49-year-old Deborah lives in Drayton, North Worcestershire with her partner. She has two children and is the Public Health Director for Dudley.
Deborah was diagnosed with acute myeloid leukaemia in January 2016. She was treated with chemotherapy and had a stem cell transplant in June 2016 and is currently participating in a clinical trial.
On life before diagnosis…
Life was perfect. I’d wanted a Director of Public Health job for such a long time and, in February 2015 that dream came true. I’d also wanted to live in the country and, two months after I started my dream job we moved into our tiny cottage – I loved living in the country and was really enjoying the job.
A new GP…
My grandma had been poorly, and died in early October 2015. I started to lose weight at that time; I’d lost my appetite but put it down to grief.
I’d also had some hot flushes and dizzy spells. I thought that, as a woman of a certain age, it must be due to menopause.
By November the weight was dropping off. Again, I put down to having a stressful job. I saw a doctor, when I had a cold that I just couldn’t shake off. I was given antibiotics.
I registered with a new GP and first saw them on 8 January as I was still suffering with the cold. I had searched my symptoms online by that point and had an inkling that it was going to be something serious.
I was sent for a blood test on Monday 11 January, and headed to work.
After I returned home the GP deputising service was at my door telling me to get to A&E, I was worryingly anaemic. They had been trying to call my mobile but my phone had been on silent for work meetings.
My partner and I drove to Worcester Royal A&E, where I was admitted. I was told that I’d need a blood transfusion and they suspected it might be lymphoma.
The next day a Consultant haematologist came to see me and told me that looking at my blood they were pretty sure I had AML and that I would have to have a bone marrow biopsy to confirm
On receiving an AML diagnosis…
I knew it was serious. I remember feeling a bit numb but, as I’d been searching online, I thought it might be AML.
I asked for the plan and was told ‘we’re going to treat it with curative intent’.
I was told that a bone marrow biopsy would confirm what was wrong. It’s weird because the bit that really upset me was finding out that probably I’d be off work for six months. It was the six months that upset me! I loved my job – I had everything I had wanted so it was a massive shock. It didn’t occur to me when looking at leukaemia, and treatment that I’d be off work for so long
The genetic analysis showed that I had a genetic mutation that put me at high risk of relapse so I knew early on that I would definitely needed a transplant. I also only had a 1 in 5 chance of making it to 5 years.
From treatment to remission…
The second round of chemotherapy got me into remission which meant I was ready for my transplant. After that I met with my transplant team who told me that Anthony Nolan had found three donors and that a young German man would probably be my donor.
It was at that point I was given the option of joining a clinical trial: for high risk leukaemia patients which compares the standard conditioning treatment with another conditioning regime which is used elsewhere. I was lucky in that I was randomised into the regime which has a 60% success rate [the other regime has a 50% success rate], however I knew what I was getting into.
I asked what I needed to do to maximise chance of treatment working – told to be as fit as possible, and to put weight on.
Three days before I was due to have my stem cell transplant I was told my donor had failed his medical. This meant having more chemo so that I didn’t come out of remission.
Luckily Anthony Nolan found another donor for me. I was told it was an 18-year-old British male. I remember it was a few weeks after the EU referendum so we joked about it being a Brexit donor! For me, donating stem cells to a stranger is the ultimate in altruism, and that a young 18-year-old showed this generosity is amazing.
On why clinical trials are essential…
We owe it to the donors to make sure that as many transplants work as possible. We don’t know much more about why transplants work for some people and not others than we did 20 years ago. The only way we can find that out is by doing more research trials and I think that it’s shocking that despite this only one in twenty transplant patients in the country is on a trial. We are letting all those fantastic donors down.
I’ve never met a patient who wouldn’t consider being part of a clinical trial. The issue is that there aren’t enough trials done. When trials are done by separate transplant centres the number of patients is too small so the trials take a long time to get robust results that can change the treatment that is available quickly. Individual centres also don’t have the staffing and facilities to do the research. This is why IMPACT is so important. It will increase the number of patients on trials and centres can share research staff and resources.
IMPACT is a partnership of organisations committed to improving the outcomes of stem cell transplant patients through the delivery of clinical trials across the UK. It is jointly funded by Anthony Nolan, Leuka and NHS Blood and Transplant.
The partnership allows transplant centres across the UK to work together to deliver clinical trials focussed on stem cell transplantation. IMPACT provides funding for research nurses in ten centres, and works with a further twelve affiliated centres which also participate in IMPACT trials. IMPACT trials are coordinated by the central hub, located at the Cancer Research UK Clinical Trials Unit (CRCTU) at the University of Birmingham.
For more information, visit https://www.anthonynolan.org/news