06 Jan 2025

“I am the data!”: Lizzie’s Story

CAR-T therapy has been available on the NHS at a number of specialist UK centres since 2018 for children, but only available to adults since 2023. 

Lizzie has a history of medical issues including being diagnosed with Immune Thrombocytopenia (ITP) when she was 17 years old, and she had her spleen taken out when she was 21, so the professional cellist was used to being immunocompromised. She had also been diagnosed with fibromyalgia in November 2020. In February 2021 her worried daughter, Lowri, thought Lizzie was particularly unwell and urged her to contact her GP. 

Lizzie’s first symptoms were bags under her eyes

 Lizzie, now 56, who lives in Bramshall, Uttoxeter, said: “At that time, Lowri was studying from home due to Covid preventing her from going to uni in person. I’ve always been a poorly person, but she spotted I had big bags under my eyes – they were huge – so she said to go to the GP about. I said no it’s nothing, but she insisted. I owe my daughter an awful lot.” 

The GP assumed it was an allergic reaction to the morphine patches Lizzie had been prescribed for her fibromyalgia, but the GP referred her for some blood tests. A couple of weeks later, the hospital in Burton-on-Trent rang to say there was an anomaly with her blood results and to expect a call from Derby Royal Infirmary. 

Lizzie said: “They phoned me the same day to say I needed an urgent bone marrow biopsy. I went straight to the hospital, and they told me I had leukaemia. They said they would need to send me to Nottingham City Hospital the next day where they carried out the bone marrow biopsy.” 

On March 3rd, 2021, Lizzie was diagnosed with acute lymphoblastic leukaemia (ALL).  

Lizzie said: “It was a huge shock. Looking back, I had been having night sweats, which I put down to menopause, and I was always fatigued anyway. I had some bruises but nothing like when I was diagnosed with ITP. As soon as they mentioned the bone marrow biopsy warning bells started ringing for me – after having a previous blood disorder, I knew this might be bad. 

“My fiancé John and I both work in the music industry and during Covid we had lost all our work, which was devastating. We also had to cancel our wedding plans. So, we were already dealing with that, and I had been shielding for a year. But I’m a pretty tough cookie, and initially I just took the diagnosis in my stride. It was almost more devastating for my immediate family.” 

Lizzie spent eight weeks in Nottingham City Hospital having two rounds of chemotherapy. She was then told she would need a stem cell transplant to achieve full remission from her leukaemia. 

Lizzie said: “No donor match could be found for me and, as an only child, my only hope was my own child. Lowri was born nine weeks premature in 1999 after I had lost six babies before that. I was told she may have developmental problems and possible brain damage, but she excelled at school and gained a place at Oxford Uni to study English! I’m so proud of her. And then she saved my life! Fortunately, they found she would be a sufficient ‘haplo’ half match to go ahead.” 

Lizzie received her daughter’s donated stem cells on 8th September 2021 and a further donor lymphocyte infusion six months later in March 2022.  

Lizzie continued: “I was in remission for 20 months. Fatigue remained an issue and still is. But I went back to doing some gigs part time. I never felt well enough to go back to orchestras in theatres as there would have been too many people around and it would involve up to 10 performances a week. I work with the Limelight Orchestra which does big outdoor gigs in summer and cathedrals throughout the rest of the year – it’s perfect. During that time, John and I were also able to spend time in our holiday home in Turkey and life was good.”

Lizzie is a talented musician

But in November 2023 a routine blood test revealed 80% blasts in Lizzie’s blood – the leukaemia had returned.

Lizzie said: “The puffy eyes came back on holiday, but I dismissed it as too many cocktails and not enough sleep. I didn’t think the leukaemia was back.” 

Lizzie was told that her only chance of survival was CAR-T therapy which had been authorised by NICE for use in adults with ALL just a few months earlier.  

Lizzie said: “They said that it would depend on being accepted for treatment by the NHS Cancer Drugs Fund panel. Outpatient chemo started again between November and February 2024 which was a 100-mile round trip. And then I became really unwell. I lost the sight in one eye, was having regular falls, and had painful peripheral neuropathy in my lower limbs and feet which made mobility impossible, so I needed a wheelchair. The final straw came when John was away, and I slept for 36 hours, only waking to hear my mum hammering on the front door. I was admitted to hospital and diagnosed with a severe reaction to intrathecal methotrexate.” 

Lizzie’s chemotherapy was terminated but the good news was the Cancer Drugs Fund approved her for CAR-T and on 23rd February 2024 her T-cells were collected. 

Lizzie was “the data” for Cart-T treatment

Lizzie continued: “While I was waiting for them to be processed and returned on 30th March, I did the Blood Cancer UK Walk of Light with friends and family around my local village with me in a wheelchair! I received my CAR-T cells on 15th April 2024 and was told I was Nottingham University Hospital’s first ever adult relapsed acute lymphoblastic leukaemia CAR-T patient. I have a t-shirt which says NHU CAR-T Guinea Pig and ‘I am the data’! After two more weeks as an inpatient, including my 56th birthday at the end of April, I was able to move to outpatient treatment. I was able to do this accompanied by my wonderful six-year-old Doodle dog Scout at a lovely pet-friendly hotel near the hospital thanks to the generosity of Leukaemia Care.” 

Lizzie is now recovering and has progressed from her wheelchair to a rollator to just a walking stick, although she still has peripheral neuropathy. Best of all, her remission was confirmed on 1st August 2024. 

Lizzie added: “My world fell apart last November when I relapsed and was told that my only hope of survival was CAR-T. The anxious wait to hear from the Cancer Drugs Fund panel was agonising. Yes, I have had side effects from the pre-treatment but thanks to my family and friends and the AMAZING team at NCH I have been able to return to part time work.

“I have managed to do a few gigs over the summer. It’s a cello – not a flute – so people have to help me on and off the stage. I have enjoyed spending quality time with John and Lowri and we are looking forward to seeing her theatre company’s debut at Birmingham Hippodrome. We are looking forward to spending a week at our apartment in Kalkan, Turkey, in October as I’ve not been able to travel for almost a year. As for our postponed wedding – watch this space!

“Overall, I am taking one day at a time. We still don’t know what the data is – CAR-T is still fairly new so I AM the data! So, it’s a case of seizing the day. I’m taking one day at a time because nothing in life is certain.”. Lizzie set herself a challenge to participate in daily walks around Bramshall with Scout and fundraise for Leukaemia UK. Check out Lizzie’s challenge.

A video of Lizzie’s journey can be found here.

Lizzie is in remission and is taking one day at a time with her loving family

https://www.justgiving.com/page/lizzie-spear-1732528081347