HEALTH
Ironman Peter
McCleave’s plight
highlights the
national shortage
of stem cell donors,
writes Luke Mintz
Is there a lifesaver
out there for me?
P
eter McCleave was
unconcerned when his
limbs started to ache. An
investment banker, he
had recently moved from
London to the quaint
village of Bunbury, Cheshire, with his
wife and two young sons. Enjoying
the fresh air of their new rural life,
he decided to get fit by taking on
the Ironman challenge, a 140-mile
triathlon. For nine months, he trained
every day, jogging, swimming and
cycling around the picturesque
greenery near his home. He was not
surprised, then, when he started to
feel sore.
“I felt tired, I was picking up a few
infections. But I thought it was just the
training,” recalls McCleave, 41.
He completed the race in September
2016; a family photo shows him
waving his arms in exuberation. But PAUL COOPERhits you. I just went through all the
emotions. I’ve got two kids who I
didn’t want to inflict this upon, and
a wife who I didn’t want to think
about forming another relationship- someone stepping into my role as
a husband and dad. That’s where it
takes you. But then I had to get a grip
and take control.”
Peter and his wife, Jenny, have
tried to shelter their children – Max,
nine, and Seb, six – from the “gory
details” of his condition: “We make
the trips to the hospital fun, we
have picnics, the nurses give them
biscuits. When my hair fell out, they
thought it was hilarious because I
looked like Jonjo Shelvey, one of
their favourite Newcastle players.
One of Max’s friends in school asked
if I had cancer, and that’s when we
had to explain that yes, I did, and
what it meant. As long as I’m still
able to play football and keep life as
normal as possible, then they’re OK.”
Upon diagnosis, McCleave was
told he had seven years to live unless
he could be treated with a stem cell
transplant – previously known as a
bone-marrow transplant.
Stem cells are “master” cells that
can develop into a variety of different
cells – those in the bone marrow
turn into blood cells. The treatment
involves chemotherapy that destroys
most of your white blood cells and
leaves your immune system a “shell”.
Stem cells from a healthy donor
are then pumped into their bone
marrow, from where – it is hoped – a
new immune system will flourish,
and destroy the cancer cells. Of those
myeloma patients given a transplant,
about a third make a full recovery.
The challenge is finding a match. A
donor must share a sizeable chunk of
the patient’s DNA, but even your own
sibling has just a one in four chance
of being a match. None of McCleave’s
relatives – not even his younger
brother – were found to be suitable.
Now he hopes to find a donor from
the stem cell register. But just
13 million people across the globe
(about 0.4 per cent of the population)
have signed up for it – much lower
than the 37 per cent of English adults
who are registered organ donors.
As a result, four in 10 blood cancer
patients in the UK are unable to find
a stem cell donor.
Signing up simply involves
sending off a saliva swab in the post,
but Dr Manos Nikolousis, director
of stem cell transplantation at Heart
of England NHS Trust, says long-
held myths are discouraging people.
When we hear the phrase “bone
marrow transplant”, he says, our
minds picture an immensely painful
needle going straight through our
bone. But the stem cells are usually
donated through a simple blood
transfusion: a sample of blood is
taken from one arm and the stem
cells are extracted in a machine.
Some patients get lucky – Oscar
Saxelby-Lee, a five-year-old with
leukaemia, made headlines earlier
this year after his family launched
a public appeal for a donor, and
thousands queued in the rain at
his local school to be tested. He
eventually received a transplant in
June and is said to be feeling well.
Patients usually need to share
an ethnicity with their donor, and
McCleave’s unusual heritage makes
matters difficult; only 40,
other people in the world share his
Chinese, Portuguese, Irish, and
English ethnic mix. Indeed, with
white Caucasians making up 80
per cent of the global registry, the
NHS is keen for more donors from
African-Caribbean, South Asian and
Middle Eastern backgrounds.
To boost his odds, McCleave
launched a campaign with the
charity DKMS to sign up 10,
people to the UK’s register. So far,
they have signed up 25,000 and the
campaign has found matches for five
blood cancer patients; unfortunately,
McCleave wasn’t one of them.
Charities and health authorities
are exploring ways of getting
more people on to the stem cell
register. Some British campaigners
recommend an “opt-out” system,
where everybody is put on the
register unless they specifically
ask not to be – a policy the UK will
introduce for organ donation next
year. Others are excited by the Israeli
model, known as “don’t give, don’t
get”, where those already signed up
to the organ donation register will
be prioritised if they ever need a
transplant themselves. The number
of new monthly registrants more
than doubled after the policy was
introduced in 2010.
McCleave is aware that his time
may be limited; he has tried three
different types of chemotherapy, but
each stopped working after a short
period. Recently, he was told that his
cancer might be mobilising again.
“You ride this roller-coaster of
doctors’ checks and tests, and when
you think things are going well,
it can come and kick you in the
backside. I have belief that there is
a donor out there. I’ve just got to
find them.”‘I just
went
through
all the
emotions.
But then I
had to get
a grip
and take
control’
just two days later, he came down with
a “nasty mix of infections” including
pneumonia and Legionnaires’, and
took himself along to the Countess
of Chester Hospital. After a full-body
CT scan, he was called to an urgent
meeting with a doctor.
“I sat down and the doctor said:
‘We suspect you’ve got myeloma.’ I’d
never heard of it, so my reaction was:
‘OK, what can I do to get it cleared
up?’ Then he said it was incurable.
My hearing just shut down and my
head sort of imploded. I lost my focus
completely. I wasn’t really listening
to what the guy was saying and I just
made my excuses to leave.” Myeloma
is a blood cancer that affects around
17,000 people in the UK.
McCleave says the weeks after his
diagnosis were bleak: “At night, when
you’ve got no one else but your own
head to contend with, that’s when itYou can join the
stem cell register
on the DKMS
website at:
dkms.org.uk/en/
register-nowBattler: Peter
McCleave finishing
his Ironman race in- Shortly after,
he was diagnosed
with blood cancer.
Now he wants to
find a stem cell
donor and has
launched a
campaign to boost
the donor register.
Below, with his wife
Jenny and children
Max and Seb
20 ***^ Monday 26 August 2019 The Daily Telegraph
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