What would you do if you were told you had 14 months to live?

Saturday, January 23, 2016, upstate New York. I had a seizure while hiking. Two days later I had brain surgery to remove a highly aggressive, complex and deadly glioblastoma (GBM) tumor.

GBM killed George Gershwin, Mary Shelley, Ted Kennedy, Beau Biden. It threatens the lives of Senator John McCain, and of Baroness Tessa Jowell. And it threatens mine.

Right now, people with GBM are told that the median survival point – the point at which half the people with GBM die and half continue to live – is just 14 months.

Those of us dealt this card have to live with the knowledge that they – we – I – have a less than 5% chance of being alive 5 years after my diagnosis.

I was outraged, traumatized, blind-sided by my diagnosis. I decided to treat my aggressive tumor aggressively. As well as the standard of care – surgery, radiotherapy, and chemotherapy – I added in immunotherapy, and wear the Optune device.

Just over two years later, I’m not only surviving, but thriving. And technology is one of my main treatments.

When I was told I had GBM, my instinct was to delve into the history of cancer. What I found was that if I’d been diagnosed just 12 years ago, I would probably have died within a few months. Conversely, if we jump forward 12 years, someone diagnosed with GBM in 2030 will be told that while brain cancer isn’t great, it’s treatable.

I want to fast-forward to that future.

I asked my neuro-oncologist, Dr. Fabio Iwamoto of Columbia University, why it’s taking so long to get a cure. He explained that GBM’s rarity and complexity makes it hard to secure research dollars. Funders are generally conservative. Quite understandably, they like to fund research projects that are likely to conclude with a positive result that impacts on a lot of people. But GBM is so rare and heterogeneous that we need finding into the unknown, and funders are deterred. Only 5% of applications for research funding into GBM are successful.

As I was pondering this, I thought about the treatments I’m taking. I was struck by taking immunotherapy at a cost of $12K a shot, paid for through the pharmaceutical’s compassionate use program, and yet the same pharma company asks nothing of me. No monitoring of side effects, anything! Similarly, I’ve been wearing a state-of-the-art helmet. The Optune device is proven to extend the period before and after the recurrence of GBM. Yet it can cause skin problems, and other side effects, that make it hard to wear. Optune costs around $21K a month, which is covered by my insurance. Yet the only monitoring that the company is obliged to undertake by the FDA is how much I wear it. They don’t have to check on side effects.

My pondering led to an idea. What if we could capture the untapped data from patients’ experiences – the ‘subjective’ view of GBM – and add that to the ‘objective’ monitoring performed by MRIs, amount of time wearing the Optune device and so on. Wouldn’t that help us improve advice to patients, as well as improving our research applications?

In other words, what if we gave a value to the patient experience? What if we redesigned research accordingly? Then we could say to funders that we have unprecedented insight into how patients feel with their disease, so your research dollars will go so much further.

We know that patient data is the new currency in medical research. A paper published in JAMA last year, and presented at the 2017 ASCO conference, shows that patients who self-track their health and use this data with their healthcare professionals have better outcomes and longer survival than the usual standard of care.

I believe that self-tracking technology has the potential to have the same impact on GBM as a blockbuster new drug.

I’ve spent the last 18 months working with other patients, neuro-oncologists, tech experts, and health marketeers. The result is OurBrainBank. This is an innovate new non-profit, designed with, by, and for people with GBM. Our core tool is the OurBrainBank App, which enables people like me to manage our disease better by tracking symptoms and activities. At the same time, it gives people like me the magic ingredient of hope, because we know that our personal data is helping to fast-track new treatments and approaches to move GBM from terminal to treatable.

Working on something so cutting edge, so innovative, and so positive, has proved hugely exciting. I feel like I’ve had to face true, unadulterated terror, and have been able to transform that terror into a much stronger, creative force. Early on, I realized that being diagnosed with a truly dreadful disease like GBM is a license to be crazily ambitious. I have, literally, nothing to lose. OurBrainBank is the result. It is designed to move GBM from terminal to treatable. And when we crack this most complex of cancers, we’ll be opening new doors to ridding the world of all cancer.

As Dr. Iwamoto says: “The key to tackling this disease lies in research, and for too long we’ve lacked the critical insight from patients. The OurBrainBank App closes that gap, and I’m excited at the implications. This has the potential to have a real impact on our ability to extend lives.”


You can download the OurBrainBank App from the Apple Store or Google Play. Please use code OBB100 to register. It’s free!

Ref. https://jamanetwork.com/journals/jama/fullarticle/2630810