A London ‘data whizz’, diagnosed with leukaemia, is appealing for more young people to sign up as stem cell donors with blood cancer charity Anthony Nolan, after being told that there is currently no one on register who could save her life.
Talia Tosun, 24, is in urgent need of a stem cell transplant but her Turkish-Cypriot heritage means it’s more difficult for her to find a match.
Talia was diagnosed with acute lymphoblastic leukaemia, a type of blood cancer, in May. The diagnosis came when she was enjoying life as a young Londoner, living in Stoke Newington and working for a tech company.
Talia said: “I started to feel so tired in the weeks leading to my diagnosis that I wasn’t myself at all. I’m usually very active and excitable but found I just wanted to stay home and sleep all the time. In the days leading to diagnosis my skin began to turn yellow and waxy.
“As well as an overwhelming fatigue, I was having night sweats, fevers, bone and joint pain, blood clots from the mouth and rashes.”
Talia was initially diagnosed at her local hospital Homerton and has spent brief periods as an in-patient there while being treated by UCLH.
Talia said: “When I was first diagnosed, I went into shock. I find afterwards very difficult to remember clearly.
“My treatment started immediately. I was told that due to the rapidly developing nature of ALL, all treatment needs to be started as soon as possible.”
Talia underwent a gruelling course of chemotherapy early this summer. She had been made aware that if chemotherapy was unsuccessful, she would be in need of a stem cell transplant.
At the end of August, Talia’s consultant confirmed that the chemotherapy hadn’t worked in the way they’d hoped, and Talia’s best chance of recovery was through a stem cell transplant. The search immediately began to find Talia a matching donor.
“So far I have received intensive chemotherapy and antibody treatments.” Talia explained.
“I will also receive more of this as well as radiotherapy in the lead up to transplant.
“The side effects of treatment have been really tough in some instances, but the mental and emotional side of treatment and the process is far more testing in my opinion.
“We are unsure of the exact timings as of yet, but the absolute earliest I will be able to function ‘normally’ in society is April 2020.”
Talia’s only sister, Lola, 21, was tested but unfortunately, she was not a match. The next step was to search for a matching unrelated donor on the Anthony Nolan register, but that was also unsuccessful.
In Talia's situation, those most likely to be a match are Turkish, Turkish Cypriot, Greek Cypriot, or Middle Eastern, aged over 16, and in good health.
Currently, only 69% of patients can find the best possible match from a stranger, and this drops dramatically to 20% if you're a patient from a black, Asian or ethnic minority background.
“I was told there was no match on the same day I was told my second, and more intensive round of chemotherapy was also unsuccessful” recalled Talia.
“It was particularly difficult due to the double blow, my family were also in the room and got very emotional, which made it even harder.”
“My family have been devastated by the diagnosis, it has been difficult beyond words. However, despite how upset they are about the situation they’re supportive as ever. They’re amazing.”
Talia has spent the bulk of her time since diagnosis in hospital.
“My mum has stayed with me for the vast majority of my stays in hospital. She’s amazing. It has been very difficult at times but her love and support during this trying time is invaluable” said Talia.
Treatment has been difficult for Talia. “Physical side effects from hair loss to difficulty walking can make you feel as if you have lost who you are as a person, which for me has been the toughest part. Not every day is like this though, some are good, and some are bad” she said.
The huge support network of friends, family and colleagues have helped Talia through the past few months.
“A lot of my friends and colleagues have been incredible and supportive beyond belief. Due to the intensity of the treatment and the amount of time I spend in the hospital, it has been difficult for me to maintain my social life to the extent it was before diagnosis. That being said, I have plenty of visitors and the effort some people have made during this time is genuinely heartwarming” said Talia.
“A lot of my friends, family and colleagues have joined the register. I’m eternally grateful for their support and what they’re doing not just for me, but for other people like me.”
Blood cancer charity Anthony Nolan is supporting Talia and her family organise events around London to recruit more potential donors onto the stem cell register.
When asked what she’d like anyone considering joining the register to know, Talia said: “By signing up to the register you’d be giving other young people - probably very similar to yourself in many ways - a second chance at life.
“You’d be a hero!”
Sarah Rogers, Regional Register Development Manager at Anthony Nolan, said: “Talia was a regular 24-year-old, whose life was put on pause by a diagnosis no one would wish for.
“She’s one of the five people a day who start their search for an unrelated donor. A cure could be out there for her and we will do all we possibly can to help her find her match.
“Every single person who signs up to the register has the potential to give hope to someone like Talia who is in desperate need of a lifesaving stem cell transplant. We urgently need people from black, Asian and other minority ethnic backgrounds to sign up, to ensure we can find a match for everyone that needs one.
“Together, we can work towards a future where nobody is waiting for their match.”
Anthony Nolan recruits people aged 16-30 to the stem cell register as research has shown younger people are more likely to be chosen to donate.
They also carry out ground-breaking research to save more lives and provide information and support to patients after a stem cell transplant, through its clinical nurse specialists and psychologists, who help guide patients through their recovery.
It costs £40 to recruit each potential donor to the register, so Anthony Nolan relies on financial support.
Find out more about Anthony Nolan at www.anthonynolan.org/SwabForTalia