All posts by LizScarff

Are we doctors?

No. The people behind the fundraising campaign know nothing about medicine. We raised the money for the experts at Uppsala University because we thought that their promising treatment should be given a chance.

We rely on expert advice from medical professionals around the world. Every thing we do and write is checked and double-checked by doctors and researchers who are leaders in their fields.

iCancer has run a collaborative campaign, bringing ordinary patients and their families together with an international group of top scientists and pharmaceutical experts, in order to get a promising, yet abandoned drug tested in human trials.

iCancer hits its goal raising £2million

What started with a random group of people, brought together by the power of a good idea has culminated in the first campaign to crowdfund £2million for scientific research.

The iCancer campaign, started by author Alexander Masters, launched on October 5th  2012 to a storm of global publicity across social media, newspapers and online media.

Within four months we had raised £200,00 with donations coming from 4,000 people from Costa Rica, Thailand, Hong Kong, USA and more.

The campaign caught the eye of Vince Hamilton, an oil man, who has donated roughly £1.8million bringing our campaign to its goal of £2 million.

Like us, everybody who donated wanted to put people before profit. And every single donation, every tweet and Facebook share has helped us spread the word, secure more publicity and ultimately reach our goal.

We cannot thank you enough.

The full story was printed in the Telegraph today:



The Coopers half marathon

Liverpool Half Marathon 17 March 2013

By Glenda Cooper

In 2012 Dominic Nutt – Glenda’s husband and Gareth’s brother-in-law – was diagnosed with neuroendocrine tumour. You can read about his story here.

We decided we wanted to do something to help.

Gareth Cooper in training

So on 17 March 2013, we will both be running the Liverpool Half Marathon in aid of iCancer. We want to raise as much money as possible – so please sponsor us using the donation buttons on the side of the page.

Once you have donated leave a comment for Glenda and Gareth below.

Dom has been really lucky – he’s had excellent care at St George’s Hospital, London. We wanted to say thank you for that, and raise mone . At present there isn’t a cure for neuroendocrine tumour, apart from surgery and it doesn’t respond to chemotherapy or radiotherapy. Also because it is relatively rare, it doesn’t attract the same type of funding as better known cancers.

Sponsoring us is simple, fast and totally secure. It’s also the most efficient way to sponsor us as iCancer will receive your money faster.

Spicing it up

‘Anyone who knows the Coopers knows we are pretty competitive,’ says Glenda, ‘so to add a bit of spice to the run – and to make sure I get out training in this cold weather, I’ve decided to do the following…

‘For every minute that I run the race either over or under 2 hours, I’ll add 1% of the sponsorship money I raise

‘Gareth has said he’ll do 2%!  he’s trying to make me run even harder….!

‘So get out there and sponsor us – and make sure you let us know in the comments below how much you’ve given.

‘We have partnered with a US and UK charity to enable people to  a make a tax-free donation and, if you are a UK taxpayer, an extra 28% in tax can be added to your gift at no cost to you through Gift Aid.

‘We’ll be tweeting updates at @glendacooper and @GCoops83 and updating the iCancer Facebook page.’


Thankyou and what next?

Firstly we want to say a HUGE thankyou to everybody who has supported and donated to the iCancer crowdfunding campaign. What an incredible few months it has been!

Today (February 14th 2013) our crowdfunding campaign comes to an end and we’re really excited to announce that the combined donations through both indiegogo and direct donations to the University we have reached a total of $258, 508.

We simply cannot thank you enough.

We haven’t reached our goal yet – but even though the crowdfunding campaign has come to an end our campaign to raise the money hasn’t.

We have been working hard behind the scenes and we are now able to channel donations through two charity organizations. The American Friends of Uppsala University in the US and the Anglo-Swedish Society in the UK. This will give  US and UK tax payers the possibility to receive tax deductions when donating to the campaign.

So what happens next? And what happens to the money raised so far? Prof Magnus Essand, virus creator from Uppsala University has answered all your questions below.

What will happen to the money raised so far?
Since iCancer was launched, so far we have raised an incredible $258, 508 via indiegogo and direct to the university.

We intend to use the money for a phase I clinical trial for patients with neuroendocrine tumours (NETs) using our neuroendocrine-specific virus.

We have drawn up a detailed budget and worked out we will need approximately £1,500,000 to be able to produce and test a clinical grade batch of the virus and perform a clinical trial for 20 NET patients.

The amount we have raised through crowd funding is fantastic and we are currently discussing with a potential donor to “fill in” what is missing to reach 1.5 million British Pounds.

We have also discussions with two other persons who might contribute larger amounts of money to the campaign. Please watch the iCancer website for more developments as soon as we can announce them…

The money raised so far is not enough for a clinical trial. What are you doing to further raise the funds?
We are channelling donations through two charity organizations (the American Friends of Uppsala University in the US and the Anglo-Swedish Society in the UK) in order to give US and UK tax payers the possibility to receive tax deductions when donating to the campaign.

We are planning a big event in London on the 5th March at the Swedish Embassy to further promote the campaign to donors.

We are also really pleased to announce that lots of people are still holding fundraising events to do all they can to raise money for iCancer.

What will happen if the funds are never raised?
We are confident that we can raise the funds. We have set ourselves the goal to raise the money needed during the entire year of 2013. The money will be kept in a secure account and will not be touched until we have obtained sufficient funding to go ahead with the clinical trial.

If for some reason we are not able to reach the goal and not get sufficient funding to conduct a phase I clinical trial, the money will still be spent on research for neuroendocrine tumors aiming at reaching benefits for NET patients. The main objective within this research program at Uppsala University is to develop new treatments for neuroendocrine cancer based on virotherapy and immunotherapy.

Finally…we want to say thank you
On behalf of all the iCancer team, and our team at Uppsala we want to say how inspired and touched we have been by the very generous donations that so many people have given.

From £5 to £5,000, every donation has made a difference. There’s been no budget, no rock concert, no celebrities like you usually see in fundraising – but this amazing amount has come in just by ordinary people giving money themselves and asking their friends.

This has not only raised a staggering amount so far -and has made it possible for us to go to other places for donations as a result.

We can’t say thank you enough.

We look forward to updating you on the work that we are doing to try to combat NETs – and to let you know about the trials.

Watch this space!

iCancer in the media

The press coverage for iCancer has been phenomenal. With everybody from The Telegraph to The Financial Times to social media giant Mashable, to being nominated for Digital Campaign of the Week by Third Sector.We have added all the links below.

The Telegraph: The virus that kills cancer: the cure waiting in the cold.

The Telegraph: The cancer killer they won’t pay for

The Telegraph: Author appeals to Apple to fund cancer hope that could have save Steve Jobs.

The Telegraph: Dominic Nutt asks, ‘What price a life

The Irish Independent: A cheap and effective cancer treatment: so why is it sitting in a freezer in Sweden?

BBC Radio 4: Today programme debate with Magnus Essand. Saturday 1st September. (Sadly the link is now dead).

The Financial Times: Scientists offer to name cancer drug for 1 million (you need a subscription to read this)

The Financial Times: Science goes viral.

Macworld: Appeal for Apple to fund research into cancer that killed Steve Jobs.

Businessweek: Author tries raising money for cancer cure.

Mashable: iCancer Takes On Disease That Killed Steve Jobs

The Guardian: Blog: iCancer: closing the net around cancer by getting the public involved

Third Sector: Digital campaign of the week.

The Yorkshire Post: Cancer campaigners go viral.

The Metro: the UK’s daily newspaper.

The Drum: iCancer campaign aims to raise £2 million for cure to NET cancer which killed Steve Jobs

The Drum: As guerrilla iCancer campaign launches on anniversary of Steve Jobs death founding members speak with The Drum


Please read our FAQ



If this anti-cancer virus is so brilliant why is there no funding for it?


Pharmaceutical companies are interested in research only when it looks likely it will produce a profit. This research is some years away from that at this stage. Not only that, the Swedish research team placed much of their research in to the public domain, in order to help others with their research.

This act of altruism has meant that the Swedish team is unable to patent their research. This, in turn, means that pharmaceutical companies cannot guarantee that they alone will own the research at this stage and therefore profit from it.

Only when it has been trialled and developed further, can a new set of patents be applied – giving a drugs company sole ownership of the product, and a guaranteed profit.

The Swedish team has received grants from Swedish government funding and the Swedish Cancer Society (equivalent to Cancer Research UK). The grants cover the research to develop viruses for therapy but they are not big enough to run clinical trials with an advanced medicinal product where special rules apply (viruses falls under this category in Europe).


Independent expert Prof Alan Melcher talks about the science behind #iCancer

Prof Alan Melcher is a Cancer Research UK Senior Clinical Research Fellow and Professor of Clinical Oncology and Biotherapy in the Leeds Institute of Molecular Medicine.  Having qualified from Oxford University, he trained in clinical oncology in Cardiff, London and Leeds.

Having completed a PhD at the Hammersmith Hospital in London, he continued post-doctoral research at the Mayo Clinic, Minnesota, USA before returning to the UK in 2000.

He currently combines a clinical practice treating melanoma with chemotherapy, radiotherapy and biotherapies, with a laboratory-based pre-clinical and clinical research programme focused on novel immune effector cells and oncolytic viruses for the treatment of cancer.




The published scientific papers

Prof Justyna Leja and Prof Magnus Essand

By Prof Justyna Leja

My research focuses on development of new cancer therapies, where viruses are used as a novel anti-cancer drugs.

I did my four-year PhD studies under supervision of Prof. Magnus Essand and my work resulted in the development of what is known as an adenovirus that can specifically kill neuroendocrine cancer cells.

We have published four articles where we describe various ways of controlling and modifying the virus to kill cancer cells, leaving normal cells unharmed. Paper I describes the modification of viral DNA to make it multiply to kill only neuroendocrine cancer cells.

In paper II we describe how we protect normal, non-cancerous, cells from the virus. In papers III and IV we demonstrate how we modified the virus’ surface to improve its ability to infect and spread in tumours.

Our virus has a good efficacy in killing neuroendocrine tumours (NET) in mice. Our hopes are that this treatment will have significant effects for NET patients as well. The only way to find out if our virus can help cancer patients is to perform a clinical trial and to do so we need support from public.


A novel chromogranin-A promoter-driven oncolytic adenovirus for midgut carcinoid therapy.

Leja J, Dzojic H, Gustafson E, Oberg K, Giandomenico V, Essand M.

Clin Cancer Res. 2007 Apr 15;13(8):2455-62.


Double-detargeted oncolytic adenovirus shows replication arrest in liver cells and retains neuroendocrine cell killing ability.

Leja J, Nilsson B, Yu D, Gustafson E, Akerström G, Oberg K, Giandomenico V, Essand M.


Adenovirus with hexon Tat-protein transduction domain modification exhibits increased therapeutic effect in experimental neuroblastoma and neuroendocrine tumors.

Yu D, Jin C, Leja J, Majdalani N, Nilsson B, Eriksson F, Essand M.

J Virol. 2011 Dec;85(24):13114-23. Epub 2011 Sep 28.


Oncolytic adenovirus modified with somatostatin motifs for selective infection of neuroendocrine tumor cells.

Leja J, Yu D, Nilsson B, Gedda L, Zieba A, Hakkarainen T, Åkerström G, Öberg K, Giandomenico V, Essand M.

Gene Ther. 2011 Nov;18(11):1052-62. doi: 10.1038/gt.2011.54. Epub 2011 Apr 14.

Please also read our full FAQ

The cancer killer they won’t pay for – Telegraph

Steve Jobs, the former CEO of Apple who was diagnosed in 2003 with the same cancer as the iCancer virus
Steve Jobs, the former CEO of Apple who was diagnosed in 2003 with the same cancer as the iCancer virus

Published in the Telegraph
By Alexander Masters

Five years ago, Dido Davies, the wizard who advises me on all my writing and a brilliant editor, discovered she had a growth the size of a grapefruit on her pancreas. It was a neuroendocrine tumour, or Net: the cancer that killed Steve Jobs. NHS surgeons immediately performed an eight-hour operation to remove it. Two years later, the cancer was back and she began chemotherapy.

Meanwhile, I started searching the internet. Nets are relatively rare cancers, have few successful treatments, and come low on the list of research priorities. They are also comparatively slow-growing, which is why Jobs, the former CEO of Apple who was diagnosed in 2003, was able to invent the iPhone and the iPad. If he’d had ordinary pancreatic cancer, he’d have been dead before the MacBook.

To my astonishment, I tracked down two gene therapists in Sweden who had engineered a virus specifically to destroy this type of cancer. Photographs they’d published in leading medical journals showed Nets in mice melting away. Yet when I rang the lab, they told me they were going to throw the treatment away without testing it on humans.

Because Prof Magnus Essand and Dr Justyna Leja of Uppsala University had published the results of their work, they could not secure a patent for this “cancer-eating” virus. Without a patent, no business would fund the human trial, because there was no profit to be made. Two million pounds was all they needed – less than Apple earns in seven minutes.

Two month ago, I wrote in this paper expressing my despair and frustration. Only a proper human clinical trial can tell if this new treatment will eat up human tumours, too. If the virus works, it could benefit not just the tens of thousands of people with Nets worldwide, but other cancer patients as well, because it could be adapted to attack many types of tumour.

Two weeks after my article appeared, The Daily Telegraph ran a feature by Dominic Nutt. Dominic has worked for aid agencies in war zones and refugee camps around the world. He’s been shot at, bombed and kidnapped. Yet when his doctor told him in January that he had a neuroendocrine cancer and that he might not see his younger daughter’s first day at school, he broke down. After reading my article, he decided to go public about his illness in the hope of inspiring someone to come forward with that £2 million.

The next day Dominic and I began a campaign. If venture capitalists wouldn’t invest in this potential new therapy because of the lack of obvious cash returns, then we would take the cause to the people and raise the money by crowd-funding. Dominic contacted a social media expert, Liz Scarff, while I got hold of the Net Patient Foundation, and brought in a publicist friend. We held our first meeting on the balcony of a Wetherspoon’s pub in Victoria train station.

We’ve called it the iCancer campaign. It launches this Friday, October 5 – exactly one year after the death of Steve Jobs. October 5 is also my friend Dido’s birthday. Thank heavens, she is doing well.

‘Would I take an untested cancer treatment myself? Hell, yes!’

Dom Nutt diagnosed with a NET - the cancer the iCancer virus will target
Dom Nutt diagnosed with a NET – the cancer the iCancer virus will target

Published in the Telegraph

By Dominic Nutt

In January, I learnt I had the same cancer that killed Steve Jobs: a tumour that cannot be cured by drugs, by chemotherapy or radiotherapy. If it had spread I had only a 30 per cent chance of surviving to see my younger daughter Alethea’s first day at school.

Neuroendocrine tumours (NETs – also known as carcinoid tumours) are rare, so treatment for them has not advanced as it has done for common cancers such as breast and bowel cancer. My consultant could only advocate surgery, and hope he’d caught it early enough.

What I didn’t know then was that there is a potential treatment for this type of cancer, languishing in a deep freeze in Sweden: a so-called “cancer-eating virus”. Yet it seems the treatment may never see the light of day.Alexander Masters reported in the Telegraph magazine two weeks ago, in an article that has received international attention, that researchers have been unable to raise the paltry £2 million needed to take the treatment to clinical trial.

The thought that out there is something that could be investigated for a couple of million is difficult to come to terms with. I emailed Masters, to thank him for uncovering this story and – who knows – perhaps inspiring someone to come forward and fund the research. But I want to do more.

In my day-to-day job as a communications specialist, I tell other people’s stories, not my own. So it feels uncomfortable to write about myself and my family on such a personal and emotional level. But so little is known about NETs, so little invested in research, that I’ve decided to go public about my experience, in the hope of raising awareness, and maybe continuing what Alexander Masters started.

Before that New Year encounter at St George’s in south-west London, I was a relatively fit 44-year-old, whose Type 1 diabetes (which I developed as a teenager), had never held back my career flying in and out of war zones for international aid agencies.

Then, the week before Christmas, I developed a sharp pain in my lower stomach. My wife, Glenda, (who, armed with Google and a fertile imagination, is always diagnosing rare ailments) nagged me to see our GP. I went, just to keep the peace – and was rushed into hospital to have my appendix out.

The next day my surgeon told me that, surprisingly, there seemed to be nothing wrong with the excised appendix and I was discharged, still drunk from the anaesthetic and in pain, but armed with a sick note that would get me off washing-up duty over Christmas. There was nothing to suggest that my follow-up appointment in January was anything other than routine and so I went along to the hospital on my own. But I was harbouring a nagging doubt. And I wasn’t wrong. My consultant, Robert Hagger, told me they had found a 12mm tumour on my appendix.

“So, I have to tell my wife I have cancer?” I asked.

He said that technically it wasn’t called a cancer, but a neuroendocrine tumour. I can see his face now. Professional, calm, caring and concerned. Even then, drowning in fear and confusion, I liked and trusted Mr Hagger.

“But it is a tumour?” I asked. “And it spreads? And it might kill me? Forgive me, but I’m going to call it cancer. So what’s the treatment?”

That was when Mr Hagger had to explain there was very little that could be done.

NET is the umbrella term for a group of unusual tumours that develop from the neuroendocrine cells that are responsible for the production of various hormones such as adrenalin, insulin and serotonin. NETs can be benign or malignant. They may also release hormones but in an uncontrolled way.

Mr Hagger explained that once a NET has spread, it is called cancer. (It continues to be a technical nicety that passes me by. The subtleties of the terminology won’t save my life.) NETs are so rare that even a big teaching hospital such as St George’s only see a few cases annually. According to Macmillan Cancer Support just 1,200 people are diagnosed with NETs each year in the UK, although the incidence is increasing.

NETs can develop all around the body – in the lungs, the pancreas, and the bowel, for example, and this causes confusion. An NET in the bowel isn’t bowel cancer. In the case of Steve Jobs, it was widely reported he had a form of pancreatic cancer, for which the prognosis is often poor. But he actually had a NET in his pancreas. The prognosis for this is much better – if you have surgery early. However, it has been reported Jobs’s surgery was delayed and, if true, this may have contributed to his death at 56. This remains a matter of conjecture because he never spoke about his illness in detail.

My surgeon recommended a right-hemicolectomy, an operation to remove a section of my colon where the nearest set of lymph nodes to the original tumour was situated. Lymph nodes, located all over the body, are an important part of our immune system. They also act as jumping-off points for cancer cells to spread from a primary site.

Mr Hagger explained it like this: “I look at lymph nodes as being ‘filters of disease’. If you have a sore throat, the lymph nodes in your neck swell in response to the infection as the microbes are filtered through them.Lymph nodes “straining” disease and infections out from a particular part of a body may be a site where cancer cells can lodge.” So, lymph nodes ”catch’’ the cancers – and harbour them while they grow and spread.

He said he hoped that he’d find no disease in my lymph nodes; there were rarely any side effects from the operation, that I wouldn’t need a colostomy and I’d be out of hospital in six days. In the meantime, I’d have regular CAT scans, urine and blood tests. Because NETs can produce hormones in the blood, a rise in the levels of certain hormonal by-products, as they break down, can also be an indication of spread.

It was then Mr Hagger spelt out the statistics. If there was no spread to the lymph nodes I had a 90 per cent chance of surviving five years. If it has spread to the lymph nodes then that falls to 80 per cent. And if it has spread further, I had a 30 per cent chance.

Somehow I found myself outside the Macmillan Cancer counselling office in St George’s. I remember thinking: I feel sorry for the people who have to go in there – they have cancer. Then I remembered: so did I.

A kindly woman with a gentle voice asked me if I was OK. I wanted to fall at her feet and howl in pain. But I didn’t want to make a scene. “Yes, thanks, I’m just looking for the loo,” I muttered.

I’ve worked in refugee camps across the world. My job is to convey to others what is happening to people in the extremes of despair. At the time I was working for the charity World Vision, where I dealt with stories about starving and abused children. Yet during that five-minute walk from St George’s to my home in Tooting I had no idea what I was going to say to my wife.

I was angry. My father, an alcoholic, had never been around much when I was a child. I vowed that if I had children, I would never leave them. Having a family was a very considered decision. I wanted to be a good father, a strong presence who was always there for them. And now, I was faced with the real possibility that I could be torn away from them – with no control, no choice. This was not how I’d planned it.

Faith, three, and Alethea, who had just turned one, were belting around the kitchen, immersed in one of their interminable play races as I stood by the fridge and tried to put into words what had just happened. I couldn’t.

Glenda had to ask me several times before it became clear what I was trying to say. “So is it cancer?” she asked repeatedly. Then we put the girls to bed, cried, drank wine and ate all the chocolate and Haribos we could find. Life-changing moments can be mundane like that.

In those first days I couldn’t look my at daughters as they laughed and played, oblivious. I was consumed with the fear that I might soon desert them. I felt I was about to betray them.

Since then, my world has been turned upside-down: it is a world of blood tests, urine tests, CAT scans and a painful operation in February, in which 17 lymph nodes were removed. Further tests showed that the cancer had spread to one of them. Bad news. But I had done my own research and discovered, thanks to Lisa, a friend who works, coincidentally, as an oncology nurse specialising in NETs at another London hospital, that there is a specific and highly sensitive test for NETs. It is called an octreotide scan, a three-day extravaganza in which they inject you with a radioactive chemical that is absorbed by the NET. It complements the standard CAT scan because it can highlight some – not all – NETs when they’re still too small to be picked up by other tests, so – crucially – they can be removed before they take hold.

The team at St George’s considered I’d had sufficient radiological scanning but, to their credit, they immediately agreed to let me have this second scan when I asked for it. It came up clear.

I had another scan this week. This will be my life for the next five years: every time a scan is clear my chances look a little better, but until the five years pass, I can’t be sure. There is no good news in this business. I have a scan and the best I can expect is a “no cancer yet” result. The sword of Damocles still hangs over me. Cancer patients are never clear – they just aren’t dead yet.

Seeing Mr Hagger is always a bittersweet experience. He’s a great guy and I feel privileged to be treated by him. Each time he tells me I’m clear, I feel happy. Yet, each time I walk in, I know I may hear I’m about to die.

When I read about the Swedish virus I tried to keep calm. It’s hope that can be hardest to bear. And yet, maybe, just maybe, there is a treatment, even a cure, waiting for me – for all of us. Maybe the Swedish magicians will make this all go away for me, for Glenda and my girls.

Despite it all, here’s the thing: I feel lucky. Lucky to have met Mr Hagger. Lucky to be married to Glenda, for the love with which she surrounds me. But I also feel lucky because of the sheer randomness of events. I randomly had a stomach ache – Mr Hagger told me that the tumour would not have caused my stomach pain – and my wife persuaded me to see the doctor. I randomly had my appendix out and they found a tumour. I randomly have a friend who specialises in NETs and who told me about this specialist scan – and I managed to get that scan.

At the moment I feel bullet-proof. You may say I’m in denial, and I guess I am. One day, though, my luck may run out. If you asked me then whether at the moment I was told my tumour had spread, would I opt to take the untested virus myself? Would I risk all for the chance to see my daughters go to school, and to hold my wife’s hand as we celebrate our 10th wedding anniversary – instead of forcing them to watch me die, tubed up and in pain? Hell, yes!