05 Feb 2025

“It gave me hope”: Iain’s Story

CAR-T Therapy has now been rolled out across the UK for the treatment of adults with acute lymphoblastic leukaemia after being approved by NICE in April 2023. Iain was one of a number of patients that received the treatment as a trial in the run up to the NICE approval. 

Iain began to experience backache, weight loss and painful muscle spasms in February 2020. 

“In the early hours of one morning I was in so much pain it took the air out of my lungs, it was so unbearable,” said Iain, now 38, who lives in Tamworth with his wife Maria and works as a general manager for a car dealership.  

“Maria and I had been together 18 months and had just moved in with my Mum in Sutton Coldfield while we waited for our new house. We decided to go to A&E at Goodhope Hospital in Sutton Coldfield. They took a blood test and found I had a higher level of C-Reactive Protein (CRP) which indicates inflammation. But apparently it wasn’t high enough for it to have been a concern. They just thought I’d moved house and strained my back, advised me to take Ibuprofen and sent me home.” 

However, the symptoms persisted and worsened. Iain had start to get a fever at night, bruising and was losing weight. After multiple visits to A&E, specialists at Heartlands Hospital in Birmingham confirmed Iain had B-cell acute lymphoblastic leukaemia (B-ALL) in March 2020. On Sunday 15th March 2020 Iain was told the specialists believed he had leukaemia. They said they needed to take a bone marrow biopsy to confirm which type.  

“At first I’m not sure any of us could believe what we were being told. I was scared, confused, didn’t know what the next steps were, whether I’d survive. I was 34 and fit and well – I was too young to have this! But they were always positive it was going to be treatable.” 

Two days later on Tuesday 17th March is was confirmed Iain had acute lymphoblastic leukaemia (ALL).  

“They were probably the scariest words I had ever heard in my life,” said Maria, 44 who is an Account Director for a logistics company. “Iain and I were embarking on the next chapter of our lives having bought a new home together, and now we were faced with Iain having to undergo life-saving treatment. Every single priority in our life changed there and then in an instant. Nothing else mattered anymore apart from making sure Iain got what he needed.” 

Iain’s treatment began the same day with steroids, followed by chemotherapy a week later.  

“The team at Heartlands were amazing,” said Iain. With the UK now being in lockdown, and no friends or family being able to visit, it was lonely. But the team at the hospital did everything they could to make sure I was supported as much as I possibly could be. I was in hospital for a month and then had to go back there every day for more outpatient chemotherapy and platelet transfusions. 

Iain was told from the start he would need a stem cell transplant, and it was quickly established that his younger brother Ross was a match.  “Seeing my brother unselfishly have to take drugs simply to be a donor was very hard – a brother who had a massive needle phobia which didn’t help!” 

Iain’s stem cell transplant took place at the Queen Elizabeth Hospital in Birmingham on 26th June 2020. And he was given the ‘all clear’ in Sept 2020.  

“I felt like nothing short of a miracle. I cried when I received that phone call. It felt like such a relief to know I could finally start getting my life back on track. The recovery was hard, my body had taken a battering, I had lost weight, muscle and fitness so I really wanted to concentrate on getting my strength and health back to where it was before diagnosis.” 

Iain went back to enjoying work and life and a new home with Maria. But just over a year later in November 2021 he started to feel pain in his collar bone.  

“I ignored it, putting it down to me working out a little more, but in June 2022 it got progressively worse, so I called my consultant who took blood tests which showed a miniscule amount of leukaemia in my blood, and then got me in for a PET scan. This unfortunately confirmed my ALL had returned.  

“I was back to being petrified. How could it have come back again? Had they got it wrong?” 

“It felt like our whole world had fallen apart again,” said Maria. “Just as it seemed we were getting back to some sort of normality. This time round was even scarier than the first time even though we kind of knew what to expect. Everything went on hold again, our whole world became about making Iain better again.” 

Iain was then told about a treatment called CAR-T, a new drug which was being trailed pending approval by NICE for widespread use on adults with ALL. 

“It gave me hope,” said Iain. “And they said if it didn’t work they could fall back on chemotherapy again. But I had faith in their judgement.” 

Iain was taken back to Queen Elizabeth Hospital to start the process, which involved extracting his blood, putting it through a machine to separate out the cells, and then sending the CAR-T cells away to be processed ready for transplant.  

“That was in the October time. I waited a month or so for the cells to come back, and then had my transplant in November. Compared to what I’d been through with the stem cell transplant it was so easy. I was walking five or six miles a day up and down the ward as I felt so good and wanted to exercise.”  

Iain recovered well and was given the all-clear from his leukaemia for the second time in January 2023. He immediately returned to work, went back to the gym and mountain biking, and became stronger and stronger. 

“The hardest part of all this was seeing my mum have to go through the heartache. Only having lost my dad to a brain tumour six months before my initial diagnosis, it was so unfair on her to see her son so poorly.” 

Out of all the heartache and trauma of the Iain’s leukaemia came a wonderful happy ending. Not only did Iain survive, but he decided he wanted to share his new life with Maria as his wife.  “I thought if my then-partner could get through all of this with me, it was time to make her my wife! I proposed in January 2023 and we got married on 24th August 2024.” 

“Iain’s leukaemia treatment was crazy hard!” said Maria. “But what choice did we have? I know Iain felt lonely… but so did I, keeping everyone’s spirits up, keeping friends and family informed, giving Iain tough love when I felt he needed it occasionally. My best friend Debbie was my absolute rock for me. She was the one who helped ME stay strong. Without her I couldn’t have been as strong as I was for Iain. Would we have rather we didn’t have had to of gone through everything? Absolutely, but there is no doubt at all, it has brought Iain and I closer than we ever would have been. Living without him simply isn’t an option. He is my inspiration. He dealt with everything that was thrown at him amazingly.”

“When Iain proposed, I couldn’t quite believe it! I never thought Iain was the marrying type! So for him to see I would always be with him through thick and thin and to ask me to marry him was the best feeling in the world. The wedding day genuinely was the best day of my life and of course Debbie was my maid of honour at the wedding! It was made all the more incredible because in reality, we never knew if Iain would ever make that day!” 

“I’m now enjoying married life and just trying to live as normal life as possible,” said Iain. “I try not to think about the illness, the treatment and everything everyone went through. Every twinge I get in my back, of course I worry… but I can’t live the rest of my life constantly in fear that it will come back again.”

“I’m so grateful to the doctors who treated me and got me on the CAR-T trial. It’s an incredible treatment. Maria reads all the information about everything, but that’s not me. I woke up every morning and got given what I got given and took their words for it. I trusted them completely and am so grateful it paid off.”