WHEN Amber Cunningham-Rogan was in her final year at university, she thought her bleeding gums were a straightforward dental issue.
She might have simply been brushing her teeth a bit too vigorously, or perhaps have a mild case of gingivitis, the 21-year-old believed.
But a routine check for suspected gum disease – which affects almost half of adults in the UK – instead marked the start of a life-shattering journey.
Amber, from St Andrews, Scotland, was diagnosed with chronic myeloid leukaemia (CML) – a rare, lifelong blood cancer that usually affects people over the age of 60.
“I initially thought I was just brushing my teeth a bit too hard, and then that I potentially had gum disease,” she tells Sun Health.
“Had I not listened to my body and pushed for answers, things could have been very different.
“I’m a powerful reminder that leukaemia isn’t just an older person’s disease and that recognising the signs can be the difference between life and death.
“I look ‘well’ now so people assume I’m cured but CML is chronic and something I live with every single day.”
There are around 840 new CML cases and 224 CML deaths every year in the UK.
About 80 per cent of patients live for five years or more after being diagnosed, but survival rates drop massively for those whose cancer is more advanced.
Amber, now 26, was studying marketing management at the Edinburgh Napier University when she started to notice some unusual symptoms.
She was tired all the time, kept getting ill and was getting a strange numbness and tingling feeling in her hands and legs.
For several years, Amber visited her GP but tests and scans always came back normal so neither she nor her doctor were particularly concerned.
The bleeding gums puzzled even her dentist, who treated her for gum disease but couldn’t explain why her otherwise healthy gums wouldn’t heal.
She now knows bleeding gums can, in rare cases, be a symptom of leukaemia.
“I hadn’t experienced anything that screamed ‘cancer’, but for years, I’d been going to the GP with symptoms that didn’t quite make sense,” Amber says.
“I was constantly tired, catching infections more often than normal, and then came a strange numbness and tingling in my hands and legs.
“Spinal scans and MRIs came back normal. It was frustrating – I knew something wasn’t right.
“One particularly bizarre symptom was bleeding gums.”
I ran out with a sick bucket humiliated and exhausted
Amber Cunningham-Rogan
Around the same time, she was referred to haematology at Ninewells Hospital in Dundee for haemochromatosis (iron overload), a hereditary diagnosis.
The consultant said it could just be a reaction from having a cold or recent infection but he had a hunch to do further testing.
Routine blood tests revealed abnormalities and a slightly high white blood cell count, and after repeated tests she underwent a bone marrow biopsy.
A week later, in the middle of exam season, Amber received a call to tell her she had CML and needed to start treatment immediately.
“Everyone was pretty sure because of my age, and health, it wouldn’t be anything cancer related,” Amber says.
“I am very grateful to my consultant at Dundee Ninewells for pushing for further testing or my outcome and treatment could’ve been much worse.”
Amber, from St Andrews, was later diagnosed with leukaemia[/caption]
Despite her health battles, Amber graduated from university with first-class honours[/caption]
Because she was still studying, Amber struggled to pay for essential travel costs to hospital appointments, so the Hardship Fund from Leukaemia Care stepped in.
She began daily oral targeted therapy straight away, but the side effects were brutal.
“I was vomiting, had severe bone pain, migraines, rashes, hair loss, extreme fatigue and anaemia,” Amber says.
“One episode of heart palpitations even sent me to A&E.”
She moved back home to St Andrews to cope, but was determined to graduate.
Six months later, she had completed her degree with first-class honours and one of the highest dissertation marks of her year, which she dedicated to her late father.
After six months of treatment, Amber achieved what’s known as a deep molecular response, meaning the cancer was undetectable at a certain level – though treatment would be ongoing.
She still lives with fatigue, bone pain, headaches, and skin problems, and her sheer exhaustion sadly forced her to give up her unconditional place on a law degree programme, which she had worked so hard to obtain.
WAITING GAME
Instead, Amber works part-time from home, often feeling out of step with friends who are travelling or starting their careers.
“I can’t do any of the things I used to enjoy – netball, going to the gym, socialising – and even part-time work is hard.
“One night, trying to feel normal, I went to the theatre with friends, only to be hit by intense nausea mid-performance.
“I ran out with a sick bucket humiliated and exhausted.”
One of the hardest things, she says, is the waiting.
“So much of my life feels like waiting,” Amber adds. “Waiting for results. Waiting to see if the fatigue will improve. Waiting to feel well enough to plan for the future.
“Every day is a careful balancing act.”
The phases of chronic myeloid leukaemia
CHRONIC myeloid leukaemia (CML) is a type of blood cancer which affects the blood and bone marrow. It tends to develop very slowly.
After testing, doctors will be able to tell you how far your CML has developed.
For most types of cancer, this is called staging, and this usually describes the size of the cancer and how far it has spread.
CML is slightly different. Instead of stages, doctors use the term phases.
- Chronic phase
- Accelerated phase
- Blast phase
To determine the phase, doctors look at the number of immature white blood cells called blasts using a blood or bone marrow test.
They also examine the number of white blood cells and platelets in your blood, and leukaemia cells to check for changes to chromosomes.
The chronic phase is when the cancer is stable and still developing slowly. Most people are in this phase at diagnosis, though not everyone will have symptoms.
In the accelerated phase, you have more obvious symptoms, such as tiredness, weight loss and a swollen tummy.
The blast phase is when leukaemia transforms into acute leukaemia, usually acute myeloid leukaemia.
You can feel quite unwell and your symptoms could be troublesome. Your spleen is often enlarged.
Thankfully, Amber has found connection and support through residential programmes for young people with cancer, including Flynne’s Barn and the Ellen MacArthur Cancer Trust.
Online support groups, especially the Chronic Myeloid Leukaemia UK & Worldwide Facebook groups, have also been a lifeline.
She credits Leukaemia Care’s patient information booklets for helping her manage side effects like nausea and fatigue, and she has raised more than £2,000 for cancer charities to help others going through the same hell.
“There is a glimmer of hope,” Amber says.
“I’m now a hopeful candidate for trying to go treatment-free.
“To be eligible, you must sustain a deep molecular response over time, and everything must be carefully assessed.
“There’s a 60 per cent chance of relapse within the first six months – but if you get past that point, the relapse rate drops significantly.
“Withdrawal symptoms are common, but I still want to try.
“For me, stopping treatment isn’t just about the meds, it’s about trying to get my life back.”
‘I can’t do any of the things I used to enjoy – netball, going to the gym, socialising,’ Amber says[/caption]
Around 10,000 people are diagnosed with leukaemia every year in the UK.
But only 0.4 per cent of people are able to identify the four most widely reported symptoms, research shows. These include:
- Extreme tiredness
- Bruising
- Unusual bleeding
- Repeated infections
- Fever or night sweats
- Bone or joint pain
- Weight loss
- Pale skin
- Shortness of breath
- Swelling of your lymph nodes
- Feeling full in your tummy
Colin Dyer, chief executive of Leukaemia Care, says: “Amber’s story is a powerful reminder that leukaemia can affect anyone, at any age, and that the signs are often subtle and easy to miss.
“Too many people like Amber can spend months searching for answers before receiving a diagnosis.
“That’s why our #SpotLeukaemia campaign is so important — it helps people recognise the key symptoms and empowers them to seek medical advice sooner.
“Early diagnosis can make all the difference to treatment options and outcomes, and raising awareness is vital in saving lives.”
Fiona Hazell, chief executive of Leukaemia UK, adds: “Many people aren’t aware of the signs and symptoms of leukaemia until they or someone they know is diagnosed.
“That’s why we are so grateful to Amber for sharing their story and helping to raise awareness of the cancer.
“Early diagnosis saves lives, so we want to make sure more people are aware of the signs and symptoms and know to contact their GP to ask for a full blood count test if they’re experiencing them.
“Together, we can stop leukaemia devastating so many lives.”