A Mansfield grandmother continues to defy the odds 25 years on from being told she had five years to live, thanks to a lifesaving clinical trial.
Now Kathryn Oddie has joined an appeal calling for greater access to new transformational treatments in the UK.
In 2000 she was diagnosed with blood cancer myeloma after experiencing a persistent nosebleed.
Aged just 38, Kathryn was given a life expectancy of five years due to the limited treatment options available at the time.
Over the next two decades, she signed up to every clinical trial she could and received 11 treatments, including two stem cell transplants, but none managed to keep her cancer at bay for long.
By 2020, the now retired practice nurse was told he had reached the end of the line.
Thankfully, at the 11th hour she was offered the pioneering new treatment, teclistamab, through a clinical trial. Within just six months Kathryn was in remission — for the first time in 21 years.
Now she is part of blood cancer charity Myeloma UK’s Spring Appeal, asking for greater access to new life-changing treatments in the UK. “Never in a million years did I think when I was diagnosed with myeloma that I would get to meet my grandchildren or see them grow up,” said Kathryn, now 63.
“I’ve been given so much time. 25 years on — and I’m still here because of research into new drugs and thanks to the amazing work Myeloma UK is doing to get patients access to these drugs.
“Teclistamab has been life-changing. It’s a miracle drug, to be honest. I’d had 11 lines of therapy but none of them had put me in remission. At the time, my local hospital said there was nothing else for me, but luckily my consultant had worked with Dr Rakesh Popat in the trials unit at University College London (UCL) a few years back, so he wrote to him to see if there was anything that could help me. They rang me to say they had this new drug. I was the first to get teclistamab at UCL.
“Within six months or so it worked. Now I’m in remission and I can actually get on with my life.”
Myeloma occurs in the bone marrow and currently affects over 33,000 people in the UK.
While it is incurable, the blood cancer is treatable in the majority of cases. That can lead to periods of remission, but the cancer will inevitably come back.
Sarah Secombes, head of public fundraising at Myeloma UK, said: “Kathryn’s story shows just how important it is to have access to innovative treatments because, when you’re living with myeloma, one thing is certain — it will always come back.
“Kathryn would not be here today without the huge strides that have been made in research, the number of game-changing treatments developed, and the tireless work of so many people to get these treatments approved on the NHS over the last 25 years. Myeloma UK can only do this work thanks to the generosity of our many supporters who donate, fundraise and leave gifts in their will.
“Every day counts when you’re living with myeloma and, with your help, we will keep fighting for wider access to treatments so patients like Kathryn get to spend more precious time with their loved ones.”
Everything had changed for the GP practice nurse in 2000 when she had the nosebleed while at work — and it was still bleeding at home that night with her husband, Andrew.
“I went from nurse to patient overnight,” she recalled. It was a complete shock. It all just started out of the blue.”
Very few treatments were available then and Kathryn was given up to five years to live. Her daughter, Gemma, was 13.
“My consultant mapped out my life on an A4 sheet of paper, in a couple of lines. There was nothing on the NHS, so I went from trial to trial — and I jumped at the opportunity. At times no drugs were available, and I had to wait for the next trial or drug NICE had approved. That’s when you begin to think, ‘Is this it? Is there anything else available for me’?” she said.
Eventually though, in 2020, Kathryn was told she had exhausted all treatment options until the lifechanging call to UCL and the new clinical trial for teclistamab.
So, when she was approached in 2024 to join forces with Myeloma UK and help get teclistamab approved on the NHS, Kathryn did not hesitate.
“If Myeloma UK didn’t push for these treatments, then who would be fighting our corner?” she added. “Just getting teclistamab approved is probably two years’ work — two years for just one treatment.”
While the cancer and intensive rounds of treatment have taken a toll over the last 25 years, she is determined to focus on the positives and all the memories she’s yet to make with her two grandchildren, six-year-old George and three-year-old Hattie.
“My daughter was 13 when I was diagnosed and now she has children,” added Kathryn. “I remember a consultant once told me, ‘My main goal is to get you to 40’.
“Never in a million years did I think I would be standing at the school gate taking my grandchildren to school.
“We have them with us two days a week. When they see us, they run to us. Everything stops for the grandchildren.
“Things have changed, but you get used to a new type of normal. You can’t plan the way you used to, but with teclistamab I can now continue being a wife, mother, and grandmother.”
For information about myeloma or to get in touch with Myeloma UK, go to www.myeloma.org.uk. Myeloma UK runs an Infoline on 0800 980 3332. To make a donation to Myeloma UK’s Spring Appeal, go to myeloma.org.uk/next-treatment-appeal