Help make the most vital list longer this Christmas: Sophie’s story

At Christmas, most of us have plenty of lists: presents to buy, cards to send, food to remember and people to invite.

But for Sophie Tinley, there’s another list that matters much more: the list of treatments available to people living with myeloma.

Sophie is supporting our Christmas List Appeal because she wants to help create a future where people with myeloma are diagnosed earlier and have access to the treatments they need.

Sophie’s symptoms began in autumn 2019 with twinges in her back. At first, she didn’t think too much of them. But over the following weeks, the pain became increasingly severe.

Sophie and her husband had held a Christmas party for around 100 friends and family every year for almost a decade. In 2019, they had to cancel it just days beforehand because Sophie was in too much pain.

On Christmas Day, Sophie still hosted 19 people for lunch, but she had to leave the table three times to have a warm bath because she couldn’t get comfortable standing, sitting or lying down.

Sophie had already visited her GP several times. When she returned to work in January, she also started experiencing breathlessness and fatigue.

“In my final visit to the doctor in early January, I listed multiple symptoms to be told I could only talk about one. But then he said, ‘Tell you what, I will book you in for a blood test’.”

A few days later, on 15 January, Sophie received a call telling her to go straight to A&E. Less than 48 hours after being admitted, she was diagnosed with myeloma.

“I was thinking about the girls and the future”

The diagnosis came as a huge shock to Sophie.

“I was in a state of shock that it was cancer. My husband was there with me, and we weren’t quite sure what to say. I was thinking about the girls and the future. It was overwhelming and in that first couple of days, there was a lot to process.”

Scans showed that myeloma had caused serious damage to Sophie’s bones, including lesions in her spine and hip area and broken ribs. The damage to her hip was so extensive that she was told not to put weight on her leg for three months to avoid further fractures.

Sophie began chemotherapy straightaway. She later underwent two stem cell transplants in 2020, first using her own cells and then using donor cells from her twin sister.

The treatment that was available just in time

For people living with myeloma, having different treatment options available is vital.

For Sophie, one addition to that list became available when she needed it most.

In January 2020, lenalidomide maintenance treatment was approved for NHS use. Sophie started taking it just a few weeks later. The timing was particularly significant because Sophie had been identified as high risk at diagnosis and her myeloma had been described as aggressive.

Sophie believes having access to maintenance treatment has contributed to the length of her remission. Lenalidomide (Revlimid®) represents far more than another treatment name on a list. For Sophie, it represents precious time.

“Had I not had access to the maintenance treatment at the point that I started it, then it’s probably highly unlikely that I would still be in remission.”

More time. More milestones

When Sophie was first diagnosed, she remembers wondering whether she would even make it out of hospital. Today, her life looks very different.

One of Sophie’s hopes was to see her eldest daughter graduate. This year, she got to do exactly that. Her daughter graduated with a 2:1, with Sophie there to see it happen.

Now, Sophie is looking forward to seeing her younger daughter complete her A-levels, head to university, and see where life takes both daughters next.

Another Christmas together

Christmas itself has become a milestone for Sophie.

Christmas Day 2019 was one of the worst days of pain she experienced before her diagnosis. What followed were treatment, stem cell transplants and then the disruption of the COVID years.

Now, Sophie is able to enjoy Christmas surrounded by her family again. She often hosts between 15 and 20 people on Christmas Day. And the family are even considering reviving the big Christmas party they had to cancel in 2019.

Help make this vital list longer

Every treatment added to the list of options available to people with myeloma can offer new hope. But developing a treatment is only part of the story. People need to be able to access new treatments when they need them.

Myeloma UK works to ensure patients’ voices are heard during drug appraisals and campaigns for access to new, kinder and more effective treatments. At the same time, we fund research to better understand myeloma and work towards the ultimate goal: a cure.

Sophie knows first-hand what that work can mean.

“What I’ve learned is how incredible Myeloma UK are advocating for patients, and all the campaigning that is done to open up treatment options.”

Support the Myeloma UK Christmas List Appeal

This Christmas, will you help us make the list of available myeloma treatments longer?

Your gift could help patients play a part in drug appraisals, support work to make new treatments available, and fund vital research as we work towards a cure.

For Sophie, having the right treatment available at the right time has meant more years in remission and more precious milestones with her family. For someone else, the next treatment added to the list could mean more time with the people they love. More birthdays. More milestones. More Christmases together.

Please donate to the Christmas Appeal today. And together, we can help make this vital list longer.