice President Joe Biden’s son, Beau, also passed in 2015 from a GBM, which motivated the Vice President to form the Cancer Moonshot initiative.
Hearing that you have brain cancer is earth-shattering. Hearing you have a GBM, well there are no words.
I won’t get too technical. However, to be clear – I was not diagnosed with a GBM. My type of tumor (both instances) is within the glioma family meaning that like GBM, both tumors began in my glial cells that support and surround the nerve cells and help them function. Hence, the nerve damage that now affects my left side.
Some Info on GBM:
I HATE statistics. I am a person and NOT a number.
Unfortunately, when it comes to brain cancer the statistics are grim, especially for GBM patients. As it is “GBM Awareness Day” and to raise awareness, I will cite a few statistics:
- Glioblastoma (or GBM) is one of the most complex, deadly, and treatment-resistant cancers.
- More than 13,000 Americans are expected to receive a GBM diagnosis in 2020.
- GBM accounts for 48 percent of all primary malignant brain tumors.
- It is estimated that more than 10,000 individuals in the United States will succumb to glioblastoma every year.
- The five-year survival rate for glioblastoma patients is only 6.8 percent, and the average length of survival for glioblastoma patients is estimated to be only 12 to 18 months. Yet, survival rates and mortality statistics for GBM have been virtually unchanged for decades.
Like so many cancer patients, those afflicted with GBM:
- Lose their ability to work, drive, and a host of other functions that contribute to one’s sense of self and independence.
- Glioblastoma is also one of the more expensive cancers to treat, often leaving patients and families with major financial hardship on top of the burdens of the disease.
See More Information at the National Brain Tumor Society’s (NBTS) site: https://braintumor.org/take-action/about-gbm/
FUNNY SIDE NOTE SINCE WE’RE HANDLING SOME HEAVY STUFF HERE: I aced Statistics Class in high school. However, it was a requirement Freshman year of college. They ONLY offered it at 8:00 a.m. on a Friday morning! Now, Thursday night is a major drinking fest in college, and well I certainly did partake! My parents will never read this, but they caught me drunk at 14 years old. So, this would come as no surprise anyway. I do not think I was EVER sober in that 8:00 a.m. Statistics Class in college. At least I remained conscious though. My roommate took the class with me and openly slept through almost every one. Oh well. I still got an “A”! 😉
Why Is GBM So Hard to Treat?
All brain cancers are extremely hard to treat due to the blood-brain barrier, which is designed basically to protect our brains. Thus, it is difficult for drugs to pass through that barrier. Additionally, GBM tumor cells act like tentacles, in that they crawl from the main tumor and embed themselves deep within the brain. So surgeons cannot remove all the tumor cells, even if they can remove the main mass. Further, GBM tumors have different DNA mutations. Thus, a treatment/therapeutic approach may work in one patient, but not work in another.
GBM was actually the first cancer to undergo comprehensive genetic analysis as part of the multibillion-dollar National Cancer Institute-led project called “The Cancer Genome Atlas.” This involved analyzing gene patterns and DNA sequencing of several cancers. This is all way, way above my level of intelligence. I’ve attended conferences and listened to panels in which these researchers and doctors discuss their work. I just doodle on my paper because their level of brilliance is so far beyond my comprehension, and I’m a relatively intelligent person!
Today, as part of NBTS’ virtual events there was a Town Hall discussion with some of the leaders in this field moderated by New York Times Pulitzer Prize-winning investigative reporter Eric Lipton.
If you are interested in GBM, brain cancer or any cancer research, FOLLOW THESE INDIVIDUALS:
- Adam Hayden GBM patient and advocate;
- Dr. Ned Sharpless, Director of the National Cancer Institute (NCI);
- Dr. Richard Pazdur, Director of the FDA’s Oncology Center of Excellence (OCE);
- Dr. Susan Chang, Director of the Glioblastoma Precision Medicine Program, University of California, San Francisco;
- Dr. Patrick Wen, Director of the Center for Neuro-Oncology at Dana-Farber Cancer Institute; and
- David Arons, CEO of the National Brain Tumor Society
Despite the hard facts/statistics about brain cancer and GBMs, in particular, what we learned as advocates today is:
There is hope! Research is coming through with precision medicine, molecular studies and treating the person – not just the tumor! This is especially important for those with a GBM.
A Minute To Brag
Last year, I was utterly humbled and proud to have been one of the patient advocates invited by NBTS to a reception on Capital Hill for the inaugural “GBM Awareness Day”. Over the years, through my fundraising, advocacy and leadership on behalf of NBTS in our NYC Metro Area, I’ve gotten to know the CEO, David Arons and other Board Members very well.
So, gaining an invite to this reception in the esteemed Mansfield Room in the Capital Building was beyond exciting! If you’re interested, this Room has an incredible history behind it. You can watch a video here: https://www.c-span.org/video/?c4513766/history-mike-mansfield-room-us-capitol or just use good old Google!
I actually learned of its history by speaking with Sen. Lindsey Graham’s former aide. Despite being on Capital Hill, I imagine everyone was aware that this was not political-this Day was for a much greater purpose. I still have his current aide’s business card in my wallet. I must say, they were two extremely nice, humble gentlemen.
So here are some of my photos from last year:
Honoring Those Affected By GBM
An important part of the day, as it always is for NBTS, is to honor those affected.
Often referred to as a monster of a disease, GBM takes so much from those that are affected – patients, families, caregivers, and loved ones. In the face of a glioblastoma diagnosis, families rely on love, hope, and the promise that research is advancing toward a cure. Every patient and family is different, each with their own journey, but all deserve recognition and action to defeat GBM. On the second annual Glioblastoma Awareness Day in the United States, we ask you to take one day to honor these patients, those we’ve lost, and their families.From NBTS – http://www.braintumor.org
You can read these stories here: https://braintumor.org/take-action/gbm-honor-stories/
GBM AGILE-A New Clinical Trial
A very important initiative discussed was GBM AGILE, a new clinical trial! The trial will be in association with the Global Coalition for Adaptive Research. https://www.gcaresearch.org/.
The Global Coalition for Adaptive Research (GCAR) is an international partnership comprised of some of the world’s foremost clinical, translational, and basic science investigators. Through this collaboration and open exchange of ideas, the ultimate beneficiary—the patient—is supported in the fight against rare and deadly diseases.See more through the link above
Below is more information on this exciting endeavor from NBTS.
These types of all-day events, even if they are virtual, couldn’t be possible without sponsorship. Thank you to today’s Sponsors!
In Memory of One of My Many Guardian Angels Taken by GBM
Following my 4th brain surgery, as I was hooked up to a portable 24/7 IV of an extremely powerful drug to hopefully kill the 3 bacteria that had invaded my skull bone, I got the call:
It’s time to say goodbye to Jac.
Jac, or Jaclyn Sabol Patton, was my “brain cancer partner in crime”. Bizarrely, we both went to the same, small all-girls Catholic high school in suburban Northern New Jersey. However, I was 2 grades above her and it took brain cancer for us to actually meet.
I’ll never forget the first time we met.
I was diagnosed in April 2014 and by May, I had found NBTS because I knew s—t about brain cancer. I was still recovering from my 1st brain surgery (oh, those were the days when I could say “one brain surgery”- not seven as It stands now). I was Googling legitimate organizations to find out what the hell had just happened to me. I knew better than to turn to some Chat Room or go down the wormhole of the Internet.
I stumbled across a very reputable organization, the National Brain Tumor Society. Not only that, but they were hosting a NYC Walk in June! It always seemed fundraising was in my blood. I was always drawn to it. So I immediately created a fundraising page and asked anyone & everyone to donate.
My father reached out to my high school soliciting a donation. Ha! Nice try, Dad. Nope, no donation BUT the Alumni Coordinator contacted me to advise ANOTHER Alum 2 years below me also had brain cancer and was also participating in the Walk! What???
It was fate.
I got Jaclyn’s contact info and we emailed back and forth for a bit. Jac was actually the Walk’s MC, and told me to come to the stage so we could meet in-person. I’ll tell you, I was undergoing radiation 5 days a week by June. I felt so fatigued but I had to gather the strength to get there. Turns out, I was also the “Top Individual Fundraiser” and would receive an award. So no excuses! I made it there and thank God I did!
I timidly approached the stage because it looked like Jac had a lot on her plate that day. I would later learn her dear friend, Emily Morrison, another NBTS angel had passed in March and her parents were being honored. It was not an easy day for anyone! However, when I introduced myself she smiled from ear to ear, yelled out, “oh my God, Ruth!” and swallowed me up in a huge hug. It was like we were long lost friends seeing one another for the first time in years! Ugh, I miss those hugs so much.
I could write volumes about Jaclyn. I did say this would be short and I also said not to believe that!
To sum it up, Jac could light up a room. She turned heads. When she spoke, everyone listened. She was just as beautiful on the inside as she was on the outside. She could have ruled the world! If you didn’t absolutely love her, then there was something seriously wrong with you. She solidly stood-up for her convictions, and even if you didn’t agree with her: 1. She’d change your mind, or 2. You’d question yourself. She was much more diplomatic than me because we agreed on pretty much everything. Yet, she had the charisma, sparkle and personality to change people’s way of thinking. On the other hand, I am a “you either love me or hate me” kinda gal. 🤷🏻♀️
Not only did we agree on everything, but it was like our “cancer chaos” mirrored one another. I’d have to get another surgery-she’d have to get another surgery. I’d have to get more radiation-she’d have to get more radiation. I’d have to take steroids-she’d have to take steroids.
We would literally text one another photos of our giant bacon, egg & cheese bagel sandwiches we’d consume on our lovely Dexamethasone diets! We’d compare what clothes we couldn’t fit into anymore because of the Devil Dex! Now Jac was taller, but I’m 5’2 and typically weigh between 100-105 lbs. I shot up to 130 lbs! For most women 130 lbs doesn’t seem like much. On my petite frame, I went up 4-6 sizes depending of course what i was wearing. I had to buy an entire new wardrobe and while that may sound fun, it’s not!!!
We both treated at Memorial Sloan Kettering in NYC. So, it was easy for us to visit one another during one of our many medical crisis points. She was always there for me, and I was always there for her.
I was the first person she saw when she learned her tumor had recurred. We both had appointments that day and we met for dinner at PJ Clark’s on 3rd Avenue. I still hate seeing that place.
Jac’s husband was away on business and frankly, she never expected to hear those results. We sat there shell-shocked. Neither of us could really drink, or we were advised not to at that time. F it. We drank! I had tears running down my face into my Old Fashioned.
Things kind of blur together after that. Between my surgeries and hers, her clinical trials and stints in ICU, I lose track of how it all went downhill. Seeing her in the ICU not making much sense-I chalked it up to the meds. Receiving rambled texts at 3:00 am (not uncommon) but just of nonsensical emojis-eh, she’s probably just exhausted. Her telling me the not so pleasant details of how she could not control certain things, which I will never go into-I simply thought, medication side effects suck!
Looking back, although I did have my own serious medical problems, I didn’t want to believe that one of the strongest people in the world was dying! We swore it would never be us! So, when I learned she had had a massive seizure and was catatonic, I was still convinced she’d pull through.
Although saying Goodbye was one of the hardest things I’ve ever had to do, I left feeling at peace. I know she realized I was there. That’s something I keep close to my heart. This isn’t where I will share that story.
On May 9, 2017 at 35 years young, Jac left this world. She will forever be in the hearts of everyone that loved her. I know she’s watching over me. I know she’s still with me, but God, what I would give for another one of those hugs!
WE MUST DEFEAT GBM!
A CURE CANNOT WAIT
Love you, Jac