“I knew something was being missed” - Bob’s journey with cutaneous T-cell lymphoma

Bob Fuller, 62, lives near the village of Lingfield on the Surrey borders, where he was born and raised. Having lived with eczema since childhood, skin problems were something he thought he understood well.

“Life was often challenging at times,” Bob explains, “but as I got older, my eczema became much more controlled with topical creams and it never really impacted my life.”
 

That changed in May 2021, when Bob began noticing significant changes in his skin. Despite years of experience managing eczema, he instinctively felt something was different.

Under the care of a dermatologist at East Surrey Hospital, Bob was initially treated for what was believed to be contact dermatitis linked to his eczema. Over time, he was prescribed several immunosuppressant medications, including Methotrexate and Tacrolimus (Toctino), but neither improved his symptoms. Patch testing for possible triggers also proved inconclusive.

“On many occasions during appointments, I insisted that what I was experiencing was very different to anything I had experienced with eczema,” he says.

In September 2023, Bob underwent punch biopsies at Horsham Hospital. The results changed everything.

A few weeks later, he received a late evening phone call from his dermatologist explaining that the biopsy results showed possible cutaneous T-cell lymphoma (CTCL) in his blood.

Planned treatment for dermatitis was immediately stopped, and Bob was urgently referred to the cancer centre at Guy’s Hospital in London.
 

At his appointment in December 2023, Bob’s diagnosis was confirmed as cutaneous T-cell lymphoma with mycosis fungoides and possible Sézary syndrome.

“It was a lot to take in,” Bob says.

Following his diagnosis, Bob began treatment with Bexarotene — a medication that requires extremely close monitoring because of its potential impact on cholesterol, triglycerides and thyroid function.

To support treatment, Bob was advised to lose weight, something he approached with determination. Within a relatively short period, he lost around six stone.

“It was never mentioned as criticism,” he explains. “It was explained that the treatment could be unstable in people who were overweight.”

Bob also underwent PET scans to check whether the cancer had spread beyond the skin. Fortunately, results showed no involvement of his lymph nodes or internal organs.

As treatment progressed, Bob experienced multiple setbacks, including dangerous spikes in blood levels that forced treatment pauses while doctors worked to stabilise things safely.

In early 2025, another treatment — Peginterferon (Besremi) — was added alongside Bexarotene, requiring self-injections every two weeks and continued close monitoring.

One of the biggest challenges of mycosis fungoides is the constant damage caused to the skin barrier by diseased white blood cells.

“It is crucial to keep your skin constantly hydrated with topical creams and ointments,” Bob says. “I have to do this on average three times a day and sometimes more.

In September 2025, Bob began Extracorporeal Photopheresis (ECP) treatment at Guy’s Hospital - a complex procedure similar to dialysis, where white blood cells are treated with UV light before being returned to the body.

The treatment takes several hours over two consecutive days every two weeks, with the hope of reducing symptoms over time.

Before his diagnosis, Bob was a passionate cyclist. Despite his illness, he continued taking part in the London to Brighton cycle ride, raising money for charities including Lymphoma Action and Breast Cancer Now.

In 2025, he completed the ride alone in just over four hours. “Not too shabby considering my age and illness,” he jokes.

Although progression of his condition has forced him to step away from both cycling and his work as a heavy goods driver for now, Bob remains determined to keep looking forward.

At a recent appointment in March, Bob’s oncologist and clinical team at Guy’s Hospital explained that his condition was unfortunately not showing the improvement they had hoped for.

It was discussed that the next stage of treatment may involve Mogamulizumab, a drug given through intravenous infusion. However, because there is currently no blood involvement, the decision was made to continue monitoring Bob closely over the coming months. If there is still no improvement, he may be referred back to the transplant team at Hammersmith Hospital to discuss a possible stem cell replacement.

Despite the challenges, Bob remains determined to keep looking ahead. Although training has become much harder due to his condition, he is still hoping to complete the London to Brighton cycle ride for the British Skin Foundation in honour of Lisa Carter.

Bob T Fuller