A young cancer patient’s appeal for his peers to consider signing up as blood stem cell donors has had potentially life-saving results.
Ben Doyle, aged 22, spoke out on iomtoday in September 2011 about his fight against multiple myeloma in the hope it would inspire young people to donate.
The Northumbria University nutrition student’s wish came true. It inspired father of two Neil Kelly to attend a donor recruitment drive by the charity Anthony Nolan that month.
Then in June last year Neil found out he was a possible match for a blood cancer patient, and after further tests showed he was a 100 per cent match, he donated just under six million stem cells at a London clinic in October.
Neil, of Farmhill, said the whole experience had been about chains of events.
‘Ben had got ill, and received treatment,’ he said. ‘Ben felt motivated to make an appeal to people to register with Anthony Nolan, and I read his story and acted on it.
‘Two sets of lottery numbers then came in and I was matched with another unfortunate individual who was also ill.
‘I can’t help but think that had Ben not made that appeal the guy who received my stem cells might not have found a donor, and might not be here today.’
Neil knows only a few details about the man he helped.
‘As far as I know he is doing well,’ he said. ‘It is not guaranteed that the donation will work, but if it does it has the potential to completely cure him, which would be a fantastic outcome.
‘I actually received a thank you card from him a couple of months after the donation. It had a short message in it thanking me sincerely for what I had done.
‘But by that time looking back it didn’t really seem like such a big deal. It wasn’t particularly painful, I wasn’t out of pocket at any point, and so I just look at it as an opportunity that I was fortunate enough to be given.’
Anthony Nolan is looking for people aged 16 to 30 to join the register. When Neil, now 33, joined, it was about six weeks before his 31st birthday.
He said joining was ‘very easy’.
‘I just had to fill out a short personal details and medical history form, and then spit into a test tube,’ he said. ‘A short while later I got a card in the post with my donor number, which went in my wallet, and didn’t think much about it.’
He then found out in June 2013 he was a possible match for someone with blood cancer and was given the choice not to proceed, or to have a further test to establish whether he was a suitable match.
A few days later, Neil received by post about nine vacutainers. He took these to his GP so they could be filled with blood, and then posted them back.
‘Then I waited to hear. It took a couple of weeks, but I got a phone call explaining that I was a 100 per cent match for someone who was very ill, and so did I wish to proceed.
‘At that point the realisation hit me. Someone was very, very ill, and they were potentially going to die.
‘Thoughts go through your mind as to who it might be. It could be a child with their life ahead of them. Like me it could be a parent with a young family.
‘Regardless of who it was it was a very easy decision for me. I was going to do it because, going back to the lottery analogy, on this occasion I was one of the two people holding the winning balls.’
Anthony Nolan paid for Neil and his wife Nicola to go to London to a private clinic in Harley Street, London, for a medical examination and tests.
He had a general medical, gave blood, had an ECG, chest X-ray and then answered questions with a professor who was responsible for the department.
They were also shown round the donation area.
A week or two later he was then given the green light to proceed and the dates were set for two days in October.
For peripheral stem cell donation, a drug (GCSF) has to be taken for four consecutive days to mobilise the stem cells from the bone marrow and get them to circulate into the blood.
This was administered by injection by a nurse.
The side effects of GCSF are described as mild flu like symptoms, and Neil felt these by day three and four, taking paracetamol to sort out aching bones.
At the clinic, blood was drawn out of his left arm and then filtered for the stem cells before going back in his right arm.
‘When it starts it’s quite a weird sensation seeing blood going out of you and then back in, but after a while you get used to it,’ he said.
‘In fact the only downside is that you have to sit still for four hours connected to the machine, which apparently costs about £250,000.
‘But there is a TV, and an endless supply of drinks which is nice, until your desperate to go to the toilet, but can’t.’
While there, an Anthony Nolan volunteer spoke to him about his role visiting people donating cells as well as travelling the world transporting donated stem cells from hospital to hospital.
The aim was to collect five million stem cells, but Neil donated 3.89 million.
It meant he had to go back the next day, after being given another injection of GCSF to stimulate more cell production, to donate the remainder.
‘I was told that I might feel tired afterwards, but I didn’t. I was exhilarated. I had done my bit. I was told that the recipient would receive a very high dosage of chemotherapy to kill the cells in their blood, and then my stem cells would be injected into their blood.’
He urged anyone in the right age range to register.
‘Okay you get a few needles poked into you, but when you consider that the potential recipient of your stem cells faces the prospect of hideous chemotherapy treatment, and potentially losing their life, the quick scratch from a couple of needles is a very insignificant sacrifice to make to not only give them a chance of life, but to be able to look yourself in the mirror and say “I might have saved someone’s life”.’
Ben’s illness was identified by chance, when he broke his arm the night after his 18th birthday.
An X-ray showed he had a solitary cytoma, which had weakened the bone and made it break more easily.
In June 2011, he had an autologous stem cell transplant, which means his own stem cells were used.
For this, he spent three-and-a-half weeks in the Royal Liverpool Hospital.
This kind of transplant is the first step for patients with multiple myeloma, a blood/bone cancer, similar to leukaemia.
If it didn’t work, or the multiple myoema returns, the next step would be an allogeneic stem cell transplant, which is one from a donor.
Ben, of Saddlestone, Braddan, described himself as still in remission and ‘doing great’.
‘I don’t think about being ill or what I had to go through in the past.
‘For me, I feel that it’s something that I’ve overcome and put behind me, and now I’m only concentrating on my future.’
He has check-ups every four to six months to check the levels of various chemicals and proteins in his blood to ensure everything’s fine.
• There are 1,326 island residents that are active on the donor register.
The next recruitment event is due to take place at Appleby’s office, and is provisionally scheduled for early in May.
To join the register, you must be aged between 16 and 30, be in good health, weigh over 7st 12lbs (50kg) and have a body mass index (BMI) lower than 40.
In particular, more young men are needed. They produce more stem cells than women and are six times more likely to donate, but make up just 11 per cent of the register.
For more information about Anthony Nolan, visit www.anthonynolan.org or call 0303 303 0303.