28 Feb 2022

Why we need kinder and more effective blood cancer treatments: Iona’s acute myeloid leukaemia story

Iona was diagnosed with acute myeloid leukaemia (AML) in May 2021 when she was 22. Iona’s story is particularly shocking, as it was not her first experience of blood cancer. When she was 20, she was diagnosed with Hodgkin’s lymphoma and underwent successful treatment, she went into remission and seemed to be in the clear. She went back to her studies at the University of Leeds, ready to throw herself back into the life she had put on hold. 

 At a regular check-up eighteen months later, she mentioned that her back had been hurting her. Whilst the consultant said it was unlikely to be cancerous if that was her only symptom, she should contact her GP for a blood test if it continued. 

The next day, Iona woke up with severe abdominal pain. She called her GP and made an appointment for the following Monday. However, in the meantime the pain increased and eventually got bad enough for her sister to persuade her to go to A&E. 

Iona said, “My sister is a doctor, and when the blood results came back in A&E, she looked at them and immediately started crying. I put this down to her having been on night shifts and not having slept. She said the Marsden should be notified in case it was Hodgkin’s relapse, to which I replied that couldn’t be the case as I didn’t have any abdominal pain when I was diagnosed with Hodgkin’s. I was certain it was not related. 

As it turned out, the abdominal pain was found to be due to a kidney infection. However, the doctors had also noticed some anomalies in my blood tests and told me I should stay in hospital overnight whilst they ran some more tests. 

In the morning, a doctor from the haematology ward came to speak to me. He said they believed I had some form of leukaemia. I was in complete shock, still certain there was some sort of confusion.” 

Iona was then transferred to the Royal Marsden Hospital. Further tests confirmed that Iona had therapy-related acute myeloid leukaemia (AML), caused by the chemotherapy she’d had during her treatment for lymphoma. 

Thinking back on her symptoms, Iona said: 

“I was asked questions like “have you been getting hot or having night sweats?” Thinking back on it…yes – every morning I woke up feeling unusually hot. “Have you had a lot of infections recently” …well I had a wisdom tooth infection (very common at my age), and then the kidney infection. “Had I been more tired recently” …yes, but I was also doing a master’s degree and working hard, “Had I lost weight” …. yes, but I’d been exercising more than before.  

Basically, I felt that all my symptoms could be explained by something else going on in my life. There were no ‘obvious’ signs that it was leukaemia and leukaemia wasn’t even on my radar. If it hadn’t been for the kidney infection, I might not have been diagnosed until a lot later and my experience could have been very different. 

I was told about the possibility of getting secondary cancers down the line, however, the chances were so small. To develop a therapy-related leukaemia was about a 1-2% chance, so I never believed it would really happen to me.”  

Iona initially spent a month in hospital having intensive chemotherapy.  

Iona said, “The chemotherapy treatment I received was incredibly intense, especially compared to the treatment I had received for Hodgkin’s lymphoma previously. It involved 7 days of GCSF injections and then 5 days of chemotherapy. The nausea was managed well with drugs, but the chemo wipes out all your dividing cells, so I became very vulnerable to infections, had to be on strong antibiotics and had to have several blood and platelet transfusions.” 

One of the life-saving treatments currently available for acute leukaemia’s is a stem cell transplant. To have this treatment, you must be matched with a suitable donor. Luckily for Iona, her sister proved to be an excellent match. 

Looking back on her experience, Iona said: 

“Before I was diagnosed, I felt so fit and healthy, I was running regularly and felt happy in myself. So, when I started the chemotherapy, it felt like it was the treatment that was making me ill rather than the disease itself. It’s a lot to get your head round. 

I also lost my hair. Although it is sad to lose your hair, especially for a second time, shaving it off was a decision I had control over, unlike so many other things going on at that time. It also felt like a relief to shave it rather than to watch it slowly fall out. It became so dry and brittle, and every time I touched it hair came out in lumps which I found depressing.  

The diagnosis also had a huge impact was on my relationships with friends and family. I was basically in isolation for 6 months because of Covid-19 and being an in-patient in hospital. My life had stopped still, while others continued to go on as normal. Friends would be going out, socialising, and travelling and of course I wasn’t able to.  

At the same time, I’m now closer than ever to my friends who supported me unconditionally. It’s also brought my family even closer which I didn’t think was possible. Either my mum or dad was with my every single day in hospital, from the moment I woke up until I went to sleep. They supported me and made me feel like I was never alone. 

You lose your independence massively during a diagnosis like this. The side effects of the chemo make you completely reliant on other people – parents, doctors, nurses. I went from being a relatively independent university student who could go out whenever I wanted, to having round the clock care with doctors and nurses checking in on me every few hours. Even on the better days, I could only leave my room if I was with someone in case I got suddenly unwell or fainted. The Marsden Hospital was incredible and my clinical nurse specialists have supported me physically and mentally the whole way through. I trust them completely and always feel like they are there to support me in any way I need. Their commitment to their patients is incredible. 

Whilst my experience has obviously had a tremendous impact on me and is not something I would wish on anyone, there have also been some positives to come out of it. It has made me incredibly resilient and strong, and I’ve learned a lot about my core values and about who I am as a person.  

Once I was in the recovery stage of treatment, I decided to complete the “couch to 5K” challenge. I first completed it when I was having treatment for Hodgkin’s and found that running really cleared my head and was a huge emotional and physical outlet for me. I can now feel myself getting stronger again which is amazing.  

I am also now completing my master’s degree and wrote my dissertation on the healthcare industry. I am starting a graduate job in Marketing for Philips in September. I’m continuing to have regular check-ups following my stem cell transplant and complications that arose from that, but I’m hoping these can become less regular and I’m eager to throw myself back into normal life.” 

Iona’s experience is a remarkable story of success and her positive attitude throughout shows her resilience and determination. However, Iona has also been told that there is a lifetime limit on the treatment she has received – she has now undergone so much chemotherapy that she has reached the limit for one particular drug. This means that if she were to relapse, she would be desperate for a newer and more effective form of treatment – hopefully one that can be as effective as the chemotherapy but without the strain that it puts on the human body. 

Luckily, research breakthroughs are happening all the time. And one particular drug was discovered only last year by Leukaemia UK-funded scientist Dr Konstantinos Tzelepis and is now at an exciting stage, with clinical trials about to begin. This means that the first AML patients are about to access the drug, and these will be adults who have not responded well to current treatment options such as chemotherapy. If successful, Dr Tzelepis’ drug will provide a vital new treatment option for people like Iona who have been diagnosed with AML. 

Now, Iona is working with Leukaemia UK to raise awareness about leukaemia and its symptoms, and to help drive improvements in diagnosis and support progress for kinder and more effective treatments. She particularly wants to share her experience about how it can affect young people and hopes that if someone else receives the same diagnosis as she did it, it could benefit them to hear someone’s similar experience. 

Photo credit (top): Jeff Moore