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Start Here: Glioblastoma 101
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Start Here:
Glioblastoma 101
Did you know anything about Glioblastoma before you met someone with it?
I had not. Even when I was being tested again and again for the cause of my symptoms, Glioblastoma did not come up.
If you know nothing about Glioblastoma, this is the place for you. I curated resources from experts who give enough information to be understandable without overwhelming you.
Because different people have different learning styles, I give you options for watching videos or reading articles. Of course, you can use all of them if you so wish.
Frame this in your mind:
Every Glioblastoma journey is unique.
While there are some commonalities and data points that talk to medians and general information, all of that goes out the window once you are working with a patient and not just a data set.
Whether you are a patient or someone invested in them, I can almost guarantee you that you will want information that you will have to wait for. The waiting for things from tests and results is feels gruelingly slow. When your life span just got a ticking clock living in your brain, waiting is brutal.
“I literally do not have time to wait,” you may think.
Almost instinctively, you try to gain some measure of control by rabbit-holing on the internet.
Feel free to do it but I offer one caveat:
The internet is not your doctor. Even when you dump all of your data into an AI, it is still not as good as talking to your doctor. AI will get things wrong.
Use the internet/AI for generalities, not medical gospel.
What you won’t get on this page.
Because each person's Glioblastoma journey is unique, content beyond this section will primarily be limited to things that speak to my journey (even if there is overlap, such as information about trials).
Additionally, there are incredible people advocating for us. Their work will continue long after my relatively brief journey in the world of Glioblastoma has ended. I cannot contribute much to the body of work they have and are creating and there is only so much time I can justify giving to a disease that is already taking a lot.
Remember:
Your medical team is your best source for creating the best journey for you.
Choose Your Learning Style
Watch Videos
Understanding Glioblastomas: Symptoms, Treatment, and Prognosis
A high-level overview of Glioblastoma.
The National Organization for Rare Disorders (NORD) is a highly respected and trusted non-profit organization.
Read Articles
This article is a great introduction to Glioblastoma by UT MD Anderson. Some highlights of what to expect when you click:
What is glioblastoma?
Who gets glioblastoma? (brief)
Symptoms (very brief)
Diagnosis (vey brief)
Treatments (very brief)
Glioblastoma survival rate
What It Means for Me
My Glioblastoma is a gift that I am delighting in opening and playing with.
Is this gift sometimes frustratingly wrapped? Yes. But it’s a minor inconvenience.
Does it sometimes stink of fresh cat urine? Yep, like a freakin’ lioness with a urinary tract infection* who wants to angrily mark me. But that tells me there’s something especially valuable waiting for me if I am just willing to tear through the surface garbage.
Since around 2009 (39 years old at the time), I have faced every meaningful adversity with the question, “what is the gift this experience is offering me”? And I always found it. Maybe I had to wait a while to get through that wrapping but I knew I would and I knew it would be worth it.
When I got my diagnosis, the first thing I did was ask myself, “did I do this to myself”? For most of my life, the answer was a resounding “YES YOU IDIOT!” But this time, I got a quick “Nooooo! Absolutely not!”
The next step was looking for the gift.
I have found so many of them. Piled high and strewn about my brain are such a dizzying number of gifts that it will take a medical miracle for me to enjoy all of them. Even that problem is a gift.
I have tried to kill myself multiple times** in my life and those were not my worst days or biggest challenges I would face.
It is trite but true: I have been dying since the day I was born. Something was always going to get me sooner or later. I would be remiss if I did not share that I never saw myself as growing old and I cannot look in a mirror without dismay at what I see. That person should not exist.
So why am I still here?
If I had figured out some things earlier in life, I would likely have died by now. But apparently even my spirit has an abysmal sense of direction. I got lost a few times and it just took quite a bit longer to get here than my spiritual GPS said it should. Google knows the challenge. If it had a face, it would facepalm at least 25% of every trip I take. I cannot prove it, but I am pretty certain I hear it sigh while I drive.
But I made it.
Now I am sticking around long enough to write the epilogue of my story. It is a story that I can only write because I was given the gift of Glioblastoma. It is a gift kindly given in such a way that I will have more time than many other people who have (and have had) this disease get.
What does Glioblastoma mean to me?
It means “This is your final exam. With the time you have left, show me what you have learned from your lifetime.”
When I was 40 years old, I became obsessed with proving I could finish college. It is not hyperbole when I tell you that I believed I had only two potential outcomes: graduate with my degree or fail and kill myself. Both were lifelong failures. One way or another, I would succeed at one.
My obsession transformed me from being a lifelong C-D-F student to a straight-A student that graduated with honors.
I call this “My Life’s Final Exam”.
I will ace it.
-------------------------------------------
* I assume. I am not going to verify this.
** Prior to 2009. While 2009/10 was the worst period of my life—it dwarfed the challenges that led to any of my suicide attempts—I did not actually attempt suicide. I will always owe a debt for the people that supported me through my longest and deepest depression.
Resources
Medical Information on Glioblastoma from Leading Authorities
If you are primarily looking for “just the facts” information about Glioblastoma, this is where to find some. These are leading experts in the field that provide clear, medically grounded explanations of Glioblastoma—what it is, how it behaves, and how it is typically treated.
Each source comes from a major medical institution and is intended to give you a reliable starting point for understanding the disease.
MD Anderson Cancer Center
A clear, well-structured overview of Glioblastoma, including symptoms, diagnosis, and treatment. One of the leading cancer centers in the world.
Mayo Clinic
Straightforward medical explanation of Glioblastoma with a focus on symptoms, causes, and treatment options. Useful for a concise, clinical overview.
https://www.mayoclinic.org/diseases-conditions/glioblastoma/symptoms-causes/syc-20574948
Cleveland Clinic
Accessible and easy-to-read breakdown of glioblastoma, including what patients and families might expect.
https://my.clevelandclinic.org/health/diseases/16751-glioblastoma
Johns Hopkins Medicine
Overview of glioblastoma from a major academic medical center, including diagnosis and treatment insights.
https://www.hopkinsmedicine.org/health/conditions-and-diseases/glioblastoma
Organizations & Support Resources
Find information for the following:
Research organizations
Advocacy & Awareness Groups
Support Networks, including those for Caregivers
Unless otherwise noted, all Charity Navigator Ratings were last updated on May 5, 2026.
Note: Glioblastoma Foundation and Glioblastoma Research Organization are Glioblastoma-specific. The remaining entries speak to wider but related audiences.
Glioblastoma Foundation
Focused on funding research and accelerating new treatments specifically for Glioblastoma.
https://glioblastomafoundation.org/
Charity Navigator Rate: 86%
Glioblastoma Research Organization
Supports research, education, and awareness efforts specifically focused on Glioblastoma.
https://www.gbmresearch.org/
Charity Navigator Rate: 91%
National Brain Tumor Society
Funds research and provides education, advocacy, and support resources for brain tumor patients and families.
https://braintumor.org/
Charity Navigator Rate: 97%
American Brain Tumor Association
Provides patient education, support resources, and connections for individuals and families affected by brain tumors.
Charity Navigator Rate: 100%
American Cancer Society
Broad cancer support organization offering information, support programs, and guidance for patients and caregivers.
Charity Navigator Rate: 96%
CancerCare
From their page:
“Professional oncology social workers provide free emotional and practical support for people with cancer, caregivers, loved ones and the bereaved.”
Charity Navigator Rate: 100%
Clinical Trials
Before you dive into researching trials, here are three things you need to know to reduce the pain of banging your presumably already banged head onto hazards.
Prepare your medical records. Unless you just enjoy reading random trials for fun, you will need your records help zero in on trials that are more likely to be relevant.
You will not be able to join most trials. This is normal. Trials can be listed that, among other causes, have already completed, closed, or have eligibility that exclude you.
Your neuro-oncologist is your best resource. While they know how to swim in that tumultuous sea of data in general, they know your specific set of circumstances and can more quickly navigate you to the best options for you.
ClinicalTrials.gov
If you only search one trials site, it has to be this for one reason: if there is a trial, it’s here somewhere. The comprehensive site is both its strength and challenge. It is easy to get overwhelmed. It is easy to swim for a long time only to feel like you have not gotten any closer to where you were aiming for.
If you can swim well in those waters, it’s a gold mine of information.
National Cancer Institute Trial Search
A cancer-specific clinical trials. Its primary audience is still medical professional and the presentation style reflect this but it one BIG resource: you can their Cancer Information Service and speak to a person free of charge. There is also an instant messaging feature.
https://www.cancer.gov/about-cancer/treatment/clinical-trials/search
IMPORTANT NOTE: As of my most recent update, NCI has noted that due to a lapse in government funding, information on the site may not be up to date and the agency may not be able to respond to all inquiries.
EmergingMed Trial Finder
Think of this as a free, confidential, cancer-focused, trials concierge approach to finding trials.
Their homepage prominently features two places where they tell you to ask to “Request a Contact”. The really want you to connect with them. If I had not already verified their legitimacy, I would have thought they were trying to sell me something. Maybe I’ve just had too many too intense dates back in my day.
While I have not yet requested information from them, of the resources listed, this may be the best “start here” option for getting trials information as easily as possible.
I am so intrigued that I’ll try it just so I can report to you.
Conversations with…
What is this?
At my essence, I am a journalist. I always have been and my dying breath* will have me questioning what story I can find in that moment and the next one to come.
Ideally, I want to interview interesting people related to Glioblastoma and collect them here. Of course, they will be in my main blog but this section is curated for users who come to this site specifically for Glioblastoma stuff.
There are no conversations here yet but I already have ideas. I reason getting this site going and gaining some measure of credibility will help me get a “yes” from people I reach out to for interviews.
If you happen to see this and can connect me with someone who is a good candidate for an interview, let’s talk. Some expectations defining a “good candidate”:
What is the story they want to share beyond their personal experience of having Glioblastoma?
While personal stories and person’s anecdotes are important, there are places filled with those. I can barely keep up with my story.
Are they a credible subject matter expert?
I verify every meaningful source and that source must be credible. The sketchier something sounds, the more I deeper I will go to verify it.
* Data strongly supports the expectation that, upon my death, I will stop talking. I am not 100% certain that will be my experience.
Hover, I am also nearly 100% convinced that my wife will be annoyed that “until death do us part” was something she was counting on when we I made that vow and now I just won’t leave (though, in my defense, I would get lost trying to leave, I’ll just puppy-dog follow her around.)