Can You Help Shape Future AML Clinical Trials?
Patient/caregiver volunteers required to support a clinical trial proposal for patients with AML
‘I felt like I had every illness known to humankind’
My name is Marie and I am a 37-year-old Senior Lecturer from Coventry. In April 2016, aged 35, I was driven to A&E by my husband after a mouth infection that wouldn’t clear up, and I had an episode of the shakes and blurry vision.
After the hospital had taken a blood test, I was taken to a side room and asked a series of questions. Had I been tired lately? The answer was yes, but I had put that down to being a busy working mum to my then 10 and 6-year-old children. They also asked other questions, such as whether I had discovered any bruises recently, or had been feeling unwell. I hadn’t really pieced together what had been a series of episodes of generally feeling under the weather, that had gone on for perhaps six months or more.
I was immediately transferred to the haematology ward and was told the following day after a bone marrow biopsy that I had Acute Myeloid Leukaemia (AML). My world as I knew it came crashing down around me and my family.
I had never heard of AML and had to get my head around the treatment that was scheduled for me: 4 rounds of chemotherapy (a stem cell transplant wasn’t even mentioned at this point). I couldn’t go home to say goodbye to the children, the risk of infection was already too high. I faced the next month at least staying in isolation whilst I had my first round of chemo.
The first thing I decided was that I didn’t need or want any moping about. In my head, I was positive. I had been dealt with a massive blow but as far as I was concerned I had too much to live for and would not be giving up without a fight. Working in higher education, I naturally wanted to look up the research around AML, but purposely avoided this. Everybody is different, but my approach was to take each day as it came, I wasn’t interested in statistics – I am a person, not a number. Looking too far into the future was too scary for me. I know that my husband had been looking at information, but we didn’t discuss it. We just focussed on the here and now.
My first round of chemo was fairly uneventful. I had a sore mouth and felt pretty sick but it went quickly and I was well looked after. My hair started to fall out and I immediately shaved it off. This, for some, is really hard, but I surprised myself about my hair. I told myself “It’s only hair, and it’ll grow back”.
After my first round of chemotherapy, I had a rumbling temperature for a few days and felt pretty unwell, but put it down to the chemotherapy. My consultant looked concerned and said that she wanted to take another look at my bone marrow. Then came the second blow.
The first round of chemotherapy hadn’t worked, it had made no difference to when I was first admitted, and this put me into a high-risk category. I was absolutely devastated inside, but with the help of my family decided to get on with it. I asked my consultant – “okay, so what do we do now?”
The answer was to change my chemo regime and to refer me to Professor Charles Craddock CBE at Queen Elizabeth Hospital to look into a stem cell transplant. I spent a few days at home with my children and had my initial consultation at the Queen Elizabeth Hospital. I realised very quickly that if I was going to have to go through this scary procedure, I was absolutely in the best hands. Their reputation was world-class.
I then went back into hospital for my new chemo regime, and again, after about a month in the hospital, I got some great news and some not so great news. Both of my older brothers were tested for matches for my stem cell transplant but the tests had come back negative. They would have to go to a search for a matched unrelated donor. However, I also found out on the same day that the latest chemo regime had been successful and had put me in remission. I hadn’t realised until this point, that initially, I had 70% blasts in my bone marrow.
The following months saw more chemotherapy (to keep me in remission), whilst a donor was found, all the while moving from feeling poorly to having days where I felt okay. The next bit of bad news came soon into my third round of chemo. I was told I had an unusual tissue type, and they couldn’t find me an unrelated adult donor. At this point, I heard for the first time that they would be looking at cord blood transplants. “What is that?” I asked. I had never heard of it. They had found me two umbilical cords from newborn babies in New York, that was a partial match. I was very unsure, this information was new to me and felt even scarier. However, Professor Craddock explained that this was my best chance – he told me about recent research and about the successes people are having across the world using cord blood.
The decision to have the transplant consumed me. Should I take the risk? What if I don’t have it and the leukaemia comes back? Could I take the conditioning treatment which would include high dose radiation and chemotherapy? I thought about my family and the prospect of leaving my husband to care for our two kids. The thought of not seeing them finish school, getting jobs, getting married and all the other important milestones that I longed to be there for, made my mind up.
I had my transplant on 1st November 2016, after spending most of the year in and out of the hospital for rounds of chemotherapy, getting sepsis twice and pretty much feeling the worst I ever have. The transplant itself drew a fair bit of attention! As cord blood transplants are still used as a third choice option (because the stem cells take longer to engraft – and therefore you are vulnerable to infections for a longer period of time), they didn’t do them very regularly so I had about 10-15 members of staff outside my hospital room very interested in the procedure.
I won’t lie. Nobody can prepare you for what happens next. Literally the day after transplant, I felt like I had every illness known to humankind. Getting to the bathroom felt like running a marathon. I felt sick, had migraines from all the medication I was on, had zero energy and found it hard to concentrate on even holding a conversation. I contracted an e-coli infection and was put on high dose antibiotics immediately. One of the doctors assured me that everything I was going through was completely normal, and he would be worried if I didn’t feel so ill! Waiting for engraftment was probably the slowest, most painful wait. But eventually, on day 20 I was told that they had detected 0.01 in my white cell counts. I was absolutely ecstatic! From that day they grew (albeit very slowly!)
I was discharged on 28 November 2016. Unfortunately, after approximately 10 days, I was re-admitted after contracting CMV (a virus that can be pretty nasty). I was lucky that they caught it early and treated it, and eventually, I was let home to be with my family for Christmas.
And the rest is history as they say! When I first came out of the hospital, I could hardly get to the top of the stairs. Nine months later, I am up and down the stairs numerous times every day (with a spring in my step!). And it feels brilliant! I’ve had and continue to have some ups and downs (I recently had a short hospital stay for shingles), but on the whole, I am feeling stronger every day, and loving life.
One thing that AML has taught me is how truly blessed I am to have such a wonderful, supportive family. My husband took on the role of mum and dad at home, caring for our kids whilst also visiting and caring for me nearly every day. My parents brought me food every day. Even if I had no appetite and couldn’t eat, they didn’t complain, they just took it away again. My whole support network kept my spirits up, sending me jokes daily to make me laugh, bringing in goodies of tea and books. My kids wrote a series of positive affirmations to pin up around the hospital room along with photos. My favourite, which I read every morning and night was:
“Believe in yourself and all that you are. Know that there is something inside you that is greater than any obstacle!”
The support of Cure Leukaemia and the funding that they put towards the expanded Centre for Clinical Haematology at the Queen Elizabeth Hospital is absolutely fundamental to the care and wellbeing of patients both pre and post stem cell transplant. My transplant nurse Naomi (funded by the charity) has been so supportive of me! I have promised myself that early next year once I am back to full strength I will be doing something to help towards such a valuable cause. My mum has already started running blackout card games and collecting money to send in.
After 2016 (we often joke in our house it was the year that never was!) I look after myself in a way I never have before – through diet, walking, regular meditation and surrounding myself with people I love. I can’t emphasise how important it is to take care of yourself after such an intense procedure. An experience like this makes you really appreciate the small things. My advice to others? The advice that someone gave me when I was first diagnosed. Smile. Daily. Keep a list of ten things you are grateful for each and every day – it really helps to keep your spirits up and focus on all the things that make you feel good. Believe with everything that you are that you will get better.
When Jaqueline first noticed that her skin was starting to become pale back in July 2021, she initially just put it down to age and didn't think anything more of it.