09 May 2024

Danae’s leukaemia in numbers

Danae’s leukaemia in numbers: 

  • 433 vials of blood taken (ongoing) 
  • 7 bone marrow biopsies (ongoing) 
  • 21 chemo bags (gemtuzumab ozogamicin, daunorubicin, cytarabine) 
  • 36 chemo injections (cytarabine) 
  • 672 targeted therapy tablets (midostaurin — ongoing) 
  • 3810 minutes of chemo  
  • 15 blood transfusions 
  • 19 platelet transfusions 
  • 2 PICC lines 
  • 1 blood clot 
  • 7 infections (4 neutropenic sepsis) 
  • 1 anaphylactoid reaction 
  • 109 days as a hospital inpatient 

Danae in hospital

Danae (pronounced Dn-eye like the word deny) Warne was just 20 and fully enjoying student life at the University of Warwick when she received her devastating leukaemia diagnosis. While her friends continued to have fun at uni, finish their degrees and start their first jobs, Danae was fighting blood cancer. And instead of going on her year abroad in Valencia in Spain as part of her English Language and Linguistics course, she had to spend 109 days over six months in hospital enduring gruelling chemotherapy. 

In March 2023, Danae went with her friends on a trip to Portugal. On the way home, she experienced what turned out to be the first symptom of her cancer: “I was on the plane and noticed my back was really aching, but thought it was due to tiredness from the trip.” 

However, back home in Bodmin, Cornwall, Danae started suffering from repeated infections and constantly felt ‘not quite right’. She was tired, out of breath and, as well as experiencing ongoing back pain, she started to have unusually heavy periods. 

A few weeks later when she was back at university, Danae’s symptoms intensified.

“I had lots of small bruises on my arms and legs and couldn’t place how I could have got them. My skin was itchy despite having no rash, which was starting to bother me, and I also started getting migraines with an aura. I had never had anything like this before, so I eventually went to my GP.” 

Initially, her GP thought that she might be suffering from iron deficiency. Danae was booked in for a blood test. Just a few hours after the sample was taken, she received a call from her GP telling her that they found abnormal cells in her blood sample. Worried and confused, Danae’s housemate accompanied her to Warwick Hospital the next day, where more blood tests were taken. The consultant then gave Danae the devastating news that the results could signal leukaemia and she would need a bone marrow biopsy to confirm it. Doctors called her mum to explain the situation and asked her to come to hospital to be with her daughter. 

“That afternoon, my mum and stepdad drove five hours to be with me for my results,” said Danae. “It was a very strange time, almost like we knew what was coming but did not want to process it and we went out for dinner as if everything was normal. The next day, my mum and I went back to the hospital and were taken to a private room by the consultant and clinical nurse specialist I had met the day before. I still remember the name of that room – the Mary Bonner Room – and I think I always will as it was where I was told that I had leukaemia.” 

Danae in hospital

Danae was diagnosed with acute myeloid leukaemia (AML) on 26th April 2023. “I felt so much but so little at the same time. I had so many questions but physically couldn’t articulate them because I was just so shocked. I started crying but all I could manage to ask was if my hair was going to fall out. The consultant said yes. Even though from my blood tests alone it was quite evident I had leukaemia, I still thought I would be an exception. Having my life flipped upside down was the last thing I was expecting to happen on a random Wednesday in April, and it was all from a blood test I had only 48 hours prior.” 

Danae relocated back home near Derriford Hospital in Plymouth, so she could be with her  family during her treatment. She began the first of four rounds of chemotherapy which she found long and hard. “I think my body was shocked at what was being put into it! I had many side effects including infections, temperature spikes, itchy skin, nausea, complete loss of appetite, and – eventually – hair loss.”

After the first round of chemo, Danae’s genetic results came back. They showed that she was positive for two high risk mutations, FLT3 and TP53. Because of the TP53 mutation, she would require a stem cell transplant, as this is viewed the only curative option for patients with TP53-mutated AML. However, getting the stem cell transplant proved to be difficult.  

“We found it really hard to find a donor as my mum is British and my dad is Greek, so I have some rare tissue types. Eventually, a 9/10 donor was found but he was unable to donate due to personal reasons. While another donor was being searched for, I had all the pre-transplant information and more tests. But then my bone marrow biopsy came back MRD (minimal residual disease) negative – meaning there was no sign of my leukaemia. None of us were really expecting that, and I am only the second British AML patient with these abnormalities to ever come back negative. So, with the advice of my consultants, who also sought the advice of other leukaemia specialists all over the country, we decided not to proceed with my transplant, and to keep it in our back pockets if we do ever need it in the future.” 

Danae outside

The time in hospital was difficult, yet Danae tried to remain optimistic and focus on her future.

“Some of the short-term goals included things like getting discharged and being able to enjoy  my favourite home-cooked meal. The long-term goals were more things like celebrating my 21st birthday, being able to go on holiday and going back to university.” 

Six months after her AML diagnosis, Danae finished chemotherapy. She will continue to take chemotherapy tablets for a year after her first regime of treatment was completed. This is alongside monthly blood and ECG tests, and a quarterly bone marrow biopsy to quickly capture any potential relapse. 

Now Danae’s focus is rebuilding her life. “Leukaemia put a complete pause on my life which has been really hard to come to terms with as a 20-year-old. It was difficult watching my friends and other people my age continue with their lives and have fun while I was stuck having treatment, and I did feel a bit sorry for myself at times. I felt like everyone I knew was making progress in their degrees, jobs, and social lives and I couldn’t do any of that anymore. I really wanted to hear about all the exciting things they were doing but it didn’t make it any less difficult for me at the time. I was also meant to be going for a year at the University of Valencia in Spain as part of my degree. I would have been a student in a beautiful city by the sea. Some of my course-mates are in various places around the globe doing the same thing I was meant to be doing. But I had to replace with a year out to have treatment.” 

Danae has already managed to fulfil one of her big goals, which was to celebrate her 21st birthday. She also had fun on a holiday with her friends in Majorca. But her determination does not stop there – she is aiming to return to university in September to finish her degree: “This will also involve transferring my care back to the hospital near my university. I’m looking forward to being able to show the consultant there that diagnosed me that I did it! However, all I can really hope for is that my targeted therapy keeps working, my biopsies keep coming back clear, and that my health and recovery keep going from strength to strength. I could in theory still do my year abroad next year but I am not going to. I would have to keep flying back to England for my medical checks as I wouldn’t want to move my care to hospital in Valencia. I don’t even know if I could get insurance and I just want to finish my degree now. But I do plan to travel after I (hopefully) graduate in Jully 2025, and I’m sure Valencia will be on my list of places to visit.” 

Danae and her mum

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