Clatterbridge patient one of the first to receive pioneering treatment for rare type of Leukaemia

A Clatterbridge patient is one of the first in the UK to be given a pioneering treatment for a rare type of leukaemia – spotted when he was recovering from an unrelated cancer.

The patient, Tom, is being treated at Clatterbridge with a new therapy for myelofibrosis, a chronic leukemia that disrupts the normal production of blood cells in bone marrow at the centre of bones, leading to weakness, pain and debilitating fatigue.

The 68-year-old Liverpool grandfather is hoping the treatment will help to reduce the terrible tiredness which myelofibrosis (MF) creates and improves his quality of life.

He said:

“I’m not expecting a cure, But I am hoping to be able to do the things I want to do in the few years I have left.”

It was while former oil refinery rigger Tom was recovering from the successful treatment of a 10cm tumour in his chest last year, that he noticed he was slowing down. Despite getting better from the Hodgkin lymphoma tumour that had struck him down in 2019, the tiredness he felt was growing.

“I was expected to fully recover after my treatment and was only going back to hospital for a check-up every six months,” said Tom. “But then I noticed I could walk less and less each day. At first, I thought it was just old age, but then, during one of my check-ups, they spotted something in my blood.”

After various tests, Tom was diagnosed with essential thrombocythemia which developed into MF, causing the tiredness but also swelling his spleen and bringing pain in his bones.

He was put on the standard treatment for MF but his body was not responding well and in July he joined the XPORT clinical research trial at The Clatterbridge Cancer Centre, which is conducting several studies researching new treatments for a range of blood cancers.

The XPORT clinical trial is studying a new combination of drugs to treat MF and Tom is the first patient in the North West and only the second in the UK to be given this treatment. Clatterbridge achieved the fastest set-up time for the clinical trial in the UK.

This research is assessing the effects and safety of selinexor, an experimental medication which works by blocking a certain protein that causes cancer cells to multiply. This can lead to improved symptoms in patients. Around 300 to 450 people in 19 countries will take part in the study, which is due to last around two years.

Tom has been taking the therapy for a month and his blood samples are now more stable – which he is hoping will mean his tiredness will recede.

Tom, of West Derby, said:

“It is early days but the team think things have stabilsed. I’m just really hoping that the tiredness goes away and I can enjoy the things I used to do.

“I’d never heard of MF before they told me I have it and I’m sure most people who develop it do not know what it is. There are not many treatments for this type of cancer so this trial is a chance for me to find something that will be effective for me. But also, hopefully it may also help someone else through the knowledge they get from this research.”

Principal investigator for the study at Clatterbridge, Consultant Haematologist Dr Nauman Butt, said:

“The treatment options we currently have for MF are limited and there is an unmet need for alternative therapies. This new treatment works in a different way than ones previously and we are hopeful that the XPORT study will show real improvements in the quality of life for these patients.”

Clatterbridge Consultant Oncologist Dr Tom Seddon is treating Tom at CCC-Aintree, with more research being done at the site and a new laboratory set to open there.

Dr Butt said:

“It is a really positive step forward for research at Clatterbridge that we can now offer more clinical trials at our remote sites as well as our main hospital in Liverpool.

“We are developing more clinical trials that we can run out of CCC-Aintree, which is more convenient and closer to their home, for some patients.”