Patient power

I have no idea what 10 billion bits of herpes looks like, other than a lot. It’s what the neuro-surgeon told me, and he should know as he invented the treatment. I know I need buckets of this stuff because it could help me save my life, because I’ve got one of the worst cancers, if not the worst cancer, around.

I was blind-sided by a full-blown seizure while I was hiking in upstate New York, where I live, in 2016. Until then, I was a happy, healthy PR consultant with three children, a husband, and dreams of a life that promised to just get better and better.

That seizure signalled the end of those dreams. But it also, in the short term, saved my life. The exertion of the hike caused a brain bleed, in turn leading to the exposure of the tumour. If I hadn’t had the seizure, the tumour could have grown unchecked, and simply killed me.

The day after the seizure I had an MRI scan. The day after that, I had a five-hour operation to remove what was described as a “grape” sized tumour from the left parietal of my brain. Two weeks later, the pathology report confirmed my diagnosis: glioblastoma, or glioblastoma multiforme.

January 2016 shook my world, and there’s no going back.

I remember the surgeon advising me not to google “glioblastoma”. He might as well have said don’t breathe. Once immersed, I could see why. Every article featuring this gobbledegook word seemed to delight in stressing how terrible the disease is. The hardest cancer to treat…. A 14-month median survival…. A death sentence…. A terminal condition.

Almost four years later and I’m still here. I’ve learnt a huge amount about the disease, about the scientific and medical worlds. No-one knows why, and no-one knows how long I’ve got. But right here, right now, I’m feeling good, able to enjoy life, make a contribution, smile meaningfully, and look forward to tomorrow. I’ve got the best scientists in the world on my side, the best family in the world. The best group of fellow glioblastoma survivors in the world. The best of everything. I don’t know what’s going to happen in the future, but for me, today I’m cured. That’s what I call patient power.

When I had my seizure, I was referred to a hospital near me in New York. I would need to undergo a six-week course of daily chemotherapy and radiation, followed by a further six months of chemotherapy. It would be more practical to be treated near to where I live in Brooklyn. I wanted treatment that would keep me on planet earth but that I could also get to easily.

I was in a daze. I couldn’t begin to get to grips with the dramatic change that had happened to me but took comfort from being in New York, where neuro-oncologists are uncommonly common, and where I also happened to have good medical insurance.

Enter Jenn. Jenn is a dear friend and a paediatric oncologist then working at Columbia University’s medical school. She talked me through the treatments and, more significantly, helped me understand I had some choices to make. She helped me see this as a campaign – what I would have labelled this if someone had presented me with this challenge – and that, by having choices, I could develop a strategy much as I would for a client.

Jenn pointed out that when faced with a terminal diagnosis, where even the finest scientific minds have drawn blanks, I, the patient, could use my own personal and professional talents to create a plan that saw me in the driving seat.

I decided that my strategy would be to treat my aggressive cancer aggressively, seeking out all options for therapies in addition to those in the standard of care, and to do so quickly, while any remaining, post-surgery cancer cells were reeling from the beating caused by the surgeon’s knife.

I sought different opinions and decided to be treated by Dr Fabio Iwamoto, deputy director of neuro-oncology at Columbia University. He made a compelling case that I supplement the standard of care with what was then a novel immunotherapy for glioblastoma: nivolumab, or opdivo. He also suggested I add in a treatment that had only just been approved for newly diagnosed patients like me: I wore the Optune device, which involves wearing sticky pads on your shaven head. The pads channel electronic tumour-treating fields into your brain via a backpack worn around the clock. I went shopping for scarves.

I scanned social media for other ideas. I adopted the ketogenic diet, the thinking being that we can starve cancer cells by eliminating their favourite food – all forms of sugar – and increasing healthy fats and proteins, thereby getting our energy needs from ‘ketones’ instead. Dr. Iwamoto shared research with me that suggested intermittent fasting with mice with gliobastoma might help. I emerged happily slimmer and poorer for all the new outfits I splurged on. I culled a list of complementary treatments from the few long-term survivors of glioblastoma, and advised by Columbia’s complementary therapies team. We bought a dog. A completely gorgeous wheaten terrier we named Jazzy. I walked her energetically around the park every day.

A few months in, I realised I was a million-dollar woman, in the sense that huge amounts of money were being spent on trying to keep me alive. I felt incredibly lucky, but also frustrated. Despite my million-dollar status, my chances of staying alive beyond the median survival of 15 months, generally accepted by the medical fraternity, were slim.

Moreover, I was frustrated at realising how little my experience of these costly treatments was being examined from the point of view of the patient. In the medical world, progress is measured by “objective” measures, such as MRIs, blood tests and so on. How I, the patient, feel is not included in the measurements. Yet my experience of these drugs proved pivotal. The immunotherapy I took started to interact badly with the Optune device, causing my poor scalp to break out in scars.

Optune costs $21,000 a month, a bill picked up in the US by my insurers, but a cost that in the UK is currently not covered by the NHS. The immunotherapy costs $12,000 a shot, a bill covered by Bristol-Myers Squibb, through its compassionate use programme. Yet neither company was required to monitor the relationship of the two therapies on the same patient. In my case, my scalp became raw, my skin reacting to the gel used to stick the Optune device on, with the immunotherapy in my bloodstream. Despite many attempts to treat my skin, I had to stop wearing the Optune device.

At the same time, I was becoming increasingly well versed in the need for more research funding into the disease. My doctor estimated that only around 5 per cent of applications for research funding into glioblastoma are successful. Who wants to fund research into a disease that’s defied the finest scientific minds in the world? Especially when it doesn’t impact on many people? Funders, generally, want to fund sure bets. They want to see a return.

I pondered and pondered and connected some dots. I introduced Dr Iwamoto, the neuro-oncologist at Columbia, to Bruce Hellman, CEO of a British start-up called uMotif. Bruce had created an effective, beautifully designed app where people could track their symptoms, share their data with their doctor, and test their neurological abilities with a range of games. My son had interned with Bruce, and we’d been impressed with his novel approach.

Fabio and Bruce met, and then we spent an hour together each week for the best part of a year, figuring out if we could use Bruce’s app to empower patients to track their symptoms, donate their data to medical researchers, and accelerate progress in defeating the disease.

During this period Ethan Basch, a leading neuro-oncologist, published research suggesting a relationship between cancer patients who actively tracked their symptoms, with clinicians who responded speedily, and improved outcomes. We had our proof of concept.

By now, I’d met a wide range of people directly affected by the disease, on social media. I worked with a friend whose husband has the disease, and together we produced a survey asking patients what symptoms they wanted to track. Fabio inputted the symptoms he had his colleagues were keenest to include. We submitted the final result to what in the US is called an “Independent Review Board”, and in the UK “ethical approval”. This provided assurances to patients and researchers that we were taking great care care to treat their data carefully.

In March 2018 OurBrainBank was born. We are a non-profit, with a mission to move glioblastoma from terminal to treatable, powered by patients. We go live in the UK on 3 December, International Disability Day.

We have collected more than 10,000 data points, have over 500 patients tracking their symptoms, have exhibited at the Society of Neuro-Oncology and American Society of Clinical Oncology. We have a fantastic board including patients and carers, and a multi-disciplinary team of advisers.

Patients are desperate. The internet means we share what we’re doing with each other, all around the world. Many people in the UK want the app, and we’re delighted now to be able to offer it. We’ve got demand from Australia, Singapore…. People want to feel in control, and glioblastoma takes that away from us. Tracking symptoms means that we get to decide how we’re feeling every day, not the disease. That’s empowering. Donating our data to medical researchers means we’re contributing to turning this disease around. That’s empowering too. Getting to know each other, to collaborate and create campaigns in the face of adversity – that’s making change.

Glioblastoma is a rare, highly aggressive, heterogeneous disease. Finding a cure will make it much easier to crack all cancers.

I’m confident I’m getting the best treatment in the world. I want everyone to be able to say the same.

And yet.

My cancer came back a couple of months ago. I was sitting at the gate in Heathrow, about to board a plane to New York. I started to sense a flickering in my right eye. I waited a minute to see if it would go. But it didn’t, and I felt a dull certainty that the cancer was active.

I called Fabio and he suggested I take extra anti-seizure meds, and if the flickering calmed down, get the next flight.

And, 24 hours later, an MRI back in New York confirmed my suspicions. I had my second brain operation and immediately embarked on research into the best options to treat recurrent glioblastoma.

There are very few options. I am lucky enough to be on what I think is the best. Those 10 billion bits of the adapted herpes simplex virus have been inside my head for just over a month. The treatment was designed by Dr E. Antonio Chiocca of Brigham Women’s Hospital, Dana-Farber in Boston. I’m being treated by Dr. David Reardon, a goliath in neuro-oncology. They both seem to spend their lives at work, calling me at pretty much anytime, eager to ensure I understand what they’re doing. Remarkably, they seem to be fabulous human beings, as well as seriously wonky scientists.

So far, so good. I’m incredibly unlucky to have this disease, but incredibly lucky to be able to access these trials and clinicians. I’ve been able to do that not just because I live on the East Coast of the US, not just because I have good medical insurance, but also because I’m a natural-born campaigner, married to a journalist well versed in research and asking difficult questions to get at the best answers.

This is what we call patient power. Channelling our fears into productive endeavours. If today I feel good, am able to spend my time productively, contribute to generating interest and momentum in turning this disease around, then perhaps today I am cured. Who knows about tomorrow? But, then again, that’s the same for all of us. Today, life is good.

The OurBrainBankUK app will go live on 3rd December. Patients and caregivers can download the app from the App Store or Google Play, and register using the code OBBUK.

Portraits for Tortoise by Maria Spann