My experience having the new 'breakthrough' brain cancer blood test.
What is the TriNetra-Glio blood test and why did I have it?
Prevention is better than cure. That’s what they say, right?
What if a simple blood test could detect a signal before anything sinister appears on an MRI scan?
Well… there might be one, but we don’t yet know, and I’m eager to find out. My curiosity has brought me to where I am today, so I plan to continue being highly inquisitive about every new development that captures my interest.
What am I blabbering on about?… The title kind of gives it away. Yesterday I had the new TriNetra-Glio blood test, developed by Datar Cancer Genetics. The idea is to isolate cells that have broken free from a brain tumour and into the bloodstream, which can then be analysed.
The test was not originally developed for someone like me, but it has the potential to be. Although I have a history of brain cancer, its design aimed to assist individuals for whom a brain biopsy or surgical removal of the tumour is not feasible due to the tumour's location or other limitations. While this is indeed a wonderful advancement, I believe we need to broaden our perspective. And we can! I am eager to contribute to opening the door to even greater possibilities.
Don’t get me wrong, I don't consider myself as some kind of oracle with earth-shattering ideas that haven't already been considered. I'm hopeful that, in the not-to-distant future, the creators of the test intend to apply this technology to individuals in my situation, or at least to those in a 'watch and wait' scenario.
For those that aren’t aware, in the brain tumour world, ‘watch and wait’ refers to a monitoring approach rather than immediate treatment. Doctors closely observe the patient's condition without administering any immediate therapy, such as surgery, radiation, or chemotherapy. From my perspective, this method presents a prime opportunity to experiment with something innovative and proactive. However, there seems to be a real lack of willingness to explore new avenues. As a result, there's usually no action taken—though, to be fair, there have been some advancements in recent years, such as the development of IDH1 inhibitors and specific gene inhibitors in paediatric brain tumours, such as ALK inhibitors. We even had a major breakthrough for DIPG recently, which I wasn’t sure we would ever see in my lifetime.
Typically, the 'watch and wait' approach is reserved for low-grade (slow-growing) brain tumours or for tumours situated in areas where surgery poses too great a risk. By adopting a passive stance, I feel we squander valuable time and the hope for improved outcomes, whereas we could adopt a more proactive stance with non-toxic treatment strategies. This new blood test could play a crucial role in monitoring these strategies in real-time, offering a more dynamic approach to managing the disease.
For now we will have to focus on diagnostics. We already know from impressive trial data that the TriNetra-Glio blood test is able to accurately and reliably diagnose glial tumours. I reported these results last year and remarked how this was indeed a major development in brain tumour diagnostics and has massive potential to improve how we detect brain tumours earlier and direct treatment decisions.
I recall interviewing Dr Vineet Datta, Executive Director of Datar Cancer Genetics, about the future of this technology and what it means for brain tumour patients. This was just over a year ago now, it’s crazy how time flies. I just wanted to know when I could take the test and whether the hype around it was truly justified. I had seen so many false dawns in the past, but I was becoming a bit of a fanboy. This really is out of character for me, but I had so many questions about how we could take advantage of this new technology beyond its intended applications.
Since being told years ago that I had achieved 'complete remission' from my cancer, my driving force has been to do everything within my power to prevent a recurrence. This ambition persists despite the knowledge that these tumours almost inevitably return at some point. I am an optimist, yet I remain grounded in realism.
At the forefront of my mind was the thought, ‘There must be a better way to monitor this,’ rather than merely managing the symptoms I've been left with through ketogenic metabolic therapy (KMT) and maintaining desirable levels in a comprehensive set of blood tests (for inflammation, micronutrient status, metal toxicity, insulin, IGF1, etc.).
I've often felt that I'm following the best available option for myself, as the methods I've used to manage the range of symptoms I've experienced over the years have overlaps with the mechanisms of how these approaches treat cancer in preclinical models, including animal studies involving rodents and dogs.
With the advent of new technology and innovative approaches, coupled with ever-decreasing costs, we might finally be nearing an era where more advanced methods can detect subtler signals, revealing signs before anything becomes visually apparent on an MRI scan. Over the years, I've been fascinated by the ambition to develop a truly reliable 'liquid biopsy' for brain tumours that can match the accuracy of similar tests for other cancers. This always seemed like a pipe dream due to the obstacle that is the blood-brain barrier. Finally, I feel we have reached a seminal moment with this new test.
It is so often said that it is better to treat cancers as early as possible, especially I would have thought, at the time BEFORE it even becomes a ‘cancer’! By the time you see any activity on a scan that is suggestive of a recurrence, even if it’s a little smudge, you likely already have billions of cancer cells.
I look forward to sharing the results of my test as soon as I receive them. I’m prepared for any result - positive, negative, false positive, false negative or an indeterminate reading. I have plans for all scenarios and have considered the psychological implications.
In my next update, I will examine the psychological aspects of receiving test results in more detail, along with sharing some thoughts on how we might proactively respond to what we observe.
I hope this summary of my thoughts has helped you gain further insight into the application and potential future direction I envision for the use of these tests.
What are your thoughts?
This is so helpful and hopeful and I would get involved with anything that’s offered. Information is power - so my old boss used to tell me 🤣