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In January 2012, Brian – then in his late 30s – started noticing something was wrong. “I was getting breathless doing simple chores and walking up small inclines,” he told us. “There was a history of heart disease in my family, so I went to see my GP.”
“He sent me for a blood test, which showed I had severe aplastic aneamia. I was admitted to hospital right away.”
“The whole process was such a whirlwind,” he recalls. “Just after my diagnosis, my dad passed away. I barely had any time to grieve.”
Three years later, Brian is doing very well. He’s recently heard the words, “you’re in remission.”
And as well as crediting his oncologists, he owes a huge amount to the cheek cells of an anonymous 41 year-old from Germany.
In the blood
Many types are curable, and survival is at an all-time high. But the treatment is no walk in the park: many people will need chemotherapy and/or radiotherapy. But some will need high-dose, aggressive chemotherapy, designed to obliterate their immune system – including the rogue cells driving the cancer.
This harsh treatment creates a new challenge. Our immune system is absolutely essential. So to regrow it, patients need a ‘stem cell’ donation. Stem cells are found in our blood, and, although rare, they have almost magical properties – they can regrow an entire functioning immune system in a matter of weeks.
Sometimes they can be donated by a close family member. But more often than not, even family members can’t help – there’s only a one in four chance of a match with relatives.
So as a last resort, doctors can turn to a unique resource that’s been slowly building over decades – the UK Stem Cell Registry.
And because of the work of an organisation called the World Marrow Donor Association, the UK’s registry is linked into an international network of registries, allowing doctors in the UK to search information from more than 25 million people worldwide.
And it’s this network of registries – and the people who donate their blood stem cells to it – that’s helping more and more people like Brian to beat their cancer.
The cheek of it
Mike is 23 and lives in Suffolk. One morning in 2012, something on telly piqued his interest.
“I caught the tail end of a campaign on a morning show about eighteen months ago. I only heard a small bit, but it was from a charity called Delete Blood Cancer UK. It said I could be someone’s lifeline.”
Charities like Delete Blood Cancer UK and Anthony Nolan run schemes to allow members of the public, like Mike – and you – to send a sample of their cells – collected via a cheek swab (or saliva sample, in the case of Anthony Nolan) – to register.
The cells are extracted, analysed, and data about particular molecules on their surface – called HLA proteins – recorded into a database anonymously.
And if the HLA proteins subsequently prove to match those of someone diagnosed with cancer, it can end up saving their lives.
“It was really easy to sign up to the register. You enter your details on the website and you’re sent a sample pack,” says Mike.
The pack contains what looks like a long cotton wool bud, which you rub over the inside of your cheeks, pop in an envelope, and send away for analysis.
“It only takes a few moments.” Mike says. “At the time I was thinking hopefully I can help someone else out by doing this. I didn’t imagine what getting swabbed was going to lead me to.”
Give blood, give life
Just three weeks after registering, Mike received a phone call.
“I found out I was a match almost immediately. Sometimes it can take a lot longer, some people have been on the register for years before they are called, and some people are never called.”
Mike was given a series of injections, to encourage his body to produce more blood stem cells. And then he was hooked up to a machine for a couple of hours, for some of his stem cells to be extracted from his blood.
“The process was a bit like donating blood,” he recalls. “I was a bit nervous at times but I kept thinking, if this person who needs a blood stem cell donation was a member of my family or my friend, I would move heaven and earth to find a donor.”
Although Mike has never met the person whose immune system he helped grow, the donation schemes allow this to happen in time.
“I can find out how my recipient is doing after 6 months and, after that, we’re able to send cards anonymously. If we both decide we would like to meet, then that’s a possibility further down the line.”
“It is a great feeling, to know that I’ve given someone hope. I often think about the other person and how they’re doing.” he says.
Likewise, Brian has never met his donor either – but perhaps never will. “I have asked about contacting him but, from what I’ve been told, the relevant agencies have so far been unable to get in contact with him.” he says.
“But the whole experience has changed my outlook on life. I believe that, as I was so lucky to find a match, that others should have the same chance – which is why I help promote awareness of blood stem cell donation wherever I can.”
As well as promoting awareness, Brian now works as a patient co-ordinator for Wessex Cancer Trust in their Isle of Wight Cancer Support Centre, using his own experiences of cancer to help others.
And on the other side of the process, Mike feels similarly: “I think the most important message to get out there, is that a blood cancer or similar blood disorder could happen to anyone at any time or age. Blood stem cell donations can be a person’s final hope,” he says.
“I would like to see many more people registering and to be able to help that happen, in however a small a part is very humbling.”
Now your turn
Despite there being more than 25 million registered donors, there’s a catch: our biological complexity and individuality means being a match for someone else can still be very difficult.
In the UK, about half of those seeking a matching blood stem cell donor never find one. According to Delete Blood Cancer UK, that works out at about 1,000 people a year who are never lucky enough to find a match – and a donation – that could save their life.
Every 20 minutes someone is diagnosed with a blood cancer in the UK.
It only takes about five minutes to fill in the form.
What are you waiting for?